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Adrienne Dellwo

Odd Nerve Sensations in Fibromyalgia & Chronic Fatigue Syndrome

By February 1, 2009

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Tingling. Burning. Crawling. Itching. Numbness. Highly sensitive skin. All of these are odd nerve sensations that can be a part of fibromyalgia and chronic fatigue syndrome. They're most common in the feet, hands and face, but you can get them anywhere.

The medical term for these feelings is paresthesia. Sometimes, paresthesia is associated with peripheral nerve damage or chemotherapy drugs, but most of the time the cause is unknown. Just another fun part of having a neurological condition, I suppose!

Paresthesia can range from barely noticeable to really painful. I get a variety of these sensations, including an occasional "itch" that feels like a cigarette burn, tingling in my hand, and sometimes extreme pain just from contact with a waistband - it doesn't even have to be tight.

My weirdest paresthesia is in my left leg. When I run a finger up and down the back of my calf, I feel the touch on the side of my leg, going the opposite way (I discovered this while shaving). When I mentioned this one to my neurologist, he shrugged and said, "You folks with fibromyalgia get a lot of these weird nerve things that no one believes - except we neurologists, 'cause we see it all the time."

If you have painful paresthesia, treatment can include NSAIDs, antidepressants (SSRIs or SNRIs), vitamin B12, capsaicin cream, massage or acupuncture. Alcohol can make them worse, as can too much vitamin B6.

Do you have paresthesia? What sensations do you get? What helps you? Let us know about your experience, either by commenting below or in About.com's Fibromyalgia & Chronic Fatigue Syndrome community forum (under Newsletter & Blog Topics.)

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Comments
February 1, 2009 at 11:10 am
(1) Sally B12 says:

Vitamin B12 deficiency is a common cause of paresthesias, fatigue, depression, and an array of neurologic and psychiatric manifestations. It should always be properly ruled out when a patient is suspected to have chronic fatigue syndrome, fibromyalgia, mental illness (including post-partum depression/psychosis) and many other neurologic disorders. Patients should have a serum B12, methylmalonic acid, and homocysteine test before starting high-dose B12 or receiving injections—to determine if B12 deficiency was the cause.
Unfortunately there is a major knowledge deficit in the medical and health care community regarding B12 deficiency. Out of frustration I co-authored the book, “Could It Be B12? An Epidemic of Misdiagnoses,” Quill Driver Books, 2005, with Dr. Jeffrey Stuart.
Billions of health care dollars and more importantly millions of lives are at stake because many health care practitioners are not contemplating or ruling out B12 deficiency properly. They tend to forget that B12 deficiency is a true medical disorder, and can be caused by a variety of reasons. Minot, Whipple, and Murphy won the 1934 Nobel Prize in medicine for their life-saving discovery, yet 75 years later many patients are not being treated or are being misdiagnosed. This is particulary happening to older adults greater than 60. All elderly who fall should always have B12 deficiency ruled out—but are not screened for it. How many hip fractures and other fall related injuries are caused by untreated B12 deficiency? The medical journals report approximately 15-20% of people over age 65 have a vitamin B12 deficiency. However, B12 deficiency does not only strike the elderly.

Sally Pacholok, R.N., BSN

October 9, 2011 at 11:44 pm
(2) Jill says:

I know what you mean. I was finally diagnosed as having pernicious anemia after years of suffering. I thought it was menopause and it was, caused by the B12 deficiency. I now take B12 shots monthly. I remember not being able to think, my mind was a total fog and then my feet started going numb. The worst was not being able to wake up. I had a small child at home, a husband in Iraq and I couldn’t get out of bed. Thankfully a friend realized something was wrong and got me to my doctor who did the test right away and two days later I got my diagnoses and first shot. To this day, coming out of that fog was one of the most painful things I have ever gone through and I NEVER want to experience that again!

November 18, 2011 at 2:29 am
(3) Carl Stressford says:

Some good info. Does anyone know how to fix a vitamin B12 deficiency?

February 3, 2009 at 1:57 am
(4) meme says:

yeah I have those symptoms all the time all over. The itching drives me mad, I have my back in scars from scratching. my hands burn especially when I use them alot and feel like my nerves are crawling all the time. One thing I noticed and don’t know if anyone else has experienced is I get sharp jabs like some one is sticking a needle in me in different areas of my body like my belly, feet, legs, sometimes face. once I rub it, it leaves for awhile but it hurts and is weird.

June 6, 2011 at 9:12 pm
(5) Anna Q says:

I get those bee sting sensations all the time in my hands and legs…drives me crazy

September 16, 2011 at 10:49 am
(6) purplebear says:

yes I get those sharp jabs and it is so sudden and unexpected that I will hollar out in pain and get looked at like I’m crazy. My fingers become drawn up curl and lock up till i have to pull them out straight with the other hand. Theyare so painful most of the time that it is hard to function. My feet and legs are also painful. I have a sensation of being bady burned on most of my body and it is spreading.It is now painful to shave my legs. I feel like my husband and anyone else I tell about my symptoms think I am some kind of malingerer or hyperchondriac.

October 27, 2011 at 2:07 am
(7) skeetelmore65 says:

Hey Purplebear, we meet again. I sure can feel ur pain. U describe ur pain, like I do mine and it sure has hit home. I wish I knew what is causing my legs to hurt so much. They used to bother me more when I stood on them or sit for any lenght of time only, but now I have trouble laying here in a still position. It is really beginning to worry me. I wonder @ things like Deep Vein Thrombosis or some kind of circulatory problems. I already been told that it probably wouldn’t be a bad Idea to go see a Cardiologist and I am I sure hope we can find answers soon.
Do u have any other problems that is? I have head pain,neck and back pain. It is horrible and my head is getting these lumps or knots on it. I have also been wondering, how do u settle with a problem with ur brain hurting. It is just wrong, but very possible. How in the world did my brain get involved? There is only one way. I was in an accident yrs. ago to where I hit my head on the roof of a car. I did get an immediate headache, but didn’t follow up, since it was only a hit on the head. The guys insurance settled…yeah, for 1800 and I was so stupid to take it. I just didn’t know. Live and learn..hey? Take care and God Bless.:))<3 Karen

February 3, 2009 at 5:15 am
(8) Lindsay says:

Sometimes i get patches of skin (usually on my face, arms, or legs) that feels sunburned. It lasts for a day or so.

August 12, 2011 at 11:02 am
(9) Christine says:

I can relate to this, I have tried rubbing in lotion to cool areas of my skin that feel burnt.

February 3, 2009 at 1:01 pm
(10) chronicfatigue says:

meme,

You’re not alone! I get those a lot, too. They make me jump most of the time, and sometimes scratching or rubbing makes the whole area hurt.

October 12, 2011 at 11:52 am
(11) ann marie says:

amd2857 i have fibro and cfs developed parastheisa approx. a yr. ago. i cry a lot it is very painful. help

February 6, 2009 at 3:43 pm
(12) Dena says:

Yes. I get all that too. I remember once sitting on the toilet & feeling like someone tapped me on the back. I think I jumped a few feet! What about the ripping feeling in your muscles near the joint? Is that in the same category? I also occasionally get what I call a ‘twang’ where my foot, or ankle, or wrist or whatever will act as though it is broken. Xrays show nothing. Wrapping it & staying off of it for a few days helps. Then I will wake up like the 3rd or 4th day & it is like nothing ever happened! What?! So I’m thinking that maybe most of us ARE a bit crazy only because having all these unexplained things can really drive a person mad, can’t it? But if we are smart, we laugh about it (when the pain is gone) because we know that going to the looney-bin isn’t going to solve anything. :)

February 6, 2009 at 4:09 pm
(13) Judy says:

The bottoms of my feet hurt! When I lie down or sit with my feet up and then stand up the pain is so awful, I can hardly walk. It also starts when I am grocery shopping, or whatever. It is getting worse – more frequent and more severe. It’s like walking on rocks and the rocks are IN my feet. The whole bottom of each foot hurts. Anybody else???

April 22, 2011 at 3:13 pm
(14) julie e says:

YES!! i’ve never heard or read of another soul feeling that exact thing! That was one of my first fibromyalgia symptoms. CRAZINESS.

February 6, 2009 at 4:13 pm
(15) Heather Jacoby says:

Adrienne, your “weird” symptom with your calf/let is not too weird. Do you have Netflix? You should Netflix this Nova program on the brain. At least you can visit this website and read about brain re-mapping:

http://www.pbs.org/wgbh/nova/mind/note_nf3.html

This one guy lost a limb and yet he FELT the limb when he was shaving. Apparently, the brain has a “map” of where certain “places” on our body are. If we lose a limb, the brain is starved for INPUT, so another part of the body that is close in the brain’s “body map” will start taking over the spot for the missing limb and when you touch the re-mapped part of the body, you can feel it in a missing limb.

It’s hard to explain, but it’s REALLY fascinating! The Nova video is great at making this all make sense and I bet you can rent the video at the library if you don’t have Netflix.

February 6, 2009 at 4:17 pm
(16) Heather Jacoby says:

I get the creepy-crawlies and I’ll jump and nearly scream because I think a bug is on me!

I was sitting down and I felt this pretty strong distracting sensation on my foot. I looked down and there was a strand of hair against my skin. The feeling made it feel like something much more substantial was touching me!

I sometimes get “bug bite” sensations.

The neurologist thinks that my tingling fingers and “heavy” feeling in my left arm may be due to a pinched nerve in my neck. She wanted to put me on neurontin, but the feeling just comes and goes so much that I don’t want to be on another med unless I have to.

February 6, 2009 at 4:42 pm
(17) andilynn says:

I’m sooo glad to see an article on the net about this problem, so thanks a million for the info! I have FMS and have my own set of weird sensations. My feet are the worst. They feel tingly and cold almost all the time when I’m sitting down. I even thought I had a circulation problem until my pain Doc reasurred my that I am too young for that and explained that the symptom is a part of the FMS puzzle. I also struggle with other skin sensations where it feels painful if I put on a bra or elastic waist pants that aren’t way too big for me! Fortunatly that comes and goes, and most of the time I can wear stuff thats a little too big.
I haven’t tried using the capsaicin cream yet, but I may try it on my feet.
Thanks again to our guide for keeping us informed on these issues!

February 6, 2009 at 10:54 pm
(18) Gail P says:

To Judy: I’m sorry your feet hurt, but I’m glad to find that I’m not the only one! My family doctor just thinks I’m really weird with all my “symptoms” and clumsy accidents. I also went through a time, maybe a month or more a few months ago where if I got up to use the bathroom at night, both of the bottoms of my feet hurt SO bad I could hardly stand to put pressure on them. About 10 years ago while wallpapering my kitchen, I touched a screw on a plug in with a stainless steel knife. The wallpaper was wet so I got the shock of my life, knife flew across the room, my eyeballs felt like they were literally outside my eye sockets and the lasting effect for a few weeks were that it blistered both of my feet and burned them. My doctor says that could be related to now, but I think it’s just another Fibromyalgia symptom! Also, for years, every so often, I get what I call “exposed nerves feelings” from the waist up and it has always only been on the right side. You could draw a line down the middle of my body and mark it. Doctor said he’s never heard of that either. In the past, my right side of my face and right hand have gone numb many times. Neurologist, after making me go throught every possible test said probably TIA’s (Transient Ischemic Attacks(mini strokes) and Stress induced. Who knows. I have 2 toes on left foot and 3 toes on right foot that hurt so bad sometimes I almost cry. They swell some, turn red and are starting to curve weird at the joints. Ruled out Gout and everything else. What a strange thing Fibromyalgia is. I never knew until I found this website that I wasn’t the only person in the world like the doctor tries to make you feel like, that has all these weird symptoms. I’ve almost quit mentioning anything to my husband or 2 grown daughters, because I know they think I’m a hypochondriac!

October 15, 2011 at 10:25 am
(19) skeetelmore65 says:

Gail P and to all the others..I can relate w/all of u, but when Gail mentioned getting electrocuted..that sparked a thought in me @ when I had a nerve block and was done the same way. We carry current through our bodies and when the doc hit my spinal cord area, I jumped on the table like a bolt of lightening had come out of the sky and struck me. I told the doc that my hands and feet were immediately made numb and he kept me to monitor me that day. The other 2 nerve blocks that was previous to that one, didn’t do me that way, but that last time when he struck me, it was in an area of my back where there were compression fractures located. I wonder if that had anything to do w/it. It is called a “wet tap” when that happens to a person. All I know is that they want to say I have Fibro, when it all began after I was struck. My hands/feet are still numb to this day and I think that is self-explanitory.
I experience burning that actually feels like someone put a cigarette out on ur skin,aching that feels like the flu,piercing/stabbing pain that can be anywhere at anytime,itching until my skin swells and turns red..and it doesn’t take much for it to get irritated or happen, sore feet are so bad to where I can’t stand on them and yes, it does feel like rocks..are in my feet, my knees hurt ALL the time to where it feels like someone is pulling my veins/muscles out from underneath where the hamstrings are located,creepy crawling feelings like u have a bug on u or water running that can be ice cold, stiffness that make my leg freeze in that position to where I have to bend or pull it back straight and I will SCREAM out it hurts so bad. There are just endless things I could say @ this debilitating disease because the misery goes on and on.
I pray for ALL of u guys and I do hope we can find some kind of resolution for us..SOON. God bless always.:))<3 Karen

October 25, 2011 at 10:01 am
(20) Purplebear says:

I am wondering if anyone here is on disability. I am finding it harder to function all the time. I get very little sleep too and that doesn’t help the situation. My arthritis is getting worse and all these burning stabbing stinging sensations along with the itching crawling sensation is enough to drive a person crazy.

