Small Fiber Neuropathy in Fibromyalgia & Chronic Fatigue Syndrome

I have been taking gabapentin (generic Neurontin) for quite a while and it has helped a lot with my pain. I feel this could be the explanation for why it works for me!

I’ve never had a skin biopsy done but I have neuropathic symptoms — mainly in my legs and feet. I also have Raynaud’s disease in addition to my CFS and fibromyalgia. I’m on the maximum dose of Lyrica for fibromyalgia — 150 mg three times a day. I would say it’s helped my pain about 30%, better than anything else I’ve tried. Still, my fibromyalgia is severe and I’m unable to work. Research is very slow but it’s encouraging that there’s a greater understanding of our conditions than when I first got sick in the 1980’s.

What are the neuropathy treatments? Is it Lyrica? I take 150mg 3x/day.

I’ve always divided my FMS pain into two types: joint pain, and what I call neuropathy which is a skin level burning kind of like a sunburn that runs from my knee up my left side to my chest. I take Tramadol for pain and it seems to work better on the burning pain than the joint pain.

I’ve had CFIDS/ME since 1985. Sometime around last February I started having symptoms of peripheral neuropathy: tingling in feet and hands. The symptoms have since got to the point that I can’t walk more than a short distance without feeling intense pain on the bottoms of my feet. The same happens with my hands, but as I don’t walk on them (at least not yet) they don’t hurt as much unless I use them a lot. I haven’t ridden my motorcycle all year because of this and I’m afraid I’ll need to sell it soon. Anyone looking for a 2006 BMW K1200LT?

My neurologist started me on gabapentin which did nothing for me. Then she tried me on something else with the same results. Then I went on to Cymbalta. I worked through the nausea and extreme fatigue and it seemed to work a little for a while but recently stopped working all-together.

I just started on Lyrica – time will tell where this leads me – other than to the poor house.

I’ve always had neuropathic pain (even since childhood), but I never knew what it was until about 2 years ago when I explained the sharp, stabbing pain that I get. It happened about 2-3 dozen times a day in random places and at random times. I went to see a Neurologist and she said that it was neuropathic pain…well, I don’t believe her. All the research I’ve done says otherwise. My doc put me on Neurontin (Gabapentin) to try to help with my overall FM pain. Well, it didn’t help with the deep aching that is my most dibilitating symptom, but it did take away my “neuropathic” pain. I now have the stabbing sensations 1-5 times a day…which is a HUGE improvement. Even though this was never my most concerning symptom, it is nice to have at least one symptom treated.

oops. I explained the pain to a rheumatologist.

blame it on the fibrofog :/

The Rheumatologist said it WAS neuropathic pain…the Neurologist said it WASN’T.

Aspartame is a culprit in small fiber neuropathy as well as other physical symptoms.

I subscribe to the Mayo Clinic Women’s Health Newsletter and the latest issue had a couple pages on peripheral neuropathy!! That’s one of the pains I’m dealing with right now. I have an appt with a neurologist 11/1 and afraid she’ll do another EMG–a test I had to verify carpal tunnel. It’s a very painful test!
Chiropractic and acupuncture are, I think, slowly improving my FM/CFS/Carpal Tunnel/Neuropathy. At least, the pains are managable some days so I can make a quick trip to the grocers. Still need percocet daily. Giving myself permission to take lots of rest breaks is still a process of acceptance.

This helps explain the pain and burning down the entire left side of my body!

I have had fFM for 20 yrs plus. My left side is definitely worse, espcially after need for neck surgery and shingles. Like so many of us, I hve been thru all types of meds and txs. Most recently, Cymbalto, Lyrica, Xylocaine patches, Ambien, Tramadol, Lortab and tizanadine. I wish they could explain why so many pt’s pain presents on the left side.

I had the biopsies six years ago and my neurologist showed surprise when the results came back positive for small fiber neuropathy over my entire right side. He was surprised because, he said, he sees this in diabetics frequently and I am not diabetic. I reminded him that I have severe fibromyalgia and CFIDS and that I wasn’t surprised at all by the result. He just nodded his head and gave me a sympathetic look. I am glad to see the research catching up to what many of us already know to be true.

I have had at a minimum sharp, shooting pains; orthostatic hypotension and autonomic symptoms with my Fibromyalgia and myofascial pain. I am now on Savella Tabs (50 mg) which is like a miracle drug; along with Ambien to help my sleep. In addition, I have been doing physical therapy w/TENS unit, heat, exercise and additional massage that my PT does with another unit — perhaps magnetic.

I am free of pain, have more energy than I have had in a long time and am sleeping less. There are times when I over-due and suffer consequences, but 90% of the time it is like a new world.

