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Adrienne Dellwo

Some Fibromyalgia Cases May be Autoimmune, Demyelinating

By April 23, 2014

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Is fibromyalgia more like multiple sclerosis (MS) than we thought? A unique line of research is making it look that way.

First, a few things about MS. It's believed to be an autoimmune disease. Symptoms are caused by something called demyelination, which means destruction of myelin.

Myelin is a specialized cell that covers some nerves and is necessary for them to function properly. It's similar to insulation on electrical wires. A predominant theory is that, in MS, the immune system malfunctions and destroys the myelin sheath. Areas where the myelin is destroyed are called lesions.

Fibromyalgia & Demyelination

The first study of fibromyalgia and demyelination came out in 2008, and the follow-up was just published this month.

The 2008 research suggested that a subset of fibromyalgia involved autoimmune deymyelination and polyneuropathy (pain from damaged nerves.) It compared fibromyalgia to a neurological illness called chronic inflammatory demyelinating polyneuropathy, which is often treated with intravenous immunoglobulin (IVIg.)

In fact, in that study, they used IVIg to treat people from this fibromyalgia subgroup. Granted, it was a small study and that was only 15 people, but researchers say those people had significantly less pain and tenderness plus improved strength, along with smaller improvements in fatigue and stiffness.

This is a good example of how a preliminary study can have seemingly huge implications and yet have little or no impact. Yes, some doctors have used IVIg on patients, but it's far from a widespread treatment and demyelination in fibromyalgia is almost never discussed.

Fast forward six years, and at last we have a follow-up study that appears to confirm the earlier findings as well as advancing them. It's also supported by other work that's been done in the past few years.

Newer Findings

First, the researchers wanted to explore whether the demyelination of large fibers (bigger nerves,) found in the earlier study, is caused by autoimmunity. Then, they also wanted to explore small fiber neuropathy, which has been suggested by other studies to be a part of fibromyalgia.

Small fiber neuropathy is painful damage to structures in the of the skin, organs, and peripheral nerves that provide sensation and help regulate automatic functions like heart rate and body temperature. Researchers were interested in it because it's known that small fiber neuropathy is sometimes associated with demyelination lesions on large fibers.

They found indicators of small fiber neuropathy, including diminished feeling in the lower legs. Also tested were multiple markers of immune activation and autoimmune activity.

Researchers discovered high indicators of small fiber neuropathy and therefore large fiber lesions, in the legs of people with fibromyalgia. They also found that these indicators, especially in the calf, appear to be linked to a marker of immune activation (interleukine-2R.)

They concluded that small fiber neuropathy likely contributes to our pain, and that some of our pain comes from immune-system activity, such as autoimmunity.

In Context

This follow-up study comes at a time when the interest of the fibromyalgia research community appears to be shifting toward small fiber neuropathy, inflammation, and possible autoimmunity. Taken in context, this work adds to the emerging picture that we do have damaged nerves after all, that our peripheral nervous systems are definitely involved, and that autoimmunity or another aspect of immunity is at work.

This was still a fairly small study, but the fact that it furthered earlier work and appears to gel with other recent research could mean that it'll have a bigger impact than its predecessor. At the very least, it seems that this is a worthy line of study that should continue.

Going back to the similarities with MS, I have a couple of thoughts: 1-If fibromyalgia is a close cousin to MS, it could really up the credibility. People know what MS is and they respect it. 2-Would MS treatments work for us? It would be great to see some of these established medications investigated for fibromyalgia. 3-The similarity makes sense, since we both can have flares and remissions and our symptoms are extremely similar.

Do you have or suspect neuropathy in your legs? Have you been treated for it? Has a doctor ever suggested IVIg as a treatment? Leave your comments below!

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Comments
April 23, 2014 at 7:19 am
(1) Staci says:

Again, wow. I have had one solid episode that was MS like (with vision disturbances, spasms, difficulty walking, etc) and another possible episode that was less profound about 5 years ago. No lesions found on brain or spinal cord, so no diagnosis at this time.

This study really could make a lot of sense, and pull some of the pieces together regarding my symptoms.
I did actually tell my neurologist that in a way being diagnosed with MS would be a relief, because people believed in it, and understand it more.
Thanks again for keeping us up on research.

