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Adrienne Dellwo

Lumps & Bumps: Fibromyalgia & Lipomas

By March 9, 2009

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Do you have lumps and bumps under your skin? A lot of us with fibromyalgia do. They're called lipomas, and they're non-cancerous tumors - basically, lumps of fatty tissue just below the skin.

In most people, lipomas are painless, but we're not most people, are we? We're more likely than others to have painful lipomas, possibly because the lumps can hit nerves, and our nerves are hypersensitive.

Lipomas that don't cause pain aren't a problem and don't need to be treated. You can treat painful lipomas with standard pain medications, but if they're still causing a lot of pain, you may want to talk to your doctor about treatment options. The main ones are hydrocortisone shots or surgery, and both can cause problems for us - some experts say hydrocortisone makes fibromyalgia symptoms worse, and recovering from surgery is a long, extremely painful ordeal for most of us. Also, surgery isn't guaranteed to eliminate the pain.

I have a ton of these things. I used to think they were inflammed and knotted muscles, but my massage therapist tells me otherwise. I have a hard time telling which lumps are lipomas and which ones are myofascial trigger points, especially since most of them are in my back, so I'm not sure if any of mine are painful.

While lipomas are common in us, don't assume that unexplained bumps are just lipomas. Have your doctor check them out, just to be sure. (The same goes for lumpy, fibrocyctic breasts - just because we're prone to harmless lumps doesn't mean we can't get cancer.)

Do you have lipomas, painful or otherwise? What helps with the pain? Have you had treatments for them? Share your experience by leaving a comment below!

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Comments
March 10, 2009 at 5:17 pm
(1) Jacqui says:

Dear Adrienne,
I was very interested in todays blog, re lipomas and FM. My primary care doctor seemed to think that I was making a huge fuss last year, when I insisted on a hospital scan of a painful lump in my L bicep, of some 3-4″ in size. The feeling was that I should simply take the doctors word for it that it was a lipoma – but of course I worried about the real (if small) possibility that it could be a sarcoma. I’m relieved that a scan has not indicated that – of course. But it is still causing me considerable pain, and I ve been made to feel that I’m a whining hypochondriac. (…”lipomas are painless”, they said….)…It was another episode that underlined the fact that medics understand FM very poorly: I have highly toned upper body musculature because of pain referred from my neck and back, and so my bicep is being aggravated by this lipoma with every minor movement. But what do I know? I’m just the patient….
Kind regards,
jacqui

January 21, 2011 at 1:14 pm
(2) Barb says:

Jacqui,
Lipomas should always be investigated. I just had lipoma excision, (on 7 of my worst ones on my thighs), over a week ago. My cousin died from liposarcoma on his legs and in his groin. My lipomas were well vascularized, inflamed and scarred inside according to the surgeon. The good news is there was no sign of cancer in the pathology report. I had ultrasound done prior to surgery which showed no differentiation between the muscle and the lipomas. From what I’ve read, if they are liposarcomas, they can be differentiated in the ultrasound. the surgery aftermath was very painful as I can only take tylenol due to vomiting from narcotics. I’m hoping that eventually with the removal of my worst lipomas, life will be a little less painful. My surgeon told me lipomas can be caused by a gene mutation or a missing gene that was supposed to tell your fat cells to stop growing after a certain time. ps.change doctors! Lipomas vascularize and can cause allot of pain and can limit exercise due to severe pain post exercise. Good Luck!

March 11, 2009 at 1:06 am
(3) Patti says:

Dear Adrienne,
I am writing, because I first was told, that I had erythema nodosum. This was back in 2002. I had what turned out to be a lipoma on my right calf muscle; and it was very painful. When I went to the doctor for the first time for this lump, they first checked to see if it was a blood clot. Then they came up with the erythema.
Now, in February of this year, I had the lipoma removed. The doctor said it came out in two pieces. My arthritis doctor was so kind to me. He was the one that finally referred me to a surgeon to see what was going on.
I do hav c,f,s and hurt quite a bit. I am scared because the surgeon’s nurse told me that lipomas generally do not cause pain.
I am glad to have found this, and to know that there are others out here that makes it a little more bearable.

Patti

September 19, 2011 at 7:01 am
(4) Rosemary says:

Dear FM friends, in 1968 I was deathly ill, after being treated for post delivery depression, maybe kidney infection, maybe Rheumatic fever , maybe, etc, finally a Doctor put a name , erythema nodosum ‘ to my miserable state. After 4 months , cortisone was the only things that made me fill that I could , would live. Since then it has been a long trip. Many years ago Mayo Clinic put a name to my vague aches and pains. FM, but most Doctors don’t believe in ‘it’. Even my husband says it is ‘just in your mind’, don’t get me wrong, he is very supportive but, just don’t put that name on it! This is the first time I have read other people talk about the lumps that I have all over my body.. Sometimes massage can be unbearable but mostly they don’t hurt. I never thought they cloud be removed, no Doctor ever said anything could be done about them. I am not particular vain but the large on which sticks out on the top of my left shoulder does bother me. I don’t like to ware blouses that have tight sleeves which show the lump. Thanks for the discussion. R.

October 1, 2011 at 3:34 pm
(5) michelle says:

i have these lumps but they are all in my biceps,when i had my last massage she said they were quite big a bit like popeyes!!!!

October 13, 2011 at 5:39 pm
(6) DeAnn says:

My Husband seems to think that it’s all in my head. He was there when I was dianose with Fibromyalgia. He heard the Dr. say it…..I have had lumps on my upper legs. Almost to my bikni line. I am seeing my Doctor today. I am wearing shorts so I can show him. Usally these lumps would be under the skin. But now they are coming up to the surface. I just wanted you to know that my husband treats me the same way. I hope that things get better for you.
Take Care,
DeAnn Zoll

November 26, 2011 at 11:23 am
(7) john B. says:

I have multiple lipomas, but I had a sudden onset of fever with severe joint pain including inflammation of tendons in both ankles. I then developed Erythema Nodosum in my arms and legs. To rule out pericardial inflammation, they did chest x-ray. It showed hilar adenopathy. I was a miserable mess, but that’s when things started getting better.

I found a great Rheumatologist who instantly recognized Lofgren’s Syndrome (an auto-immune variation of Sarcoid). He confirmed with blood tests and suppressed symptoms with Prednisone. Unlike full blown Sarcoid, Lofgren’s is manageable and usually resolves within a year – I’ve been “normal” for about 8 years.

If you have Erythma Nodosum with severe joint pain, have your doctor check for Lofgren’s Syndrome! Good luck.

March 11, 2009 at 1:06 am
(8) Patti says:

Dear Adrienne,
I am writing, because I first was told, that I had erythema nodosum. This was back in 2002. I had what turned out to be a lipoma on my right calf muscle; and it was very painful. When I went to the doctor for the first time for this lump, they first checked to see if it was a blood clot. Then they came up with the erythema.
Now, in February of this year, I had the lipoma removed. The doctor said it came out in two pieces. My arthritis doctor was so kind to me. He was the one that finally referred me to a surgeon to see what was going on.
I do hav c,f,s and hurt quite a bit. I am scared because the surgeon’s nurse told me that lipomas generally do not cause pain.
I am glad to have found this, and to know that there are others out here that makes it a little more bearable.

Patti

March 11, 2009 at 5:53 pm
(9) Sandy/Fighting Fatigue says:

I had never heard of lipomas but I wonder now if this is what I have on my upper back, shoulders and in my breasts. I see a massage therapist monthly and she is always trying to massage out these really painful knots and lumps I have but usually they don’t disappear. I will be seeing my doctor about this for sure. Thanks for the info!

March 12, 2009 at 11:49 pm
(10) Michele Williams says:

Thank you for this very informative post. I have multiple nodules all over my body. Some hurt and some do not. I have not found anything to help with the pain. Have you?

March 13, 2009 at 2:34 pm
(11) Shari says:

I faithfully read all the newsletters as soon as I receive them. Right now I wish I had seen this one about a year ago. I had a lipoma located in my lower back that was causing a lot of pain. I tried pain pills, muscle relaxers, physical therapy and finally decided to have it removed. I have to say that was the easiest surgery I have ever had. I only took 2 days off work and was pretty much back to my “normal” self within a week or so. Time will tell if I’ll get more but for now…so far so good.

March 13, 2009 at 2:45 pm
(12) Nancy says:

Hi,

I have/had what may have been lipomas. I must ask my doctor what they were/are. I had to have 2 removed from my fingers as they were so large they were always scraped and bruised from being hit as I would do normal chores.

Anothr one would have caused serious nerve damage had I not had it cut out when I did.

The good new is, since some of these are so very easy to remove, you can do it with a local. I had the last one done fully awake with a nerve block. It was really cool to be awake listening to what was going on.

I have had so many surgeries I didn’t need to have anesthesia pumped into me one more time. I have two more – one on my arm and another on my thigh. I suspect they are the same kind of thing. My PCP is aware of the one on my leg. Forgot to mention the one on my arm. There are just too many things to talk about at an apt.

Great article Adrienne.

March 13, 2009 at 3:07 pm
(13) betsy says:

I have tons of these lumps. One was extremely painful all the time, and my doctor thought I was wrong. It even hurt when I breathed in. Finally I went to a dermatologist and had it removed. She said the pain was from it pressing on a nerve. I am much more comfortable. The others are mostly painless, unless I am having a bad day- then they are achy to the touch.

March 13, 2009 at 4:10 pm
(14) Mandy McConnell says:

I think this is what I have on my knuckles and palms of both hands. They are so very painful that I can’t even hold a fork or pencil. I have been sent to hand specialists, and now going to be seeing a doctor in the pain clinic. If they don’t figure something out soon I may try the Mayo Clinic in Minnesota. I know they can do some amazing things there.

March 13, 2009 at 8:26 pm
(15) Lelia says:

Dear Adrienne,

I had limpoma on my left shoulder the size of a grapefruit. It had to be surgically removed. In fact, the surgeon told me the moment she made the cut it popped out on the floor (smile). This was over ten years ago. I have not had another that size since but have had problems with many cysts, including fibrocystic breasts.

March 14, 2009 at 12:07 am
(16) philly says:

I have lumps on top of both wrists. The left one is larger than the right. Whenever I’m in a flareup they enlarge,get hard and ache. Otherwise they’re soft or fatty as describe. By the way, when in a flare I can tell by these things getting hard and painful. That’s the first sign that I’m getting sicker. None of docs seem to think it a big deal. Thought it was unique to me.

March 14, 2009 at 4:53 am
(17) AMG says:

Oh my! I have a very big lipoma directly underneath my breastbone. Makes it painful to slepp when I lie on my left side. Initially the MDs thought this was just complex scarring from very intense endometriosis (3 surgeries). But now – thanks to all of you – I might have a different understanding of it!

March 14, 2009 at 8:49 pm
(18) Michele says:

I have what I assume to be Lipomas just about everywhere in my body. Too numerous to count and have had them since I was a child. They are very, very painful to the touch. I have recently gotten some in the bottom of my left foot and it is often hard to walk on it. This is just one more of the many things people with autoimmune diseases have to endure…

March 16, 2009 at 2:24 pm
(19) Ann says:

glad to hear others have the same weird thing I have, never wanted to ask a doc, thought they would think I was nuts

March 17, 2009 at 11:40 am
(20) Mel says:

Wow, thanks to all of your comments I am not as scared as I was two days ago about my sister. She had a mature lipoma surgically removed in Germany last year, but it just showed up again 2cm over her first one. Has anyone else that had them removed with surgery, get repeated ones? I will try to get her to come here and do the surgery for the second one. It’s right underneath one of her breasts, so I think it’s important to take care of it. Any good doctors you recommend in New England?

September 14, 2011 at 10:03 pm
(21) Cheryl says:

Yes. They definitely can come back! I had 18 of them removed from my arms and I was 46 when I had that done and my doctor told me that since estrogen feeds them and I was over penopause I had a good chance of them not coming back. No such luck, beside every scar that I have is another tumor! I search all the time to see if there have been any advances in preventing or removing them (without surgery) and I have not read anything credible.
I did not get them until I was in my 30′s and although I see after reading some of other people’s experiences I could be worse, it is a life changing problem. Especially when you feel that you have to wear long sleeves on a 90 degree day. I once was very attractive and although I do not have them on my face or legs, I have them everywhere else and they are horrible to me. So, I think for those, like your sister people have to be cognizant or understanding of what they go through. Never before was I an insecure person, but when you don’t like how you look you can’t expect others to either, and that is just how it is. I am lucky that I am not in physical pain and for that I am so greatful! Good Luck to your sister, just tell her that she is beautiful and its just a “bump” in the road, no pun intended.

March 19, 2009 at 9:54 am
(22) Lee Ann says:

I have multiple lipomas all over but mainly in my neck. They hurt a great deal and cause my neck to be stiff. I also have grainy muscles. When I run my finger down my leg, it feels like I have hundreds of pebbles on my muscle. Does any one else have this?
Lee Ann

May 12, 2011 at 6:29 am
(23) LC says:

I first noticed a lipoma on my left ticep almost 15 years ago. I had it removed. Since then, and most recently, the increase of these lipomas have exploded. I have almost thirty on my arm; from pea sized to quarter sized. I have five on my stomach, one on the inside of both knees, and about five on my back. That’s around fifty of these lumps.
This is very alarming. I also have symptoms of being very tired and have been dealing with memory issues. Dizziness sometimes/double vision. I’ve been to two neurologists and they have done MRI’s confirming I have some lesions on my brain. I had a spinal tap done in november of last year, but it did not recover any fluid. They wanted to do another one that same day, but I said no. I have another coming up in June.

Just wondering if anyone else has symtoms related with these lypoma’s.

May 23, 2011 at 9:23 pm
(24) Bette says:

You should do some research on Dercum’s Disease. It is a very rare disease. Many doctors have never heard of this disease. I was just diagnosed with it and I have the same symtoms you do along with a few more. And my lipomas came out very quickly and I have at least 50+ of them. I found out by an ultrasound and by a small biopsy where they removed two lipomas and sent them to a lab. Dr. Karen Herbst in San Diego, CA is the only specialist doing any research that I know of at present. There are many websites to look at and get some great info. Just search Dercum’s Disease also known as (AKA) Adiposis Dolorosa. Rare Fat Disorders Society website is a good one. Also Genome.gov & The Dercum Society. I do hope that this helps you and good luck.

July 4, 2011 at 7:27 am
(25) rm says:

Have you looked into leaky gut syndrome. Symptoms sound familiar. A permeable gut/intestine lining will let toxins and fats into your blood stream and tissues., causing a realm of problems. There are many great supplements to help with this, see a naturopath, do some reading on this. A change of diet with gastrointestinal support supplements may help.

June 11, 2011 at 6:38 pm
(26) Vivi says:

Lee Ann,

I realize that you’ve made this post over 2 years ago, but I just happened upon it now…
In regards to feeling as though there are hundreds of pebbles on your leg muscles, I have the EXACT same thing.
I’ve noticed “lumpy”,”grainy” muscles in my upper arms & forearms, but the muscles on my outer thigh, that run from my hip to my outer knee are the worst. If I , or anyone else press on these nodules, I see stars! I thought everyone’s outer thigh muscles were this tender, until my husband told me that he had no idea what i was talking about! He couldnt believe how my muscles felt like ropes with nodules all over. I have never let a massage therapist ever press hard enough to ‘break them up’, because they are intensely painful & I’m not exactly sure what they are.

I do have many other FM symptoms, but I wonder if you’ve ever found out anything about these “pebbles” & have found a resolution?
Thx:)

July 13, 2011 at 7:59 pm
(27) amy says:

hi le anne and vivi,ive just discovered pebble like lumps on stomach in middle of ribs and towards my left side i also have alot of fm symptoms…wierd did anybody get any more info?

August 23, 2011 at 6:50 am
(28) Rebecca says:

Hi Viv and Lee
I have just come across this article too. A link was posted on a board i am a member of. I have a very rear disease called Adiposis Dolorosa or Dercum’s Disease (DD). It is characterized by many painful lipoma. You may want to look into it as a possibility? There has been some research done recently into whether FM and DD are related or even part of the same disease, it is not clear yet. They do have a lot of similar symptoms in regards to pain though often not all the trigger points in FM are there. Generally if there are multiple painful lipoma it is most likely DD is my understanding. Here is the site of the Dr doing the most work towards finding out more about DD. http://www.lipomadoc.org/dercums-disease.html.

September 24, 2011 at 12:03 pm
(29) Sherrie says:

Vivi,
I could have written your post especially the ones down the outer leg. I thought everyone had this too. I can bump my leg with my purse and it’s painful. I never knew this was part of fibro. It’s good to know I’m not crazy. I have alot of large ones too and was told years ago they were lipoma, but everything I read said they weren’t supposed to hurt, but the ones down my leg seem to hurt the most. I think maybe it follows a nerve, not sure. Anyway it’s good to know I’m not nuts. I even asked my sister and husband one day, doesn’t your leg hurt like that? I thought everyone did too. Anyway thanks for posting. It’s like wow, that’s exactly how I would describe my pain down the leg.

September 15, 2011 at 9:25 am
(30) Lee says:

Yes my wife has this just as you describe……not so much in the neck but she does have grainy muscles down the side and front of her thighs, on the inside of the knees, buttocks, hips and lower back and sometimes on the ribcage and breasts when it is really bad. She also finds them very painful.

Lee

March 20, 2009 at 8:12 pm
(31) Anna says:

I have a non-painful lump under my left lower arm area. It doesn’t hurt unless I try to move it around, which it doesn’t move. So I just live with it.