February 6, 2009 at 11:08 pm
(21) KayLee says:

I have FM & was reading about everyones weird sensations & symptoms and wanted to comment on mine as well: I have had everything mentioned above….burning aching feet, tingly & numb feelings in limbs, ( but mostly my calves are numb and its very noticeable when I shave and cant feel my skin…I also get very sensitive skin to the point where it hurts to just lightly touch my skin in certain places, usually on the inside of the wrist and arms… I get shooting stabbing pains everywhere at diff. times,and of course all the IBS,GERD, dry eyes & mouth,muscle pain and even face pain ( hurts to put my head in my hands)my pain is deep bone and muscle pain daily everywhere……often radiating…
but I also have arthritis in my neck & back , facet & osteo, & degenerative disc disease, spondylolisthesis, & mitral valve & even a blocked salivary gland…..I dont know why But I feel all of it is related somehow…
…theres so much more but I can never remember all of it at once because there is so much of it…..one thing I wanted to mention is that I had a live blood cell analysis last year and it showed a B12 deficiency as well as numerous yeast markers and other bad stuff……but what was so weird is that I was taking a large amount of sublingual B12 daily prior to the test!! And I STILL showed as deficient. That was really strange since it was taken under my tongue and not in the stomach… but I have a ton of gastric issues and also think that my FM is related to gastric stuff somehow…( like my not being able to digest things properly & nutrients not being absorbed for some reason) I also wanted to mention that I feel the FM may be related to yeast overgrowth in the body ( not in the ‘usual’ places either…….because it can grow in our organs , etc and cause many terrible and similar symptoms. And last I wanted to say that I believe it is never ONE thing that causes stuff to go wrong in our bodies….that it is numerous things accumulating or going on simultaneously….has anyone out there have all the stuff I mentioned?? If so Id love to hear from you!

February 7, 2009 at 5:51 am
(22) Marcella says:

I am just coming out of a three month period of extreme toe pain. I could hardly walk. The pain didn’t even let up when I lay down. The doctor tried to tell me it was arthritis but I know better. Sure I am willing to concede that I might have some arthritis but why would the pain move from one set of toes to another, and then appear on both feet then disapear on one foot? Weird. I’m on my 15th year of being diognosed with FM/CF, and I still get confused. Several months before the toe pain, I had foot pain. The bottoms of my feet felt like they were on fire. These pains come and go, sometimes for months. My current ache are identical sore spots on the upper part of both arms. They feel like bruises, like someone punched me really hard. I seem to cycle through pain spots and mysterious itches that feel like bugs crawling under my skin. It’s maddening at times. I am thankful that I do experience periods of relief – when symptoms disapear or die down for awhile and I am able to feel normal.

February 7, 2009 at 9:31 am
(23) KayLee says:

Marcella, I too have periods of some relief….and also the pain radiation as you mentioned. Feet, legs, shoulders get really bad,and arms..and especially the arm area as you said that feels bruised….this is the strangest stuff ever! When I a feeling really bad the flu like symptoms appear again thankfully not very often. Sometimes the pain everywhere isnt as bad and thats a Godsend. While I feel bad everyone here is in constant pain.I am glad I have someone who understands………………Prayers to ALL of you!!

February 7, 2009 at 9:39 am
(24) happy says:

Wow, that Nova site explained a lot. I used to have the sensation of little spiders crawling in my right eyebrow. Knew it was just the hairs moving but odd feeling. I was going through a series of spinal injections of steroids (one doctor was sure FM did not exist and this would solve my problems.) After one session I told the doctor that the spiders in my eybrow had dissapeared and he looked at me like I was crazy. That was when I realised he had no idea what he was dealing with! Anyway I have had a lot of the above mentioned pains and strange feelings. A month ago I burned the top of a finger in the oven, not badly, but since then I get the feeling there is a hair laying across my hand and I keep trying to pick it off. I have had bottoms of feet feel like I was walking on glass for years and it finely went away. I have sharp pains in my legs that make me jump and cry out all the time, only for a second. Sometimes when I evacuate my bowels there is a sharp pain in the middle of my back on the right side, same spot all the time. When I was much younger I had sensations of warm water running down my legs. That lasted for decades, before I ever had the fibro symptoms. I have had restless legs occassinaly all my life, then years later I would get the same feeling in my stomach, and just recently I get the feeling all over my body, very uncomfortable. But it will go away eventually. I never know why they goe away. Some of these weird things last decades and some years and some just a week! I can track what causes flare ups but not these nuerological things, very frustrating. Glad to know finally I am not alone!

February 7, 2009 at 11:18 am
(25) Kathleen R says:

To Heather:
I have that problem too, with the stray hair feeling like something more significant is on my skin. I can’t stand to have anything touching my skin, it drives me mad. And then there is all the involuntary twitching which we have no control over. It is all enough to make us insane : )

February 7, 2009 at 1:03 pm
(26) Wendy says:

I also get the creepy-crawlies on my legs. During the summer I am always thinking bugs are on my legs…and the feeling of burning hot wires on the soles of my feet at times. A stray hair on the back of my neck or arms drives me crazy, as it feels like bugs…yuck!
Having found much that works.

February 7, 2009 at 1:04 pm
(27) Wendy says:

Make that haven’t found much that works.

February 7, 2009 at 4:21 pm
(28) KayLee says:

I was wondering what kinds of meds anyone takes and if one type helps all this better for anyone than another?? And Id like to share what I do……I am trying to do a more natural approach, or at least starting to. Like eating better foods….and paying attention to what bloats me out real bad…I thought I may have had celiac but now think I am sensitive to certain foods, chemicals, etc…..I am trying to eat more raw fruits & veggies…organic is best so I dont eats a lot of pesticides, etc…..organic meats too so we dont get a lot of hormones, etc…. with FM we tend to have allergies & sensitivities.( I am allergic to many many things..) I take 2 Benadryl every night to help with sleep…..because prior to that I was awake all night…it makes me drowsy enough so even when I get up my usual 1-3 x night I can feel relaxed enough to fall back asleep fairly quickly. There are no side effects for me in doing this and my body got used to the Benadryl quickly and it doesnt make me anymore sleepy than before the next day. I always have had the fatigue….I try to take daytime catnaps…they really help. I truly believe the Benedryl has helped me in more ways than one with this …my sinuses arent bad anymore & they were soooo bad b4 that I couldnt breathe well through my nose & used a lot fo diff things….now I dont wake up stuffed up and can breathe well all the time. Its really amazing. I think the constant flow of Benadryl helps my body to not produce so much histamine as before…..

I take Cymbalta for pain, wasnt depressed really before so didnt need it for that but after awhile it helped immensely with pain. And outlook. Was taking Neurontin before but it made me too woosy/ dizzy and high feeling…worse foggy brain than ever!! I felt a thousand times better after I quit taking it. I read a lot about Lyrica which is related to gabapentin and I would NEVER take it!!!! I am thinking about trying tio get off Cymbalta too since it is supposed to be bad for your liver but I have had no side effects to speak of and my liver is fine so far and its been many years since I first started taking it. But it is very expensive and there isnt a generic brand…

I quit taking other types of pain meds and take Excedrin once in awhile. I have gained a lot of weight and need to get on an exercise plan but am afraid to hurt again really bad as before…..maybe start with walking again.

I take Solgar brand vitamin D3 gel caps 1000 iu daily…..it is a fantastic supplement to take!! Please check into it if you already havent ……I also take Nordic Omega 3 oils, a good B complex from a good health food store, and North American Herb Oregano Oil, & am always researching new things for FM….I know malic acid is good but havent tried it yet as well as a few other things. The oregano oil is for any overgrowth of yeast or bacteria that may be in my system……but be careful with everything and research it well….all brands are not created equal. And read to make sure it is right for you.
If anyone has any ideas to share please let me know????I think much of my trial and error stuff has worked well for me….and maybe it will work for others too. I also read a lot of self help and spiritual books ( not necessarily religious)…it helps adjust my perspective and keeps me in check mentally……..

“WHEN YOU CHANGE THE WAY
YOU LOOK AT THINGS,
YOU CHANGE THE WAY
THINGS LOOK.”

February 7, 2009 at 4:29 pm
(29) KayLee says:

…..I forgot to mention the most helpful thing of all for me……myofascial release. We FM folks tend to have many trigger points as they call them….or tension balls in our muscles as I call them…..and they hurt & pull & ache…..after I started taking Cymbalta I was able to get massaged….and that alone helped enormously….but if you can find anyone who can do myofascial release and work with you on that so it is tolerable the results are absolutely wonderful!! But you must remember to drink lots of water and breathe!! ( I drink distilled water only) For me, it is a ‘good pain’ ,if you will…..and after a session I feel incredible! At first it was hard to get used to cuz it hurt….but as I said it became a ‘good’ hurt…..and took away so much pain and tension ……

February 7, 2009 at 5:13 pm
(30) kt says:

Anyone have pain on the sides of your big toes? Sometimes tingly when the touch another foot or the floor. Depending on the shoe..alot of pain, too.

October 3, 2011 at 10:17 am
(31) BT says:

Yes- my left toe. This was one of the first symptoms I had when I was on chemo- which cured my breast cancer but left me with fybromyalgia. It actually felt like my left toe was broken. T

February 10, 2009 at 3:19 pm
(32) Bonita says:

Thank goodness I read these comments ! I have many of these feelings , and now I know I’m not losing my mind . I’ve had some Doctors look at me like I’m from outer space when I try to explain these sensations .

February 10, 2009 at 7:30 pm
(33) Dena says:

Kaylee: Yes, I have all that too. I also have the same suspicions that you have. My feet always hurt & keep me from doing most shopping so I let hubby do it. :) I wonder if doctors ever read these??? Because it is interesting to know that alot of my symptoms that I thought were just something else, everyone else has too. I am still experimenting with natural remedies but the best I’ve found so far is Chiropractic adjustment followed by massage. Accupunture is an absolute MUST if you have vertigo.

March 3, 2009 at 6:57 pm
(34) Maurann says:

Reading these make me realize I’m not nuts. Does anyone get weird sensations in their stomach –like when you’re scared- & it flows upward. I’ll feel it in my arms at the same time. It’s very uncomfortable.

July 13, 2011 at 5:25 pm
(35) Michelle Shook says:

I know it’s been 2 years since you posted this, but I wanted to say YES! I feel butterflies all over my body nearly 24/7. That with the creepy crawlies is my most prominent symptom and very irritating.

March 17, 2009 at 5:23 pm
(36) Pennie says:

I have no idea what’s going on with my skin.. it started last night when my boyfriend was giving me a foot massage. All of a sudden the skin on my feet felt really prickly and sensative when they were touched.. and it hurt to even walk on them… then my hands started feeling the same way. Touching things feels really weird.. and not at all normal.. now the feeling has spread to all over my skin.. on my whole body. As long as Im not touching anything.. or there’s no pressure being put on my skin.. then it doesn’t fell bad.. but just taking off my clothes and feeling the material rub against my skin it feels so sensative that it hurts… it’s really hard to explain.. but some of the feelings some of you have described are like how my skin is feeling. I’m going to make a doctors appointment asap.. I’m really scared… It feels so strange.. and I don’t like it. I feel uncomfortable all the time.. touching anything or when anything touches my skin.. even lightly.. has anyone else felt this way?.. where the feeling was all over their skin?

September 20, 2011 at 4:12 pm
(37) shawna says:

Penny I have the exact same thing did you find out what it is.

October 12, 2011 at 12:29 pm
(38) ann marie says:

amd2857 i have the exact same as you for over a yr. it is part of fibro and cfs i cry a lot if you ever want to talk i will be willing this is not easy by far. i wish the best to you and those a like. we are all in the same boat ann m

March 21, 2009 at 12:50 am
(39) Gerri Baughman says:

I have had Scalp problems for 2 1/2 years. It feels like scalding water has been poured on my head and then a bunch of needles poked all over my head. It radiates down my forehead, sinuses, into my jaws creating severe tmj. When this occurs several times a day, I just tighten up, tense up and suffer terribly until I can get some relief. I was put on Lyrica about the time this started. It really helped me for a while and then the side-effects started…weight gain, libido gone, etc. My massage and adjustments helped, also. I take muscle relaxers – Flexeril and Robaxin – alternate. Sometimes I end up feeling it is more sinus related and take sinus pills with the muscle relaxers. I started getting botox treatments in my scalp/temple/neck areas about 2 years ago. It has helped a great deal to relax the muscles. Sometimes I brush my hair hard or scratch my scalp with my long nails or poke the nails into the scalp hard…it is just random what will help one time and not the other. Heat helps the most. I want to shave my head and rub muscle rub all over it.
Has anyone else had the SCALP pain? I take Cymbalta 120 mg 2x day. I also take Voltaren for my awful arthritis in neck, lower back and hands. I have Ultram for getting through each day – and then when the pain is terriblke, I use Lortab 5. It helps me when I walk and am busy doing many active3 things.
Please someone cokmment on the burning scalp.

December 2, 2011 at 11:43 am
(40) Misty says:

Gerri,
I have had the scalp problem for a very long time. I know exactly what you mean. My jaws forehead and sinuses due the exact same way, it seems when I go thru a ” flare” it gets worse. If I get a cold or any other infection it makes my scalp inflamed as well. I’m going thru a flare at the moment. Which activates my scalp. I have severe burning and itching. I have been tempted to shave my head, I do start to pull every single hair out cause the pain gets so bad it feels like the hair is hurting it. I’ve been to numerous dermatologist but no medicine they give me works. I watch what shampoo I use, it seems if I use Pantine or any over the counter shampoos and conditioners makes it worse. There is a chemical in them that my aesthetician was telling me is very harmful. I will have to find the name again. I find if I put a cold pack on my head it helps . I use lyrica and cymbalta as well. I take the lowest dosage . I also take the loratab when needed. I take supplements from my chiropractor they are made only from vetables. She has me soak in two cups do epson salt and two cups of apple cider vinager . Make sure your bath wateris hot drink plenty of water. You can also but lemons in your water and rub lemons on your inflamed muscles. The acid in the cider and lemon helps break down the inflammation.
Sincerely
Misty

March 31, 2009 at 12:52 am
(41) Jackie says:

WOW. I have never seen so many of MY symptoms and weird issues in one place. I’m NOT nuts. Ok well maybe a little.

