Lumps & Bumps: Fibromyalgia & Lipomas

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

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!

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

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.

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!!!!

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

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.

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

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!

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?

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.

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.

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.

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.

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.

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.

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!

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…

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

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?

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.

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

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.

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.

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.

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:)

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?

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.

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.

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

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.

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.

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

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

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.

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….

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.

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

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!

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!

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

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.

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.

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!!

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.

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

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!

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

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!

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.)

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.

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.

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!

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

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

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.

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.

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.

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

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

Excellent information is very useful

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.

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

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.

philly, look into “Ganglion Cyst”

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

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

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.

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?

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.

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!

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

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.

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!!!:)

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?

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. ; )

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

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.

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.

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

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.

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

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

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

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.

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.

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

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.

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?

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.

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.

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!

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

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!

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…

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.

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.

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!

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.

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.

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.

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.

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…

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.

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.

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.

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.

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.

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.

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.

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.

SORRY— NEEDED TO READ THE NEXT.

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.

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.

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

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?

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.

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.

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.

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

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

Do you know if this balm is effective? Thanks.

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.

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.

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

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

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.

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

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.

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?

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.

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

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.

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.

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.

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.

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.

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.

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!)

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.

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????

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!

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……….

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.

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

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 .

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.

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

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.

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.

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.

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??

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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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