March 21, 2009 at 1:58 am
(32) marti says:

Didn’t realize this is so common,but nice to know I’m not alone. Mine first started in November of last year and now it seems I have a new one everyday. Unfortunately mine hurt, they are in my arms, my neck, my scalp even on my forehead, some are getting close to the size of golf balls. They say you can have them removed by liposuction..wonder if my insurance would pay for that. I’ve had some luck using Lyrica for the pain, as some of it is more neuropathic in nature, ie burning stinging pinching, stabbing. When I’m sick they hurt worse..don’t know why just putting their two cents in too I guess. And I use to hate having freckles..wish I could swap now.

April 19, 2011 at 2:30 pm
(33) SG says:

sounds like Dercems diease, usually causes many sm lypomsa all over body, treatment with steroids.

March 21, 2009 at 1:41 pm
(34) Carolyn Marriott says:

Thank for this info. I have been a surgical nurse for 35 years and have removed many lipoma’s from pts. never thinking those terrible knots in my shoulder and neck could be anything else. I have lipoma’s every where and my doctor keeps a close eye on them. I have been going through a lot of swell in my left leg and just had another CT done. If I would have known more about FM, but I could not believe I could have this due to the fact there are no true tests out there to determine FM. Well I am here to tell you it is very real and these lumps are nothing to truly worry about. Have a blessed week end and week. Carolyn

March 23, 2009 at 3:01 pm
(35) marg says:

i would like to say thank you all
thank god for your infro..i have been dealing with this now for two years trying to find out why i have all these different lumps.
i can’t even tell you all the differnt doctor
and test i have had.
the first one showed up in my left arm and caused such pain the lump is the size of a golf ball. this year i found more on my left side again by my ribs and in my left leg. the lump in my leg has cause me great pain and trouble walking…i have had acupiture and it helps.
i do find that warm to hot shower help a little and a heating pad at night will relax me.
from reading eveyone comment’s i notice that everyone has lumps on the left side of there bodies does this mean anything.
also i would like to know if anyone has trouble with having a fatty liver.could it also be part of FM.
if so please comment.
thank you all for making me know am not crazy and not alone…everyone stay well and happy.
marg.

if so please send a comment.

March 23, 2009 at 3:30 pm
(36) andie says:

My friend and co-worker just pulled this for me. On Wednesday, My doctor told me these lipomas don’t hurt and that I was making them hurt by rubbing them. It was no use explaining. I had all ready heard they were a symptom of fibromyalgia from a massage therapist who had spoken to a specialist. My doctor said, “There are no lipomas with fibromyalgia.” I was so confused. I was soo angry. I’m sitting here at work crying due to the pain and my leg has swollen up. My husband and kids had noticed my leg yesterday which has been in great pain for 3 weeks now shooting up towards my hip. I cannot sleep, sit still and it hurts to walk. People think I’m crazy. I can’t bear to have people touch me or lay my arm on my desk. It just hurts and burns. I think it’s terribly sad to see all of these comments- a replica of my own- stating that we are scared because our doctors say “Lipomas don’t hurt” so we think it’s cancer or something else. My arms don’t feel like my arms anymore. I have been so depressed because people don’t understand how badly it hurts. I have meds for the first time this Thursday. We’ll see. She said I had an extreme vitamin d deficiency as well. She didn’t even look at my leg. I was getting ready to write a will because I was sure I was dying of some kind of cancer. They did an MRI of my neck and it was a lipoma, not my lymph nodes thank god. I have thickness on my arms and legs over my bones. Feels soft. I am hypersensitive to sounds, always have been. Is anyone else? alarms, humming and buzzing noises….

March 25, 2009 at 1:10 am
(37) Adrienne - Your Guide to FMS & ME/CFS says:

Andi,

Yes, the sensitivity to noise is very common in us. When I used to drop my kids off at daycare, some days the noise would hit me like a truck and stir up all my symptoms. I really can’t handle repetitive noises, especially when they’re high pitched.

March 26, 2009 at 8:56 pm
(38) BetsyT says:

I have lipomas over my sacrum in my low back and in my hips – many of them. I have had one removed from my abdomen by my surgeon.

I now know from becoming certified in First Line Therapy (to help people regain their health and make significant therapeutic lifestyle changes) that many of us with FM don’t have enough Lipase to break down our fats so we store fat in lipomas throughout the body.

I have just started taking a full spectrum enzyme product because I don’t digest anything all that well but you can get Lipase separately to take with meals.

I don’t know if the ones I have will go away but they say if you take enzymes between meals they gobble up scar tissue, fats, etc. in the body. Worth a try anyway.

BetsyT

March 29, 2009 at 12:55 pm
(39) celeste says:

Hi! I’m new here (43 yrs old)and not yet diagnosed with fibro, but have alot of the symptoms and MULTIPLE lipomas (arms, thighs, back, abdomen)and continue to keep getting more! Most of them hurt. My mom is 66 and has been diagnosed with FMS and has lipomas. She truly believes I have FMS too, so I am going to checked. Until I read this, I never heard of a connection between the lumps and FMS! Mom sees a rheumatologist, which she is not happy with and so we are looking for another doc. Does it have to be a rheumatologist or can another specialist help? Thanks for all the good info!

March 30, 2009 at 3:53 pm
(40) Adrienne - Your Guide to FMS & ME/CFS says:

Celeste,

You don’t have to see a rheumatologist – any doctor who’s knowledgable about FMS can diagnose and treat it – but it can be hard to find knowledgable doctors. With all of the neurological discoveries in recent years, many neurlogists now treat us, and in my opinion, are generally better qualified to do so. A lot of rheumatologists still want to treat us like we have arthritis, when we actually have a disordered central nervous system.

I have to say, though, that the speciality is rarely a predictor of how well the doctor can treat FMS – it really is dependent on the quality of the doctor and how much time they’ve put into learning about this condition.

If you’re concerned about any kind of legal issue or disability claim, however, a rheumatologist’s diagnosis is generally better regarded than a diagnosis from another doctor.

Best of luck to you, and I hope you can find some effective ways to treat/manage your symptoms before they get too severe. Early treatment is key!

April 27, 2009 at 9:58 pm
(41) fran says:

Hello…glad I found this website!! I just had an MRI anddetermined that the 4cm lump in my left bicep and inner left elbow are lipomas. I too worried about liposarcomas…the pain some days is unbearable…now have a lump on my left inner wrist..it too is painful,…I will see what happens in the next few months anddecide waht to do. I’m not convinced that surgury is an option.Has anyone tried any holistis treatment? Fran

May 16, 2009 at 12:00 pm
(42) sandy says:

I have one on the outside part of my lower legs from since the age of 8. Its been a living hell when I walk. I have been to several doctors. They don’t seems to understand the amount of pain this gives. I have one each on my upper arms but these are not painful. The last doctor I visited told me they are fat lumps and can be removed. I am worried that I may not be able to walk after. I am glad I read you guys stories I will now go and have them removed. Thanks guys.

September 3, 2011 at 8:43 am
(43) B says:

Had a golf ball size growing on top of my left ankle for 4 years before my father took me to a doctor. just a fatty tumor. he said it would take one hour in his office, but it took 4 hours in the hospital as it had intergrown with my ligaments and was strangling them. I wore shoes to work thathad a strap over the ankle and so I think that’s why dad finally got me the surgery, that and ifit got bumpped it hurt like h-ll!!!!I’m 50 and walk just fine.

May 20, 2009 at 5:50 pm
(44) jerri says:

Hi i am 27 and have fibromyalgia . I have been been worried about spots i have been feeling in my neck and under arms and i even have really sor Breat. and i ran accross this web site. i have been so scared to even ask the doc what this could be , and it all makes since.. My skin hurt to the touch expecially in my torso area. The lumps range form pea size to maybe a marble and hurt soo bad to the touch .. I love this web site and it helpe me to understand a little more about haveing fibromyalgia.. Now i am not so scared to talk to my doc!!

June 1, 2009 at 3:54 pm
(45) Samantha says:

Hi,
I am awaiting lab results from my lipoma remvoval. It was on my left shoulder about the size of a baseball. The odd thing, I started working out with weights and this large lump appeared out of the blue. My husband came home one evening and went to hug me and said what is that huge knot on your shoulder. Well, that was 3 weeks ago. As I stated, I had the lump removed in my derm’s office with local anthes. and let me tell you it was awful! And painful. Mine did not just pop out. He dug around for about 45 minutes to ensure he got all of the growth because it was entangled in my nerves and muscle. I am still in pain and am very sore. I hope it is a lipoma and nothing else.

June 4, 2009 at 10:29 pm
(46) Cheryl says:

I can’t believe what I’m reading here,I am NOT imaging the pain from the lipoma on my right upper arm!!!When I went back to my surgeon about the pain,before I could speak he said you are not having pain and refused to speak about it.Some times you do qeustion yourself when so many doctors refuse to believe not only that you have FM but you can be in constant pain.I have had it for 25 yrs as well as blood clots and stasis ulcers.not a good life but glad I found others like myself..thank you

June 17, 2009 at 9:25 pm
(47) Michelle says:

I’m glad I found all your comments here. I’ve been dealing with literally thousands of lipomas, but they are typically only painful upon pressure. I also have occasional skin pain. One doctor told me I have fibro, another says no, the pain is from my spinal stenosis, and on and on. The dermatologist tells me it might be Dercum’s Disease. Is anyone familiar with whether the lumps associated with fibro are necessarily also Dercum’s Disease, or are they two separate conditions?

Thank you all. I wish you many more good days than bad!

June 18, 2009 at 2:00 pm
(48) Adrienne - Your Guide to Fibromyalgia & ME/CFS says:

Michelle,

Dercum’s and fibromyalgia are two separate conditions, but it can be extremely hard to tell them apart. People with fibromyalgia are prone to lipomas, and people with Dercum’s can have fibro-like pain.

You mentioned skin pain, and that’s a common fibromyalgia symptom that’s only found in a few conditions. It’s called tactile allodynia, and you can learn more about it in this article: 7 Types of Fibromyalgia Pain

June 24, 2009 at 7:52 pm
(49) Michelle says:

Hi Adrienne, As a follow-up to my last question regarding Dercum’s, do you know how to tell the difference between the lumps of that disease and FM? My doctors seem clueless, although I was diagnosed with FM earlier. My zillions of lumps are tiny – BB to pea-sized, often come on very fast (overnight practically), but they don’t seem to have grown past that size in the past year. I generally don’t have pain from the lumps except very occasionally, and even then I can’t tell if it’s coming from the lump. Some are tender if I press on them depending on the day. As you mentioned, the conditions overlap, but strangely both list fatigue, muscle weakness, and problems sleeping as symptoms, and these I don’t have. Do you have an opinion? I’m sorry to bug you again…I’m hoping maybe this will help someone else out there too!

June 29, 2009 at 5:54 pm
(50) chronicfatigue says:

Michelle,

Sorry, I don’t think there’s a difference in the lipomas associated with each condition. Your best bet is probably to look around for a doctor who knows about Dercum’s, since most don’t.

Don’t worry about what symptoms you don’t have — we all have our own set of symptoms and nobody has them all, fortunately (since there are more than 60.)

July 7, 2009 at 12:53 pm
(51) Bridgette says:

I was relieved to read these posts stating that other people have painful lipomas. I had one removed from the back of the base of my neck jsut over 2 years ago. It was painful but my doctor said that wasn’t causing the pain. (It was biopsied and dianosed as lipoma.) Funny thing is my pain reduced after removal. 3 months later it grew back bigger. I had removed again about 8 months after the first was removed. It was removed by a surgeon who said it was deeper then they thought. The surgeon said no need to biopsy again. It has been over one year after the removal of the second one and ir is growing back a third time. I am not sure what to do about it. My pain increased again about 2 months after removal of the second but I couldn’t feel the lump until a few weeks ago. Now I know why the pain was there. At this point I don’t know what to do. Have it removed AGAIN or just leave it. These really suck. My new doctor says the lipoma that grew back a third time is normal and is not causing the pain. Urgh.

July 8, 2009 at 9:10 pm
(52) Dave says:

Bridgett, the lipoma grew back most likeliy because the surgeon didnt excise the whole lipoma, it even a small piece is left behind it will grow back. I dont have fm but I have multiple lipomas. None of them are ever tender. The only time they are uncomfortable I think is when they first start to grow and are establishing a position in the fascia or subcutaneous tissue. I think they are painful to people with fm because they are somehow irritating the surrounding tissue, everything I have read about them has never suggested they are painful or tender. I think a lot of the people are mistaking them for tender points of trigger points. I have treated the lipomas surgically and recently with lippodisolve which worked almost completely eliminated a bunch of them and reduced the size of nearly all of them but it took about 12 visits. I plan on taking the summer off and continuing in the fall. I just started taking Biosuperfood which makes some aggresive claims about getting rid of Lipomas so I bought 3 months worth. I will also try to change my diet a bit as well. So Bridgett what I would do is find a better surgeon.

July 26, 2009 at 10:40 am
(53) lob says:

Yes, Dave you are right–if the surgeon leaves a tiny piece behind it will grow again.
I had 2 removed from my inner right arm and one has started to grow back the other has gone.
My doctor described them as small pieces of broccoli and that they would pop out of a small incision when removed but all had to be removed.
The pain part is that veins and nerves start to grow through the fatty lumps and this is what makes them painful. You may find that they look slightly blue more especially under some lights–this is the blood in the veins–I first noticed the blue bit when I was trying on clothes in a shop!!
I have some tender and some not but they are spreading.
I was told mine were probably an inherited form–and no more has been done
At 56 I feel I have a terrible memory and brainfog but that could be just ‘an age’ thing!
I have started taking enzymes–I just ‘feel’ that is what I need and a multi-vit but apart from that I will wait and see what happens
Good luck to everyone with the lumps & bumps!

August 2, 2009 at 12:27 pm
(54) jhewels says:

Lipomas that press on nerves is not consider fibromyalgia but Dercum’s Disease ther are the type that occurs in obese patients and ones that occur in non obese patients. after half my life trying to figure out what was causing my inner thigh, thigh pain, and pain around the knees, I discovered on my own Dercum’s Disease. How I discovered it was that I listed the symptoms that I had, and I realized I couldn’t describe the one in my inner thigh. It was not the muscle exactly and it wasn’t bone but it was in the fat. I googgled that I had lump in my fat that hurt and what came up was Dercum’s Disease. Upon reading about it I was shocked after all these years that I was reading about symptoms that describe me to a T. I went and faxed it to my doctors, told him it was inportant that he read it. I got referral for dermatologist and had biopsy that confirmed it was lipoma once the biopsied was remove I had pain relief for first time , Dermatologist said it was on a nerve which is what Dercum’s is all about: painful lipomas or lipomatosis attached or compressing a nerve, ther is no cure or treatment and can cause you tobecome disabled and it is a slowly progressive disease. I have fibromyalgia secondary to Dercum’s. any one who has lumps that are movable, rubbery or dough below the skin in the thighs,knees, arms, elbows anywhere there is fat except face and hands and swellin of below the knees to ankle lipedma has Dercum’s. The done side is not many doctors are familiar so you have to educate the learn all you can about the disease. I pulled up a brochure of microsoft office and put in the information, where to find it, treatments and sources. when I got to the doctors I give them the brochure or fax info first. don’t consider it fibromyalgia before looking into this disease. Jhewels

August 15, 2009 at 11:19 pm
(55) Michele says:

Hi Everyone, I have just found this site and am very interested in all your comments on Lipomas. I was wondering if anybody had advise on after surgery pain. I had a lipoma removed 6 days ago from my left shoulder blade and to be honest the pain is getting worse by the day. It’s like somebody is putting a knife in my back everytime I move my arm. The scar looks perfect, there doesn not appear to by any infection but no matter what painkillers I take they seem to do nothing. Any help/advice would be very welcome. Thanks, Michele

August 18, 2009 at 3:41 pm
(56) Nicole says:

I have hundreds of these things, some large, as large as a marble and about that hard, some are loose and cover a larger area. Some are small and very hard nodules. These are in my legs, my thighs, behind my knees, but they are so painful I cannot stand it. There is nothing that can be done about it according to my doctor, but then my doctor cannot seem to do anything about any of the problems I have, and I now walk with two forearm crutches, which I did not need a year ago. Unfortunately, my insurance, medicaid or some form of it, doesn’t cover anything much except morphine and tests that reveal that I do have degenerative disc disease and arthritis, but I am not getting the help I need and do not expect that I will. If I thought I could remove these myself I would, yes that sounds crazy and no I won’t do it but it does make a person feel desperate when no one will listen and no one will help. The pain is unbearable. I will have to be crushed in a machine before I will get the help I need, that is what I feel it has come down to, as I have tried everything the way one is supposed to, been patient and methodical, done everything the “right” way, but nobody cares. It is just hardened fat that is putting pressure on my already over-sensitive nerves and that is just not enough. Facet joint injections left me with more pain than I had before having them, I am now almost bed-ridden and am waiting for my SSD hearing, another 9 months or so. Lumps of fat that get hard, there is a name for them other than lipomas but I can’t remember the name. No one really cares about e anyway.

August 22, 2009 at 11:54 pm
(57) Wolf says:

Hi. My lipoma was on the kidney; it’s been removed but for those with lipomas all over be aware this is a lipoma too ; causes NO pain and was only found because of a job injury that resulted in a CT of the abdomen. They can lead to dangerous hemorrage and although rare dr’s skip biopsy for NSS to rule out malignancy. I get a 6 month CT soon and fortunately there’s only a 5% chance of regrowth. Because of mine’s placement they left positive margin. It’s called renal angiomyolipoma.

August 28, 2009 at 4:20 am
(58) Rajesh says:

Hi all, I found my first two lipomas on my left fore arm about 25 years ago. Then I gradually developed so many of them in my both upper arms, torso then down to my both legs. Back in 2002 I had removed 22 of them from my body(70% of total) but the number increased rapidly in my entire body after the surgery. I have stopped counting them, I might have more than 300 in my body now. Luckly non of them are painful. I am thinking about removing about 8 of them again as they are large and not looking very good.