Lovely fibro. Let’s start at the top and work our way down. I had scalp issues about 10 or more years ago. Doctor could find nothing wrong with my scalp or face around the scalpline. When I was leaving the office, the receptionist said “I have similar thing – try baby lotion.” Which I did and it soothed. But I still had that painful scalp off and on since then. But figure oh well, just me. (that’s our mantra: “it’s just me”)

Had some serious check pain events that led to Holter Monitor, stress tests, blood tests, you name it. Heart is just fine, ty. Sigh.. “It’s just me.” In hindsight, probably chrondoditis (sp) of lovely Fibro.
Fibro also gives me lovely rib cage pain too. Feels like I was in a boxing match.

Started feeling like I was getting old age achies. But thought gee I’m only in early 50s. Hurt to walk to bathroom in night or early morning. Other times too. Sometimes feels like I walking on rocks. Felt like legs were like tree trunks.

Started feeling like this during the day, at work. Would stand up and feel like I gained 20 lbs of water in one hour.

Spatial issues when driving, night driving issues, all over muscle pain, memory loss, confusion. Forget familiar words, lose train of thought mid-sentence. Then had osteopath treatment for low back and oh that was the wrong thing. After 15 treatments – oh you have fibro. Huh? So, had major fibro flare from that osteo treatment… took months to get over it. It hurt to have a fan blow air on me. Sheets hurt my skin.

Doc put me on Cymbalta for fibro, Celebrex for Osteoarthritis. Tramadol for really bad break through pain.

So there’s fibro, osteoarthritis, spondylolisthesis (spinal stenosis? we’ll see), prediabetes. Facet joint problems and degenerative disc disease. Dry eyes so bad I can no longer wear contact lenses. Be sure you eye doc knows you have fibro.

Tried water aerobics cause less stress on joints but it caused a flare. Sigh. Might try it again and just not try so hard to be “normal.”

Insomnia is another giftie of Fibro. Sometimes the overwhelming fatigue in the middle of the day sends me to take a nap. I’m my dad already!!

I love it when someone says oh just get up and get active. GRRR. I would LOVE to. I’m retired and have all the time in the world but none of the energy. The pain is so bad from just standing in kitchen to cook or wash dishes… and that’s from the spondylolisthesis most likely. I know weight loss would help but it feels like a vicious circle. I “used to” do a lot of walking, exercising, dieting, etc. I’m sure I’ve left something out cause my memory is not what it used to be either. It just takes a bit longer.

Oh yes and cannot work now even if I want to cause driving is difficult, not knowing what store I just walked out of, looking at words on page and seeing different words. Good grief. The gift that keeps on giving.

But NO SYMPTOMS ARE TOO WEIRD. and we are not alone as long as we have each other.

April 7, 2009 at 5:33 pm
(42) Tacticus says:

The best treatments I have tried, as well as heard about is this combination:
A complete whole body detox,
liver cleanse (with kidney and associated)
amish anti-parasite remedy
colon cleanse
epsom salt baths
caster oil packs
non yeast-diet (candida is a major contibuting facvtor in many caes)
non processed sugar and vinegar diet (both contribute to candida growth) while dtoxing very little sugar even organic should be eaten, except for stevia or agave.
get mercury fillings removed
take care of any possible tooth or other hidden infections.
check for any toxic exposure and use foot pads and zapper product to remove them. Also use zeolite drops to safely naturally chelate in low doses any toxins.
Eidolon the foot patch company will give you free toxicity tests.

Read Lyn Grabhorn’s book Dear God! What’s Happening to Us?
If you believe whats in the book or not, do yourslef and the world a favor by at least saying the proclamations aloud. There can be no negatives from that at the worst, and only gains at the least.

Consult with a shaman, even by phone or online to see if there is any soul trauma or marks on the aura which get materialized in the physical body. Alberto Villoldo is a P.H.D. in medical anthropology as well as a shaman, the best of both worlds of western physical science and the indiginous sense of spiritual undestanding.

These three steps have fixed 99% of my symptoms, as well as my natural health practioner at boddybrilliance.com

The key to these unknown conditions are that many causes take place from the spiritual soul link to the mind subconscious and body, so fixing only the physical may provide good results, but completing the rejuvination, eliminating the causes, which means a total and absolute remedy requires readjustment and repair of the spiritual, mental and physical aspects of a person. It can be done, it just takes a shift in ways of thinking, a willingness to do whatever it takes to return to being a fully actualized human, and accept nothing else-which means destroying negative thought roots and years of programming. It tales mental fortitude. There are people who have done it, you can talk to them! The bodybrilliance.com website will be up in May so look there for info and ask away. Anyone wanting more info ask here as well.

April 15, 2009 at 2:46 am
(43) Gina says:

Judy and Gayle,

I have had the same problem with my feet and it comes and goes. Last summer it was so bad I couldn’t stand it any longer so I went to my podiatrist. I had a Morton’s neuroma, which is a small tumor on a nerve. I had this removed and haven’t had the pain return. I have also had the Dr. do a procedure where she froze a nerve in my foot which also has helped. It was painful during the procedure and a day or two after but I have had good results. You might try checking with a Podiatrist who knows a little about FMS. It has made a difference for me. I’m not saying the pain has gone completely away but it isn’t nearly as often or is as painful. Also, try to stay away from shoes with much of a heel this aggravates the problem. I had to go to a good tennis shoe that gives alot of support, such as New Balance, I also now wear orthotics.
Good luck to you both.
Gina

June 9, 2009 at 10:07 am
(44) Jas says:

My comment is more of a question. Has anyone here ever had chest pains so bad you hear your bones making snapping sounds? I started having all kinds of pains a few years ago, then falling ill all the time. Doctors kept telling me it was Mono, at first I thought, ok, but then it was never going away, and then the docs would say I was doing too much and my body was not healing itself from anything I would catch. Then more pain would follow, in almost ever inch of my body. They sent me to specialist for carpal tunnel syndrom, knee specialist, x-rays on every joints, bone scans, you name it they have sent me for it…but now reading here, I have almost every symptoms mentioned here and more.
Also, I find it very hard to do my every day work load, and keep a job, because I get so exhausted all the time. I am off work for a bit to see if things will get better, but to your opinions, do things get better?
I’m only in my early 30′s…what should I expect from this? Anyone with helpful answers???

Thanks, Jas

June 9, 2009 at 12:41 pm
(45) Adrienne - Your Guide to Fibromyalgia & ME/CFS says:

Jas,

I’ve had excruciating chest pains from costochondritis, but I’m not sure what to make of the snapping sounds.

The virus that causes mono, Epstein-Barr, is one of several that are believed to trigger ME/CFS in some people. It’s hard to say, though, either way — it could be that your doctors are right and with enough time and rest you’ll get better, or it could be that you’ve developed a chronic condition.

Even in the worst-case scenario, though, know that you can improve your health. Many of us, while not cured, make huge strides and regain most of our functionality. The most important thing is that you take good care of yourself now, and if you’re still not recovering start trying different treatments to see what works for you.

June 12, 2009 at 1:47 pm
(46) Jas says:

Hi again, Does weather severely affect people with FM or ME? Its been rainning for the last couple of days and the heavier the humidity the more pain I seem to be getting. It bad enough that its making sick to my stomac and the migraines, pain throughout my body… I feel like if someone touches me hard enough I may brake like glasse…is this typical? I’m trying all kinds of pain relievers and not helping much…any advice?

July 25, 2011 at 8:19 pm
(47) sylvia says:

I have to take all of my muscle relaxers pain meds fibrous meds for nerve pain and anxiety meds and lay down. Be still and keep warm. Sometimes that will work
I do this extreme pain elevation every time the weather change.I live in Missouri so I get this quite often. .

June 16, 2009 at 3:42 pm
(48) Adrienne - Your Guide to Fibromyalgia & ME/CFS says:

Jas,

Yes, changes in the weather can affect those of us with fibromyalgia, as well as some people with arthritis and other pain conditions.

Sorry you’re not having luck with painkillers — have you tried supplements? If not, here’s an article to help you get started:

Supplements for Fibromyalgia

July 11, 2009 at 3:06 am
(49) Jackie D says:

I have been diagnosed with fibro. But I noticed a yr. ago that I have tender/soft spots on the back of my head. It comes and goes. When it is there, I can barely blow dry my hair. Also, I can push in because the area is soft. I also have a burning sensation down the side of my face, like a severe sunburn that last a couple of days. I also noticed when I am wringing out a cloth, it feels like my palms are burnt. It also last a day or so. I don’t know a “cure” but I have been researching and this could also be a symptom for ms.

July 21, 2009 at 4:12 pm
(50) Lourdes says:

I,also have ”FM” for 16 years.im tought on pain .not taking medications. Itook cymbalta once and almost died my heart started beating so fast i thought this is it, i cried for days. another madication i dont remember the name it was years ago,i had suicidal thoughts, so now i’m trying natural herbs. like magosteem it helps somewhat. i get muscle spasms every week on my left side, on my neck, back. the bottom of my hurt so badly i can’t stand for a long period of time. i also lost good jobs because of ”FM”.its depresing that you can’t do things that you want to do or you enjoy doing.i feel worthless i’ve been in this pain for so long.this is the life of ”FM”. the doctors dont know how to treat ”FM”.exercise makes it worst, next day is bed day.when have a good day, i feel normal then when the pain kicks in its back to painreality. the older a person gets the worst it is.

July 23, 2009 at 2:03 pm
(51) sue says:

I often wonder when it all began, was it stress years of that diognosed with depression in 1989 after a series of awfull events which were nothing to later on. Maybe an emergencey c section & womb infection & sudden death of my father in 1987. My ex husband having an afair in 1980 when our adopted baby was less than a year old or being told he couldn’t produce children in 1975 which led to adoption. Or was it knowing I was adopted too maybe my illness is hereditery. Was there ever a time I felt right? not really.
IBS 30 years, stress, anxiety atacks tiredness 21 years, numness in limbs years. Fear due to a violent partner then living on my own with 3 sons, 10 hours of brain surgery for my youngest son at 16 who is now fine thank goodness. The death of my middle son 3 years ago, suicide after years of mental illness.
Or non of those things, was it the fall down the stairs twice, other falls with some very severe jolts to my body and head, stress makes me very clumsy, a car crash, a breast abcess.
Sorry to go on but like most fibro sufferers we search back & forth over the years but never really find an answer, but just know that we have felt like crap for years. So what came first? the chicken or the egg!, the fibro or the fall. No wonder we feel like we are going mad, I have most of the symptoms that you all talk about, water running in the legs!, I had water running in my head for about 3 years, to this day everything crackles, its like I can hear my brain working. Wierd. I have the radio on most of the time to block it out even at night. tingling running all through my veins, burning everywhere, yep it goes’ on & on & on.
And what do we get ‘you’re looking well’ another sneakey thing about our illness most of us look pretty good. It is sneakey it creeps up, we get so used to feeling ill that we give up trying to explain to people & just get on with it, because it sounds as if we’re making it up & its all in our minds.
The relief when I was diognosed was overwhelming & I was in shock for weeks as I’d not even heard of fibromyalgia I knew I was ill but a chronic illness!!! woah! Now my husband, family & friends begin to understand, well as much as is possible with no disrespect, I can pace myself, I worked all my life through everything but stopped when my son died, But even that wasn’t entirely it, I was sent for controlled exercise 2 1/2 years ago, done as I was told 3 times, that’s when if I thought I had pains before things really set in especially those horrible pains in the bottoms of my feet that some of you talk about. Yoga, off I went & was wiped out for 3 days after.
So on we go in the glorious world of fibromyalgia, paceing myself, resting when I need to & not when it fits in with other people, learning to say no to arrangements instead of worrying about letting people down, which means I can enjoy things more when I am up to it. I still overdo it at times so I rest or stay in bed especially on the days when its hard to get up at all.
Its not a case of sinking into the illness, its being able to go with its flow. Life’s not without pain & tears but I’ve found fighting it just isn’t the answer.

October 1, 2009 at 12:53 pm
(52) Stu says:

I get the oddest sensation, almost like my skin burning, right at the top of my stomach. weird thing is that it comes and goes a lot but does always seem to get worse when I’m worried about it so I’m sure that it’s anxiety or stress related. It’s only one small area that I feel it.

November 6, 2009 at 6:19 pm
(53) theorist says:

I know this might seem simplistic, but often things are simple. I have wondered if fibromyalgia, polymyalgia, and possibly Chronic Fatigue could have their genesis in extreme stress? It seems to me, from the folks I know with these ailments, that the stress is so severe, the muscles almost seize, like a Charlie horse all over. Once they lock, unlocking them would be slow and difficult, I would think. The nerves, because of their proximity, would also become involved and might manifest any or all of the symptoms mentioned. It is just a theory, but it might be worth exploring, if not in the medical world, by the individuals who are suffering from it. I hope each of you finds your answer.

Guide Response: We know that stress (stress hormones & the stress response system) are involved in these illnesses, but whether the high stress/anxiety levels people frequently feel are a cause or an effect of the illness (or some combination thereof) is still a topic of debate. The more we can control and lower our own stress levels, though, the better we will feel. -Adrienne

November 26, 2009 at 9:23 am
(54) Ellena says:

I have had this for years! I never knew the name for it. I feel like my whole body is crawling with insects – but my face arms and legs are the worst areas. I also get a sensation of burning in my muscles. It aslmost seems as if water is trickling down the inside of my skin. it can be itchy, too an i sometimes get shooting pains.

December 1, 2009 at 3:51 pm
(55) Donna L. says:

I have periphal neuropathy. Blood work and tests have been done. It is idiopathic. I have been having weird sensations in my arms upon exertion, walking or climbing up hills/steps. My arms feel heavy and tingling down to my finger tips. I am also on cymbalta and benicar hct. This is beginning to worry me. It is the meds or fibromyalgia or part of nueropathy?