April 23, 2014 at 8:45 am
(2) Rachael says:

If, some fibromyalgia cases are caused by autoimmune, demyelinating, Dr. Terry Wahls Paleo-style diet that reversed her case of multiple sclerosis may also benefit those with fibromyalgia. Her diet focuses on specific nutrients needed for proper function of myelin and mitochondria.

http://articles.mercola.com/sites/articles/archive/2011/12/23/overcoming-multiple-sclerosis-through-diet.aspx

April 23, 2014 at 7:29 pm
(3) S says:

I hope this is a true study to lead us down the road to a better understanding and more optimistic treatment of this illness. I have had two severe “attacks” leaving me bed ridden for months, which led me down a path of believing it was MS. I had many MRI’s showing lesions in my brain, brain stem and spinal column. Unlike MS my lesions healed and many disappeared. When being released from my MS doctors care, all but two lesions remained. My diagnosis came from two separate Doctors, one diagnosed me with fibromyalgia the other with ME/ Chronic Fatigue Syndrome. My system is definitely under attack from something, I’ve always though it’s autoimmune in origin.

April 23, 2014 at 8:13 pm
(4) Abot Bensussen says:

Interesting. Yes, I have neuropathy in hands and feet, spasms and twitches in body at times, mostly neck and shoulderrs. Not very pretty,. people ask me if I have Parkinson’s when it’s very bad.

The neuropathy is worse, the pain in my feet especially. Lyrica has helped a lot with this, and the sharpest pains are gone. My vision does get blurry at times, and I find it hard to read. I think my sight is declining, but I do have an appt. with my opthamologist soon.

I have an appeal with my insurance co., Humana, for Xyrem which I’ve been using for almost 8 years. It’s a hard fight, without my full dosage at night, I fall asleep during the day, even while eating breakfast!

April 24, 2014 at 1:58 pm
(5) Rayninart says:

This is not new news. Although I’m glad the research is finally coming to light, the truth is that this research was brought out in the mid to late 1980′s. It really pisses me off that after almost 30 something years, someone is taking credit for information that was known in the Fibro community long before this, but if a patient attempted to explain this to a doctor, they’d call you a hypochondriac.

This 2008 “first study” is a joke. It was common knowledge among Fibro patients who did their homework that this Demyelination was one of the first symptoms and the NFA was well aware of it’s existence and was talked about often. In fact, this kind of information was stuffed under the rug because the insurance companies didn’t want to pay for the millions of claims that were coming in at that particular time.

I’ve had Fibro/M.E. for 30 years and run the gauntlet of neglect, abuse and denial from the medical community enough to know that people with Fibro knew more about their disease and now everyone else is patting themselves on the back for being Masters of the Universe for figuring this out? Gimme a break.

April 24, 2014 at 3:03 pm
(6) Mary says:

I have been diagnosed fibromyalgia for about 6 yrs and continue to have flares. They seam to be getting worse as well as my symptoms. I have other auto immune illnesses that were diognosed before the fibro. I find this research very interesting because my dad has been diagnosed with MS for approximately 30 yrs. He is almost bed bound at this point with his MS and he has wondered if his illness may be linked to what i am dealing with?
I would really like to get in touch with the research group conducting these studies. if you can get me in touch please email me at maryjona@gmail.com

April 24, 2014 at 8:22 pm
(7) NATHHALIE says:

I’ve had fibro now for 17 yrs, was diagnosed when I WAS 30. I BELEIVE that the HepB vaccine has caused this, I did receive it for work (hospital) All 3 doses. The symtoms started slowly, sever infections, I was dizzy for 2 months, but had to work,then the worst one was , out of the blue no more sleeping. All night I was just laying there, then muslcle problems and so on extreme fatigue also. I’48 now, and fibro has stolen broken my body, then my emtions the pain driving me helpless and at the end wanted to end it , for I WAS NOT THE WOMEN I was before, If you only knew, NOW I’M FIGHTING BUT THE FIGHT IS GETTING SO DANM HARDER. Fibro the monster, the curse, I have to life with everyday, PAIN grips my body, and never, never lets go. So is it possible that the Hep B VACCIN MAKE S 2% of patients receive it get sick and danm with fibbor for life.?

April 25, 2014 at 3:49 pm
(8) cindy says:

I have believed for a long time that it was neurological. I also have Karataconus which is the thinning of the cornea. I have wondered if was all part of the same issue. I just wich they would do a big study and really find out what is going on. I don’t think it will happen in my life time.