My prior routine was Cymbalta, Mobic (for pain). Under this routine I continued to have muscle stiffness, horrible muscle pain and shooting pain in my legs with more exhaustion.

I have FMS and CFS. I also have had for many years, several times a year where I can only describe my symptom as always being on my right side only and feels like “exposed nerves” being rubbed. My doctor says he has never heard of anyone with that symptom. It may last a few days or weeks at a time. My skin is so sensitive that it hurts to brush my hair on the right side, put or take off makeup on right side of face, or clothes touch my skin on right side. You could draw a line down the middle of my entire body and the pain starts exactly in the middle and is on right side. Anyone else have this?

I mentioned that gabapentin helped with my pain, but wanted to add that Lyrica worked much better. My insurance wouldn’t pay for it, so have to use gabapentin in combination with being on Cymbalta. Also, neither of these has helped much with joint pain, but has helped with what I only suppose now must be neuropathic pain.

I took one gabapentin dose and woke up the next day super depressed. Cymbalta made me wake up at 3 am and Lyrica made me swell up, 10 lbs. of water weight gain in a week. I couldn’t tolerate those side effects with no pain relief. Tramadol worked for a few months then I developed an allergy to it, I have never been allergic to anything including poison ivy. Latest doc started me on a super low dose of Nortriptyline as I’ve been getting serious muscle knots in my shoulders and back. That worked for a month but now they are starting again even with a slight increase in the dosage. It has stopped the burning in my joints. Cheap generic, check it out if you haven’t tried it, it’s an old school anti depressant and costs me $8 for a month.

Have questions and comments for Barbara about her post,
“Aspartame is a culprit in small fiber neuropathy as well as other physical symptoms”.
Aspartame, yet another chemically composed sweetener, is used in consumer food products, desserts, candies and gums. Many diabetics rely on it as do people that feel it helps with weight loss and these products are widely sold to consumers. Regardless, I prefer not use it for various reasons.
We are here to learn and a simple statement, as such, without providing medical basis to back up your information is not helpful. As it is used by so many should not everyone that does use it also be affected by small fiber neuropathy? Can you offer an explanation about what study proves your point and where you learned that it causes this condition and other physical symptoms? Personally, I would like to investigate this matter further. Thank you, in advance, for explaining this issue.

i am using a compounded pain cream that has neurontin ( gabapentin), baclofen and several other drugs in it and it makes a HUGE difference .. it does NOT have capsacin which made the pain worse! – i have been saying for 25 years that this is a neurological illness!! wish someone would have listened to me a quarter century ago!!!

If anyone is interested I have found Emu oil from Australia is a great help with topical and deeper pain. i also use pain patches when it is really bad and these do also help

Linda, Maybe you don’t have to endure the EMG. Ask what the DR hopes to learn from the test and what the treatment would be for each result. Maybe it will be possible to try a remedy, without undergoing the pain, cost and inconvenience of a test.
I am trying this approach now myself, after I found out the blood tests for Vitamin D cost $400.00. That’ll buy a lot of Vitamin D!!

Hi, I’ve read through all the posts and have a question about the pain patches mentioned. What is the specific name of the pain patches? Who all has tried pain patches? I have super bad pain in my upper back and shoulders when I get a fibro flare and use Biofreeze roll-on topical pain reliever, but I’m thinking that there has got to be something more effective than the Biofreeze. It does help a little and the cooling sensation feels good sometimes, unless I am also having painful chills running through my body. Then the only thing that helps is the heating pads.

Thanks everyone!

Me again…..I wanted to also comment on the poster who talked of the testing for carpal tunnel. I went through that in August and the testing on both hands was bearable, but very annoying. BUT it caused me a huge, horrible flare that lasted days and kept me in bed feeling lifeless and dead. The tests concluded that I did have carpal tunnel in both hands with the right hand more severe. I currently have constant numbness in the thumb and first 2 fingers. So, I went ahead with the injection into the right wrist to try and alleviate the numbness and tingling sensation. The shot really sucked, BUT I again experienced a really horrible, even worse, fibro flare that totally wiped me out. I didnt expect that at all since it was just a shot – but the shot was injected right next to the nerve and shazam, I get a flare! There has got to be a connection in all this. The nerve conduction tests caused a flare when the equipment sent a signal on the nerves from the tips of my fingers all the way to my spine. Then I get another flare when they inject cortisone into or next to the nerve. I believe it totally flared up my nerves and caused them to be totally out of control – which is what they suspect fibro is: out of control nerve signals. At least that is what I was either told at one time or read somewhere. Correct me if I am wrong please!

Anyone else have this happen to them?

I had ME/CFS and Fibro for over 20 years before I was diagnosed with peripheral neuropathy. Wikipedia says that PN and SNN are the same. Anyway, I had been slowly getting the burning/cold feet sensations for many years. I’m really not sure when it started so perhaps it started very gradually with the onset of ME/CFS & Fibro.