December 1, 2009 at 5:01 pm
(56) Adrienne - Your Guide to Fibromyalgia & ME/CFS says:

Donna,

The answer could be any of those three, or any combination of them — or something else entirely. Be sure to talk to your doctor about it, and think about seeing a neurologist if you don’t already. It could be nothing, but don’t take a chance with your health by making that assumption.

December 17, 2009 at 10:33 pm
(57) ChronicPain says:

I am so glad to know that others have the same burning skin, painful fingers, and hurting bottom of the feet! I have scratched my skin so much that I have scars up and down my legs and on my back. I get the same sunburn rash on my face and the doc was thinking rosecia, but it comes and goes at will. I can’t even get a root canal without being put to sleep because my nerves will not go numb. Had two done and guess what, I can still feel pain when I touch the place where the toothe was. And the doc tried to tell me these situations were not related to being a fibrite. I find that walking is beginning to hurt worst and worst. Feels like I’m walking on my ankle bones. At least I know I’m not crazy, I just get tired to telling the doc all of the things happening to me. Do-do-do-do Do-do-do-do (twilight zone)

January 20, 2010 at 9:28 pm
(58) Marnie Murphy says:

Since I had a hysterectomy last May, I have a red burning rash all over my body. It started in my legs and has worked its way all the way up to my face. It is really bad on my face, chest & arms. It burns!!! I think it is called Roseola and is caused by my HPV. However it’s been 8 months and the dr. doesnt even address it. It’s painful and ugly and I want it gone!! Can anyone help me?

February 4, 2010 at 4:02 pm
(59) michelle g says:

Marnie Murphy How about shingles?

February 17, 2010 at 2:29 am
(60) Linda says:

What to say – I can relate to every bit of what everyone has to say – I have it all – feet so painful I can hardly walk, Mini strokes – numbness on the left side of head,face and running down the whole body.Non existent bugs crawling on my skin, itchy ears and back. Definately weather contributes – I am worse in summer – feel like my body is a barometric pressure gauge. Candida definately a major factor – I have major allergies and what has become a huge problem with medication is I am chemically intolerant and find any/all meds make me worse – the toxicity of the meds and side effects far out weigh the benefits. I always over do things and never realy catch up. Depression and low self esteem with anxiety attacks are for me the hardest to deal with. People who do not have Fibro see us as normal so cannot relate to how we feel and even our family cannot truly understand – this impact mentally has really hit me hard. I agree with Tacticus – if we can resolve ourselves as body mind and spirit we can overcome so much but that is so hard, I have been struggling for years now. If my mindset is positive I feel better physically and mentally which reduces the fibro symptoms but if I am negative and caught up in all the emotional baggage of the world we live in – I suffer severely from all the sensory effects – odours, noise – generally sensory overload and I find the world we live in exceptionally noisy and chemically toxic. People today also do not care how they impact on other peoples lives ie hooters, music, smoking etc. Following a diabetic low GI diet definately helps. To the lady with the rash – try a detox – I got a rash 6 years ago and it now reoccurs at least three times a year – stress, food and medicine seem to trigger it – like a type of shingles and varies from time to time. You should maybe detox your lymph system. To all – for the pain in the feet try massage – do your feet feel like you have bubble wrap underneath – this is a build up of toxins from the system and massage helps – I cannot have accupuncture or use infrared massage machines as they trigger my feet – so I use essential oils and massage my feet. I think my fibro triggered from injuries in a car accident – flick flacked my car down a 8 ft embankment 14 years ago when it all went to hell – however a genetic family link as well.

March 11, 2010 at 2:52 am
(61) kayla says:

i’m 23 and had fibro for a year now diagnoised and this is scary carp i get tingling in my hands and feet and face my left thumb feels weird all the time pain everywhere its been a scary process

March 16, 2010 at 1:04 pm
(62) Ann Marie says:

Ann Marie…. I have been doing research on this for a long time now.. I am glad to hear that most of you have the same symptoms i have… Many times i cannot get dressed because of these funky feelings that dont make sense.. The Pain well we know all how well that goes. And yes i am dealing with pain a pain management program. I was very active and docile at one time.. Neurton dont take look for other meds. Lyrica i came off of. Good Luck To All at least i am not alone

March 31, 2010 at 9:41 pm
(63) dawn says:

I just would like to tell you all how happy i am to have found this site. iI have been reading up on these strange medical things going on in my body. I am a nurse, and i go to these dr’s telling them my symptoms, and they say they do not find anything wrong. I am 33 yrs old in the past 4 years i have had alot of loss,stress,saddness. My husband passed away when i was 8 1/2 months pregnant. 3 weeks later our baby boy was born…then my dad dx with head neck cancer, few weeks later my mom dx with lung cancer. i am an only child . The next 3 years were pure hell taking care of baby,and parents while working ft as a hospice nurse. i started feeling left upper abdominal pain,shoulder pain on left,and morning stiffness in nov 08.then my hair fell out i began panic attacks, tingling in fingers, feeling like something was crawling on my back,andsevere teeth grinding, now with the pain i had in upper left abd. i feel hard lumps on both sides of my abdomen but larger on left. my doctors tell me its stress related and it could possibly have been created in my head related to loosing my family. so i was starting to think maybe there rite, but after reading info on this site i am going to look into a dr for fibro i live in nj/nyc area if anyone knows a good doc, or has had a similar experience please share. thank you all for listening. dawn

April 10, 2010 at 9:00 pm
(64) Pam says:

Several years ago I saw a skin specialist about burning sensations on my skin, almost like a sunburn. The burning seemed to dissipate if I rubbed the area briskly, but would return later. My arms and upper back are really affected with this. He put me on a low dose of amitriptyline, and very quickly this worked. I still get the sun burn type pain occasionally but not like it was. Once I forgot to get the prescription refilled between Christmas and New Years and after three days the sun burn sensation was quite uncomfortable. I’ve been on the amitriptyline for several years now with good results.

April 10, 2010 at 9:04 pm
(65) Pam says:

I forgot to include my CFS/Fibro history with my comment. I’ve had CFS since 1989 and have been on a disability since 1993, and have had Fibro since the mid 90′s. I haven’t been able to work since ’93. The sun burn like pain developed several years ago.

April 16, 2010 at 11:18 pm
(66) Cheryl says:

I’ve had FMS since 1999 and CFS since 2002. Recently I have been having very funky feelings with my feet going on, like they are ice cold and I feel like I’ve stepped in something wet but nothing wet is there or it feels like tape or something stuck to my foot but there’s nothing on my foot! Also I get the sensation cold water is splashed on my legs/feet. I feel cool droplets, but I’m dry, there are no water droplets to be found. I know this must be the nerves but it is so weird to explain to someone. They would think me out of my mind. Has anyone had any similar experience? I know I have stenosis. Could this be a progression of that?

April 17, 2010 at 8:10 am
(67) dar says:

I am so happy to have come across this site .Iam 40 and have been suffering with all these symtoms for the past 10 years and progressivly getting worse at times and im at my wits end i was recently diagnosed with anxiety and panic but i think its all due to all these sensations i constantly have in my body that scare the hell outta me.i have constant crawling sensations in my head and face crawling and burning like your blood is burning in my limbs and recently there telling me i have gerd which i have been to the hospital for 6 times this week thinking im dying cause of the pains in my chest telling them when my stomach starts burning i get this gross sensation of falling in my stomach and then it travels upwards like a cold sensation like someone is pouring cold water inside my chest and into my arms which frankly scares the hell out of me and i dont now how to make it stop.as im sitting here i have tingling all over or when im trying to go to sleep my body is throbbing has anyone had that happen and its very frustrating and im tierd of going to see drs i see my family dr like once a week but now i deff am going to tell him this is what i have and what do we do about it my problem also is that i am very scared to take medication and its very frustrating and am thinking i would much rather try homeopathy and natural remedies can anyone tell me if theyve had any sucess with any of this …..thank-you so much

May 28, 2010 at 10:46 am
(68) Lisa says:

I’m not sure what is going on with me! Two day ago I started getting a weird feeling in my hands and now it’s like someone is cutting off the circulation to my hands, they are all prickly and burning and hurt and they feel tight. It’s driving me nuts and I’m freaking out!! Does anyone have any clues as to what going on?

June 12, 2010 at 9:39 pm
(69) Vonda says:

I have wierd sensations when I touch certain materials such as metal,drying and handling silverware makes my skin crawl and my mouth water.Paper against the side of my hands does the same thing.I would never talk about this ,I knew people would think I was nuts,until my son started to school and he would make me put his lunch money in his pocket because he couldn’t stand to touch the dollar bill.Putting on lotion helps the sensations quite a bit.Now my 10 year old granddaughter is complaining of the same thing.

June 21, 2010 at 4:58 pm
(70) Adrienne - Your Guide to Fibromyalgia & ME/CFS says:

Lisa,

You’re probably having paresthesias. While they’re common in fibromyalgia, it’s still a good idea to talk to your doctor about it to make sure they’re not caused by some undiagnosed problem. When I started having nerve issues like that, my rheumatologist sent me to an neurologist to make sure we had all the bases covered.

You can learn more about paresthesia here:
7 Types of Fibromyalgia Pain.

~Adrienne

September 7, 2010 at 9:19 pm
(71) Sarah says:

I came here by way of a google search for burning nerve sensations and fibromyalgia. I was diagnosed with fibro two months ago. I’ve had some odd “beesting” feelings, but otherwise just the classic muscle pain and fatigue I’ve read about. Two days ago, the side of my hand started feeling like I’d burnt it. I had been baking a few hours earlier and thought maybe I’d hit it on the inside of the stove and just hadn’t realized it until later, though that would be odd. After poking around my arm, I realized the sensation extended from the first joint of my thumb to within a couple inches of my elbow. There’s no way I would have missed burning that much of my arm! No redness, no visible marks of any kind, but the pain was pronounced. Fun times, I tell you. It took about two days for the sensation to wear off. I can only guess that this is a nerve malfunction related to fibro.

September 11, 2010 at 5:35 am
(72) Cindy says:

sometimes I get like a zapping in my head, feels like an electric current running through my head. It never lasts but a few seconds, but will some times repeat for hours. Anyone else get this?

September 13, 2010 at 10:13 am
(73) Dee says:

I was glad to find your site. I thought I was crazy with the pain I am experiencing on my hand and my arm. It almost feels like a mild sunburn but when you touch it or rub it the nerve pain lingers for sometime. I also am bothered by loud noises and thought that was crazy too, but even the blow dryer can sometimes irritate my nervous system so badly I can hardly stand it. Movie theatres are especially hard for me since the volume is so loud. It can feel like something is just irritating your skin nerves all over. Thanks for your site and info.

October 9, 2010 at 8:31 am
(74) Darlene D says:

I was diagnosed with fibro about 5 years ago. Sort of. It was called a working diagnosis. The Dr. took out a text book to try and do the pressure point test. He put me on amitryptiline which did help with the sleep issues and muscle pain. Unfortunately after a few years the muscle pain returned. I haven’t been on any meds for a couple of years and my Dr. just avoids the topic as did I since he obviously doesn’t know how to treat it. Along with the muscle pain and fatigue (I’ve given up on apologizing for the state of my housekeeping, after working 40 hours a week there is no energy left at all) I have recently developed cysts (frequently painful) on my stomach area. I read somewhere they can be part of fibro. Has anyone else developed these?

October 25, 2010 at 11:48 am
(75) Jim says:

I have never been diagnosed with Fibromyalgia or Chronic Fatigue Syndrome but have experienced some of these paresthesia symptoms on and off for the last few years. Recently the tingling, prickly or crawling sensations have returned and they drive me crazy. They are like tiny pin pricks and they happen all over my body. They’re not painful for me and I wouldn’t describe them as burning. It really does feel like you have tiny bugs crawling on you! Sometimes the sensations subside for a while but currently, I’m on a 36 hour non-stop period of this. This is my third experience with these feelings and it last happened about 2 years ago and the reaction of my doctor (GP) at the time was to question whether I was depressed and wanted to prescribe antidepressants for me. I wasn’t sure how he made that leap and didn’t think he had the proper credentials to make that decision. I eventually saw a Professional and did end up on antidepressants in an effort to “try anything” but these symptoms continued to come and go. After about a year, I came off the Anti D’s because I noticed no difference. The only thing that seemed to help was time. Eventually, they went away. But….now they’re back unfortunately. I’m tired of going to doctors and getting no results – just strange looks. Any thoughts?

November 2, 2010 at 2:08 pm
(76) jen says:

I have not been diagnosed with anything. Been having weird symptoms for 5 months now. Burning skin and muscle pain is the main symptom. It feels like I am going to burn up from the inside. Everything burns. My back is so sore I can barelt get out of bed in the mornings, and it hurts throughout the day, but worse when I wake up. I sometimes get tingley, burning hands, and feet. My new symptom is a burning mouth. My mouth burns all the time, just like my skin and muscles. Anyone else have burning mouth symptoms? Its driving me crazy!!!

November 2, 2010 at 2:38 pm
(77) jen says:

Also, I have had terrible chest muscle pains. Have had 3 EKG’s done. stress test, blood work, Chest ct scan, and everything is fine with my heart and lungs. I get such terrible pains, I feel like I’, going to pass out, and the next day my ribs are so sore, like they have been bruised. I also get stabbing pains everywhere, eyes, legs, hands, arms, face, feet. Like stabbing or electrical waves of pain. This burning pain is the worst though. I get this burning in my chest, abdomen, legs, and now mouth. Almost like its right on or under the skin. Hard to describe I guess. I cant tell if its my skin or my muscles?! I also get muscle twitches once in awhile. Just out of the blue my arm muscle will twitch, or maybe my leg muscle will twitch, but not all the time. Sometimes it feels like there is a hair on my finger, and I go to grab it, and there is no hair on there, just feels like a strand of hair is there.