April 25, 2014 at 4:01 pm
(9) Diana Harris says:

It’s ironic this post came just as my latest doctor recently diagnosed me w/neuropathy (in addition to the fibro & psoriatic arthritis which I’ve had since 1987). I’ve had the calf pain mentioned since then, but the burning in my feet has been significant in the past number of years. This doctor is sending me for a nerve conduction test in my lower extremities next month, this all seems to tie in w/the findings in your article.

April 25, 2014 at 4:38 pm
(10) Helen says:

I had a brain scan a few years ago. They result was “either a demyolating or an ischemic event caused leasions in their white matter ” of my brain.
Helen L.

April 25, 2014 at 4:53 pm
(11) Angie says:

wow! and WOW again! I have felt like I have MS.. I truly believe that Fibro is a cousin to it… thank you so much for the info and the updates…. this forum keeps me sane… well most of the time… :)

April 25, 2014 at 5:02 pm
(12) Denise says:

Hi, I was told I had Fibro in 2009 and now have neuropathy in both feet. I have also had vision trouble especially in the morning where I have trouble reading. I have always wondered if what we have is more than Fibro. It seems my symptoms have been worse than usual which could mean I’m in a flare. Interesting article. I think I might show this to my neurologist and she what she thinks. Great Article! Thanks

April 25, 2014 at 6:28 pm
(13) Barbara says:

“People know what MS is and they respect it”. I want to respond to this statement. My Mom had MS and for years she was told all the things by the medical profession and friends/family that we are told about FM. There was NOT a definitive “test” for MS. She suffered for years thinking it was all in her head and she just needed to change her behavior and thoughts. She became very depressed. Finally MS was diagnosed. Now there are tests for it. I’ve had FM since age 12 (after being sick with whopping cough for months). The medical community and others have said the identical things to me that they said to my Mom. It’s ridiculous that patients are not believed until a test is created to verify it!!!

April 25, 2014 at 6:38 pm
(14) Gina says:

Wow! I have been trying to convince doctors for 7 years now that there must be a link between FIBROMYALGIA, MS AND MOTOR NEURON DEASE!!!!! I’m not involved in the medical profession but purely from observing my mother who passed away from MOTOR NEURON 8 years ago, my sister who was diagnosed with MS after my mother passed and myself with FIBROMYALGIA which was diagnosed 10 years ago.
WE ALL HAVE/HAD SIMILAR SYMPTOMS!!!!!!
Can’t be a coincidence.
To the medical profession out there, please at least, consider more research into this at least to give us poor fibro sufferers some CREDIBILITY. I get so upset when my sister tells me that she should have more consideration due to the fact that she has MS and I only have fibre!!!!! Yes, you think she would be the one to have a little MORE consideration than the rest of the population given the fact that i have described to her the symptoms and similarities. If she does not ‘get it’ what hope do we have in others even considering us and our suffering. Not looking sick just adds fuel to our fire!

April 25, 2014 at 6:54 pm
(15) Nancy A. says:

I have had CFS for 30 years and fibromyalgia for 27 years. I was also diagnosed with hypothyroidism and Raynaud’s (both autoimmune disorders) around the same time.

There is a lot of autoimmune disease in my family. My sister has Type 1 diabetes and Addison’s disease. My brother has vitiligo Other relatives also had Type 1 diabetes. My grandmother and maternal aunt had rheumatoid arthritis. My cousin’s daughter has myasthenia gravis.

So, am I surprised that researchers are finally coming to the conclusion that CFS and fibromyalgia may be autoimmune in nature? Not at all. I’ve suspected it all along, as you can see by my family history and my own personal medical history.

April 25, 2014 at 6:59 pm
(16) Tonya says:

I’ve actually told people for 7 years now that I thought Fibro was my heredited MS as it does run in my family. I’ve always felt that there was something more to this. I believe I started having my symptoms slowly way back when I first started my menstral cycle at age 11 yrs old. Migraines age 12, tmj with arthritis by age 15, petechiae rash on entire body except face, palms and bottoms of feet and that lasted a year or more before it went away. I was 16 through age 17 and the doctors couldn’t figure out why I had petichial hemmorhages all over my skin. This symptom list continued to grow. There are several auto immune disorders on both sides of my family, it would just make sense that this could be a combination AI disorder and also be in the MS family. Afterall, they are both such unpredictable families to begin symptoms in, anyway. I continue to pray for treatments for us all, for relief, and a good night of sleep. That would be the thing I would be the happiest with, an 8 hour night of restful, uninterrupted sleep. Oh how great that would feel. :) .