September 10, 2009 at 11:18 pm
(59) linda says:

I am very interested in limpomas. I had gastric bypass and with the weight loss I am seeing and feeling lumps all over my body. What I would like to know is, what happens if anything when you physically pinch them until they break up? I have searched the web and could not find anything. THanks, Linda

September 25, 2009 at 6:31 pm
(60) CHERYL says:

Well,I finally had my lipoma removed on Aug.14th from my right upper arm.Surgery went well but unfortunatley,the ‘dissovable stitches’ became infected and an abcess developed so took a little longer to heal.Thankfully I finally had enough of my Dr.s rudeness and have found a wonderful new one.He insisted on all new bloodwork and found I have a very low calcium/potassium levels which he says can contribute to muscle pain.Now taking a supplement as well as Robaxacet and will be evaluated next month…here’s hoping

October 7, 2009 at 1:04 pm
(61) Migraine says:

Excellent information is very useful

October 7, 2009 at 8:39 pm
(62) keeter says:

Hi Everyone!

I have had fibro for years but in the last two years I started having more interesting symptoms. The lumps started increasing in number all over my body. My thighs swelled up and when they went back down I had folds like elephant legs. I gained weight for no reason. I was more fatigued and in a new way. All of that was making me start to ask questions but I kept getting the ‘It’s your fibro, just lose weight and exercise.” When I started bruising all over I knew something else was going on. I, too, looked up “fibromyalgia lumps under the skin”. The first article I found says that lumps are common in fibro but that it is possible it is Dercum’s Disease. The article goes on to talk about the symptoms of Dercum’s. Well, that was me! I then started asking doctors about it. Got the same “I don’t know, lose weight” response. FINALLY I talked to my fibro doctor. He googled it and within a minute agreed with the dignosis. (It’s also called Adiposis Dolorosa which he had heard about.)

I belong to a support group at http://www.mdjunction.com/forums/dercums-disease-discussions

If you read through our messages you will hear the pain of each of us going through trying to get someone to tell us we really DO have something else wrong with us and trying to get a diagnosis. Many of us are convinced that many people with fibro have it but their doctors are telling them that lipomas don’t hurt, lose weight, they’re imagining it and worse. Sound familiar? Dercum’s is classified as a rare disease. We think it would be more well known and researched if all the people with doctors who never heard about it got documentation and insisted that they pay attention.

It’s a tough road! But if you think you have something more than fibro, please please go check out some of the Dercum’s sites.

The article I mentioned is at http://www.arthritis-treatment-and-relief.com/lumps-under-the-skin-fibromyalgia.html

The ONE doctor who researches it has a great site with much information. It is http://www.lipomadoc.org. Look under Adiposis Dolorosa. The article she mentions in her footnotes is especially helpful as it talks about the common symptoms Dercum’s people have.

Please feel free to sign into our support group and ask questions. If you’ve got it, you’re not alone – or nuts.

October 25, 2009 at 1:49 am
(63) Judy Bogard says:

I have fibromyalgia and a painful lipoma on my lower back and also a large one on my stomach that was caused I think by a tummy tuck 10 years ago. I didn’t know about the connection with fibromyalgia. I am going to tell my plastic surgeon about this and see if my ins will pay to have this removed. It is so big it makes my upper stomach look bigger than it did before my tummy tuck.
Judy Bogard

October 30, 2009 at 7:06 pm
(64) Sue says:

Wow-there’s a name for these things. Mine are mostly in my back but while getting a freebe massage in a store recently, the lady said they’re also in my arms. The ones in my back are very painful when pressed on. At least now, I know what the knots are called.

November 1, 2009 at 1:53 pm
(65) Heather says:

philly, look into “Ganglion Cyst”

They’re harmless but can be painful. I have one on my wrist, on the top.

November 3, 2009 at 2:40 am
(66) Mary V says:

Adrienne,
I just stumbled on this site by accident and how enlightening. I have had a very tender area like 2 peas in my left upper thigh for years. The pain seems to extend about 6 inches downward from the lumps as well. Doc says lipoma. MRI showed nothing. I am so glad to hear of the connection with FM. It may explain why it is so tender. I will also look up Dercum’s Disease…
Mary

December 4, 2009 at 5:38 am
(67) Maggie R says:

I had Lipoma surgery for a large one on my ankle four years ago right after a total knee replacement – recently I discovered one on my other ankle and have since had -the other knee replaced – I have to decide whether to have surgery again – possibly will still be painful. I have other on my arms – but no problems – an internist as just informed me that I have fibromyalgia which I hope will slow me down I tend to overdue but with aquasize and walking hope to feel better. I am 70 and never heard the word Lipoma.

December 22, 2009 at 2:43 am
(68) Mike says:

Hello everyone. My wife is a fibro sufferer and has a lipoma, as she has been told by her doctor, on the left hand side at the base of her spine. She pretty much has constant pain in that location that radiates down her left leg. Of course, the doctors don’t want to do anything about it because everyone knows that lipomas are harmless and painless (that was sarcasm btw). Some nights I have to massage her for hours so she can fall asleep. I think that the lipoma may be impinging on a nerve and causing a lot of her pain. Wouldn’t a simple MRI confirm or disprove this theory? Does anyone else have a similar problem?

May 24, 2011 at 8:51 am
(69) Lee says:

My wife also is an FM sufferer and I am a massage therapist. My wife does not have ‘single’ lipomas but many that present like rough hessian under the skin or small gritty, stony lumps and bumps in the front of her thighs, buttocks, insides of the knees and, if the attack is a bad one, in her waist, breasts, calves and the point of the ribs just below the sternum. These lumps and bumps come and go and seem to move around. When they are very apparent in her buttocks it seems to coincide with bad sciatica in both legs but more often the left leg. It appears to me that the lipomas are pressing on and crowding the sciatic nerve and that is what is causing the sciatica. When she doesn’t have sciatica the lipomas are not evident. I give her a massage and then use a hot, wet face washer to actually grasp and lift the buttock muscles. This seems to relieve the pressure on the nerve and at the same time the lipomas seem to quickly dissipate. It brings her almost instant relief. As she says…..not altogether romantic but if the telling of this technique brings relief to just one other person then we are happy.

September 2, 2011 at 2:21 am
(70) Joanne says:

You may have informed me finally from your explanation about these lipomas and my constant sciatic/knee pain that physical therapy doesn’t help. It has been over a year and the docs have sent me everywhere but I have multiple lipomas and maybe one is resting on my spinal nerves. Bless you for taking such interest and care for your wife. I will look into this possibility. Thanks for the good info! I am not crazy!

December 22, 2009 at 4:49 pm
(71) keeter says:

Mike,

The Dercum’s lipomas don’t appear on standard x-rays or MRIs. Check out some of the Dercum’s sites like http://lipomadoc.org/pdf/K.Herbst-AD%20is%20More%20Than%20Painful%20Fat-The%20Endocrinologist.pdf

She describes the symptoms found in Dercum’s patients and what has happened with some treatments. Lumps DO hurt in Dercum’s! It is definitely hard to find a doctor who has heard of it and who will treat you but it sure helps to know what is causing it! It’s also very common for lumps to grow back after they’ve been removed. Gotta love this disease!

I wish her good luck and thank YOU for being such great support!

Diane

December 24, 2009 at 12:13 am
(72) Dan says:

I just learned more about Lipomas after having some painful nodules around my right breast. Thinking it might be breast cancer, off I went to a surgeon. I had a mammogram and then an ultra sound – nothing. Finally had surgery and two of the nodules taken out for a biopsy. Anyway, just lipomas, and not male breast cancer.

December 29, 2009 at 11:50 pm
(73) Valetudinarian says:

Adrienne and all,

Ya’ll may think this comment strange, but I hope you all read it as it could be related and maybe some help.

My dog has fatty tumors – lipomas. My local veterinarian said they are common in my dog’s breed and with older age. They said there was absolutely (ha) nothing I could do, that the options were to excise the tumors when they interfered with her gait. Apparently, in between vet visits my dog’s lipomas became too big to excise!

Knowing not to take any doctors word for anything as a sufferer of FMS, CFS and CFIDS for many years without diagnosis and treatment, I go searching. In fact, I somehow asked a Vet on About.com! I was fishing, not expecting anything, but I got an answer in about 15 minutes! This vetrinarian said to try Essiac tea (E-Tea). I tried it and the lipomas did shrink after about 6 weeks. Unfortunately, I stopped the e-tea and they are back to the same or larger size. I gave her 2 capsules with her food a day. I am restarting the E-tea again.

I am not advocating anyone take this, but please research it! Who knows? I think it comes in a tea form from a website selling hulda clark recipes. I got mine in capsule form from nature’s something company. My local naturopath sells it as well.
I am very interested in the comment advocating lipase enzymes. I have several lipomas as well and did not realize it was related to FMS.

I find it very hard to believe that something cannot shrink lipomas and/or if some imbalance in the body is restored that it will not resolve.

I wonder if there is canine CFS?!? My dog does sleep an awful lot!!!:)

January 5, 2010 at 11:50 pm
(74) nick says:

I am 36 & have about a dozen- mostly on abdomen, i had 2 removed 5 years ago and from my wrist. I first noticed one near my lower jaw when i was less than 10 years old- sometimes it gets really swallon and hurts (maybe once a year) but most of the time they only hurt when i mess with them- in a nervous state- maybe cut out all fatty foods comletely and loose them all with rest of weightloss?

January 22, 2010 at 11:15 pm
(75) Doonya says:

WOW! They claim Dercum’s is a ‘rare’ disease. I think it’s just underdiagnosed. In Sweden, it’s not considered rare. DD (Dercum’s Disease) was actually identified in the late 1800, long before FM.

You don’t have to be overweight or have lipomas to have DD. There are 3 types. Type II causes generalized, diffuse pain in fatty tissue. One of the many alternative names for DD is fatty tissue rheumatism.

I’ve been miserable for yrs and I’m only in my 30′s! My PCP thinks I have FM but I’m sure I don’t. He isn’t familiar with DD and didn’t know there was a type that didn’t cause lipomas. Anyone who has FM can tell you how painful a Tender Point test is. Well, tender point tests don’t bother me. Only in 2 or 3 places. To meet the criteria for FM you have to have pain in at least 11 places.

I’m going to try my own treatment and see how it goes.

I wish u all the best. ; )

February 21, 2010 at 4:02 pm
(76) cynthia says:

My husband has this fatty soft tissue under his elbow.You can’t see his elbow. On the other arm you can see his elbow.
I am worried . Could be possible i take i picture of and i’ll send it to you from my yahoo.

Guide Response: I’m not a doctor and I can’t diagnose him. The good news is, if it’s a lipoma it’s harmless, other than the possibility of causing pain. You should make sure he sees a doctor about it, as it could be from many different causes. Not all doctors think of lipomas, though, so it’s a good idea to bring it up. ~Adrienne

March 21, 2010 at 1:01 am
(77) Bill says:

I have had Lipomas for years and believe me, they can be painful and disabling. (Vascular Angio Lipmoatosis) I have had surgery many times and have had close to 1000 removed so far. They attach to muscles, nerves, veins, and organs.
Originally I was going under a general anesthetic to have them removed, and would have around 70 at a time removed every two years. Now I go in every two weeks for approximately 4 to 6 months a year to have them removed with a local. Repeated General can be hard on your body.
I’m 45 now. My first tumor I remember was removed when I was 18.
The tumors, regardless of opinion, CAN be dangerous and painful.

Imagine standing, close your eyes, than picture over 100 pliers pinching your flesh all at once. It actually tightens your body making it hard to move or stretch. If you sit, the backs of your legs hurt. If you lay down, your side or stomach may hurt. If the clothes rub you too much during the day those places hurt.

It can be exhausting. Many of the Lipomas I’ve had removed have been connected to a vein or vessel so cauterizing was necessary. Thus, liposuction type treatments are not feasible and in all essence, are dangerous.

I once lost the feeling in my right leg for a few years due to nerve damage. After another surgery, years later, the feeling came back. For the first few months, just my clothing touching my “new” leg could drive me nuts. It actually was a pretty cool experience if you can call it that.

It is very possible to have them removed. Its outpatient. I do 7-10 at a time with a local. That way i am still mobile and, for the most part, can still take care of myself. YOu will however, not be able to do much for the first few days. I stay home after that. No driving or any activity really. Rest so it heals faster. No, its not fun, but the mobility that is gained after is amazing.

Don’t let them get huge. They can become inoperable and at some point, could be fatal.

I would much rather have some scars (not too bad really) for as many as I’ve had removed.

Keep in mind. I am not a doctor. I am just a person receiving treatment for this disorder and am hoping I can shed some light on it for others and in the same token, maybe learn something myself.

I feel lucky to have the doctor I do, as well as his nurses and staff. I’ve been going to him for about 13 years.

If anyone wants further information on healing times or things to do to prepare ahead of time before surgery to make your life easier, please ask. I have had so many surgeries I have lost count and have learned a great deal in the process. If you have any ideas or experience I’ll be happy to listen to that also.

What makes me keep going ? About 11 years ago I was sitting in the front yard. I had planted grass there and kept watering and checking it. It was a small area on a little hill by the sidewalk. One morning I went out early to watch the sunrise. As I sat there, I literally watched the grass poke through the ground. I was able to watch the grass grow. In all the confusion and pain I was able to see something amazing and also see that there are so many amazing things in the world others take for granted.

I watch so many people rush right through there lives and missing so many great things in the process, while many of us are happy to feel the sun on our faces, to be able to walk on our own, to have just a little less pain knowing that having “no pain” is not an option. Life is a gift, plain and simple.

March 29, 2010 at 11:50 am
(78) shellbee says:

Wow , it does seem to be under-diagnosed. I believe, for me that predinisone and corticosteroids for my Asthma and surgeries that I have had, have caused Dercum’s in me. I hope this blog sparks some interest to doctors out there.

May 10, 2010 at 11:05 pm
(79) Pearl says:

I am so glad that I ran into this site. I have these so called lipoma’s for the last 5 years and they are all over the place. They have become more and more painful but I can’t get my Rhemo doc to pay attention to the pain I am in. The doc feels that its just Fibro but I also did some research myself concerning Dercum Disease and I believe that I have both Fibro and DD. The problem is that I also have lupus, relapsing polychondritis and I am carrying the gene for Ankylosing Spondylitis. I became ill from taking so much predisone and 2 years after I stopped taking the steroids the lumps started to pop up all over my back, arms, and both sides of my abdomen. With the steroids I developed Diabetes and now have high blood pressure. I had a biopsy done on a lump I had on my abdomen 10 years ago and they said that I had panniculitis erytheme nodosum.

I am so lost I don’t even know what to do all I know that these lipomas are causing me severe pain and it goes in one ear and out the other of my doctors that I see. I have been able to work with all that I have had but these past few months my doctors took me off of work because I just couldn’t do it any more. I am a registered nurse and being in the medical field I still can’t seem to get any doctor to hear my cry. THESE LUMPS ARE VERY PAINFUL. I strongly believe that I have Dercums.

Thanks
Pearl

May 19, 2010 at 10:53 pm
(80) sabir hussain says:

hi all, i had my first lipoma about 4years ago and since then they have multiplied all around my body mainly in my stomach i must have at least 50 i had 1 removed last year but since then i have had so many lipomas grow in my body,sad thing is that there is no cure for it.

May 23, 2010 at 3:54 pm
(81) Monica says:

I had a lipoma the size of a very large egg on the back of my left shoulder/back about 25 years ago and it was removed successfully. In 2003 I woke up one morning and couldn’t lift my head off the pillow. My physician said I had no iron (not anemia) and I had to get 2 iron infusions twice a week for about 5 months before I felt well.

But I began getting very fatigued (I was a university professor and had a small clinical psychology practice) and started gaining weight. A lot of it in a matter of several months. The weight seemed to settle in my upper arms, stomach, abs and inside area of my thighs. My mouth, eyes, nose, vagina all started getting very dry and I’d get foggy brained. When the area under my ears swelled up so I looked like a chipmunk my best friend referred me to her rheumatologist who immediately diagnosed Sjogren’s Disease which I’ve now had for 6 years.

Over these years I have had numerous bouts of swelling and pain mostly in my hips and legs which have lasted a few days to 6 weeks. I’ve gotten cortisone shots in my knees and ankles a few times and a few years ago noticed I had a small lipoma in the area inside my left ankle.

About 4 years ago I noticed I had no strength in my lower body. I couldn’t lift either leg high enough to put a heal on the edge of the toilet to dry my legs after a shower. I couldn’t lower my body to the floor or get up without help. Then my lower body started to feel like it was ‘burning’ which meant I couldn’t walk very far without stopping or sitting for a minute. I told my rheumatologist several times but not until my legs began to feel quite heavy about 18 months ago did she get tests.

The tests involved standing on my toes then putting my feet flat as quickly as I could 50 times. Then I lied down and they took blood pressure measurements on every part of my legs and feet over the next few hours while talking ultrasound measurements. Nothing significant was revealed in these tests but my fatigue, pain and burning legs (and sometimes feet) were taking their toll. I began missing time at my teaching job which led to some poor evaluations then an end to my contract a year ago. I have been unable to work since after a 25 year career.

My knees starting hurting toward the end of 2009. They would swell and subside but the inside of both knees were quite painful most of the time. Tramadol and Relefen have been lifesavers for the pain but about 3 months ago my right knee continued to hurt despite everything I did to relieve the pain.