I thought my sudden exaccerbation of symptoms was due to my back condition that required 2 lumbar area surgeries in 2004 – fusions – but the surgeon said not. They were 2 different things.

I had begun to think that the PN must be part of having ME/CFS & Fibro. Perhaps I’ve been correct. I presented this question to my neurologist and he agreed with me that it probably was connected.

Obviously this is something that is worth more study.

Gabapentin helps a lot. While it doesn’t eliminate all burning sensations, it relieves it and the tightness feeling around the calves of my legs plus I have less shooting pain.

I take tramadol for fibro and ibuprofen for arthritis. I never had to have the biopsy because my neurologist did not feel it was necessary. He has done several other tests the names of which excape me right at the moment.

I had a ruptured disc and had back surgery in June. Now I don’t know if the pain I am having are related to surgery or possibly my fibromyalgia acting up. I am seeing a pain doc and he is only treating me with pain meds and gabapentin. I have been having some terrible pain in my back legs and feet and don’t know what is causing it.

How do you get referred to a rheumatologist when your docter doesnt seem to care or understand how bad the pain is? can you insist on being referred? ive suffered for 18yrs since early 20,s and at times the pain is unbearable,altough been on a few different tabs nothing seems to work,as a mother of 3 i just want to manage the pain and cfs,i suffer with every side effect to fibro thats going but my docters just seem to think i should put up with it!

I’ve recently got a PN since having a reaction to a vaccine. I’ve had ME/CFS for 18 years and never had PN before the vaccine. It started with aching all over and is now in my hands and feet.

Although most of you here say you have CFs/ME and PN, i would say it may be your thyroid causing it, as PN is caused by hypothyroidism. CFS./ME can have a thyroid out of whack. It may be worth a trial of thyroxine for a month or 2 to see if the PN resolves, whatever your TSH.

I’ve tried all the drugs that supposedly treat fibro pain. Cymbalta, Lyrica, Gabapentin, narcotics, Ultram, SSRI antidepressants…you name it. None of them have worked or worked for long if I had even a little response.

With SSRI, I now flip into serotonin toxicity very quickly. My doc gave me some Klonipin while I was having toxicity and it helped the neuropathic burning pain that just sort of comes on for no discernable reason and travels in waves around my body. He couldn’t understand why it had any affect.

Turns out, benzodiazapines are used in the ER for severe serotonin toxicity. Klonipin is a benzo. Benzos are used for seizure activity. So, I am thinking that while not a true siezure there must be similarity to neuro pain and seizure.

I say it is about time they p;aced more attention on the neuro aspects of these problems.

Recent research links also links fibromyalgia to mast cells in addition to neuorpathy.
Link: http://painmuse.org/?p=369#comment-46649; http://www.therapath.com/Mast_Cell_Density.php

I’m absolutely amazed at this research because I’ve suffered CFS/FMS symptoms for nearly 10 years and I have always suspected small fiber nerve involvement. I searched/researched intensly when I developed these symptoms and I was also diagnosed with autoimmune hypothyroidism (Hashimoto’s thyroiditis).

My thyroid hormone replacement didn’t relieve my perhiperal neuropathy (PN) symptoms, which include some autonomic ones (dizzy upon first standing – “orthostatic or neurally mediated hypotension”). I even mentioned my suspicion of small fiber peripheral neuropathy involvement in articles I wrote as long ago as 7 years. I simply felt the similarities were too strong between symptoms of CFS/FMS and PN, including the fact that orthostatic hypotension is a very common finding in these syndromes.

I’m so grateful to see this research ongoing and I sincerely believe the connection of these syndromes to PN will become even further substantiated as it continues.

I have been diagnosed with peripheral neuropathy. The pain started in my abdomen and moved to my arms and legs. It feels like tingling and sometimes a twisting pain. I get occasional electric shock feelings.

I am on 1200 mg of gabapentin a day which helps a lot.

I am beginning to suspect fibromyalgia. I get a feeling of sore spots on my body mainly on my arms and legs. It feels like bruises.

Sometimes my ribs in front feel sore and the sides of my waist hurt. It hurts me to sit for more than 20 minutes at a time.

I have been in moderate-to-serious-to-severe pain for the past 6 years. Started in left arm. Now it’s in both arms and both legs and toes of right foot. Shooting pain like a sharp knife; very painful pulsating pain; pins and needles; numbness and burning (arms and legs) to the point that I can’t even wear a shirt or pants. Got worse in the last two years. Lost my job (now on disability) and my social life. Notwithstanding a couple of insultingly dismissive remarks from doctors that were uncalled for, last year got a diagnosis of chronic neuropathic pain. For the first time last week, a neurologist suggested “small fiber neuropathy” but said that he doubted it. Still, I am as confused as I was 6 years ago. Your article is interesting.