April 25, 2014 at 7:03 pm
(17) Nancy A. says:

I have had CFS and fibromyalgia since the 1980′s. I was also diagnosed with Raynaud’s and hypothyroidism (both autoimmune disorders) around the same time.

There is also a lot of autoimmune disease in my immediate and extended family, including Type 1 diabetes, Addison’s disease, vitiligo, rheumatoid arthritis, and myasthenia gravis.

So, I am not surprised that researchers are finally coming to the conclusion that CFS and fibromyalgia may be autoimmune in nature. I’ve suspected it all along with my strong family history of autoimmune disease.

April 25, 2014 at 7:06 pm
(18) Nancy A. says:

I have had CFS and fibromyalgia since the 1980′s. I was also diagnosed with Raynaud’s and hypothyroidism (both autoimmune disorders) around the same time.

There is also a lot of autoimmune disease in my immediate and extended family, including Type 1 diabetes, Addison’s disease, vitiligo, rheumatoid arthritis, and myasthenia gravis.

So, I am not surprised that researchers are finally coming to the conclusion that CFS and fibromyalgia may be autoimmune in nature. I’ve suspected it all along with my strong family history of autoimmune disease

April 25, 2014 at 7:17 pm
(19) Denise says:

I was diagnosed with Fibromyalgia almost 20 years. I have said from the very beginning that I had MS and that the Fibromyalgia diagnoses was wrong. I have been experienced some MS symptoms and they seem to be getting worse. I think it could be very possible that these two diseases are closely related. With that said, what meds or knowledge can we bring over from the MS side. I understand that this is not “written in stone” and there is still a lot more research to do. But it certainly may explain my situation. I plan on discussing this further with my Doctor. Thanks Adrienne for your constant commitment to bringing us the latest and most helpful information. It is always good to have a champion. ~Denise

April 25, 2014 at 7:48 pm
(20) margaret dejohn says:

My family history is Marfins, MS and similer issues such as bursitis. So my sisters and I said along time ago that we all have a connective tissue problem. I have 3 direct cousins with MS and now my sister was hoping she had Fibro like I do but they are saying MS for her. Yes the public respects MS but not Fibro and Doctors only go by the pressue point test and then its medication after mediaction.

April 25, 2014 at 7:49 pm
(21) Shauna says:

I have always believed that in the end, they will find that Fibro and CFS are both autoimmune disorders that attack our nervous system and its components. This seems to validate my thoughts so-far.

April 26, 2014 at 12:08 am
(22) Monte says:

My wife has had fibro. for over20 years.Her sister had polio and the systoms are very closely related. I have been reading this blog for sometime and have not noticed anything on post polio simularities. As a child and young woman she had a very high immunityto almost all diseases ect.It appears that her high immunity has carried into auto immunity . Does anyone have any thoughts along this line?

April 26, 2014 at 3:09 am
(23) kathleen says:

Adrienne, thank you again and again for the info you find and give to us. You are my only source of info. And this post has shown me I think it is past time for me to get a neurologist. I am dx with fibro since 1995 and am 62 yrs old. Last year I was dx with neuropathy in my feet and legs. The burning and the pain is awful. I was on something, of course I can’t remember the name right now, that just about took all the pain away, but it made me too suicidal to continue on taking. I got enough problems in that area without any help from meds! I read the article that was linked above about MS, and really clicked on several things, like my eyesight bad and getting worse, having problems reading and falling asleep at the drop of a hat. I’ve fallen asleep standing up before, while prowling the house at night, trying to walk off leg pain. I can’t count how many times I’ve woken up as I was falling to the floor. Talk about a rude awakening! Adrienne, I owe ya again, big time. Thanks, I feel like I know ya after all these years. I’ll keep ya posted. God bless you.

April 26, 2014 at 6:39 am
(24) EdanaDaithi says:

For many years I was in the Boston Hospital system, trying to figure out what was causing all the pain, fatigue and unrefreshing sleep. For ten years Rheumatologists, Neurologists, Specialists in Parkinson’s Disease, and those in MS tried every test they know to do on me. It was agreed that I had most likely had Fibro and ME/CFS for at least 20 years, possibly longer. For years the MS specialists believed I had MS, because my illness was progressing. There was never enough consensus to determine a definitive Dx. I have settled for pain control, muscle relaxers. I think I have MS. In ten years I have progressed from working in pain, to a wheel chair.Fibro is not supposed to progress. In my case it either does progress or I have another illness. I also have failing kidneys, hypothyroidism, and hypoparathyroidism, and Essential Tremors. All the specialists can agree that I have what ever they specialise in, but none can agree to a diagnosis that fits all the symptoms. Very frustrating.