So 5 weeks ago I had surgery to repair a torn miniscus and the orthopedist found some fat and a cyst that he cleaned out. Healing was very quick and by the next week my knee felt fine. But by the end of that week I was back in the orthopedist’s office because my left knee had swollen up so badly that the entire leg was stiff. The dr tried to drain it but nothing came out. So he gave me a cortisone shot and the swelling subsided but not the pain. And I was getting pain again in my right knee but all over, not in just one spot.

A week ago Saturday we were out of town for a graduation and I awoke in pain. Both legs hurt but especially around the knees. As I gingerly stood up out of bed I was shocked. My husband and I looked at my legs and I had about 1/2 a dozen large raised lumps on both knees and just above and below the knees. They were soft, mostly egg shaped but painful. We went to the graduation (but had to do a lot of walking) but when we made plans to meet with the graduate and our friends later that afternoon I knew I wouldn’t be able to make it.

So I just rested. I couldn’t sit, stand or lie down without leg pain and the next morning I woke up with more lumps.

Monday my family physician saw my legs and said he’d never seen anything like what he was seeing in such abundance and over such a short period of time. He’s looking at my blood tests to see if there is anything revealing in them. I had done some research over the weekend and gave him a copy of one of the Dercum’s articles I’d read.

Tuesday my orthopedist just sat shaking his head and said he’d never seen anything like it either. (By then I had about 20 lumps, some quite large) I gave him a copy of the Dercum’s article and he was intrigued. He urged me to see my rheumatologist who couldn’t give me an appt for a week so I dropped in on her after lunch Thursday.

She too had never seen anything like it except once but those lumps were red. Mine were just popping under my skin so that I just looked like ‘a lumpy mattress’ according to my eloquent husband. She took blood and sent me to a dermatologist early the next morning. Oh, and she gave me a prescription for prednisone, 20 mg once a day which seems to be helping a little with the pain.

The derm looked carefully at most of the lumps and used a marker to indicate where he one began and ended. Then she decided to do tissue biopsies in 3 of the lumps above my knees. In 3 weeks she will remove the sutures and look at all the lab results and perhaps give me a dx and px. Perhaps not. She thought the lumps might be angiolipomas because the tissue she removed had fat and blood in it and the lumps are painful which is usually not the case with lipomas (fatty tumors).

Does anyone else have the experience of waking up one morning with painful lumps all over their legs (or other parts of the body)? I’m 58 and female with bruises all over my body, rapid weight gain in specific areas, weakness and chronic fatigue and lumps from my feet to my hips. I also have Sjogren’s Disease which is an auto-immune disorder but these lumps emerged post knee surgery and post cortisone shot.

Any thoughts? help? referrals?

Five weeks ago I had right-knee surgery to repair a torn miniscus and once inside the knee the orthopedist found some fat and a cyst which he cleaned out. Healing was quick

May 23, 2010 at 4:15 pm
(82) Monica says:

Is there a delay between posting and display? Sent a comment about 20 minutes ago and it hasn’t posted.

May 24, 2010 at 1:20 pm
(83) keeter says:

For those of you who have read about Dercum’s and have questions, please stop by our support group at http://www.mdjunction.com/dercums-disease. We can answer many of your questions from our own experience and oftentimes can direct you to a doctor who knows about Dercum’s. It’s a crazy disease for sure!

Diane

May 26, 2010 at 6:06 pm
(84) Deanna says:

I was very interested in your article today on lipomas and Fibromyalgia. A year ago I underwent surgery for four very large lipomas. They were 7″ or so and 4″ or so in diameter respectively on my right hip and thigh, and left hip and thigh. My primary care doc said I am one of those unlucky people who has a gene that makes me get things bilaterally – as I do have other issues which occur bilaterally.

My lipomas were large and very painful and I couldn’t lay on my sides at all – even on a soft bed. Since they were so large and continued to grow the surgeon said they had to come out. I ended up with a drain tube on each side where the largest lipomas were after surgery.

Within a week after surgery I was hospitalized for MRSA. The Dr. said I would be more susceptible to infection because of the drain tubes. After 2 doses of antibiotics they opted to take the drain tubes out and aspirate the fluid with a needle three times a week until there was just a small amount where the body could take care of it naturally. If I had to do it again, although it was painful, I would opt. for needle aspiration of the fluid as opposed to drain tubes.

It was not a pleasant experience and one I hope I do not have to repeat in the future.

May 28, 2010 at 7:34 am
(85) Mercedes says:

Dear Adreane,

I read this article and finally have an explanation for the lumps on my arms, legs, neck, and buttocks. I have told my doctors many times as well as my massage therapist. The massage therapist seems to think its some kind of build up on the muscle while my rheumatologist re-tested for RA. The Ra factor came back well. The massage therapist worked on the nodules and all that did was make the pain even more intense. I do beleive it has to do with the fibro and not any of the other things. Was very glad to finally see an explanation for this. I hope your tmj gets better. I had surgery for mine as it was actually very bad. It took about 3 months to recoup from that. The surgery was very successful for me and I am pleased with the results. Surgery for fibro patients is a big deal and not to be taken lightly but I am glad I went and had mine. Thanks for all your blogs as they help us very much. No one understands us as well as other people with the same problem.

June 21, 2010 at 11:21 am
(86) Jess says:

Hi all
I have a question about a painful lump on my upper back around 20 cm below my hair line that lies directly over my spine. I only have one lump and many of the comments I have read here seem to have a few or many Lipomas. It has tripled its size in a year and is very painful to touch and lie on and sometimes just hurts without any irritation connected with it. It is a solid mass that does not move when touched. Could it be a Lipoma?
Thanks for your time

From Your Guide: Lipomas are generally soft and do move when you push on them. Definitely talk to your doctor about this. ~Adrienne

August 3, 2010 at 8:18 am
(87) John p says:

Hi,
I have over 80 lipomas on my body. I have asked my doctor many times about them. He has told me there is not curer. I had 6 removed when i was 20. But i now seem to find more and more every month. I have at least 20 in each hamstring.
If any one knows of any treatment or specialists in this area. Please reply to this comment.
:)

August 5, 2010 at 12:32 pm
(88) Susan says:

I was amazed to find this post! I was researching Dercum’s disease because of the lipomas I have that are sensitive and painful at times. I’m so sure I have FMS but I’ve never been diagnosed. This is just one more symptom to add to my list! I have recently been tested for slow gastric emptying and found that I have that along with bloating and constipation. Is that part of FMS too?

August 10, 2010 at 8:53 pm
(89) Ben says:

Dave,

You described my exact condition to a T. Please read this and let me know what you think. I to have multiple lipomas all over my body. I first noticed this at age 13. There has been a slow progression and now at age 27 I have too many to count. I’ve mentally tried to put off dealing with this or thinking about it. However, the amount of lipomas in my body is alarming. The standard answer from doctors that some people are lumpy isn’t working for me anymore. From what I can see, the vast majority of people that suffer from multiple lipomas (and not suffering from FMS) haven’t tried anything as a cure. I am ready to take swift and major action in my life to battle this. You said lippodisolve worked for you? Reading this blog is the first research I have ever done on my condition. Can you give me more details about what helped you? You also mentioned superfood? Have you had luck with this? What dieting have you done and has it helped? Lastly, do you know of other websites addressing the issue of multiple lipomas that cause hardly no pain? I would really like to speak with more about your successes so I hope you see my post. Good luck to all.

August 23, 2010 at 9:41 pm
(90) L.P. says:

I have hundreds of lipomas and many are very painful even to the slightest of touch, so about a year ago I decided to do some research and I found I have Dercum’s Disease, but I also have Fibromyalgia and in fact there is a correlation. Since Dercum’s is not a well studied disease you will find 99.9% of doctors have never heard of it. I had to get my diagnosis from a Dermatologist who had to get her medical book out to confirm it (guess she didn’t have knowledge of this disease either as she was skeptical and I think she just thought I was a nut case, but I certainly proved her wrong!) I’ve found that many, many people have Dercum’s Disease even as obscure as it appears to be. Every doctor I’ve been to in the past I’ve had to bring print outs and websites to *educate* them on this supposedly rare disease which has become more prevalent now.
I would urge everyone to look up Dercum’s Disease and do your own research like I did.
Oh, and there is no cure.

September 7, 2010 at 9:58 pm
(91) Ashleigh says:

I am so excited to have found this page. I have Chiari Malformation, which is often misdiagnosed as fibro, since they share so many symptoms. I have EXTREMELY painful, non-visible lumps and bumps under my skin around my temples, jaw, ears, arms, and neck. The facial ones are by far the most painful, and when my chiari flares up they get hard and so painful I just about die. So far every doc I’ve been too has just brushed them off (which is probable helped by the fact that so many of them brush off the pain of chiari and fibro). I’m hoping that this may be the answer I’ve been looking for! I’m only nineteen, and so a lot of docters have a hard time taking me seriously; they think I’m exagerating the pain for attention. Hopefully one day they will start taking our symptoms seriously!

September 11, 2010 at 4:34 am
(92) Carol says:

I have a lipoma in my uterus. My gyno has been following it for two years to make sure it doesn’t get too big. She also sent me to a gyno-oncologist who felt that this was benign and to continue following it. The problem for me is that my periods are getting worse symptom and I winder how much the lipoma is playing into it. The dr told mr that it is very rare to have a lipoma in the uterus. Has anyone else had one there? Any info would be helpful. Thanks,
Carol

September 11, 2010 at 7:46 pm
(93) Mary says:

This is such a GREAT site! Thank you Adrienne. This is so helpful as I have been in to the Rheumatology Dept doc to see what I had on my right hand forefinger knuckle. It is a slowly growing bump and now somewhat painful and my strength is weak in that hand. Doc thought it was gout but my tests for gout were normal etc etc. She doesn’t know what it is but my Chiropractor right off said ‘It may be a lipoma.” Wow I think he may be right for sure now. It is so comforting to listen to all of us talk and share this stuff we go through. Only we really can understand one another!

September 13, 2010 at 2:05 pm
(94) Beth says:

My sister is in the process of being diagnosed with Dercum’s disease…are you sure it isn’t that? We believe my mother was misdiagnosed with, or had concurrent, fibromyalgia.

Just a thought…

September 15, 2010 at 2:41 pm
(95) Lumpy and Angry says:

I have been developing dozens of very painful lumps/tumors throughout my legs, buttocks, back, abdomen, arms and face for the past five years. I’ve gained over 80 pounds in the same five years and I do not over eat. My husband, mother, friends and kids have all said “you don’t eat enough to be as big as you are” or “do you eat in your sleep or something? You hardly eat, how can you gain weight?” “Your arms, hands, shoulders aren’t fat, whats with your hips and legs?”

When the lumps first start they cause an excruciating burning pain that also feels like I’m being stabbed. Once that pain is over the lumps grow, they are firmly attached and do not move around. I have had one walnut sized one removed from my lower leg, a plum sized one from the back of my calf and a shotgun shell sized one from the back of my thigh. I’ve had dozens of skin and fat biopsies. The Pathology came back with lymphocytic infiltration, foamy histiocytes, sclerotic and necrotic adipose tissue and highly unusual multi nucleated cells.

The guesses at what is causing the lumps have been: Lupus Panniculitis, “old” lupus panniculitis, possible lipoma, erythema nodosom or a granuloma. One surgeon thought it was an angio lipoma, another said fatty tumor syndrome, another said “some people just get tumors for no reason”, yes, and some Doctors are idiots.

I have grown scar tissue around all of the surgical and biopsy sites that became larger than the original tumor and the scar tissue hurts as well. I do not have any antibodies for lupus, although I have almost all of the symptoms. If you look at my blood work I look like the most healthy person in the world.

I have lost major strength from my lower back to ankles, I can barely get out of a chair after sitting for a while, climbing stairs, getting out of bed or heaven forbid, off the floor is torture. I have intermittent horrific pain in my tailbone and area around it. My arms and hands have also lost strength.

My lower body swells up, one area below my right knee to the shin is swollen twice as large as the other leg. One surgeon I saw refused to operate on me for a muscle biopsy because he felt that I am carrying sixty to eighty pounds of fluid in my body and that the surgery might cause incapacitating lipoedema throughout my leg. My skin is “paper thin” where the swelling is.

I have skin rashes; I look like I have geometrical designs in my skin – hundreds of circles, lots of ovals, a couple of heart shapes, depigmented lines and more, it’s diagnosed as figurate erythema gyratum and I was told it is a “para neoplastic condition” a sign that shows up before an occult cancer is found.

When everything flares up I look gray, no color in my face, I look like I’m dying. I am exhausted and can barely function. I get the flares without warning, I wake up and I’m a wreck.

I haven’t felt good in over five years, I have weeks where I have less pain and weeks where I’ve thought death would be a relief.

I’ve been told I have lupus, mixed connective tissue disease, RA of soft tissues, yet I have no antibodies for any of them. One neurologist said I was “over reacting (that) there isn’t a problem”, I “just have lipomas and they don’t hurt” and that was after I had the electric shock muscle testing and it showed highly unusual results and had bizarre pathology. Sure, I just grow tumors at will and put myself through all of this misery for fun. Idiot.

I take plaquinil for lupus, it helps my joints, but nothing else. I can’t take NSAIDs because I have a hiatal hernia, reflux and erythema in my esophagus and stomach. I won’t do narcotics. I’ve taken prednisone and it makes me feel terrible. I did acupuncture, it helped my lower back, but not the other problems.

I’m at the end of my rope, I can’t stand being in my body. I’ve started a diet to get rid of as much fat as possible. I wonder if I’ll lose the tumors then.

I have a CT of my leg that shows fat cells the size of big marbles where my leg is so swollen. In the areas without the edema you can’t even see the cell structure. I’ve been given diuretics, they give me canker sores.

I am very sensitive to noise, light, pressure or touch on my skin – not always, just during the flare ups. I get weird sensitivity to smells, B Complex vitamins make me want to throw up when I smell them.

I am angry. I can’t get a correct diagnosis. I get brushed off by Doctors when they realize they don’t know what is wrong with me. I’ve had four Dermatologists tell me I have a major problem and need to get a diagnosis, yet they can’t tell me who to go to! All of the pathology reports say “Clinical correlation is essential”.

I have a PCP, Rheumatologist, Endocrinologist (I’ve seen three), Ob-Gyn, Nephrologist, Urologist, Neurologist, Dermatologist (seen five), Surgeons (4), Orthopedic, Spine specialist who referred me to a Physical Therapist after giving me muscle relaxers and nsaids.

If anyone has any ideas on who else to see who might help me get better I’d really appreciate it.

November 21, 2011 at 8:10 am
(96) Lee says:

No wonder you are angry!!!

My God!!! I have just read your post and my heart goes out to you. I have posted several times on this blog over the past 18 months or so…..most recently to a post by Joanne.
Please read it. My wife has had Fibromyalgia very badly for the past 14 years along with painful lipomas and crippling sciatica. Since she commenced taking an all-natural product about 7 weeks ago all her symptoms have gone away and she is pain-free. If you want to know more you can write to me at lee.osborn@gmail.com or call me on Skype, my call name is Plaredes. I am a professional massage therapist and totally genuine.

September 21, 2010 at 3:49 pm
(97) Diane says:

Come check us out at http://www.mdjunction.com/dercums-disease. We are a support group and help with suggestions and direction and sometimes even can locate a doctor in your area who is familiar with Dercum’s. Sadly, most doctors have no clue about it. It’s a tough road to get diagnosis and find a doctor to work with you. But it helps to know you aren’t alone.

Take care!

October 19, 2010 at 7:56 pm
(98) Lee says:

My wife has had FMS for about 9 years now and lately I have become pretty much convinced that she suffers from Dercum’s disease as well. I’m a qualified masseur and discovered, just after we met 5 years ago, that she had lots of small lumps under her skin.
I sometimes describes it as feeling like rough hessian or gravel. The lumps often seem to attach to muscle fibres but are most prevalent in the buttocks, thighs and insides of the knees but can also be found in other areas, especially during flare-ups. By touch, I could tell her where she hurt and everytime she confirmed it. Conversely I could tell her where she didn’t hurt. I therefore became convinced that the majority of the pain she felt from FMS was coming from these fatty lipomas under the skin and I felt therefore that if they went away, so would most of her pain. Hah! Much easier said than done! At the time I discovered this there was nothing on the web that was associating FMS and fatty, painful Lipomas. Now there are any amount of testimonials verifying the connection such as on this blog.

October 19, 2010 at 7:59 pm
(99) Lee says:

From my own personal research (and I am NOT a doctor….I present my findings here purely as food for thought) my wife seemed to exhibit symptoms of Candidiasis, which many sources suggest is now absolutely rife in the Western world because of our diet, lifestyle (stress) and misuse of antibiotics. Candidiasis can lead to a condition called Leaky Gut Syndrome. This syndrome comes about because Candidiasis in its mutant, fungal form develops long rhizomes that punch minute holes in the lining of the stomach wall allowing large food molecules and bacteria to pass through into the blood stream. The immune system rightly sees these as foreign invaders and attacks them. My wife exhibits certain allergies and food intolerances. It may be because her immune system ‘remembers’ some foods as the foreign invaders. It would be interesting to know how many people with FMS and these painful lipomas also have food allergies and intolerances. It would be easy to imagine how the immune system might become over-worked, even exhausted, in such a scenario, maybe even allowing widespread, low-level infection to be set up in the tissues of the body (lipomas). Of course, this is pure speculation on my part but it seems to make sense to me and seems to correlate with a lot that I have read.