September 2, 2011 at 8:11 pm
(78) Anita says:

I was diagnosed with FM and then later with Sjogrens and thought I had experienced all the different kinds of pain until a few weeks ago. The drs said I have costrocondritis. Celebrex and anti-inflammatory meds shot my BP way up. The skin and tissue on my lower ribs and upper belly burns, is very painful to the touch. Is this something you have experienced too and did you find help and what was the outcome? This stuff will not go away. I was relieved to see someone else had that burning under the skin feeling–is new to me.

January 11, 2011 at 9:47 pm
(79) RosanneM says:

Anyone ever have sharp pains under their armpit? I have had pain under my right armpit that can really be very, very bad at times……

January 16, 2011 at 5:29 am
(80) dallas says:

I think that I’ve had this all my life.I grew up in a Home for Boys.I was almost worked to death in ther e and when I would complain. they said I had growing pains or it was my imagination.Things have been steadily getting worse.I have been down the same medical track as a good many of the people on this site.Positive thinking wont help if u can’t eat in the longrun because almost everything can affect u in some way.I have some theories that may help.1 When they say your immunity is low or compromised it is probably the opposite ie. it is working too hard.I got shingles about 6 years ago.I felt fine but for an itchy back.By the time I went to the Doc. the 4 days window for taking the antivirals was probably up.I think that this could have exacerbated my nerve endings and made them supersensitive.If I was rundown, surely I should have felt terrible, but all i felt was itchiness which eventually led to the Doc.Later I noticed that on consumption of food and drinks I burn in the l. foot and leg,sometimes on both feet and legs,tops of thighs, sore to slightly touch arms, face ears als sore scalp,comes and goes

January 16, 2011 at 5:51 am
(81) dallas says:

continued; I find that so called healthy foods do me in worst of all.About everything they suggest,high fibre aaaargh pains in the chest like I am having a heart attack, down the arms, especially the right and the veins on the right swell more than the left.Pain in the r’Quadrant and armpit which feels achey and later itches under both armpits.Fresh vegetables,Fruit nuts are all affecting me and more of the bugs,flies,hair sensations.I get little pimples,very small few, not a lot but very painful.Sh owed the doc. some of these under the scrotum and he says oh u have got a couple of small lesions they should go away.Chilie type things assure a visit of these and I suspect cheeses, yoghurts and many other things like wholegrains and nuts.I can eat peanut butters but no peanuts whole- hives on the forearm straight away.I have more in the next post to tell you.Dallas

January 16, 2011 at 6:12 am
(82) Dallas says:

Continued;I think that what they call allergic reactions r histaminic in origin.The t cells to do with immunity produce these and cause a chain reaction which show up as the symptoms we r talking of here.Now I mentioned taste; I take proton pump inhibitors to lessen acid production,I think that these wonderful meds may set up sensitivities.There r enzymes connected with this system and our taste buds an d salivary acids ready for digestion, also there r other histamine receptors in our stomach walls.I HAVE noticed that I seem to now react to almost everything I like and enjoy!!Do u see the possible link I am proposing may exist?The more tasty and colourful the vegs, and fruits the more likely are reactions and symptoms.I have more in the next post

January 16, 2011 at 6:34 am
(83) dallas says:

Now I am a walking barometer,If u put me in a jail cell I can predict changes in the weather 4- 5 days in advance.I get affected badly,not neces sarily in the same part of my body.Exercising makes me worse, a day’s work means a week off to recover,I start feeling sore on the second day not the first day after.I theorised once that my body may lack the ability to clear lactic acid fast enough.I look Quite young for my almost 61 years, so I am told,but sometimes I feel 161!!Sept. 19/2008 I had an op. on my L’shoulder.the first of to be 2.Something affected my whole body and I have been out of and missing in action since.They told me 6-8 weeks recovery.Later theSurgeon said no no more than 2 years!! They won’t have me fronting up for the other in a hurry!!

January 16, 2011 at 7:22 am
(84) dallas says:

Antihistamines make me sleep for days, so they r out of favour for me.Tofranil the same and constipating.A suggestion here that I find Is helpful;Perill a Frutescens vit. c and citrus bioflavanoids Made By Cenovis in Australia help with histamine regulation,Although,curiously they don’t seem to do much for the permanent hayfever that I suffer,which is their main intended use. Essential Enzymes can help too,but here in Australia they only pay for them for 3 conditions, none of which I qualify under.I get them from the pharmacy and pay myself.Aust Reg. No.17307 Bio organics is the sister Co. of Cenovis Who in turn areSymbion In AUST> and New Zealand.Milk Thistle May help the liver as most of the tests show ok. but u may still need help in this regardless of results saying ok>The more meds. u take the more ur body thinks it needs.I ONLY take the lowest pain killer I need and once I needed Heaps of the heavy dute Panadiene Forte,Tramadol Brufen and so on.I only use Paracetomol 500Mg. 2×2-4 times a day and Acimax 1-2 20mg. once a day.I am pleased that I am not as badly off as some of u out there but this sickness whatever they dignose it as is very frustrating as all parts of my life can be affected.I had A Ladie’s Fashions business but had to close dec.2008.I want to restart it but at the moment It’s like swimming up the Amazon River in flood,no amount of positive thinking and self help guruing seem to be able to shake this and I don’t even con s dider myself as being depressed!!Spare a thought fo those people that have people urging them to pick themselves up etc. etc. but they just cannot summon the willpower nor the physical strength to do it!!

January 16, 2011 at 8:40 am
(85) dallas says:

Hot feet Put ur shoes or other footware in plastic bag in freezer or refrigerator before wearing.Cold feet,Take spare socks of lihter and heavier densities to add to or remove as needed.I find that u can’t tell whether your feet and hands and fingers r hot or cold so u have to prepare and experiment.Sometimes hot feet r more comfy in bed with socks on because the sensations of feeling are reversed or confused.Mentholated creams and cool arthritis and rheumatics creams can cool u for a little while.Even the hot and warm varieties may help.Experiment with caution to see what may help u in particular.Toes; keep an eye on them as feeling can be confused or non existent Make sure they don;t ingrow the nails and cause infection.Mix anti fungal and hydrocortisone and like creams and ointments together and apply to feet and toes.Use moisturisers too.can help with itching and heat problems.Glucosamine I tried and after the last 3 month supply I decided that it is most likely to help if u think it will!! has been very expensive,now getting cheaper as the first line of suckers are drying up.Like everthing new, they bleed you dry until the market slows down.May help some people,but did’nt me.I think u should be cautios using if you r growing spurs in ur cartilage and disc areas.Magnetic treatments?? If you use these u r ignoring the warning signs of pain, so u may injure yourself unknowingly.I think that itching is probably the lowest threshhold of pain and is probably due to inflammation produced in the immune system response to both mild and severe misrecognition of proteins and other large molecules and antibodies r produced which then make enzymes that cause reactions in some if not many people.Can show up 20 mins. -2-3 hrs. later as early response or may wait to show up as a later response 36-48 hrs. later possibly mitigated by ingestion of another food or drink.A reason this is so hard to identify,is that people tend to say ‘it couldn’t be that

March 9, 2011 at 1:26 pm
(86) bruno says:

Hi, 3 and half weeks in I suffered a pinched nerve neck which
was excruciating but now at the tail end of it finally. But in the past three days I’ve been experiencing a funky subtle sensation on my right arm. It feels warmish but not painful, thank god and also part of my right toe is numbish. But what drives me crazy is the psychological aspect of it. I suddenly get anxious and paranoid.

March 11, 2011 at 12:47 pm
(87) Tracy says:

I have Fibromyalgia and I had symptoms for over 10 years. It started in my early 30′s. I have what feels like a hot flash, but my face feels like it’s burning from inside. I remember when I told my doc and she looked at me like I was nuts. I have tingly hands, arms, calfs and feet and lately my forearm/elbow area has been hurting me. I have no strength in my arm when I lift things. Doc said it’s probably tendonitis, but I know it’s nerve related. Over Christmas I had burning pain in my calf and foot. Again, nerve related. FM pain is no doubt all nerve/muscle related. I also have radiculitis and neuritis in my back and neck (especially). I have all of the trigger points of FM. I take Neurontin and Ibuprofen. The combination helps, but I still have flare ups. It is quite painful, definitely dibilitating. I also see a chiropractor twice a month to keep my spine and neck in alignment. It helps A LOT!

March 22, 2011 at 9:24 pm
(88) Pat says:

I would just like to say that I put this page in my bookmarks, and when I get really sick, and all the odd feelings and pain I experience, which is everything I am reading and more, it is such a comfort for me to know I am not alone in this world. This page has helped me more than any Doctor, family member, or any test ever taken. I was dx with CFS when I was 31 after a life threatening miscarriage where I lost five pints of blood and almost died. After that life as I knew it did die. It was one illness after another for 20 some years I have been laughed at, called a hypo, told by family members that I use my illnesses as an excuse. That I am selfish, I only think about myself, Doctors just do tests to appease me. When you say you can’t go out for dinner because your sick but you don’t look sick, nobody believes you. The hardest part to having which now is being called FM is living a life with people who you love and have no understanding what your experiencing. I could go on and but whats the point. Life goes on, and we hang on, Barely. Thank you all here on this web site. Maybe were special in some way, and this will make us stronger, for something better some where, some day.

September 12, 2011 at 4:24 pm
(89) alexander nieto says:

i been told by the doctor i suffer from anxiety /panic attack. my chest does hurt get tight my left arm tingles. but also when i drink something cold ,i can feel it going to my left and it starts feeling cold on my left side. its like toward my lung on the back side thow. could you tell me how to treat this.

September 29, 2011 at 9:30 am
(90) ivan says:

I have the fibromyalgia and a lot has been helped by me correcting my body pH shifting from too acidic what we all are to alkaline. It helped me finally start to digest and absorb nutrients which is going much better now. Pains subsided have my h less now, no yeast it stops growing in alkaline body. I feel every aspect of me improving. I use Apple cider vinegar to alkalize. You can choose a method that will work for you just research. With Apple cider vinegar start slowly. You’ll bite your self you stayed acidic for so many years. It is what made you this sick over the years. Research what havoc can wreak staying acidic for years. Apple cider vinegar lemon juce test acidic but inside the body they turn alkaline. While meat for example test alkaline but inside the body produces massive amounts of the killing you acid… it is alkalize or die!

October 5, 2011 at 11:34 am
(91) Purplebear says:

Ivan, U mentioned drinking apple cider vinegar and lemon juice. How much is enough and isn’t it hard on the stomach?My stomach is very sensitive and I either hurt or have bad heartburn.

October 9, 2011 at 2:20 pm
(92) Tina says:

i have this on going pain in my shoulder blade area it feels like the muscles and tendons are ripping away from my shoulder blade. the pain is in one spot for a while and then in another place but it seems to be always at the edge of my right shoulder blade. Its like it shadows the outline of my shoulder blade. I noticed it starting to hurt and it was almost like me laying on my bra strap caused. VERY VERY painful. The doctors will not give me pain meds just muscle relaxants, and anti-inflammatory,anti-depressants and tramadol. Then they want to fuse at me cause i dont exercise, ok whatever give me something to relieve the pain instead of something thats going to barely ease the pain. you doctors want us to be more active then relieve our pain!!!!!!!!

October 23, 2011 at 5:46 pm
(93) Justin says:

I’ve been noticing some odd sensations all over my body over the past few years. i had been thinking i might have a B12 issue but i don’t, i have plenty of it in my diet. i DO have an old back injury that isn’t gett any better and ever since then i began feeling odd sensations. patches of skin on my back feel as if they are severely sunburnt with that dull aching pain. i’ve also been noticing involuntary twitching, more so than anyone should ever feel. sometimes it seems as if i get close to having a siezure as it almost seems like my vision and mind twitch out for half a second as if i’m about to just pass out and go straight to rym sleep. my cafs and bottoms of my feet also constantly itch and sometimes it’s as if the only way to get rid of it is with sand paper?! granted i don’t do it enough to actually scrap or cut my skin, but enough to make it so i don’t go nuts. i also can’t relax when trying to sleep,i fully relax every muscle in my body and then find my self 5 minutes later with a half dozen muscles tensed up again followed by restless leg syndrom. i don’t want too, but it seems like i may have to find the right doctor to give me Tramadol again. i took it for 4 days once and was the best nights sleep and freedom filled days of my life, my family practitioner gave me some for a camping trip and it wasn’t until after i had taken them that i found out that they were a mixture of synthetic opids and anti depression medications… so it kinda freaked me out a bit. but now that i’ve been thinking about this all, i’m kinda thinking i should probably get back on it as i honestly can’t remember a time befor of after taking it that i was so relaxed and in control of my self.

November 1, 2011 at 2:12 pm
(94) Caitlinb says:

I am 22 and I have FM and an autonomic condition called POTS. I can’t do much of anything with my hands for a long period of time without them aching (that really goes for any muscle), and I do get the weird sensations ALL the time. Very sensitive skin too.

My feet go tingly/burn all the time and that is so annoying and painful! my Hands will do this too, but not as often, most of the time they just feel weird – like I would drop something.

My face will go numb, like it feels like I have spider webs on my face but I don’t. I also get this feeling all over my legs and in my knees.

I am and have in the past also experienced muscle spasms in my legs when at rest – these are very annoying as well.

I sometimes get deep tissue massages and get the myofascial releases done and that does help.

I sleep a lot and have trouble doing much of anything without getting tired.

I take cymbalta, lyrica, topamax and other medications (but those are supposed to help with the pain).