April 26, 2014 at 11:07 am
(25) Allison says:

I do have neuropathy which in my body translates as reduced feeling in my feet, toes, and the shin areas. It never occured to me that it was anything else except obesity induced diabetes. Even after the lap band and the weight loss, which made the diabetes go away, the neuropathy increased.
Hope this helps.

April 26, 2014 at 11:31 am
(26) Rose Everett says:

I have had many episodes where my legs, when I stand up, have become somewhat numb, with a vague pain sensation all through them, and I am not able to walk for a few minutes. It is such a helpless feeling, and feels like my legs are screaming at me. If I lay down, after awhile it will abate. I also have electrical type buzzing feelings in part of my feet. Any exercise makes me flare up, and the pain is aweful all over my body.

April 26, 2014 at 12:07 pm
(27) Louvain Riddell says:

I’m so thankful for every comment I’ve read, esp Edana’s. I was diagnosed with Fibromyalgia in 2009 after suffering terribly with pain whilst walking and being unable to move my arms properly, one of my arms I could hardly move at all. I felt as though I had 3 spines. My muscles, bones, flesh and skin all pained me – like terrible sunburn. I was given different painkillers in the beginning, but they all caused seizures (I have uncontrolled Epilepsy). Either that or they made no difference to the pain at all, so I no longer have any. The diagnosis was in the March. I was in a wheelchair by August the same year. I saw a Rheumatologist way back in 2005 I think it was, who said if I could bend down then there was nothing wrong with me! My Neurologist wants me sorted out before changing my anticonvulsants because he doesn’t think the seizures are Epileptic, but due to another cause. I have not been put to a Rheumatologist since my diagnosis. My eyesight is worse, I have Tinnitus, Hyperacusis, Auditory Tactile Synesthesia (which doesn’t help the pain) and I believe those feelings you’re all talking about in your feet and legs is what I experience day and night, too. Migraines. Bruxism. I could go on. I have always “known” that I have either (a) something as well as Fibromyalgia or (b) something else. My cousin has MS but apparently that means nothing! (As far as my health goes) I’ve just had basic diagnostic tests done, and as I knew they would…they are negative, thankfully. However, I don’t know where I stand. It’s just so good to know that I am not alone with this because sometimes even those close to you can make you feel as though you are malingering. Thank you everyone.

April 26, 2014 at 2:18 pm
(28) Trish Short Lewis says:

I have been tested (entire body) for neuropathy. I am not sure what the terminology is for the equipment and method are for the testing I received, but it was done by a neurologist. They said I had no significant nerve damage that showed. Despite that, my lower legs are classic in their symptomatology of decreased (sometimes little to none) sensitivity, feet sometimes feeling like pins and needles, sometimes like they are on fire, sometime painfully cold, even Reynaud’s exhibited with my toes going white (my fingers do too, but that’s another story). Sometimes just touching my lower leg hurts badly. My conclusion: I still firmly believe something is going on with my nerves, possibly damage. I sincerely hope more research in this area as mentioned in the article continues! Thank you for sharing this news with us.

April 26, 2014 at 2:43 pm
(29) Sarah says:

I a doc diagnosed me with fibro 15 years ago shortly after I also developed severe migraines that became chronic. I’ve been through the whole drug thing (Lyrica, Cymbalta) and even Oxycontin. The pain just kept getting worse and he kept stacking one SSRI drug on top of another until I developed serotonin syndrome. Then, he decided he didn’t like my insurance anymore and without any notice refused to see me and I got to withdraw from it all on my own. I tried to see another doc to get onto some sort of weaning regimen and got labeled a drug addict.

So, I am totally unimpressed with anything that claims a some drug is the next best thing to come along. There will be no large long term studies on drugs because Big Pharma doesn’t want to invest the money.

Besides fibro, I also have interstitial cystitis, a bladder disorder. It too is supposedly an autoimmune disorder. There is only one oral medication available to treat it an fortunately it works for me. My neurologist also recently noted I have neuropathy from the knees down. But, I also recently had to have a back fusion from my sacrum up to L2. I only have one lumbar vertebrae that allows minimal flexibility. Due to multiple degenerative problems in my back it would be hard to say that the neuropathy is due to fibro. Time will tell if the nerves get a chance to heal.