October 19, 2010 at 8:04 pm
(100) Lee says:

I understand that Leaky Gut Syndrome is diagnosable and treatable. It would be interesting to know how the level of occurence of FMS and painful fatty lipomas in the western world coincides with the occurence of them in other ‘more simple’ cultures. It may be that tests for Candidiasis and/or Leaky Gut Syndrome are the first steps at getting to the cause of this very painful, systemic problem. One thing is for certain: the problem is coming from somewhere…..THERE IS, AND HAS TO BE, A CAUSE! The disease is the ‘effect’ flowing on from that ’cause’. Anybody who thinks it is that way just because it is, has to be having a ‘stupid’ attack.
It kills me to witness the pain my wife suffers. Some years ago a Rheumatologist suggested she may have Leaky Gut syndrome. I have come to believe he was definitely on the right track to suggest that and my challenge is to now get my wife to explore that avenue. But I am sure all you sufferers out there relate when I say she is so tired to try anything else as she has tried so many things without result in the past. I would encourage all you suffering people out there never to give up looking for the cause. You CAN have your life returned to you.

October 27, 2010 at 5:14 pm
(101) Rhonda says:

I just happen to wander upon this site and thought I would put my personal opinions on these dreaded “Lipomas”! I have slowly been developing lipomas for about 15 years. Mine are mostly located on my forearms, and legs. I decided about 13 years ago to have a smaller one in the inside of my forearm removed. When the dermatologist was removing it he realized it was attached to a vein. He had to carterize (spelling??) it or it would have bled allot. About a week after this very minor ordeal I noticed that all the small ones that were along the outside of my forearm were gone. Okay, so that tells me that possibly these silly things are attached to a vein, which feeds the other ones. Sounds gross, but I truly believe this. Also, I notice that I get these lipomas in areas that I have run into something or often lean on and possibly have injured. I am a true believer that my body is responding to the injury by building up a fatty tissue. I am not a doctor, but sometimes believe that we know our bodies better than any other person, including those crazy doc’s!! I am going to go in and have a few more removed. I would rather have a scar then the ugly bump….By the way, the small scar on my forearm is nearly invisible and the lipoma never came back. I would highly recommend that anyone with Lipoma’s does not ever have liposuction. I would be scared I would bleed to death. Remember that lipoma was attached to a vein right near my wrist area……Hope this helps! One more thing, I have to say I feel blessed because none of my hundreds of small lipoma’s hurt at all. It breaks my heart to see so many others in so much pain.

November 5, 2010 at 10:25 pm
(102) Gina says:

I noticed my first lipoma in the middle of my back, that was 15 yrs ago. It started out small and starting growing, I had it removed about 4 yrs ago. About a year and a half ago I noticed them growing on my right shoulder, I now have about 3 of them and its very painful. The lump on my back was never painful, I think since they are in my shoulder they are hitting a nerve. But I’m not a doctor so who knows. The doctor didn’t seem to think it was anything. Soon after all of that I was diagnosed with Fibromyalgia. My mom also has Fibro and she has lipomas growing on her right foot. Thanks so much for the info…

December 7, 2010 at 2:05 pm
(103) Lisa Moon says:

Where did you get the information about Fibromyalgia having the symptom of lipomas? In my experience as a nurse, fibromyalgia is diagnosed due to fibrous tissues, not lipomas. However, there is another condition called Dercum’s Disease or adiposis dolorosa in which the classic symptom is PAINFUL lipomas. Symptoms are similar to fibro except that DD patients don’t have the fiberous tissue unless,of course, they have a dual diagnosis of fibro and DD, which some do. It may serve you well to do some research on DD as you may have that as well or instead of fibromyalgia, for as I understand it, these are two seperate conditions and I have been diagnosed with DD since 2007 after suffering with the symptoms for at least 10 years prior to dignosis due to lack of education of physicians to these rare disorders. There is current research by Dr. Karen Herbst, an Endocrinoligist from San Diego, UCSD, and gene mapping is underway to acquire a blood test to determine predisposition to DD as it is a genetic trait.

December 12, 2010 at 12:37 am
(104) Janice says:

Hi Jacqui, I was just diagnosed with a lipoma in my upper back by my neck. It is the most pain I have ever experienced in my lie. It is effecting my neck and the back of my head. The pain however is right where the lipoma is. Worse than any toothache or child-bearing pain. I am scheduled or a surgeon to take a look at it and see what he says to do about it. Did you have yours removed and did the surgery turn out ok? They said the lipomas are without pain. I say bullshit if they are. It is horrible. The doctor at the hospital said it could be pressing on a muscle. I don’t believe that at all. I think it is pressing on a nerve and that is why it is so painful.

December 16, 2010 at 11:43 pm
(105) Cynda Thomas says:

I have had Fibromyalgia for over 30 years. I have multiple lipomas, some have been removed. When one starts it is like a knife stabbing me. Then it goes away and the pain starts somewhere else. It usually starts after stressful situations or cold weather/air conditioning. My only way to stop the pain in my legs or arms is heat/pressure. I take Source Naturals – Fibro Response, It helps and I take Malic Acid along with calcium/magnesium/Vit D/zinc. I cannot tolerate much sugar or sweets. I believe the lipomas can be removed surgically if not too deep. I can’t believe the doctors are so uneducated regarding this disease, but they ignore it like it is nothing, it controls my life.

December 22, 2010 at 11:53 am
(106) Wendy says:

Thank you soooo much for this valuable information. I have these lumps in my legs, arms, under my ribs, and probably other places too. I have found, when I eat sugar, it makes the pain and inflammation worse. I have also noticed the pain in the lipomas varies from different spots from time to time. Last week, I could not bend my big toe on my left foot at all. All of a sudden the pain is completely gone, but has now moved to my right foot. I have so many lumps, and I just figured it must have something to do with the Fibromyalgia. When I’m in excruciating pain, nothing helps. Not even Celebrex. I’ve heard exercise and diet really help. The difficult part for me, is trying to walk when my feet are so very painful. Does anyone have any information on which type of specialist to see and what they’ve done to help with the pain? I have just begun taking a product by Metagenics, called Fibroplex Plus, which is suppose to be a support for muscle tenderness and discomfort. I’ve been taking it for a little over two weeks, and I’m thinking, maybe the severe pain in my toe, and other parts of my body, disappeared because of this supplement. I’m also taking Kaprex, which is suppose to help my joint inflammation. I’m buying this through my chiropractor, but my MD has it too. I’m willing to try anything.

December 28, 2010 at 2:23 pm
(107) Ursula says:

I had fibromyalgia symptoms from the age of three, but incidentally, they are also symptoms of Celiac disease. I was diagnosed with fibro ten years ago, but five years ago I finally figured out (no thanks to my doctors) that I have Celiac disease.
Of course, as a result, I’ve had deficiencies. I was very low in iron, vit. D, and other essential nutrients. Somehow, after reading the above posts, I expect that they might have something to do with the large lipoma I have in my right calf.
I’ve had surgery once before. Unfortunately, the surgeon was too ignorant to have an ultrasound done before seeing him to find out what I had in there. He assumed falsely that it would be one large lump. When he went in, he found hundreds of small ones dispersed throughout my muscle.
Because he wasn’t prepared for that, and had used only local anesthetic, he left a lot of them in my calf. Of course, they grew back with a vengeance.
The first surgery was necessary because the lipomas would cause horrible cramps in my leg when driving and at night.
Now I am going to have surgery again, because apparently, the lipomas are shortening my muscles, and are causing the most horrific pain in my heel, and sometimes my whole foot, as well as restricting movement in my hip (not being able to lift my leg).
People, I want to tell you about my intolerances. Through an elimination diet I did five years ago, I found out what caused all my body pains. At that point I had been on codeine contin (slow release codeine, 50 mg releasing over the course of 12 hours, twice a day, sometimes needing two at night to sleep) for several years.

March 7, 2011 at 11:16 pm
(108) Patricia says:

Wow this is not complete–You said through an elimination diet I found out what caused all my body pains— would you please tell us—Thanks so much.

December 28, 2010 at 2:25 pm
(109) Ursula says:

Continued:

Within two weeks of my restricted diet I was off ALL painkillers! Unfortunately, right now I am using codeine again to be able to sleep because of the lipomas.
Here is specifically what caused which pains and symptoms:
Gluten (found in wheat, rye and barley) caused the cycles of diarrhea and constipation, as well as horrible gas and bloating. Dairy will also cause bloating and gas.
Lectins in general cause me to feel terrible. High lectin foods are ALL grains (including the gluten ones, and rice is a grain, too), legumes (that includes soy and peanuts, green beans are fine), eggs, all dairy, nightshades (potatoes, tomatoes, peppers, eggplant)
Rice will cause joint pain and buckling of knees and ankles. It will also cause extreme fatigue. Eggs, if I eat too many, will do much the same thing. Peanuts give me heartburn and cause me to just feel yucky all over. Potatoes give me acid diarrhea. Tomatoes cause migraines. Peppers will cause an outbreak of pus-filled pimples all over my face (adult acne, anyone?).
Foods high in salicylates (salicylic acid) are absolutely horrible for me. They were what caused the muscle and skin pain.

January 13, 2011 at 7:17 pm
(110) Lee says:

Ursula, have you investigated whether you have Leaky Gut syndrome. If so, it may be the cause of your food intolerances. I suggest you check it out with your doctor.

March 7, 2011 at 11:26 pm
(111) Patricia says:

SORRY— NEEDED TO READ THE NEXT.

December 28, 2010 at 2:29 pm
(112) Ursula says:

I hope my last installment will show up. I am not saying that fibro is ALWAYS caused by food intolerances. But I believe that it is the cause, or at least a contributing factor in many cases.

If you’d go and check out http://www.celiac.com and go to the forum, you’d find that the great majority of people with Celiac Disease have fibromyalgia, too. And many have multiple intolerances on top of the gluten issue.

Doctors are VERY ignorant about many things, but especially when it comes to nutrition.

January 13, 2011 at 5:25 pm
(113) Diane says:

I recently had surgery to remove some of my most bothersome lipomas on my thighs. Lipomas should always be investigated. Mine were painful and growing for years. I have liposarcoma in my family which lead to the death of my cousin. I was very lucky as my pathology report came back today as non cancerous lipomas. I am on day 3 after the surgery and am taking 160 mg. (junior version) of liquid tylenol every hour and using wrapped ice packs on my thighs. Every day is better and I am noticing some numb spots on my knees, below a former lipoma. Yeah! I never knew I had lipomas until my Doctor retired and my present doctor identified them. I’m not sorry about the surgery as of yet. Good luck to all.

January 21, 2011 at 3:33 pm
(114) Carrie says:

Good luck to you, I hope your dont come back:)

January 21, 2011 at 3:31 pm
(115) Carrie says:

Hi Everyone, I just wanted to let you all know i have had now three lipolmas and they are very very painful!! Two of them i had taken out with surgery, But they just keep on coming back, My pain specialist thinks that they are hereditary. I have them on my lower back on my right side and the pain on most days is very severe! So, Anyone who says they arent painful is crazy! I have had these for years, I finally found a Doctor who knows what they are, It seems the more physical activity you have the more painful they are and seems as tho thye get bigger. Does anybody else have this problem?

March 8, 2011 at 7:37 am
(116) Victoria Jessie says:

I thought I was crazy, because I was feeling lumpy tissue with larger lumps under my skin. I was a size 8, but after having back surgery and taking injections for my fibromyalgia I went to a size 24, so I was not sure if this was a result of being overweight. I asked a friend in the health field and people I knew, which were overweight, but no one seemed to be experiencing the same thing. I stumbled upon this page and again, it has eased my mind that this illness is very unique, but my symptoms are right on target with fibromyalgia/Chronic Fatigue Disorder. Last year I was in terrible pain, couldn’t use my hands, or walk. In desperation I rubbed Vick’s Vapor Rub on my skin and put a heating blanket over me. I felt real relief for the first time. Even thoug it was minimal, it was enough to keep me from going off the deep end.

March 12, 2011 at 11:38 am
(117) Amy Reaves says:

I noticed my first lipoma when I was in my 20′s. I am now 44 and have many all over my body. They are in my arms, abdomen, upper back, chest, neck and legs.

A few years ago I had four excised. Two on the chest and two on the upper part of back just below the right side of my neck. The surgery was great but only effective for two. The ones on my chest. The two on my upper back grew back and were even bigger than before. They are extremely painful. I will usually put some Bio-Freeze on them to help relax the muscle. Sometimes it works and others it doesn’t.

I have never been check for Fibromyalgia or Myofascial trigger points. But I do believe I may suffer from those as well. I just couldn’t imagine having surgery for all my lipomas because I would be one big scar from head to toe.

The ones in my abdomen hurt sometimes and I would hate to get cortisone injections there.

I would love to know if there are any other types of treatments out there for lipomas. I have searched the net and haven’t found any other than surgery and injections.

March 12, 2011 at 12:37 pm
(118) Amy Reaves says:

I seem to do things backwards. Of course, I posted my comment then read all the threads. There was so much information that I became overwhelmed but grateful to so many who have given of their time in telling about their situations and how they have dealt with them.

Now I know about DD, Leaky Gut and other problems. And I never would have thought about my food allergies maybe playing a part in this. Of course, we all have a lot of questions and the doctors don’t have many answers or at least good answers. Keep the faith that more research will be done in the area of lipomas and bumps.

March 24, 2011 at 10:34 am
(119) Joe says:

I started getting them at 18years old, My first one was on my leg, Then every year after 2 or 3 , The doctor would cut them out, They heal quick since the cut from the knife are clean, but I’m tried of them, Now one is blocking the nerve of the left eye and has caused me blindness, yes they do cause pain. depends part of the body

March 31, 2011 at 1:09 am
(120) Jimmy says:

Greetings to all. There is a herbal balm in Thailand for non painful superficial subcutaneous lipomas. It’s based on Bariena lunulina. You have to massage the balm onto the lipoma to make it reduce and disappear

June 13, 2011 at 10:22 pm
(121) skm says:

Do you know if this balm is effective? Thanks.

April 3, 2011 at 1:23 am
(122) betty says:

Everything that is being written here is contrary to what most docs say. If I hear another surgeon say that lipomas are not painful, I will scream.

Multiple lipomas are not supposed to happen in women. And, they don’t turn up until middle age. Bull! I’ve had some of mine since early childhood. I had two removed a few years ago because of pressure on a nerve and another because of pressure from a bra strap.

Look up Agent Orange. I believe mine are caused by my father’s exposure to A.O. in Canada, Korea and Viet Nam.

April 5, 2011 at 4:58 pm
(123) Holly says:

I’m having a lipoma from my left leg removed this Friday. I have had it since I was 8 years old and it is just now starting to hurt and has become bigger since then. Glad to hear its not as big of a deal as I’ve been making it. :)

April 11, 2011 at 3:57 pm
(124) Evie says:

It is likely that the painful lipomas are dercums disease or adiposis dolorosa. Please check into this further if it is dercums hydrcortisone causes more

April 11, 2011 at 4:02 pm
(125) Evie says:

Everyone with painful lumps please go to this site. http://Www.lipoma of.org. I believe this is connected atleast for some

April 26, 2011 at 10:35 pm
(126) Amanda says:

I have lipomas in my underarms. I noticed a lump about three years ago and went to the doctor to have it checked out. The doctor seemed almost puzzled about it, and sent me to a surgeon, who then sent me for an ultrasound. The surgeon told me right away he thought it was a lipoma. I remember he didn’t seem too concerned but suggested surgically removing it, for the reason that it was causing me pain. The recovery was quicker and definitely not as painful as I had suspected it would be.

The only problem is the fact that it grew back. Only now, it’s about double the size and has grown into my breast. I experience frequent joint pain in the shoulder it is in and it’s painful just to let my arm rest near my side. I have thought about getting it removed again, but haven’t in fear that it will come back even bigger than it is now.

I do have others in my other arm and underarm, but luckily they cause me no pain.

June 13, 2011 at 10:25 pm
(127) skm says:

Does anyone know if the balm from Thailand is effective? Thanks.

June 18, 2011 at 12:59 am
(128) Johanna says:

I just found this website and I am glad. I have fibromyalgia and a couple months ago noticed a lump on my back, painful when I sit and it hits the back of the seat. Now I know what it might be. Do have an md appt. set up to be sure.

June 27, 2011 at 5:44 pm
(129) Gini B says:

I wish I had read this before my husband told me he didn’t agree with the Dr’s fibro diagnosis BECAUSE he could feel the ‘muscle spasms’ in my back where most of my pain was (is, will be). I will be inquiring at my next appt for sure!
PS can they go away on their own?

June 28, 2011 at 8:13 am
(130) j says:

I have a large lump in left thigh. just had 3 MRI’S last week and am set to see a surgeon this week. A little scared because the Dr said that the MRI showed the lump inside of the muscle. He also said the radioloigist saw several things he did’nt like. I was told it could be a liploma but could also be a liploma sarcoma. Not sure I even want to know.

July 1, 2011 at 10:44 am
(131) greg meinhardt says:

I have literally dozens, of big, medium ,and small lipomas from my knees to my upper chest and arms, Was having pain in my chest, to the amazing surprise of several surgeons i had a lipoma which was blocking my left kidney, i was functioning at 17 percent, my kidney was removed they told me my case was extremely rare , unheard of, i think it was taken simply for study this took place at a college university hospital they told me it was going to be studied , i shure hope that my kidney was put to good use, because i have been told they could have saved my kidney, now i am being checked for one in my right lung. A lipoma can develop in an organ, wish me good fortune Greg

July 7, 2011 at 6:14 pm
(132) Patti says:

Hey Greg, my lipoma too was removed at university hospital, so far to date my lipoma was the largest that they had ever encountered. Good luck with your lung. I didn’t know they could develop in an organ, my was actually in a muscle.

July 2, 2011 at 2:54 pm
(133) Gloria Moore says:

I was doing research for a neck pillow pattern and came across this info. I have had nodules or lipomas for decades but never had a doc tell me what they were. My right shoulder has several of them that can be seen as swelling. This has only occured in the last 7 months. I go back to my fibro doc that I have been seeing for the last 10 months. I will definitely talk to him about them but am not really pleased with the amount of money I have been spending relative to the my current condition.