I have had fiber and neuropathy in my hands and feet for over 11 years. I have seen over 13 doctors, all kinds and went thru a pain clinic twice. The pain in my feet is unbearable. 24/7 for eleven years. Some days I want to just put a gun to my head. The pain has been a solid 10 for many years. Some days I am lucky to be able to take six steps. I can’t wear socks or shoes or even touch my feet. I have taken so many different meds and tried so many different things; heat, ice, tens machine, acupuncture, you name it. The pain just gets progressively worse. Some nights I have to sleep holding both feet in my hands. (Try that one!). Whenever I saw a new doctor I was always told “Don’t worry I can help you.”. Yet by the third sessions I would be told that there was nothing they could do and would show me the door. All I would like is one day free of pain so I could remember what it was like to be pain free. I am so tired and depressed and very very angry because most of the info about my problem I have had to find myself. I am now on a drug called Opana-supposed to be three times stronger than Oxycontin. I might as well be taking candy. I am now developing blisters on my feet, and my big toe has gangrene on the tip. I spend my life housebound, lucky to get out once a week. I just had to purchase a wheelchair. Thank you so much for letting me vent. This is the first time in eleven years that I have been able to find others that are going thru the same pain. Bless all of you who are experiencing this he’ll on earth.

I have a widespread s.f.n., after nearly ten years of being diagnosed with peripheral neuropathy in my feet, it has spread rapidly over the past 3 years, and now covers the whole of my body.

I have ‘lancinating’ pains coming from between toes, my tear ducts, and ever less mentionable place too. Widespread burning sensations typically cover my lower torso, inner thighs, feet, hands, and 1/3 of my face. Nice, hey? Then there’s the slow loss of urinary control, absence of libido, and more..

I’ve seen a number of neurologists, pain specialists, etc., and have tried gabapentin, as mentioned above.. I replaced it with Lyrica/pregablin for better control of the lancinating pain, at 600mg/day. In addition, I have finally given in to 3 years of doctor’s suggesting opiates, and wear 30mcg/hr 7 day patches. These have a whole lot of side effects of their own.. confusion, dizziness, drowsiness, random heavy sweating, nausea, feeling extremely hot or cold, constipation or the opposite sometimes…

I’m tired out, not having really slept properly since the s.f.n. reached my most sensitive bits, and having had viritually nil medical input regarding treatment, as opposed to palliative care. I found the item about infra red light treatment intruiging, and will do more research.

After yrs of misdiagnosis I started taking lamictal 10 yrs ago and have hardly had a problem since. Give it a try if all else has failed. It works differently that neurontin and other meds. Good luck!

I suffer of severe FM, fatigue, and severe burning and tingling in my fingers, hands and other parts of my body. I suspect I have small fiber neuropathy but i dont have insurance to have a skin biopsy done. I take neurontin and klonopin to help with the burning and it helps some. I used to take lyrica for FM but I quit after my muscle pain went down after taking vitalzym enzymes for FM which i found in a website that sells supplements for FM. I also buy other FM supplements which help with the fatigue. I decided to quit lyrica after i found out that its use on long term can cause more damage to the nerves. I’m trying to heal my nerves by taking neuropathy support formula which is special form of B vitamins and alpha lipoic acid. I’ve been taking these vitamins for 3 months now and I already see improvement in my nerve symptons. They don’t burn as much as they used to. I hope this information is useful to someone.

I hear people talking about a skin biopsy…my doctor kas recommended a “nerve biopsy” to provide info on a possible small pain neuropathy. Any experience with that?

I too was diagnosed with carpotunnel in both hands…surgery was recommended. Thought seriously about but realized I had same Neuropthy in my feet and surgery wouldnt help that. Later diagnosed with “reflux” in my legs …again surgery recommended. As in carpo, left side was most severe and surgery(vein removal) was done. My right side–without surgery is oh so much healthier than my left. So I declined the right leg surgery. Fibro mimics so many other syndrome/diseases, we have to be careful of misdiagnosies and unneeded surgeries. Sooooo… Nerve biopsy? I guess i will be a guinea pig. In the meantime I am trying to find out as much as I can. Oh by the way, with both suggested surgeries, the kept side was much worse and recommended first. Hmmm

Janie,
You might want to inquire on FaceBook in ‘The M.E Chat Room’ group. I’ve found it to be a very helpful place to share information. Good luck.

“Aspartame is a culprit in small fiber neuropathy as well as other physical symptoms.”

i am a supertaster and can not use Aspartame or any other artificial sweetener as to me they are a bitter foul tasting chemical.
yet i still have SFN and fibro.

I know if a few others that are also supertasters that also have fibro.