In addition, I saw a dentist who specializes in sleep apnea and migraines. I was seeing him for the dental appliance approved for sleep apnea and was amazed when after a few months of use my migraines became less frequent and less intense.

I prefer to take as few drugs as possible. Drug companies make huge profits off of the sick but due to the budget cutting by congress there is little real oversight by the FDA. The trend toward trusting the drug companies to do the right thing started with Reagan and is only getting worse.

I wouldn’t rush to try some new drug they claim will treat fibro or related disorders.

April 27, 2014 at 12:01 pm
(30) JudyP says:

When I was first being worked up for FMS, unbeknownst to me, when my doctor sent me to the neurologist, she wanted to rule out MS and ALS because my symptoms were so similar. I had the nerve pain, and hyper-reactive reflexes, among other things. My brain MRI showed two lesions, but not in the typical MS regions. Fast forward 6 years, and I’m headed for EMGs on Tuesday in both legs to see if we can find the source of constant pain, numbness, loss of temperature sensitivity, tingling in the right leg and minor versions of that in the left. It’s my pain doctor this time who’s perplexed. My immune system attacking? I can believe it! I have a sister-in-law with lupus, and we share many symptoms (although she has more systems under attack).

April 27, 2014 at 3:03 pm
(31) Gigi says:

Interesting!
I was actually diagnosed with neuropathy in my legs recently, too!!

April 28, 2014 at 3:50 pm
(32) Teri says:

I was also diagnosed with MS and the brain lesions dissappeared. My mum was always complaining about aches & pains but was told it was her “nerves”. I am now diagnosed with fybro. I believe most of it results from a very stressful life. Being constantly under stress must produce so much adrenalin that the body can’t cope with it and causes nerve damage. Also I wonder, as there seem to be more women affected if it may have something to do with taking the Pill, it is not natural to feel “pregnant” for so long.

April 29, 2014 at 1:08 am
(33) Bobbi says:

I was diagnosed with FMS in 2008 but I know I’ve had it much longer. I have neuropathy too. I have asked for an MRI or at least for the VA (where I receive my health care unfortunately) to request my previous MRIs from my last health care provider but they say since my blood work ruled out MS or Lupus so it’s not necessary. I’ve read that lesions are often not reported to the patient until actual MS symptoms develop. I’m angry that I can’t get my doctor to even check my old MRIs.

My one appointment with a neurologist at the VA was the biggest joke ever. He merely parroted what my primary care doctor had said regarding my blood work, didn’t even talk about my migraines that are so frequent that I require Topamax to try to prevent them.

It’s so obvious that FMS is autoimmune and that it’s progressive. I didn’t believe it before, but lately I can’t trust my feet to find the pavement when walking. I’ve taken to falling frequently and painfully. I now have water on the knee, two bulging disks and a walking stick. Oy. I’m only 56, I walk at least a mile a day and don’t plan on buying another vehicle anytime soon.

I hope this brings us a little closer to treatments that work, not just the huge basket of pills I have to take everyday for FMS, the comorbid conditions and the side effects of the medications.

April 29, 2014 at 11:54 am
(34) JudyP says:

Had the EMG on my legs done today. I couldn’t feel it on the right side, but did on the left. The neurologist said I don’t have peripheral neuropathy, and she’ll let my pain doctor know. I have a bad feeling about this. The EMG test the big nerves, not the little ones, and when I said that I couldn’t feel the test, she said it didn’t matter for this test. I had an EMG on both arms before my carpal tunnel surgeries, and I can tell you that was one of the most painful things I have ever had done. I cried in public. I do not have diabetes or other things that would typically cause SFN, so if I do, it would be the FMS. I’m happy that I don’t have peripheral neuropathy; I’m terrified that the results cut my credibility.

April 29, 2014 at 8:20 pm
(35) Allei says:

I am right there with Sarah. I was diagnosed with epilepsy in ’05, but after a breast aug in ’03 started having severe problems with all over body pain, especially on either side of the sternum. Then I had problems in the upper neck, lower back, upper back. All points of tenderness with fibro. I was in and out of pain management centers because pcp’s would not handle me. I too was “labeled”. Just saw my neuro yesterday and he actually in 2014 asked me if I thought it was all in my head. I nearly punched him in his. Do docs only ask this of women? I lost my nursing career because of this and this a-hole says this? Now I have to figure out do I go to a rheumatologist or pain mgmt again. Nice life!