July 7, 2011 at 6:05 pm
(134) Patti says:

Having just been diagnosed with Fibromyalgia, I’ve been doing alot of reading about it on the internet. Upon coming accross this “monster list” of symptoms relating to Fibromyalgia, I almost fell off my chair reading the part about lipomas!! Just last year I had an 18 inch lipoma removed from my abdominal cavity. I just can’t believe I’ve been suffering for so long with this, I had myself thinking I was imagining all the symptoms I have.

July 8, 2011 at 2:27 pm
(135) Vicki says:

I got hurt at work and of course they sent me to a company doctor. I never had a problem with my arm or wrist before the accident. She did absolutely no tests. She told me I had a pulled tendon and kept giving me pain meds that did nothing for the pain. She then gave me a shot in my wrist which made things worse. I had been insisting on an MRI. She finally had me get one. She diagnosed the pain as a lipoma in my wrist and a ulnar minus variance. She then told me it was not the company’s fault or issue and that there was nothing that could be done for it.

July 15, 2011 at 3:36 am
(136) Susan says:

I was diagnosed a year ago with fibbromyalgia. I am so glad to have found this site. I have had so many of the symptoms on the monster list and I don’t talk to many people about this because it all sounds ridiculous and I look fine. I have had hair loss, now it’s grown back. I have extreme sleeping difficulties – just got a sleep apnea machine and it helps. I wake up tired and stiff and have headaches and a swollen face and red eyes. Mostly I have tenderness and grainy sore muscles. I just recently noticed the little bumps like jelly beans and some are very very painful, some not. They are mostly in my upper legs and some in the arms and breasts. I am going to try swim or water exercises. I am also trying to eat in a very pure form. I hate the noise and light sensitivity and the constant fatigue. I wish for the energy I used to have. I hate the medicine Cymbalta and I am slowly going off of it. I find myself alone a lot just because I don’t want to be a complainer and I can’t keep up with others. So, thanks for a place to vent and learn that there are so many others. I hope this gets better. I would love to learn from someone that they have gotten better.

July 15, 2011 at 3:50 pm
(137) JoAnne says:

I don’t know if what I have are lipomas or not because they are very small, (less than pea sized), and they are all over my arms mostly, some on my legs. I haven’t felt all over so am not sure where else. Descriptions from other people all seem to say theirs are bigger and fewer in number and more on the back. Mine aren’t. I’m worried.

October 3, 2011 at 6:25 am
(138) Tim says:

Hi JoAnne, I’ve got 20 or 30 lumps on my body, two or three of which are about the size of peach stones, but most of which are small, ranging anywhere from the size of half a pea to half a grape. But I would still recommend visiting a doctor, just for a check. After reading all the posts on here I’m definitely going to see a doctor again. (Last time I saw one he said I was too thin, and recommended I put on weight so as to help hide the lumps! Not great advice, since my weight was correct for someone my height. Makes you wonder how some GPs earn what they do sometimes!)

October 3, 2011 at 6:20 am
(139) Tim says:

In a slightly perverse way I’m quite glad to see that fatty lumps under the skin affect quite a few people, and that sufferers like me are not alone. I would say I’m one of the lucky ones, in that (when I’m dressed) none of my lumps are noticeable. Also, I wouldn’t say any of mine are painful either. They can feel a tad bruised at times, but one or two are in locations where they can get knocked, which hurts a little more than if I bump or knock an unaffected part of me.

I’ve got two prominent bumps on my right forearm and one prominent one on my back, to the right side. These are the three I’ve considered trying to have removed, because of vanity really, but also because they do get in the way a little, especially the one on my back.

At 40 I do find I get a new bump appearing every six months to a year, and I first noticed them in my early 20s I guess, so I would say I have between 20 and 30 bumps all over my body. I am always aware of them and I do tend to cover up most of the time in order that people don’t see them, so I can relate to others who are self-conscious.

I do wonder sometimes if surgery really is the only answer though. My sister’s a bit of a hippy, and she had a lump in the middle of her chest, near the top of her ribs. For some time she used to regular go to T’ai Chi classes, and she noticed one day the lump had disappeared. Now she doesn’t do T’ai Chi anymore the lump has come back. I wonder if this is coincidence, and relates to a time in her life when she was a lot thinner. Could dieting help burn up these fatty lumps I wonder?

I’m going to keep an eye on this blog, to hear others’ news and advice on these issues.

Tim.

October 10, 2011 at 9:15 pm
(140) nicholas says:

wow good reading
I have 3 herneated discs low back bilg and a s1 nerve root
inflamed also 2 cm cyst L2 fibromyalga and bercits in my right
shoulder. I am having week nees sharp pain on both sdes of hips down side and back of right leg to big to dead legs feeling
1998 I fell 12 feet hart stoped went white and came back to life after 20 to 25 minutes the witnesses said.I blead inside for a week or so and had to get an rib in my chest put back into
place.Nothing showed on the xray but the mri showed all.
Im 43 now and I feel realy old and Im lossing my balance and my legs cant hold me at times …….any sugestions????

October 20, 2011 at 12:22 pm
(141) April says:

Hi, I don’t know if it’s too late to leave a comment.
My mom she just find out has a big lump behind her leg, it’s very painful… she even cannot pick up stuff from ground.
Her family doctor refer her to see hand specialist.. sounds doesn’t make sense. Which specialtst she need to see. Can somebody help??

Thanks!

November 4, 2011 at 6:34 pm
(142) jason says:

ok i have lipoma an its on my hand back and left an right side of my upper body the left side hurts recently thinking about removing it just wanted to get some views on this cause i’m a little afraid because of the pain can i get a reply as soon as possible thank you very much your review will be much appreciated……….

November 10, 2011 at 4:57 pm
(143) Annee says:

I came to this page because I had pebble-like hard lumps along my leg bones. I can’t remember NOT having them, and they did not hurt. A year or so ago, I started taking D3, around 10,000 units per week. Today, I suddenly realized that the LUMPS ARE GONE.

I am not saying it was the D3, but I have not done anything else differently in my life.

December 6, 2011 at 6:31 am
(144) jean bailey says:

i have had two lumps removed in the past i have burning pains in my back i have bean xrayed for another i thought i had dercoms but i have bean diagnosed as fibromyalgia ihave had my elbow opped on and my wriste i sleep satup or on my side whatever its called its hell

December 6, 2011 at 10:05 am
(145) Dee says:

I take barleans flax borage fish oil for my lipoma. One teaspoon a day for two weeks completely got rid of it and now I take it once a week for maintenance since it seems to have been what my body needed. I was taking the oils for breast. Cysts and lo and behold it cured my lipoma. Thank god cause it was the size of a golfball and very painful. My breast cyst went away too . I just love learning about nutrition .

December 16, 2011 at 11:28 pm
(146) Rochelle says:

Hey everyone! so I am 26 I have been diagnosed… with fibromyalgia. however I have so many other things going on that no dr can figure me out and they actually give up on me. My last rheumatologist literally after looking over my case said I was over his head and that i needed to go to Stanford. I have been dealing with intense pain for around 6 years now. The past 2 years or so I have noticed what seems to be little pea sized lumps all over my left buttock and left leg. Now more recently my right leg is following suit. It is incredibly painful. The best way to describe it is that it feels as though my entire leg is one huge bruise from hell.

I am going to list Some of my symptoms to see if anyone else has anything similar.

Hyper mobility
Migraines several a week.
Rapid heart beat
swelling of joints
Pain in every joint in my body
double vision at times
constant stomach irritation (nausea and cramping)
poor circulation to feet and hands… (my feet actually turn blue)
Inability to take most medication. Due to nausea or headaches.
Unable to sleep due to pain
constant pain and popping between ribcage causing severe pain.
Numbness of arms when lifted over my head.
easily bruised

It seems I have been tested for every auto immune disorder that several, and i do mean several drs. can think of.

My mother also has all of these symptoms, and is now at the point that all of her cartlidge is gone from her knees and elbows. She has had a heart attack and a stroke bot by the time she was 35.

They can not figure her out either…

SO like i said if anyone has any ideas pleas let me know it seems the docs are at a loss.

January 17, 2012 at 4:36 am
(147) singh says:

hello readers all i can say is best option is go for operation if u are going through pain i had one on my right side of my rib removed 2 yrs back and now had 1 on my back the size of a golf ball i live in usa i had to come home india for medical reasons let no body go through pain peace and good health to all

January 20, 2012 at 6:41 am
(148) David says:

I’ve never been diagnosed with fibromyalgia, but what kind of specialist would I see to diagnose a lipoma? I’ve had a couple of doctors look at these painful bumps and neither knows what they are.

January 21, 2012 at 1:11 pm
(149) Cherry Stoltz says:

I was looking for info on giant lipomas because I’m going to hospital to have one removed tomorrow. I also have fibromyalgia with pain at every trigger point. What amazes me is that I have small lipomas on my upper left arm and right thigh that hurt like @&%# and keep me from sleeping but the giant one, which is 18cm x 12 cm, I forget about until I try on clothes with tight-ish sleeves or bump it at the wrong angle.

January 21, 2012 at 7:53 pm
(150) terry says:

Hi,

For lipomas, one of the best sites is that of Dr. Karen Herbst, an endocrinologist who deals with the “disordered fat” of Dercum’s Disease and Madelung’s Disease, and a number of other lipoma and off aft deposit disorders. Dercum’s Disease has many painful lipomas. I was surprised so few people commenting here had heard of it.

There is another category of lipomas. These appear in the neurocutaneous disorders, from problems in the neural crest cells at the embryological stage. Cowden Syndrome, Bannayan-Riley-Ruvalcaba Syndrome, Proteus Syndrome, NF 1 and NF2, Tuberous Sclerosis — these are all neurocutaneous syndromes; there are more, as well. These lipomas are not painful, but they can appear on the chest wall, the abdomen/pelvic area, legs, arms, scalp — almost anywhere. There is also lipomatosis — unencapsulated lipomas that spread out and become a mass. You can sometimes even find these in conjunction with synovial cysts.

Remember that many of the doctors who perform the basic surgery to remove these various lipomas are entirely unaware of what might be causing them — as in, the underlying disorder. Their job, as they see it, is simply to remove them, without asking further questions. They will likely tell a patient, “oh, it’s just a fatty benign tumor”, but what they don’t say is that it might well be part of an overall syndrome that is serious. The neurocutaneous syndromes, for instance, often have a high risk of a number of cancers. Ask questions! Check it all out yourself through Google and Pubmed.

January 22, 2012 at 11:24 am
(151) Violet King says:

Unbelievable to find so many people with the problem I have had for years.All the fatty lumps are in my legs, arms and down my back. I wondered if there would be a natural remedy for them that would dissolve them, but I have never come across any suggestion of that.
They hurt if I run my finger across them, but generally they aren’t causing problems….apart from being there when they shouldn’t be!! LOL!!!

Thanks for all the comments…isn’t life a learning curve??

January 27, 2012 at 8:23 pm
(152) David says:

Hi, I just wanted to come back with one more question. Seems like most people with painful lipomas large and or/numerous ones. I have two pea-sized lumps that cause pain (I had them checked out a couple years ago to see if they were lymph nodes, and the answer was “no.”). Anybody else have small, isolated, painful limpomas?

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February 14, 2012 at 11:21 pm
(155) Tracy Petrey says:

I believe I have fibromyalgia since I was a teenager . I devolved a lump on the base of my neck six years ago it’s very painful . I also have one on each side on top of my rib age . I’m going to be thirty eight and I feel it’s getting worse . Im a stay at. Home mom so I clean my home all the time because if I set down the pain is to much I burn like fire and just a week ago my back meaning almost to. The wast was so painful I was down for two days I’ve never been down over this . I think we are so use to hurting that don’t know any different. And I try. Not to complain all. The time I think that people who don’t have this just dont understand it feels to hurt all the time. I’m sorry I was diagnosed with this chronic decease nine years ago. I pray for all of us who suffer that they will find a cure someday

February 19, 2012 at 9:41 am
(156) CherylPetro says:

Hello,
Doctors are for some reason not interested in trying to figure out what they don’t understand. I had a powerful chemo for one year, and awhile later developed lumps that are so numerous, and large, they make my arms tired and painful. The chemo also caused me to get lymphedema, which makes my torso, arms and legs swollen and weird shapes. (my Crohn’s makes me swell up too).I have so many issues as a result of the chemo, but I am alive! The problem is, I have gotten large, and all the doctors say is, “lose weight!” Even after doctors know my medical history, they still have little, or no compassion, or understanding of what has happened to me. I have had doctors look at me from the doorway, and tell me to lose weight, and walk away! No exam, nothing! There is not one spot on my body that is not painful! One time my son poked me, and I just said ouch, before thinking to stifle it. He said he had barely poked me, but the pain went in waves before finally subsiding….

February 19, 2012 at 9:43 am
(157) Cherylpetro says:

PART TWO.I have been belittled and abused by doctors who don’t understand what is going on with me, so instead of trying to understand, they belittle, and avoid the situation. I have a scary big lump that runs from about the shoulder to my elbow on the back of my arm, and it makes it hard to use it for much, for too long. Now, I feel like my body is a giant freak show, with all the lumps and bumps and hardened lymph making my legs huge, hard, and difficult to keep from infections. I can’t get on my knees without so much pain I cry. I cannot get my blood pressure taken without so much pain the reading is inaccurate, and brings tears of pain to my eyes too. I tell the doctors, etc about the problem I have with the blood pressure cuff pain, but as usual; it falls on deaf ears! It has made me someone who avoids going to the doctor, because it makes me feel terrible emotionally for things I have no control over! I would be so happy to find a doctor who actually listens, believes, and looks for an answer! If you find one, please let me know! Be well, everyone!

February 19, 2012 at 9:51 am
(158) Cherylpetro says:

I saw a new treatment for people who can’t seem to lose belly fat, and it is non-invasive, but the heat from the machine, breaks down the fat, and then it moves through the body as waste. I am wondering if that might be a useful treatment for some fibro lipomas? It is very expensive, but if it is approved as a medical treatment, and not cosmetic, possible insurance would help cover the cost? Just a thought.

April 8, 2012 at 7:23 pm
(159) Newakis Campbell says:

I AM SO THANKFUL I FOUND THIS SITE!! I can’t talk to anyone who understands my personal private hell I live in!!
I am 37 years old and a mother of a ten year old son. I am getting divorced from his father who sounds like some of the husbands I read about on here….but I am in a WONDERFUL RELATIONSHIP NOW WITH A TRULY LOVING,SUPPORTIVE, KIND MAN!!! HE IS MY ANGEL AND I DON’T KNOW WHAT WE WOULD DO WITHOUT HIM!!
I am having serious issues with the lumps. They are in both wrists near my hands, very painful and now I think they are in my neck. I went to an orthopedic Dr and he sent me to another orthopedic Dr. He put a splint on my left wrist 3 else ago (before the knots showed up on my right wrist) and said if this doesn’t help, I will send you to a HAND DR!!! WHAT THE HECK!? He sent me home with tylenol 3 with codeine for pain, but he did tell me that I really shouldn’t BE IN PAIN!! I AM AT A LOSS. I moved 8 mos ago, lost my primary care physician and I can’t find a Dr in my new town that will believe me that I am in so much pain. Not just the wrists but also my usual FM pain, I also have a fracture in my lower lumbar region from a car accident when I was 14, I have degenerative disc disease, bulging discs, compressed discs, osteoarthritis, fatigue, etc. etc….But I was scared to tell the orthopedic doctors I have seen about all of NY other problems because I have learned to just talk about whatever the current issue is. Otherwise, they treat me like I am a drugseeker! Or they say “Your too young!” My mom had all of the same problems. We buried her a year ago last November. She had Cancer. Bone cancer, liver, lung, it had spread everywhere and she was
hereditary, then I am not too young! I just need help. I am scheduled to go back to the orthopedic Dr that put the splint on me this Tuesday. Why? So he yep! IThen on Friday, I go see a spine doctor. I just need someone to treat my pain and help me figure out what is going on with my entire body!

April 11, 2012 at 1:21 pm
(160) Tammy says:

Thank you for posting about the LUMPS and Fibro…I have had 9 lumpectomy’s in my life and I keep asking the Dr’s if it has anything to do with my Fibro, time after time they keep telling me NO! “some people just develop these”! This makes me feel much better.

April 13, 2012 at 1:15 pm
(161) Somanabolic Muscle Maximizer Download says:

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April 13, 2012 at 1:32 pm
(162) DubTurbo Downoad says:

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April 13, 2012 at 11:38 pm
(163) kim says:

Well I am in constant pain with the lumps on my left leg some days are worse than others. the worst one is on my left butt cheeck right at the pressure point for nerves. what are feelings on best way to make life more comfortable I’m 40 and some hat active please ladies would like ideas . nice to know Im not crazy like my one set of doctors tried to tell me. crazy because I have fybromy. n lumps on my legs that hurt so go to a head shrink n take this psych med that helps with pain and go away. Anyone else get this one???