November 8, 2011 at 9:59 pm
(95) Jaime says:

I almost cried reading this page And all the posts. I identify so much with the dryness, itching, muscle pain, And sensitivity to touching metal. Tired of ppl thinking I’m crazy. Tired of doctors with no clue. I stopped taking meds three yrs ago and feel no better or worse without it. I’m frustrated fatigued and tired of feeling weak bcuz I have a condition most don’t believe or can treat. Does anyone know how to find good fibromyalgia docs? Or atleast someone who will genuinely listen? Jaisafire@yahoo

November 10, 2011 at 12:46 pm
(96) Purplebear2u says:

Jaime, you didn’t say what part of the U.S. U are from or outside of U.S.
Look online for doctors in your area and the rest may have to be from trial and error. Important thing is U are not alone in your suffering and if the 1st dr. falls short keep looking don’t settle. having a Dr who listens is critical and there are some very good but unfortunately some not so good doctors out there. Good luck to you. God bless U and help U in your struggles. :) When you feel noone understands come back to this page and U will remember there are many just like U struggling to make it through the days and nights!

November 16, 2011 at 6:32 pm
(97) allison says:

Well, I’ve been having symptoms for about 5 years now and my neurologist couldnt find anything wrong with me, I have buzzing (L) foot and sometimes feels hot. My (L) calf feels fatigued, but I have no loss of strength. I am now getting pins and needles in both arms and legs periodically in different spots, sometimes shots of pins/needles shooting down from my knees to my feet it only lasts a few seconds, also when I took a big breath or sighed pins and needles went into my fingers, so off the to neurologist again and probably an MRI.

December 24, 2011 at 3:00 am
(98) Caroline says:

I occasionally have the cigarette burn feeling. It travels through my body, usually staying a week or so before disappearing and then reappearing somewhere else. I’ve had it on my toe, my shoulder, most often the inside of my right knee. My current one is in the upper right quadrant of my abdomen. It hurts when I talk too loud, go up or down stairs to fast, bend over, or get pushed in the belly too hard (usually by my kids running straight into me. I actually had the middle knuckle on my middle finger start the day before my belly did. I think this is because I am recovering from TMJ surgery and got an infection. All around the surgical area I felt that burning fire to the touch feeling (the infection was covered up by that, I had no idea I had an infection). Now I am on antibiotics and the pain on my face is finally going away. The belly pain (it’s just under the skin) is still here though. Can’t wait for it to move on. Thanks for this article, I was starting to worry it was something else.

Normally my fibro pain feels like the severe aches and pains associated with the flu. I am taking Nuvigil which completely stops the pain. Thank goodness! These little flares, however, have a mind of their own.

December 24, 2011 at 8:41 am
(99) Diane says:

Wow – and here I thought I was just imagining these stinging pinlike sensations! Also a couple of years ago I got out of bed and found I could not walk on one foot – it was like it was broken or something. I went to the doctor and all they could say is I sprained it. Well, I think I sprained it because I fell out of bed because of it! Then after a couple of days it was like nothing ever happened.

For those who are interested in some homeopathic remedies – my rheumatologist suggested this:

Use a ceramic chinese soup spoon and coconut oil – use the spoon on your neck and shoulders, massaging as deep as you can. It helps loosen up your muscles and tension. Doing this 3 times a week is helpful, but you need a partner – it’s too hard to do by yourself.

December 28, 2011 at 10:18 pm
(100) Mark says:

I have recently started experiencing random stinging pains in random places on my body. Like a tiny bee-sting but I feel it on the inside. The other thing is that I get these weird crawling/cold feelings in my hands and feet, more in my left hand. Sometimes I feel it in my arms too. I don’t know if this is from a pinched nerve or what.

My doctor told me it was from hyperventilation syndrome which causes tingling in the hands and feet, but what I experience isn’t tingling, like when your foot falls asleep. What I experience is like my hands and feet are suddenly freezing, but it’s a weird kind of freezing it’s hard to explain. Can anyone help? How do I lessen these sensations or make them go away? I have yet to see a neurologist.

January 2, 2012 at 2:21 pm
(101) Buddy Fed says:

For those who suffer without any relief,,, I am living proof that the medical community is a bunch of nitwits,, I have had 7 sinus surgerys, and I have cp,plained almost daily about salivary gland problems, to no avail,, muscle pains and nerve related pain,, throughout the body to the poinnt that I have trouble even getting up and walking,, my hands are numb,, my arms burn,, and my GP just prescribes tramadol,, it might as well be candy,, I cry nonstop,, I have been told I have Sjogrens syndrome,, but negative bloodwork,, I have seen many many neuros,, one did a punch biopsy and said I have small fiber neuropathy,, I cant tolerate cold,, I cant touch anything cold,, I cant tolerate breezes on me,, I cant digest food right,, I spent three days in the hospital in Pittsburgh and was tested for just about everything, nothing was found,, so I got the label somotofom disorder, I had to stop driving months ago, i could not feel the pedals, I spend EVERY day at home doing nothing but watch my body slowly succumb to the disease that has no name other then the one the (doctors) say it is,, been told its fibro,, been told imune deficiency,, been told nothing but a bunch of guesses, so for you people suffering, keep pushing for answers,, I am done seking answers to questions that they refuse to believe actually exist,, I jsut hope the end is quick, becasue I cannot imagine living like this for any length of time,, i am a male 56,, not overweight,, normal bloodwork, some DDD,, but been told thats not the problem,, lips biopys that show nothing but alot of fibrosis,, salivary gland scans,, showed chronic inflamation,, but when pushed on this,, the ENT;s refuse to listen, instead they have me do stuff that doesnt work,, I cough this crud up constantly,, I gag all night,, I gag all day,, but,, if you ever get sick,, never ever come to Pittsburgh to get treated,, you will end up either worse off or dead,, UPMC sucks

January 16, 2012 at 12:20 pm
(102) Scapp says:

I am so happy that I found this blog! I have been suffering with Fibro & Rheumatoid Arthritis now for 2 yrs. Some days I feel fine & others I’m in so much pain I can’t think straight- today is 1 of those days. When I was first diag. the pain attacked only the left side of my body, but after about 6 mths of left sided pain I woke up 1 morning with both of my feet hurting & swollen not to mention I would be hunched over from my lower back being in pain & my hands swollen to twice the size. Now, as of yesterday, a new pain started in my neck. Every time I swallow the muscles on the right side of my neck feel like they are being pulled (the left side is fine). I’ve gotten used to the pain on the left side of my body as well as my feet/hands being swollen/sore (which subsides after being up for 3-4 hrs), but this new pain is really driving me insane to the point where I just cry. I am going to be 41 next month but feel like I am 80! I look in the mirror & get even more depressed- I have bags under my eyes that make me look like I haven’t slept in a year not the mention my skin is breaking out something awful. My Dr. first prescribed anti-depressant meds, but after taking it for a month & not having any relief she prescribed Gabapaten, but after a while my body built up a tolerance so she upped my med. problem with that was it put me in such a fog that I stopped taking it. I’m now on pain meds which helps, but only sometimes. I am now considering joining the gym & hiring a trainer to work with me 1 day out of the week (other days I’ll workout by myself) & also incorporate massage therapy. My fear with the massage therapy is that there are days that anything or anyone touching my skin sends me through the roof. Has anyone gone this route & has it helped? I’m at my wits end & running out of options on how to control the pain. I wonder what does the future have in store for me with all this pain & the lack of motivation it brings. Any advise would be greatly appreciated!

January 28, 2012 at 12:22 am
(103) Rachelle says:

I feel like there is bubbles or air under my skin. It tickles and sometimes ache’s. I notice it most on my lower legs, thighs. sometime on my arms or shoulders. Lately this has been happening everyday for about 3 weeks. prior to this I quite my methomizole because I was getting aches and pain in my legs, thigh, lower back, arms, fingers. It felt like I had gone jogging for miles when I had done nothing. My legs were restless at night. Headache’s, which I never get those and feeling overly tired. All those feelings stopped after I stopped the med. This went on for over a month before I last seen my family doctor and was told all my lab work shows everything is normal. I am going to see my endocrinologist as soon as I can for a second opinion.

January 29, 2012 at 9:08 am
(104) Snorky says:

Have any of you ever taken a strong antibiotic – such as Cipro, Levaquin? Lots of other generic names. They are fluroquinolones Sometimes given for sinus infections etc. They can give you terrible adverse reactions, including Central nervous symptoms exactly as some you describe here. They are neuro and cardio toxic in some people – ie they POISON you. They also unfortunatley gave me irreversible cardiac problems which I now have to live with for ever. I thought i was going mad with numbness, tingling, foot drop, altered taste, altered skin sensation, paliptation, gatric problems. You name it I had it, doctors thought I was a nut case malingerer until I ended up in the CCU. Google quinolone if you have ever taken these.

February 9, 2012 at 1:26 pm
(105) Buggie says:

I too have FM and many symptoms like most of you. Is there anyone out there that has burning mouth syndrome? My tongue, gums, and lips burn all the time.

March 6, 2012 at 9:59 am
(106) JERI KAUFMAN says:

JUDY…I GET THE SAME EPISODES OF PAIN IN THE BOTTOMS OF MY FEET. SOOO PAINFUL. I ALSO HAVE WHAT I CALL “HOT SPOTS” THESE ARE SPOTS (CAN BE ANYWHERE ON MY BODY) THAT FEEL LIKE SOMEONE TOOK A TIRE IRON AND HIT ME AS HARD AS THEY COULD. SOOO PAINFUL TO THE TOUCH, AND EXCRUCIATING IF THEY GET PRESSED ON. I WAS DIAGNOSED 18 YRS AGO, BUT HAD IT FOR A COUPLE OF YEARS BEFORE THAT. SOMETIMES MY SKIN HURTS. SOUNDS CRAZY. THIS IS ONE OF THE MOST INSIDIOUS DISEASES. ALL WE CAN HOPE FOR IS MEDICATION FOR SOME PAIN RELIEF. THERE IS NOT ONE MINUTE OF ANY DAY THAT I DON’T HAVE PAIN SOMEWHERE. I FINALLY FOUND A DR WHO UNDERSTANDS AND HAS PRESCRIBED SEVERAL PAIN MEDS ALONG WITH A MUSCLE RELAXER. THE FIBRO IS ACCOMPANIED WITH ARTHRITIS AND LOWER LUMBAR DETERIORATION. GENTLE HUGS TO ALL WHO SUFFER. I (LITERALLY) FEEL YOUR PAIN

March 6, 2012 at 10:01 am
(107) JERI KAUFMAN says:

THE BURNING TONGUE IS ALSO A SYMPTOM. I HAVE THAT TOO, AT TIMES

March 9, 2012 at 8:50 am
(108) DianaV says:

Started in my foot 15 years ago and now bounces all over my body 24/7. Ranges from a tickel to a bee sting. Also get the “sunburned skin” feeling. Never formally diagnosed but always considered possibility (FM/CF). Also have Crohn’s. Happy to know that I’m not CRAZY. Or perhaps we all are. : )

March 10, 2012 at 6:16 am
(109) Dominique says:

Hey i’ve been having these syomptoms everywhere. i always have these burning senations in my head still do, nasua, irregualar heart beats, dizzyness, nd numbness all ova my body. i was just wondering wat these symptoms. i be feeling like ima die or pass out all the time nd i hate it so much. wish it would all jus go away..

can anyone or does anyone have the same as me.

March 27, 2012 at 5:38 am
(110) vicki says:

I feel like I have something crawling all over my body almost all of the time. I used to think it was Hayfever, but I now know its the Fibro.It’s horrible, I spend most of my time scratching myself.

March 27, 2012 at 2:19 pm
(111) Kathy says:

The bottoms of my feet feel on fire quite often, I get the odd jabs of pain, and occasionally the sunburn sensation (usually on my arms). I also have this odd thing where, say, I have an itch on my leg, and I scratch it, it triggers an itch somewhere else on my body, maybe on my scalp. Not always an itch though, sometimes it’s the sharp needle jab, simultaneously in two different locations. It’s almost like the nerves are directly connected to each other. My ankles get very itchy, and I have at times scratched ’til I drew blood. Not good.

May 8, 2012 at 11:36 am
(112) Jaclyn says:

Thank you! I thought I was crazy… now I know its not just me. The fatigue is enough but when you have to push through all this, it gets hard. Currently I have what i call invisible road rash on my leg, clothes hurt and my joints are especially bad. I notice my nerves get inflamed when I am having a bad spell. Which is right now unfortunately. Again thank you everyone out there that understands. Its nice to know you are not alone.

June 12, 2012 at 2:04 am
(113) Tina Stanton says:

I have all the same problems and feeling all of you have, ive had the nerve induction test and the muscle test and they both came back negative. I am currently taking celexa 40 milligrams and 300 milligramns of nurotin 3 times a day and it helps enought so i can tolerate it. ive been to many doctors and they dont seem to know what is going on with me !

June 15, 2012 at 2:26 pm
(114) lynn says:

I have burning pain, feels like somebody has put a red hot poker down my shoulders, arms ,legs etc. My feet also are red hot, hurts to walk.
i get very itchy ear, right side with shooting pains into my scalp, that its to sore to brush or wash my hair. The tight , painful chest is scary, had all heart tests done, found nothing. I am on Gabapentin, Codeine, Diclofenac and Amlodipine (slightly high blood pressure), also on Vitamin D3 my levels are low, and they can give you same symptoms….
Have to have reg blood tests to check my Vit D3…….. Also having physio exercises, think they are making me worse. Bad sleep, fatigued as soon as i wake up. Want to cry, my poor body…… Gentle Hugs To Everybody.

June 24, 2012 at 5:30 am
(115) fibroforlife if the PHEO doesnt kill me says:

They way I explain a lot of the pain in my skin is as if someone pulled my skin off, put on icy hot on my nerve endings then pulled doem my skin and sewed it up. I jerk every time I try to drink something feel like I need a bib. And it is one of the most embarrassing things. I already look like and alcoholic I shake and hav e a rough time walking in a straight line. I wish more people would learn.