April 30, 2014 at 10:34 am
(36) Mar Ellen says:

Tested for small fiber neuropathy at Dr. Oaklander’s office in MGH. She is a top neurologist specializing in small fiber polyneuropathy. My ankle biopsy came back positive. Ask your PCP to refer you to her for an akle biopsy. They have new treatments out. I, too, have alot of your above symptoms and pain. Good luck.

May 1, 2014 at 12:23 am
(37) Sr. Bethany Mary says:

I have just reaad all the comments and see what a big thing is happening with more research being done. I would not be surprisedt if our condition is some how related to MS or other connected type disorders as I have been stunned to read some of the ‘family histories’ that appear in so many of the letters. I have had FMS for 12 years and it is getting worse with my overall health and wellbeing being diminished. My family doctor is now asking me have I read anything else that may be of health in the internet as she knows I read this site and check out any research or improvement in medications, which is a nice approach. I will tell her about this research so she can read it for herself. I have had my most unwell year and a terrible flare up this last wee and in bed nearly all the time the last few days. I had just wished I was dead, which is a terrible thing to say or think but it is the truth and I have everything to live for as I could be doing so much more if I were healthy, being in religious life. All my companions are helpful and sympathetic, and by now most of my ramily know there is something quite wrong. I refuse to go to anymore pain Doctors as they have been so obnoxious as a former nurse of many years I am horrified at what they say. All they want is for me to reduce my medication to nil as it will cause problems in the future. Who cares about the future when now the pain is unbearable and also my liver is in pristine condition they told me.

When a medication works in giving some relief for me, I thank God for it.
I have come to terms well and truly by sixty that death is a part of this life and it is the quallity of life now that is important. I pray ffor all the commentors that this research will now be taken further if it can be af
afforded.

May 2, 2014 at 4:07 pm
(38) Sophie says:

It would be nice if there was a similar study with m.e as I have peripheral nerve symptoms but Dr does nothing. We need much much larger studies and several of them and drug trials with very significant evidence for drug companies to invest I think… Or maybe its different in the U.S.

May 2, 2014 at 5:02 pm
(39) Julie Davies says:

I was diagnosed 2009 feel very ignored really but have episodes of numbness in legs arms and hands also very bad blurred vision sometimes difficulty in walking and very clumsy at times

May 2, 2014 at 6:48 pm
(40) Gail says:

After an arthroscopy on my knee in 2000 I had nerve damage and acquired complex regional pain syndrome. From then I have been ill with chronic fatigue IBS widespread pain etc. it is Bly recently that I have finally been diagnosed with fybramalgyia

May 3, 2014 at 2:21 pm
(41) Deborah Snider says:

My sister was diagnosed with MS in her early 20s but she had stroke like symptoms. I have Fibro and Chronic fatigue. I wonder if I have MS too?

May 6, 2014 at 8:46 am
(42) ddebru01 says:

Wow, I have been diagnosed with Neuropathy in my extremities on the left side of my body as well as in my hands and feet. I’ve had fibro since childhood but it went undiagnosed until 2007, when I became bedridden for 3+ yrs. This study makes all the symptoms make more sense than just Fibro. Thank you so much for educating me more.

May 12, 2014 at 10:30 pm
(43) Valentine says:

I second what Rayninart says. I’ve had FMS since I was a child, officially diagnosed about 25 years ago. It sucked then but wow, holy cow, if some one had told me it could get worse and to this level I wouldn’t have believed them/been looking for Dr. Kevorkian.

15 years ago I was in the sweltering heat of the attic cleaning some stuff out and sweating buckets. My vision started blurring, my head and neck bobbing and arms twitching uncontrollably.

Of course, got outta there in double time, but later when I called my PCP, I could hear the eye rolling over the phone. Long sigh, then “you do know that Fibromyalgia isn’t Parkinson’s or MS, don’t you?” The “Medical Profession”, gag.

That incident began the frequent bouts of spasticity that have kept me away from the public and friends. When they find out you don’t have the diseases “ok-ing” involuntary muscle spasms, well, it’s not just a really pretty picture.

I’m so sorry to learn that I am not alone….but, man, if we could rally and make the research community at large WORK for their paychecks, wow, that would be something truly grand. <3

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