April 24, 2012 at 4:23 am
(164) cyn says:

Check out DERCUMS DISEASE aka as ADIPOSIS DOLOROSA! I found this disease using painful subcutaneous “knots.” I am including 2 links I found helpful! You will find tons of information on this disease! I hope this helps! Blessings, Cyn

http://dercums_data.tripod.com/
http://www.dercumsdisease.com/

April 29, 2012 at 3:51 am
(165) GaylaT says:

In reading the article and comments about the under the skin lipomas, I have a bit different take on them. I’ve had these for so many years I can’t remember when they started but I had the first one removed and biopsied about 1984. The Dr assured me when he scheduled the appt. to remove it that it was just a fatty tumor. He got a surprise when it was actually a venous tumor attached and wrapped around a blood vein. I had another one removed as it was in a place that made it painful and it too was around a vein. Fast forward 25 years and I have been treated with Squamous Cell Carcinoma, usually a non-fatal skin cancer. Being my usual curious self I began to read everything available on that kind of cancer and after reading several articles that basically said that it is not ever going to cause death unless left untreated until it ate my arm off I found another aspect of it. It said that there are a certain percent of the people who have Squamous Cell that have benign fatty tumors in their body that this cancer will affect differently in that the lumps will begin to change and grow into a malignant form of cancer. I was shocked beyond words. I have shared this imformation with my general practitioner. She suggests we wait and see what happens. Evidently there are tests that can be run to see if there are cancer cells in my body that she will do if we ever think it is necessary. I’m beginning to think that I might want to do that just for my own peace of mind. The cancer on my arms contiues to pop up new spots that have to be burned away with an acid treatment and a session under a blue light. I try not to mess with the tumors that I can feel in fear of setting them off. I notice now that Ihave a growing one in the back of my neck against my spine. I’m thinking about going to a neurolegist to have it looked at and possibly removed. If anyone reading this has these tumors and skin cancers be aware that they might not stay as harmless as they seem to be now.

May 11, 2012 at 1:26 am
(166) Marsha Biller says:

I have always wondered what these are. I had my Mom run her finger over my thigh one day and she pulled her hand back and said “what are all those bumps?” I have been asking myself the same thing. I have them all over and there is quite a few on my left pectoral muscle and breast. I just had a mammogram and ultra sound done, they found nothing. All of mine are VERY painful. I do not find relief with massage, narcotics, heat or ice. I just deal with it. Thanks to this discussion, at least now I have an answer

May 22, 2012 at 6:30 pm
(167) Linda M. says:

Multiple painful fatty lipomas above and/or below skin, lasting for months, is Dercum’s Disease. See lipomadoc.org. Dr. Herbst is the doctor to see!

May 27, 2012 at 1:25 am
(168) evie says:

Please no steroids look at dercums disease as soon as possible

June 27, 2012 at 12:31 pm
(169) Ashley says:

I’m a 25 yr old female. My first “lipoma” showed up a yr ago and now have at least 5. The one on the back of my neck cause alot of discomfort and pain though my shoulders and back. I have a tingly numbness feeling that shoots down my spine when bending down. I first went to the ER to see what it was and she said some type of tumor possibly a lipoma and I needed to get a biopsy. I didn’t have the money at the time but later on had an Mri done and nothing showed up. I started seeing another doctor who said lipomas didn’t cause pain. I was very frustrated.. like they were saying I was lying or just not listening. He told me it was probably a muscle spasm and gave me muscle relaxers. I’ve tried multiple things to relieve the pain and discomfort and nothing really helps although it seems the more active I am the more inflammed t seems to be. The other lipomas are in my thighs and one I recently found in my abdomen barely to the left of my belly button but extends a little above and below it. They are tender to touch. I feel nauseated at times especially w certain movement and while laying pj stomach. I can’t remember the last time I actually felt “good” or went through a day without a headaches.. I’m not sure if all this is connected but haven’t had these problems since they started showing up. I also saw a dermatolotist who said they were lipomas and they don’t do anything about them unless they grow very large and its a cosmetic issue. am 116lbs and have heard that weight has somehing to do with it.. I’m not sure about that? If anyone please would share their advice it would be greatly appreciated. My problem seems similar to a lot of these and make me not feel so crazy and alone so thanks for sharing! I don’t understand why these doctors don’t stop and listen and actually care about he patients. It’s sad. Should I be more persistent and ask for further tests.. get a biopsy done?? I’m lost and would love some actual answers instead of maybe its this or maybe that..

June 27, 2012 at 11:09 pm
(170) Ashley says:

Reply: Gayla
I too have one on the back of my neck that slightly goes over my spine and is nearly the length of my neck. Does yours cause pain and have you found anything out about yours?

June 29, 2012 at 7:25 pm
(171) josette says:

I have lumps all over I have large ones on my lower back I can’t sleep I can’t sit I can’t stand I have constant pain my legs n arms go numb all the time I live in Illinois I can’t find a Dr to listen to me I’m 37 the Dr.s think I’m to young to have so much pain I cry a lot due to pain my son has “cystic fibrosis n its hard tataking care of both of us someome please help me find a Dr. I’m so depressed from the pain email me josette.wittmer@gmail please help sometime I feel like its to late

July 2, 2012 at 8:15 pm
(172) Jane says:

I have had early symptoms of fibromyalgia…. One session with a kinesiologist, dealing with my emotional state and the symptoms vanished…they are back at the moment while I have been suffering with stress and now I have a lipoma. I will go back to see my kinesiologist ASAP.

July 6, 2012 at 9:06 pm
(173) Michele says:

I haven’t even gotten through all the comments, but feel compelled to leave my own. I just had a lipoma removed from my forehead. Plastic Surgeon thought it was very odd to have one there. I have 2, but he only removed the visible one; the other is hidden by my hair. Before removing it he injected it with hydrocortisone, which didn’t work. In addition to that, I have 3 herniated discs in my back that have been causing be problems lately. First I was put on a course of steriods. Then I got an injection (6th time in the last 6 years), which seems to have helped my back pain greatly. I have never been officially diagonesed with FM, but I’ve had 2 doctors suggest it as an explanation for my symptoms. Although my back pain is much better, everything else is worse!! I’m terribly depressed & everything in my body hurts. I have said from the beginning that it feels like my headaches are coming from the stupid lump in my forehead. When he started to numb me up, he was obviously hitting a nerve & I told him so… felt like he was sticking me with a needle 10 inches away from the spot he was actually sticking me. Headaches were gone for several days, probably because that nerve was numb, now it’s back stronger than ever AND 1/4 of my forehead is completely numb. UGH! I know I”m venting here but it’s very frustrating. Ever since the steriods for my back pain, then the steroid injection for my back pain, steroid injection for my lipoma, then surgical removal of that lipoma, all within 2 months, everything has been worse. I’ve complained of these symptoms for nearly 10 years with no help. I just feel lost.

July 7, 2012 at 9:53 pm
(174) Kiki says:

To all of the spouses out there who don’t understand what people with Fibromyalgia go through each and every day need to take lessons from my wonderful and caring husband. When I can’t sleep all night, my lumps ache, the pain that I endure on a daily basis-he is by my side drawing my warm lavender/eucalyptus epsom salt baths, massaging me and giving me his undying love and support. It is so important to have a support system and if you don’t struggle with FM you really don’t understand. I am so very lucky to have him by my side!!!! I pray for a cure on a daily basis for this dreadful disease…I just want my life back!

July 24, 2012 at 11:48 am
(175) BONNIE says:

I HAVE DELT WITH THE PAIN AND DISCOMFORT OF FIBROMYALGIA SINCE 2001 AND HAVE YET TO FIND A DOCTOR THAT UNDERSTANDS MY CONDITION. THE FIRST DOCTOR TO TREAT ME GAVE ME INJECTIONS IN MY LUMPS AND TRIGGER POINTS TO TRY TO RELIEVE SOME OF THE PAIN AND SOMETIMES THIS WOULD HELP FOR A WEEK OR SO, EVENTUALLY WEARING OFFAND LEAVING ME IN THE SAME PAIN. THEN HIS SOLUTION WAS TO PRESCRIBE PAIN MEDICATION AND THAT JUST LEFT ME ZOMBIE-LIKE AND UNABLE TO FUNCTION. AFTER TREATING ME FOR NEARLY SEVEN YEARS HE SUDDENLY DECIDED HE DIDN’T BELIEVE FIBRO EVEN EXISTED AND WHEN I ASKED TO BE REFERRED TO A RHEUMATOLOGIST,I WAS DISMISSED AS HIS PATIENT. I HAVE NOT BEEN TREATED FOR MY FIBRO SINCE THAT HAPPENED IN 2007 AND HAVE CONTINUED TO SUFFER.IT IS UNCONSCIONABLE TO ME THAT THE MEDICAL PROFESSION HAS SO LITTLE REGARD FOR THE SUFFERING OF PATIENTS THAT MERELY WANT TO LIVE WITHOUT THE PAIN. I WILL SOMETIMES WAKE UP VOMITTING,HAVE THE LUMPS AND TENDER POINTS, AM DEPRESSED AND EMBARRASSED BY THE ” FOG ” THAT CLOUDS MY THOUGHT PROCESS. DOES ANYONE KNOW HOW TO FIND A DOCTOR THAT WILL RESPECT YOUR FEELINGS AND SHOW SOME COMPASSION.I DON’T WANT THEIR SYMPATHY, I WANT THEIR KNOWLEDGEABLE HELP.

July 29, 2012 at 9:10 pm
(176) jean says:

have had limpomas removed three times from upper back for three years poor sleep pattern and very painful causing nerve problems in arms hands and now legs and ankels swelling up and down

August 3, 2012 at 12:10 pm
(177) Nancy says:

July 3rd, 2012 just out of no where I started having excruciating pain in my left low back and hot sharp pain running down both sides of my left leg and really pounding pain in my knee. When my husband took me to our family doctor they said it was sciatica and gave me a 6 day pack or prednisone. After 1 week no change in the pain…couldn’t sleep at night. My doctor sent me a low back x-ray but the x-ray showed no disc problem. The next week I went for an MRI…I suggested to my doctor to do an MRI of my left hip but they insisted it was a bulging disc so they ordered on of the lumbar spine. The MRI showed NO PROBLEM with any of my discs. Three weeks of pain and no sleep my husband took me to the ER and the doctor there found what they thought was a fatty tumor on the top of my left hip. When pressure is applied to it the pain running down my leg gets worse. I’m now scheduled for an appointment with a neurosurgeon on August 8 th.. So over a month and still in pain, not sleeping. Why don’t more doctors check their patients for lipomas…??? and why don’t doctors listen to their patients? After I did my own research I found that a lipoma can herniate and when the fat leaks out it can affect nerves (this is referred to as a Back Mouse)…I have five more nights to go through before I see the neurosurgeon so I’m praying for God to help me through a few more days of pain and then hopefully I will find help.

August 3, 2012 at 8:47 pm
(178) sharon says:

Thank you for this site. I have so many similar experiences as the ones that are posted. I have been dx with fibromyalgia, sarcoidosis, and now am wondering if also have DD. I have numerous lumps and sometimes they are SO painful, others they are slightly uncomfortable. I have asked for steroids but my DR. does not want to RX as he says it will make the sarcoidosis worse when I come off it. I find I feel better gluten free and controllling sugar. I have swollen elbows, knees, and ankles. They are always tender. I’ve had test done on my heart as I have pain in chest but heart always looks good. It must be the lumps. It is scary to even do a self breast exam as they are FULL of lumps. Under arms, groin area also get lumpy and tender. I have a fatty liver, dysparenia, sinus polyps, sleep apnea. So you can see I have many health issues. Wondering if they are all connected? Any info will be appeciated. Blessings to all.

August 28, 2012 at 1:48 am
(179) donnalee says:

I had a lypoma the size of a baseball removed from my shoulder and it had invaded all of the muscles. It was and at times still is very painfully. I had another one removed from my back at the same time, it was even bigger.25 yrs ago I was told I have fibromyalgia and inflammatory arthritis unclassified. Now I have lots of lumps…legs,arms,back, jaw, toe. Iwould love to get rid of em, but surgery is really more painfully than the lumps. Push yourself and do as much as you can. Use it or loose it really works! Stay away from cigarettes and drinking and anything that does harm to the imune system. 1/2 a cup of coffee 3 -4 times a day helps fatigue and depression too.good luck.

August 29, 2012 at 2:54 pm
(180) susan says:

Recently diagnosed with FM, and have a ton of knots..especially painful in my left upper arm. Primary care dr prescribed MOBIC, which helped within 4 days…unbelievably better…also referred me to a rheumatologist, who precribed CYMBALTA…seems my sleep is worse, and really no difference in pain, which was better with Mobic…would like to get off Cymbalta, maybe try MSM (sulfar supplement) and magnesium…any one have experience with those…

September 16, 2012 at 12:28 am
(181) debby says:

I was wondering about lypoma bumps inside and outside of privet area of a woman or is it something else? i was told by a Doc. they were just cystitis and as long as the don’t bother me it is best to leave them alone but they interfere with how i feel about having sex

October 13, 2012 at 3:02 am
(182) mike says:

Hi ive had lipomas all my life every year i get more of them i have hundreds of them seen doctor after doctor ive even had one laugh at me because all the ones there feel like needles when bumped touched or gazed he sayed it was in my head there not supposed to hurt and gave me pain pills and sent me to see specialist and sence im on medicaid they could only take 3 or 4 out that mostly hurt i want all of them out i hurt so badly i dont even want to get out of bed im normally the type lifting weights outdoorsmen type dont want to be alive anymore the pain takes over depression sets in and the care of life surpasses me but the only thing that keeps me going with hundreds of painful lumps is my 5 kids and loving wife who keeps telling me its going to be ok shes always trying to find home remedies like caster oil chinese stuff but wheres the help its sure i. the hell not in nebraska every doctor ive met seems to me got there degree from a cracker jack box well thats from me thanks for reading mikemarples@yahoo.com

November 3, 2012 at 7:04 am
(183) shNe says:

I got my first lipoma when i was about 13 on my wrist. I got really freaked out but my doctor assured me it was no cause for alarm. However over the years I got more….and more…and more. Many of them painful. To date I have had 3 surgeries removing anywhere from 20 to 30 per surgery. I had my last surgery about 15 years ago. It would bring temporary relief but it seemed like most would grow back, usually more painful than before. Fortunatly most of them are deep in the tissue and not real visible, but then there are a few that are very obvious….I’ve learned to just accept these dumb things that seem to pop up like mushrooms in a dung pile after a rain storm.

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December 8, 2012 at 1:18 pm
(185) Kim says:

I have been diagnosed with Fibromialgia. I am nervous about really complaining with these Knots all over my upper back, neck, shoulder blades, arms, legs, and FEET! The bottom of my feet hurt so badly sometimes, I can barely walk. A massage helps and hurts! Seems the following day, I hurt worse from a massage. I take pain medicine which controls it sometimes. Not all the time. Doctors are hesitant to give good pain meds thinking we’re all abusing them. The people that do abuse them, hurts innocent, hurting people as myself! My boyfriend tries to bust these knots up and they seem to run from him. When they are busted, it’s like fireworks! Seems to spread all over and the pain in indescribable. I know I’m not crazy now after reading some of these comments. What kind of tests do I need? There seems to be so many diagnosis for this. Last night the knots in the bottom of my feet were unbearable. I just wanna cry sometimes and do because of the enormous pain and lack of understanding. Is this gonna cripple me? I’m only 44 and very active with my first grand baby on the way. I’ve have these bumps/lumps for several years but they are getting much, much worse. Someone PLEASE help.

December 17, 2012 at 11:06 am
(186) Magdalena says:

this truly IS a great site. I really thought I was alone with this – the lipomas. It started with one on my arm, and now I have them coming like no tomorrow on my thighs, buttocks,back and abdomen.
For such a common thing, I am surprised there is not much more knowledge out there amongst the medical field, such as; ways to stop them or non-intrusive ways of getting rid of them, like; Louise Haye, louise borbeau ….i dont know….something other than surgery.
So far, it seems like surgery is the best bet.
I just moved to the Czech Republic. When I get everything settled, hopefully I will find a doctor who will be empathetic enough to assist in the matter, surgery that is.
Thank you and may prosperity of blessings to all be.

January 8, 2013 at 4:48 pm
(187) FAFOREVER says:

I had these multiple painbful lipomas for 21 yrs. But have never been officialy diagnosed with anything till this year. Iwas first dx with Fibromyalga= 2100mg Gaba, 200mg Lyrica, 250mg Tramadol.With all that Im still in pain. And Ive had 9ea. lipomas removed.Provisionaly dx with DD but wish to be seen by Dr Herbst one day. If live long enough.

US Army

February 8, 2013 at 3:33 am
(188) Lynn says:

I have a HUGE lipoma on my right shoulder. Fine in winter, but in summer when I wear a t-shirt or sleeveless top it poses a problem. They wanted to inject me with cortisone, but I refused. I also have a 6 cm tumour in my right breast, and the biopsy results showed it was benign. They are cutting it out to be safe. So I would recommend that you get ALL lumps checked, painful or not!! Hugs to all….:)

February 12, 2013 at 11:12 pm
(189) K.A. says:

Check into Dercum’s Disease and Lipedema…Dr. Karen Herbst is the specialist in both these conditions and is located in San Diego, CA. You can google her name and find her website. Many of the symptoms that are talked about on here sound much like these conditions. Good luck to all.

February 22, 2013 at 8:26 am
(190) Shirley says:

Hi wow really interesting scary, i have been diagnosed with fm, but when i google my symptoms have come up with dercums disease too, keeping in mind m rapid weight gain, limpomas that appear almpst overnite and the sheer number of them in my arms legs and back/stomach, i am beginning to wonder on my symptoms too, also have been diagnosed tihe MS, so the fun keeps on coming.

The limpomas are loose and rubbery under the skin and really hurt, wondering now if i can possibly have fms, ms and dercums, or is that just to wild a ride, i dont know what to think anymore, and the doctors all dismiss these limpomas as being nothing importaint, even my rheumotologist, so where do i go from here i havent a cooking clue, im beginning to feel like a hypercondriac, but i know i am ot one.

please if anyone out there can help me with some answere please i will appreciate it

March 13, 2013 at 7:57 pm
(191) Matthew LaTante says:

Can lipoma have bruising and if so what should i do

March 27, 2013 at 11:52 pm
(192) Alan-Michael Nance says:

i have these bumps on my back called fatty tissues one on my right side of my back and two on my left side of my back they burn everyday and night i wanna know if they are cancer bumps cuz i had them for 5-10 years….