June 30, 2012 at 2:17 pm
(116) Lynda says:

I was diagnosed with FMS 14 years ago. After six continuous months of whole body pain and a ten day dose of prednisone, that didn’t help, I was finally diagnosed. Some suggested causes of FMS serious lung infection, stress, marital breakdown, severe fall, automobile accident (which I have experienced all). I have learned that positive thinking definitely helps decrease the pain . Like not hearing the chime of a clock because after some time you just don’t hear it any more. It lessens the pain somehow. What I really hate about this syndrome is the new, odd and unusual symptoms that keep coming out. For the last week I have been experiencing numbness/tingling (like the end of novocain after being to the dentist) on the left side of my face and down both arms. Cymbalta and all the other mind drugs just don’t help much. I find that walking really helps. If I can walk a total of 7km each day (especially in winter) it really helps. I love gardening . Some days I can haul out a plant, dig a hole for a new one and have peace of mind. Some days are good most are extremely difficult but I do it damn it ! Research on Fybromyalgia here in Canada was non-existent when I was diagnosed. USA had started research, thankfully and FMS is more recognized today as a genuine syndrome. For me, I am resigned to having this the rest of my life, like it or not. I will continue to hobble out of bed on feet that hurt to walk on and smile when someone hugs and pats me on the back which almost brings me to tears and have broken sleep because the pain of being in one position too long is just too much to bear, of course you all know what I am talking about. Stay positive and no aerobics. That puts air into your muscles….ouch!!!!!!

July 3, 2012 at 1:40 pm
(117) David says:

My wife says her feet feel swollen and hard like a rock but they are not. Can anyone offer an idea of what is going on? Thanks

July 31, 2012 at 10:05 pm
(118) Dawn says:

I get sharp, pinching sensations in my legs or torso like I’ve been bitten by something, but there’s nothing there. I also get a tingling/sunburn-like sensation on my upper back. And my feet often itch intensely.

September 3, 2012 at 2:22 pm
(119) Marti says:

Sometimes I get this awful feeling that usually starts in the pit of my stomach and travels out through my whole body…making it feel like every nerve is “popping out” It’s horrible!
A doctor I use to go to told me,”It sounds like anxiety.” Anxiety!!! Sometimes I’m sleeping and not “anxious” at all! She started me on Cymbalta, but it is super expensive and doesn’t help all that much.
Any one else get this “feeling”?
It’s definitely hard to describe and maybe I haven’t done so well here in describing it. But it sure gets so bad, that I have to get up and walk around till it goes away.I am on Lyrica, 200mg TID.
Thank you for any feed back. It is appreciated.
P.S. If I take a pain med it does subside much quicker!

September 15, 2012 at 2:22 pm
(120) Dan says:

Lately I’ve developed a sensitivity on the left side of my neck and down to my left collar bone. It’s only in those areas. I can’t stand for my shirt collar to touch the side of my neck. I can’t explain the sensation but it’s so irritating it is extremely distracting. I constantly pull my shirt collar away or just put my hand there to lessen the discomfort. It seems worse when I lie down or even slouch and look down.

I’ve wondered if it is psycological because when I’m distracted doing something else I often don’t notice it. Then I’ll feel a twinge and I can’t get my mind off of it. I’ve read a few other posts. I don’t feel pain or burning like many others. It’s more of a knawing, persistent irritating feeling like water torture or something. I don’t take any medications. I did start a little lite exercise routine a couple of weeks ago, just walking and jogging.

This doesn’t sound like what most others discribe. Is this something my doctor can help me with? I just imagine him saying he has no idea what it is and throwing up his hands.

September 30, 2012 at 1:21 pm
(121) Playbass76 says:

I’m relieved to find others that have had similar symptoms as me. In July 2011 I developed a rash on my trunk, back, and legs. I also had severe muscle weakness and swollen lymph nodes…after several dr visits I was diagnosed with West Nile Virus. Since then other things have started…tingling and numbness in my face, arms, legs, feet, muscle weakness in my legs and arms, fatigue, burning in forearms, neck, back, and thigh, off balance feeling, tension headaches, and on and on. I have seen 2 different infectious disease drs and they kept telling me that my symptoms weren’t still from West Nile. After much frustration I got a referral to a Neurologist. She has done several nerve and muscle studies and recently 3 punch biopsies of my leg to check for small fiber neuropathy. She finally told me at the last visit that if my biopsies come back normal she is diagnosing me with fibrous/anxiety. I’m only 36 years old and wa healthy and active before West Nile and now have to force myself to get up and get going and am uncomfortable the majority of the time. I have continued to work full time and take care of 3 children but its difficult when nobody understands what I’m going through. Dr wants me to try 10 mg amitriptyline at bedtime but I’m scared of side effects. I can’t seem to find anything that helps. I also have problems sleeping and often wake up feeling like I can’t get my breath and my heart beats rapidly. I have had Bloodwork, MRI of brain, back, CT scan of head, stress tests, ekg, 24 hr golfer and all came back normal. They did find a severe vitamin D deficiency and I was put on 50,000 a week for 8 weeks and now take 1000 a day along with a multivitamin. I also take omiprazole for ibs. I just don’t see the light at the end of the tunnel and so desperately want to find some relief so I can feel normal again. Good luck to you all. :)

September 30, 2012 at 10:38 pm
(122) Playbass76 says:

That was supposed to say fibromyalgia/anxiety and 24 hour holter monitor…sorry for typos. Btw…I just took my first dose of 10mg Amitriptyline…wish me luck.

October 18, 2012 at 12:20 am
(123) nettle says:

I can’t believe I’ve found this page! I’m going to keep this very short as I’ve got a shocking headache at the moment and can only see out of one eye (does anyone else get this? The feeling of a knife sticking into your eye? Or your tooth? or……??)
My question today is – does anyone else get weirdly swollen up thighs? A couple of times lately I’ve barely been able to get my jeans on as my legs are so swollen. Then the next day they seem better. Any advice?

January 9, 2013 at 9:19 am
(124) Lisa says:

I have this all the time and it drives me nuts! My family Dr. doesn’t listen very well, although he did do a lyme’s disease test and I believe he did do a vitamin b test as well. The fog I can’t remember anything anymore! Right now reading this I am itchy all over and my legs burn all the way to my feet feeling like a sunburn. At times it feels like something is crawling, jumping and biting me all over. It drives me insane! I’ve tried baths, creams, changing laundry detergent for sensitive skin and taking vit b complex. Nothing helps!!

January 9, 2013 at 9:30 am
(125) Lisa says:

Nettle…..I get that all the time too….my legs feel swollen right now and yes my jeans are definitely tighter. I just figure its part of fibro issues with poor circulation etc. And for those looking for a Dr that will listen I am in the same boat, but I found on Fibromyalgia Network site you can mail them a request for Dr’s in your area that do treat this invisible condition. I am currently trying to get in to see a Rheumatologist.

January 15, 2013 at 5:38 am
(126) Dawn says:

I get also get all that. I get it bad on my head, its like millions of needles satbbing me. Crawling burning pain on my shoulders and neck. Stabbing pains all over. Sharp pain like a needle going into my eye’s, all sorts of weird sensations. Really horrible.

January 16, 2013 at 5:03 pm
(127) Victoria says:

When I get startled I feel pins and needles in my forehead. There’s a tiny delay between the event (nearly dropping something, tripping, car pulling out on me, or whatever causes the adrenalin rush) and the tingliness, so I have a split second where I know the sensation is coming and then, stab! the needles kick in. Very uncomfortable!!

March 8, 2013 at 11:20 pm
(128) Brenda says:

I have had fibromyalgia for 14 or so years. This morning is the worse I ever have had it. My whole body feels like it is burning from the inside out, that is the only way I can describe it. And i am very cold. It started in my low back and now it is every where. It hurts to eat also. I am on lyrica but it doesn’t seem to be working today at all. It is so bad that anything that touches me hurts including water. When I sleep I have dreams of myself hurting. I don’t know what to do. Does anyone have any ideas. I need help.

March 17, 2013 at 1:55 am
(129) Marie says:

I am not diagnosed with either Fibromyalgia or CFD, but I do have chronic insomnia due to Dyskinesia (Akathisia, Dystonia (Torticollis, specifically), and Myoclonus), i.e. restless leg sensation all over me. It is a living hell. I’ve had these problem since childhood, but not until I fell at work and got a bump on my elbow, did a doctor listen to me. The reason? When I raise my right arm, it feels like there is drops of ice cold water running from my elbow towards my hand. It would seem one nerve/neurological disorder or malfunction such as the sensations described here is unlikely. Is there a word for a generalized nerve sensitivity/fragility/propensity to misfiring?

March 18, 2013 at 3:24 am
(130) Metamorphicmuse says:

I found this forum after experiencing the strangest sensation as I was rinsing the dishes in cold water. My left hand pinky finger felt like it was on fire while the rest of my hand felt the cold water. When I removed my hand from the running water, the hot sensation subsided, but as soon as I stuck my hand back into the cold running water, my pinky felt as if it were being exposed to hot, scalding water. I’ve been diagnosed with Fibromyalgia, Bi-lateral Carpal Tunnel w/Neuropathy in both arms, Lumbar Spinal Stenosis, Arthritis in my lower back, bursitis in my left shoulder, and one Dr. diagnosed me with Multiple Sclerosis. I’m allergic to all synthetic medications, so I reluctantly rely on alcohol for pain relief. I’m hypoglycemic, so I normally avoid alcohol as much as possible. It takes me about 2 hours to drink one bottle of Smirnoff Ice Red, and I ALWAYS start drinking it with food. Otherwise, I’ll pass out from feeling drunk. UGH!

March 26, 2013 at 9:15 pm
(131) Kyliejane says:

I am so happy that I have found this site! I am 42 and have been having pains all over my body since I was 21. The pains do come and go. Sometimes lasting months or sometimes weeks. I notice it happens when I am stressed more. I get stabbing pains and shooting pains in my arms, legs, ribs, back,hands and feet snd sometimes in my head and bottom. Or sometimes they just ache. I have noticed spots on my body a few times that feel sunburnt but have not seen the sun. I went to doctor after doctor back when I was 21. I am sure they all thought I was crazy and so do most my family. I have been labelled as the family hyperchondriac and sometimes have thought myself that I am crazy. It hurts that no body believes me. Lately my breasts are aching all the time. It makes me feel a little better knowing I am not the only person that feels this way. Or at least I am not CRAZY!

April 29, 2013 at 12:47 am
(132) Cindy S says:

I was diagnosed with fibromyalgia about 6 yrs ago after having 2 discs removed in my neck. What a nightmare it has been. I have been on every med in the book. The only thing that seems to help is pool therapy but it is hard to force myself to get out of bed.I have the burning stabbing pain all over not one part of my body does not hurt . It feels like I have fingers grasping my face .You have to try to stay as active as possible. I know its hard with all the fatigue. When I eat alot of sugar my pain is always worse.So I am sure diet plays a big role. Vitamins are a must too. My last flare-up lasted 5 months until I got in the pool. Too bad I wasn”t born a fish.Good luck to all of you.

May 15, 2013 at 10:34 am
(133) Jackie M says:

I keep a ‘rough’ washrag handy, so when the ‘crawly’ starts, I can rub hard to make it go away.

May 21, 2013 at 9:52 pm
(134) Jimmie says:

I read a lot of your comments, but my pain is mostly in my feet. It all started 2 years ago with the bottom of my feet burning. The only way I could go to sleep was to wrap my feet with wet towels and put a fan on them. Dr. put me on gabapintin(msp). I now have pain in both of my feet. I have sharp pains that feel like something is trying to cut their way out of my toes with a dull knife. Feet burn all the time. My bones in my feet hurt and feel sore. My toes are beginning to seperate from each other. Sometimes I feel raw on the top of my toes. When my feet are very bad my feet are so sensitive I can’t stand to touch them and they become very red. Been to family Dr., Ortho.specialist, Neurologist, Podistrist(msp).Have had MRI on both feet and numerous x-rays.Have had all sorts of medication prescribed and paid $340 for an orthopedic sole to put in my shoes which only makes my feet hurt worse. My only solutuion is to stay off my feet as much as possible. Take tramadol for pain but it doesn’t help much. Spend many sleepless nights and lots of time crying. I am at my wits end.

May 29, 2013 at 12:12 pm
(135) paula says:

I am a 60 year old woman. I had a hysterectomy 12 years ago which included my ovaries. So I don’t think this is a menopausal cause. I have been diagnosed with fibro myalgia by two different drs. As all of you have stated, it’s hell. It has come to the point that I miss out on almost every social occasion we have and just getting out to do errands is very difficult. I don’t know if this is typical but I have a problem with extreme heat feelings. It doesn’t matter what time of year it is or how cool I try to keep my surroundings. My husband and visitors have to bundle up because I can only take off so much. The sweating and discomfort is horrible. In addition to that I have a prickly feeling that comes on quite suddenly, like if I step into the sun or become startled. It hits my scalp and various areas of my body and hurts like all get out. I have the burning pain in my feet and hands also.

Do any of you have any insight? I have seen drs. and tried hormones, just in case. Nothing seems to help. I’m desperate.

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August 30, 2013 at 5:30 pm
(139) Kathie Redel says:

Since 2005 I have a raw nerve feeling in the skin next to my shin bones when I run my hand over it or the sheets touch it etc. Also, if I stoop down, when I stand back up, I get a rush of that felling that travels up my shin area. It’s very strange and I never thought of it being related to my Fibromyalgia until recently when I read an article about it. I’m just glad to have some idea of what is causing it. For 8 years it’s been a mystery.

August 30, 2013 at 5:59 pm
(140) Kathie Redel says:

I forgot to mention in my previous post that I experience what feels like pin pricks in my arms followed by intense itching. I have scars on my arms from scratching. I don’t remember how long ago this started, probably 10 years ago but the strangest thing about it is that it happens almost entirely from spring to late fall. I was diagnosed with FM about 20 years ago.

September 21, 2013 at 8:01 pm
(141) Nikki says:

Wow.. how good it is to see all this written down.. from the skin burning/sunburn pain on hands feet face to the bee stinging pain and sudden itching.. crawling skin etc. I have been diagnosed with CFS after suffering for over 13 years with all the standard joint pain extreme fatigue etc. The nerve pain was a new thing for me after a bad bout of infections. I think i can add Fibro to my list now as i seem to have many traits associated with it. 4 months into a bad flare the nerve pain seems to fade.. then i get another sinus/ mouth infection and the nerve pain flares again. I dont know how it is for others but issues are clearly linked to my immune system as every time i have blood tests i always have an elevated white cell count and always have bright red tonsils.. once the tonsils calm down so does the pain. Just a thought for others wondering why it comes and goes :P

September 30, 2013 at 4:19 pm
(142) Karen says:

I experience the crawling feeling only on my face when I’m exhausted. I’ll toss and turn brushing my face with my hand and wake up with a slight burning sensation. I am very clean personally and in my housekeeping and have no ailments. No rash or bite marks. I finally came to the conclusion that this is something with my nerves from exhaustion. Just realizing that has made a difference.

October 7, 2013 at 12:45 am
(143) TINA MILAM says:

CAN “ANYONE” OUT THERE HELP ME.PLEASE I FEEL LIKE IM DYING A SLOW HORRIFIC PAINFUL DEATH! FOR ME, OVER1 YEAR NON-STOP ROUND THE CLOCK-!
MY:NEEDLES DIGGING IN MY BODY-I CANT WEAR ANYCLOTHES I WANT- MY SKIN IS ULTRA SENSITIVE TO CLOTHING-ALL WEATHER CHANGES-HUMIDITY RAIN WORST!TAKE A BATH-THATS A JOKE THE 2ND I GET OUT OF THE TUB IM HURTING EVEN WORSE NOW & I USE TO BATH EVERY DAY!NOW I MUST KEEP IT AT 1 TIME PER WEEK
AFTER 1 YEAR OF THIS UNKNOWN PROBLEM,I LOSS COMPLETE USE OF LEFT LEG 100%,ALL OF A SUDDEN 1 DAY IT WAS GONE!NOT EVEN 3 WEEKS LATER NOW MY LEFT HAND & WRIST COMPLETE LOSS 100% ! THIS IS THE WORST–NOW MY FEET ARE TURNING RED AS FIRE,TODAY FOR 1ST TIME I FEEL LIKE 1 SIDE HAD A ROCK IN IT! MY DR’S ARE PUSHING AS WELL AS ME & MY FAMILY GO TO MAYO CLINIC!I CALLED I MUST FIND A WAY TO GET THERE-CANT TAKE MUCH MORE OF THIS-SOMETIMES I JUST WANT TO DIE-BUT I WILL NEVER WANT GOD MAD AT ME.I PRAY & I PRAY IT WILL JUST GO AWAY,I WAKE UP THE NEXT DAY-I KNOW THIS IS HERE TO STAY!
THEY LOADED ME UP WITH ALL KINDS OF PAIN MEDS I DONT REALLY GET MUCH HELP FROM SOME MAYBE BUT NEVER STOPS THIS! BACK IN 7/1990 I OWN MY OWN HARLEY-A VAN PULLED OUT HIT ME & TOOK OFF-I WAS IN A COMA-DIED 3 TIME (NO-NO HELMET) AFTER 30 DAYS IN COMA THEY CUT ME FROM EAR TO EAR & PRAYED WHILE TAKING A LOT OF BONES FROM MY SCULL TO REBUILD THE ENTIRE LEFT SIDE OF MY FACE EVEN BEHIND LEFT EYE HANGING OUT! THEY PUT ALL THE BONES IN LEFT OF WHOLE FACE-”THEN REPLACED ALL BONES IN HEAD WITH STEEL PLATES & SCREWS,NOW BONES IN FACE TOO RE-ENFORCED AS WELL W/STEEL PLATES TOO”! BUT I DONT KNOW WHERE TO TURN FOR THIS NEVER ENDING PAIN & SENSATIONS THAT HAVE COMPLETELY STOPPED ME FROM LIVING A NORMAL LIFE! NOW THAT I LIVE IN FEAR I HAVE NO CLUE HOW TO LIVE AS THIS IN THIS WORLD RIGHT NOW. IM NOT EVEN CLOSE TO WHO I ALWAYS WAS! SHE IS NOW GONE I LONG TO HER BACK, ANYONE OUT THERE PLEASE DEAR GOD HELP ME IF YOU CAN! SINCERLY, TINA

October 18, 2013 at 8:02 pm
(144) Deborah Quinn says:

OMG!!

I have a few but one of them is the end of my toes hurt as if a shoe is to tight and then I can get awake with the tips of my 3 toes on left foot, burning with pain.

Another is, pain in both legs when I wear pj pants. I will quickly take them off for relief only to have my legs get cold and the pain starts again. Sometimes this can spark a full fibro attack and all my muscles ache.

Just another is, my eye brows hurt, if I rub my face in that area. It feels just like needles pricking right below my brows.

Anyone else with these or one of these.?

I am very tired of all my pain. I can only walk a short distance before my hips go into spasm. I use a riding buggy at Walmart.

God Bless

October 18, 2013 at 8:22 pm
(145) april says:

I get weird feelings like a mosquito or fly is on me but nothing is there. My neurologist checked me out for vitamin deficiencies and things and couldn’t find any. She started me on imipramine and it takes the feelings away. The bad thing is I think it caused me to sweat a lot in the groin but if I don’t take them, the feelings start again so I put up with the sweat otherwise I get too irritated by the feelings of bugs on me.

October 18, 2013 at 10:28 pm
(146) Willow says:

I have the sunburn type thing quite often. Also pins and needles and the feeling like something or someone is lightly poking me with a finger. It doesn’t usually hurt, but just feels like a pressure even when there is nothing there. Also itching for no reason and crawly feelings.

October 19, 2013 at 9:37 pm
(147) Debra Lively says:

I have a general question for my fellow sufferers. I take a combination of Lyrica and Cymbalta to manage pain but when my symptoms are at the worst I find that Hydrocodone is my best drug. I found this out by taking my husband’s hydro prescribed for him. I am not nor ever would be a drug abuser and I tend to take 1 or 2 over a 24 hr period amounting to maybe 6-8 a month! But when I asked both my primary care doc and my rheumo doc for a script you would have thought I had asked for straight heroin! Both LECTURED me “on the dangers” and said if I insisted they would refer me to a pain clinic! Anyone else have a similar story or suggestion?

October 23, 2013 at 8:49 pm
(148) webpage says:

Thank you for using some time in order to write _Odd Nerve Sensations in Fibromyalgia
& Chronic Fatigue Syndrome_. Thanks a ton again ,Micheal

December 15, 2013 at 4:50 pm
(149) kevin says:

Ive just recently started having stabbing pains followed by intense burning towards the front of my right hip. Almost in the hip flexor region. Pain was so bad the first time I thought I was bitten by something. When I looked there was nothing there so I figured I must of pinched my skin in my belt when I bent over. Since that first time its happened 3-4 times in the last week or so and is followed by that burning thats comparable to a cigarette burn. If anyone has any ideas as to what this might be please let me know. I dont have insurance and Christmas is almost here( I have kiddos ) so trying to avoid the expensive doctor visit if at all possible.

January 2, 2014 at 8:06 am
(150) Janet says:

Please all of you see if you ever took cipro levaquin or avelox. I was totally blown away from these drugs. they are chemo antibitoics and cause horrific damage. My entire nervous system was blown out. I have all over pins and needles. can barely walk, about 100 symptoms. I thought I had cfs for years until I took 40 pills of levaquin after being on lots of cipro. My body blew apart.. Doctors will not recognize this but go to the facebook wall of pain. thousands of us are severey damaged by these drugs..
if you need info you can reach me at rykerjem860@outlook.com

January 11, 2014 at 11:30 am
(151) MaryLB says:

I am 67. Diagnosed with rheumatiod arthritis & fibromyalgia in my mid 40′s. Pain started as if someone was crushing my rib cages from both sides; rapidly developing into constant pain everywhere. Luckily, my doctors are aware of this chronic disease. However, over the years, no treatment they have prescribed has given me much relief. Recently, I have had the “zapping”paresthesia in my head that I attributed to having to go off Cymbalta suddenly. Reading these posts, I now see it may be another symptom of Fibromyalgia. I understand what each of you, who posted here, are going through. I was an R.N for 40 yrs, 25 of which were working in behavioral health/ mental illness. You are not “crazy”, these symptoms are real. Don’t let diagnosticians label you that. Hopefully, someone some day will find us a way to relieve our pain. GOD bless you all. ~ MaryL

January 22, 2014 at 7:25 pm
(152) N King says:

I get that extreme pain from contact with a waistband. I thought I was going crazy because that’s how the dr has been looking at me. She’s ordered all types of tests and never found a thing. Thanks so much for letting me know it’s not “all in my head.”

January 27, 2014 at 12:52 pm
(153) Michael says:

Just to add my little experiences: the sensation of stinging nettles being dragged over my skin; someone standing on my arms and thighs; a drip being fitted in the back of my hands; like I’ve been put in a steel corset; my hand muscles tightening and needing to stretch the hands out (same with my legs, especially at night; sensations like I’ve run a marathon; walking like I’m drunk (although pramipexole, a first stage parkinsons medication helped amazingly well with this); aching in my forearms and wrists; the side of my little toe itching like hell; my right hand occasionally trembles… especially when I’m holding a phone or a fork or chopsticks (which makes eating rice a real pain and makes laundry a challenge lol); that feeling that someone’s stabbing you with a pin…. I describe it as living with a small, invisible gnome who’s equipped with a hammer and knitting needle and I call him Brandon (never met a Brandon I liked). Taking acupan (a non-opoid painkiller as I don’t like feeling out of it, and refused morphine) and 2700 milligrammes of gabapentin. Still… head’s generally clear and not fogged, which duloxetine caused. Suggest you externalise the pain into something you can swear at if needed… it helps, which is why I refer to my neuropathy as Brandon :)

February 9, 2014 at 5:47 pm
(154) Maureen says:

When I have a muscle spasm, it burns and is very itchy. I also have paresthetic neuralgia going from my left side of left hip to just above my knee. When it is very painful and numbing, I lie diwn with a hot pack (like magic bag warmed in microwave) on my hip and leg. Also my physiotherapist does myofascial release on my neck, back and leg which helps too. Yes, acupuncture relieves my headaches and muscle spasms in my neck and back. Still after having Fibro for over 10 years, I have many days where all I can do is rest in bed with hot packs and take meds like Naproxen E, Tylenol Extra Strength, and sometimes Flexeril for really bad spasms. Thankfully, my husband massages Myoflex on my back and neck every night. Unfortunately, I have degenerative disc disease and severe osteoarthritis along with severe Fibromyalgia so life is challenging for me. I hope to start attending low impact aquacizes in a warm water pool soon as I’ve been told this would help me cope better. I feel for anyone who has Fibromyalgia.

February 14, 2014 at 8:20 pm
(155) Susan says:

About a year ago or so, I noticed when scratching around my left knee that I could feel the pressure but the area was numb. No pain, just numb.
The numb area has now extended up the left side and front of my upper leg. I was diagnosed several years ago with fibromyalgia in addition to rheumatoid arthritis. I have also been on a chemotherapy agent for part of my meds to treat the rheumatoid. So I guess this is just another chapter.

March 3, 2014 at 3:59 pm
(156) GABY says:

i dont know if anyone here feels this but i get alot of mouth ulcers and my tongue feels like its on fire. And when i touch the inner part of my knee it feels like my fingers are made of sand paper its so painful!

March 10, 2014 at 10:39 am
(157) L. King says:

I have read almost all of the various symptoms and complaints on here and I have come to the conclusion that a lot ot people are taking a lot of different drugs to help with their ailments. I think more would be helped by not taking so many medications. A lot of these meds are nothing but poison and they do nothing but exacerbate the problems. Do a little digging around and ask questions about whatever you are taking, you would be surprised at the side effects some of these meds have. The doctor does not know how you will react to some of these meds when he prescribes, so it is up to you to inform him. I am talking from experience with some of them and I know that what works for one person does not always work for another.

March 12, 2014 at 8:36 pm
(158) Jacqueline says:

After reading through your comments, I relate to many symptoms. I thought I had MS – so many Doctors did not mention CFS to me until last week a New Doctor- I have crawling bug sensations on me- expecting to see big hairy spider on my foot- when there is nothing there, also biting sensations bug like. I get electric shocks across my face, and also the sensation that acid is being poured into my brain. I have brain fog,memory loss,shooting burning jabbing pains.twitching,exhaustion,headaches,tingling and numbness.dizziness,mood swings,depression,sensitive hearing and smell,rashes, restless sleep,bowel upsets,blurry eyes,I over heat- all of a sudden, sweating, with my hair drenched in minutes. I avoid social contact and live an isolated life now. Im 49 and feeling very alone with this illness. I have no idea if there is treatment available or what I can do to enable me to live through this and improve.
Jacqui

March 25, 2014 at 12:42 pm
(159) Tired of it all says:

I think I’ve come to the end of my rope. I’ve been suffering from this ilness for 30 years. Have worked the whole time no matter how bad I feel and now…well….I’ve just reached the point where I don’t want to care anymore. The antidepressents aren’t working anymore, the pain pills barely put a dent in my pain and last night I was in bed by 7:30 and asleep by 8 only to oversleep and almost be late for work this morning. I don’t want to go anywhere or do anything…all I want is to sleep and now I have no life but going to bed. It just doesn’t seem like it’s worth it anymore.

April 1, 2014 at 12:54 pm
(160) Tired also says:

I am so very tired of feeling this way. I feel like my body is silently screaming real loud all the time and only I can hear it . But I don’t know where to turn .

April 2, 2014 at 4:09 pm
(161) Kathie says:

Jacqueline – part of your symptons sound like menopause. What does your doctor say about that?

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