April 6, 2013 at 8:18 pm
(193) Racky says:

I am suffering from Lipomas. I had surgery 5 years ago to remove them from my left thigh. after surgery I went 3 months of going to a wound care clinic to have one of the three incisions to close. Since then the lipomas have grown back. now 3 in the same spot. it is painful and hard to deal with. I also have them on my arms, etc. The leg is the most painful. I went to a pain clinic for over 4 years and I was given codine for pain and muscle relaxers. The pain management doctor told me to have stem cell treatment. Has anyone else tried this? My pain mgt doctor finally dismissed me due to him saying I was not taking my meds right and I know it is because I didn’t have the stem cell treatment.

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April 15, 2013 at 10:41 am
(195) LJ says:

I have small lumps through my upper left leg, and now on my right leg. They are so painful. I used to be able to try to massage my leg. But now,it is too painful to even touch.I cannot at all sleep on my left side anymore. And now my right leg lumps are hurting too. I have to sleep only flat on my back. And I have back problems, bulging disks and other problems, that it is painful even sleeping on my back. But I CANNOT sleep on my side at all!!

Yes, I have Fibromyalgia. My Doctor never explained to me anything regarding the lumps. He just lets me talk, and writes precription. Actually, I see him only every four months. Every month I see his Nurse, who writes the prescriptions.

My pain has gotten SEVERE!!! I need help!!! I do not know who to talk to about this. I am writing this with tears literally!! Can you help explain what my symptoms mean?

Waiting paitiently

April 15, 2013 at 10:51 am
(196) Lilly says:

Hello,

Yes, I have fibromyalgia,

I have numerous lumps in my left leg that are severely painful to touch. I cannot massage my leg anymore. I now cannot sleep on my left side anymore. Now my right leg is hurting. So, I have to sleep ONLY on my back (which has numerous problems too, buging disks, etc) and that is painful as well, but I absolutely CANNOT sleep on my sides anymore. And that is very uncomfortable as well.

My Doctor has never explained to me anything about my lumps. He doesn’t respond to what I say, just writes me a prescription.

Actually, I see his nurse every month for three months, and every fourth month I see him.

I really need help, as my pain is getting unbearable. The pain meds help my back a little, but it does not phase the pain from the lumps on my legs.

What can I do??? I really need someone to help me.

Waiting patiently.

April 17, 2013 at 11:18 pm
(197) Jessica says:

I realize this is a really old post but I had some questions about FM.

My mom has it and arthritis and we’ve always thought I had one of them. We always leaned toward arthritis because my pain is mostly around my joints but I was tested for that and it’s a negative.

She now believes I may have FM because of my pain and where I am sensitive. Not only that but I have some small lumps on my arms and legs and she says that is part if it too.

Is there a test for FM that my doctor can do? If so do you think that I should be tested?

April 30, 2013 at 7:41 am
(198) Gail Watson says:

II have Cfids, Fibromyalgia AND Dercums disease. I have the lipomas in all the same areas of my body that have been discussed here. I wanted to tell some of you who mentioned….spinal stenosis along with Fibro.
I have spinal stenosis CAUSED by lipomas pressing my spine. The lipomas are actually closing off my CNS and causing lots of extra pain and symptoms. I have had Cfids/fibro since 1975. I am 72 now and got
the Cfids and fibro from an outbreak of something in the hospital I worked in. 200+ medical personel all got sick the same week as I did.
I believe that it is the toxic mold Stachyboterus that came from the AC
system in the hospital. I just wondered if any of you also know WHEN it was you became very ill. I was bedridden for a year. It HAS improved
though of late. I was bedridden again 3 yrs. ago with all this stuff.
Anyway..just because you have Cfids or Fibro. it doesn’t mean you can’t
also have Dercums. There is no end to the level of pain we are stuck
with. Good luck to everyone anyway. And you CAN survive it. I have Diabetes and Atrial fibrillation now, plus Colitis. So if you live as long as
I have, no telling what can be added to the Cfids/Fibro. Life is still worth
living though. Don’t give up. we just need the drs. to LEARN more about these autoimmune illnesses and quit telling us that we are imagining all of this pain. God Bless!!!

June 26, 2013 at 10:23 am
(199) Julie Simpson says:

Lipoma’s are not always painless. My family and I have some rare ones too. My mother has 2 in her skull and I have one in and onto of my spinal cord. They are watching them. Mine they will not do surgery on until the symptoms become so bad I can’t take it anymore as the outcome of surgery is being paralyzed. So some lipoma’s cause major issues for people. My Uncle has had 170 taken off his upper body. My mom has had about 10 taken off.

June 26, 2013 at 3:50 pm
(200) thabang says:

Hi I’m thabang a 25 year old male from south africa
I have had very painful lumps over my whole body mostly on my legs, iv had them since 2003 and still have them..iv been to docters all over the city I live in..they all don’t have a clue what this is..

The lump develops and turns red and very painful and after a day or two it becomes a black patch still painfull..

Wish there was an option to upload pictures on this site I really need help iv been in extreme pain half my life
Thank you

August 11, 2013 at 3:43 am
(201) Jackie says:

My Dr. is a Rheumatologist they specialize in FM. I have lumps all over my arms legs and back and most are sore most of the time the ones in my upper arms are so sore that I can not sleep on my sides any more. I have never asked him about the lumps I just assumed it was FM. When I push on them to try and make them stop hurting I bruise myself. I bruise real easy now. I would love to have a massage but can’t afford one and don’t think I could stand to have one. Pain pills and muscle relaxers don’t even work. I thought they would but at least sometimes they put me to sleep but I wake up crying in pain if I have turned over onto my sides. I have so many that surgery would not be an option besides the fact that I take 6 weeks to heal!! Grin and bear it I guess.

August 27, 2013 at 7:02 pm
(202) Laura says:

I am a 25 year old fibromyalgia sufferer.

Everyone needs to buy ‘What your doctor may not tell you about fibromyalgia’ by Dr St Amand. This book will explains exactly what these lumps are, why they are causing all our pain, fatigue and suffering and how to reverse them.

Please do NOT rely on mainstream medicine for fibro. They know zilch and do not care!!

August 30, 2013 at 11:41 pm
(203) KC says:

Can Shari who had the lipoma on her lower back, please tell me, was it in the middle of your back, near the spinal column? Also, what type of doc did the surgery and was it painful to sit after the surgery? Lastly, did insurance cover this? Any advice is appreciated.

September 23, 2013 at 8:08 am
(204) Genia says:

It exhausts me just thinking about everything I am reading on this site, how many of us not only have all of these symptoms and diagnosis but have so much knowledge/information/connecting all of these symptoms to one disease that is connective with all these other diseases. I just got diagnosed and probably got the gold metal for being the most difficult patient of the year award. I was so sick and tired of repeating my symptoms and writing another new symptom, in my 6 year journal I kept track of, that I just got mean and nasty. Doctors do not like when a patient does their own research and is prepared to fight for your life. I told my doctor that I was literally “tired of being my own doctor” and paying them for the work I did without them!. You guys should also look into Lyme disease. Fibromyalgia/CFS is another name for it and that it is Lyme disease. Everyone out there who has this diagnosis is strongly encouraged to look up a documentary (to watch on line for free) called Under/Beneath our skin from 2008/2009. You will all get information that will make u very angry and upset. there is a reason we know more than the doctors. It is being ignored by doctors for a reason. I think that a lot of them know whats really going on and some don’t. Maybe we should ask our doctors to read this site for about 5 minutes just to see how many of us are “being our own doctors” and that yes, we do know what were talking about and actually do know more than they do about this aweful disease and how lonely it is to keep it to yourself bcuz u get looked at as if you just came back from Mars or something. Anger can be the best motivator and can be used to our advantage in this never ending battle with doctors who are supposed to care and help you by doing their job, tats what were paying them for. I think Im gonna schedule and appointment just to ask for all my money back, LOL Knowledge is power!!!!!!!!!! keep reading this site and watch the documentary!!!!!!

October 13, 2013 at 10:48 pm
(205) S. Kellogg says:

I’ve also got lumps all over my arms/legs. Some of these get quite large and are extremely painful. The lump appears overnight, gets really red, painful to the touch and is very sensitive to pressure. I’ve had a biopsy done and I’m waiting on the results now. Eventually these lumps will reduce to a pea size shape, redness and sensitivity will be gone, but then I have what looks like a large bruise. What causes these to appear? Is it something we’re eating?

October 16, 2013 at 12:17 pm
(206) Kym says:

Hello,
I would like to know if anyone has had a lipoma on the side of their neck? I actually have one there, one on the inner elbow which is large, one in armpit, and they are all very painful. My groin hurts too but can’t tell if there is a lump or not. The one on my neck is near the supraclavicular area so, I googled and seen info. on lymphoma. Which looks like images online. I have been very fatigue, sweating, nauseous, lumps change in size(small then huge). It has been very scary since I havent seen images of anyone with lipomas in that aera of that neck. If anyone can help me with more info. I’d appreciate it.
Thank-you!!!!!!!!!!!!!!!!

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I read all your articles and find them most helpful, plus I get others to read them as well, because a lot of people still don’t understand about what Fibromyalgia is all about!
Thank you for your hard work in keeping us informed, it really is very much appreciated.
I am finding myself suffering more from this disease and it is really starting to affect my life to the point where I have been thinking of looking into assistant living homes, that’s how bad I feel most days, but reading you articles gives me a shoulder to lean on and knowing that there is someone out there “who knows”, what and how I am feeling, thanks again, keep up the great work, and hopefully all this information will get out in the public more, and get more attention!

October 19, 2013 at 9:46 am
(209) Julia Tod says:

I have small painful lumps all over. I have shiatsu therapy regularly, and my therapist has taught me how to press gently on the area and breathe into the pain allowing the area to relax and the pain to ease, and disperse. It does help but on days like today when the pain is extreme the only relief is from Tramadol and rest.

October 20, 2013 at 11:13 pm
(210) Sharon K says:

I have two rather large lipomas. One is on my upper left quad of my abdomen and another is located directly under my right arm. That one is the largest and made my doctor a bit nervous. I was sent off for two mammograms, two separate ultrasounds on it, and finally a chest/breast CT Scan to rule out anything suspicious. It has been concluded that it is lipoma. I had a lump there for over 8 years now, but it just recently seemed like it got bigger .. that is what prompted me to get it checked out in the first place. My question to all of you is: has anyone ever had their lipoma grow like that?? Is that normal or do they usually stay the same in size?

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I have been diagnosed with candida/yeast hypersensitivity. These lipomas are from toxic build up due to candida and leaky gut. Get on a diet, heal the gut, then tweak your organs afterwards. It will take a few years, but if you’re worried about your health, you will do it. :)

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November 8, 2013 at 11:41 pm
(214) ryan says:

These lumps are bothering me so damn much I hate it. This is the sh***iest thing that has ever happened to me. Someone pray for me to what ever God you may please because I need it!

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November 30, 2013 at 3:07 am
(218) Teresa says:

Ii was diagnosed with my first Lipoma in 1983. It was in my right calf and very painful. It wa removed and the surgeon said that it was small at the time but not unusual for them to come back. It did, in the same spot and the second one was also removed in 1996. This time it was larger than the surgeon’s fist.both were benign but I was told that iif it came back again that I miht not be so lucky. Well it’s back. But i have to get my knee replaced first before we do anything to it. I also have them all over but they feel like marbles under the skin. Prayers to all that suffer from them. I know they hurt!

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December 13, 2013 at 12:22 pm
(220) Wendy says:

I’m so incredibly glad I found this today! I just had a doctor’s appt yesterday about the numerous painful lumps under my skin in my biceps and thighs. The doctor, my primary, blithely told me I was worrying for nothing & they were sebaceous cysts. These lumps *hurt*! They are far larger than the standard cm or two sebaceous cyst. And they aren’t anywhere near the surface of the skin. They’re deep. Thank the goddess I know now it’s related to my Fibro and CMPS. I would far rather throw myself on the mercy of pain management or my endocrinologist (the pair of docs who take care of the Fibro) than believe a wrong DX. THANK YOU!!

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December 29, 2013 at 8:36 pm
(222) Chris says:

I had 15 lipomas removed surgically, within six months after about 20 more popped up. its almost like i wasn’t supposed to get rid of them. i basically find a new one every week. yes they get real painful.

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February 3, 2014 at 7:29 am
(227) jasper says:

I have lipoma on top of my forehead..is it ok if i will go for operation..?

February 9, 2014 at 9:08 am
(228) isabelita says:

These postings are blowing my mind! I was recently diagnosed with FM after a solid year of chronic pain/swelling in my knees & hip and unrelenting pain in my lower back, neck and shoulder blades. Have CFS for 25+ yrs (I am 47) with 5 bad flare ups. When I get a flare up, they are life altering and devastating. When in “remission”, I am good; really, really good. I have been in “remission” for 6 yrs but waiting for the next flareup. It’s inevitable. Here it is; FM. This IS my next flare up. Chronic pain that makes it super difficult to keep up with my hectic life. (NYC commuter, professional, mother, wife, daughter….) 3 months ago I noticed 2 tender lumps on my lower shin; really hurt when I put my socks; hadn’t noticed it prior. Days later, 3 more lumps on the other leg (shin & upper ankle). The lumps are so sore, they throb even when nothing is touching them. I mentioned it to my Rheumy, he said they just little tumors of fibrous tissue; tender & possibly unsightly but nothing dangerous. Soon I woke up to 5 more/same region of my legs. :-( He never mentioned a relationship between CFS/FM. I hope they don’t get worse. My heart goes out to those who are suffering. I am a little scared. I hope this doesn’t get worse. Good luck to everyone who has posted. It is hard for people who don’t suffer from this to truly understand what a burden we carry.

February 22, 2014 at 3:33 pm
(229) Diane says:

Anyone with painful lipomas research Dercums Disease

There is a Dr. Herbst who is a specialist on this
Very rare but painful disease. There are websites and Facebook pages to get more info from others with it, but I just wanted to help and give this information.

I do not have it but a year ago I had a few painful lipomas and I feared that I did. I pray I never get a flare up again.good Luck and take care

February 27, 2014 at 5:42 pm
(230) mary says:

I have had these lumps of various sizes, ranging from pea size to small flat watermelon size. I first noticed these in my early twenties, but had fibro since childhood. The first one I ever noticed was the size of a grape and was red and hot to the touch, also very sore. I often would get two or three, always on the lower part of my legs. I was seen at Stanford Hospital for them back when I started noticing them and they cut a tiny piece off each one a tested them and came back with them diagnosed as erythema nodosums….hot red lumps?? That was it. I am now 53, my daughter has them, shes 24, diagnosed with fibro at about 17. My mother also has them, fibro diagnosis around 80.

March 3, 2014 at 10:46 pm
(231) Julie says:

I too have small lumps the size of peas under my skin on the sides of my upper legs. I also have sever itching in the muscles of my arms that usually occurs at night. I have been using gabapentin but it is getting worse. I had gastric by pass and wonder if this is related due to a dietary deficiency?

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March 11, 2014 at 3:20 pm
(235) Cynthia says:

Amazing blog-finally the ineptitude and rudeness of doctors has been exposed. I diagnosed myself with fibromyalgia seven years ago-demanded my doctor prescribe Lyrica and have some relief.

Imagine my surprise when my physical therapist advised the lumps in my lower back were untreatable and I would have to take Percocet forever. I was treated with a TENS machine after exercises at PT which temporarily reduced the pain. This electro-stimulating pulsing device has been extremely effective in helping diabetes nerve damaged patients. I ordered one off Overstock for $34.00-plus extra self sticking electropads. Last night I used it until the battery depleted. I went to sleep w/o Lyrica-Percocet or PAIN for the first time in years. The relief is temporary but damn at this point I’ll try anything.

I live in Seattle and our legalization of marijuana is my next venture to find alternatives to Dr.’s-Pharmaceutical Lobbies-and ignorant naysayers. We don’t have to accept pain or believe the aholes who call us hypo’s. Thank you for all your input. Hope to all.

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April 14, 2014 at 9:32 am
(238) Heidi says:

I have a lipoma on my back. Its just below my right shoulder blade and is often very painful.
I had another lipoma removed from my left hip. It started around the hip joint but then continued down to my thigh. It was extremely painful and I had to have it removed. On extraction it was weighed and it was 10 lb in weight! ! They had to put a drain in the wound site which was in there for 3 weeks.

April 15, 2014 at 3:23 am
(239) Amy says:

Lee Ann, #22

Yes, I have the same thing on the outer sides of both legs. I also have them on both front upper thighs, my biceps, lower abdomen, back upper arms and a few on the insides of lower arms. The ones on the outer sides of my upper legs are the only locations where I can run my hands down that area and there are way too many to count and both legs are very sore to the touch. In the other areas, the knots are different sizes but all sore to the touch. I started getting these years ago and just thought my nerves were bunched up. There are so many and some so big I decided to google it for the first time because I’m freaking out a little bit. I have started to experience shooting pains and I am beyond fatigued. Your situation with your legs sounds identical to mine . I have a great doctor and when they open in 5 hours I plan on calling to make an appt. I will post here when I get a diagnosis. Good luck!

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April 22, 2014 at 8:04 pm
(241) Lisa says:

I too have multiple lumps (painful when I touch them, or become sore at night) on both outer thighs. I’m glad I’ve read this site…it was very helpful. It sounds like limpoma. I’ve tried stretching, which helps at times, I’ve massaged them with little effect and even tried using a rolling pin on them, per someone’s instruction. Now I’ll go to my doctor and have her check them out. Thank you!

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