In the last few years we’ve seen many articles about the overlap of small fiber neuropathy (or small fiber polyneuropathy – same thing) with Fibromyalgia. And, the hope that we may be able to use skin biopsies of these small fiber nerves to diagnose Fibromyalgia.
I’ll be honest I thought for a while we were just seeing the same study popping back up in the news (and it frustrated me); however, I’ve realized I was wrong.
There have actually been a couple of studies in as many years that have made this connection.
That said all of the studies I’ve read have been very small (less than 30 participants), and they are not finding that all of the Fibromyalgia patients have this (only about 50% of those in the studies).
However, these studies may be a stepping stone to uncovering one potential cause for the pain associated with Fibromyalgia.
But, what is Small Fiber Neuropathy?
Small Fiber Polyneuropathy (SFPN) is a disease (yes, an actual disease) that causes degeneration in the small fiber neurons.
The small fiber nerves are the ones that transmit the information about pain and temperature.
These small fibers are also involved in many areas of the autonomic nervous system (the part that controls the automatic features like breathing, digestion, blood flow), so it’s a little more than just burning and itching in the feet.
Small Fiber Neuropathy is more than just burning and itching hands and feet. Share on X
Unlike problems in the large nerves small fiber neuropathies don’t show up in EMG and nerve conduction studies.
SFPN is most commonly associated with diabetes, but can be caused by a variety of other diseases and illnesses, and can even be genetic.
A skin biopsy is the primary way of diagnosing SFPN.
Unfortunately, diagnosis of SFPN doesn’t do much for those of us with Fibromyalgia except perhaps make us feel like we have a better diagnosis than just Fibromyalgia.
The treatments for SFPN are basically the same ones that we already use for Fibromyalgia (anti-depressants, anti-convulsants, topical pain treatments, gabapentin, and tramadol to name a few).
What are the symptoms of Small Fiber Neuropathy?
- Painful burning/ itching feeling in the hands and feet – this seemsto be the primary symptom
- Often worse at night and/or made worse with heat or cold – often people can’t stand to have the sheets touching their feet.
- Alcohol can also increase this symptom
- Digestive symptoms including diarrhea, constipation, nausea, vomiting
- urinary incontinence
- Periods of increased heartbeat
- Dry eyes/ mouth
- Abnormal sweating
- orthostatic hypotension
- erectile dysfunction
- Skin changes in affected areas
I have pretty much all of the symptoms listed, and so many of these are symptoms we often attribute to “just Fibro”.
My diagnosis journey began with burning and tingling in my hands, a variety of tests turned up nothing.
I’ve often had a burning in my feet (and they get red and puffy) if I do much walking but I just wrote it off as the effects of walking too much in poorly fitted shoes.
Then I noticed that I was waking up with this extreme burning in my feet. They would feel like they were burning but also as if they were extremely dry, even if I’d put lotion on them just before I went to sleep.
To feel my feet the skin didn’t feel dry to the touch, but that’s the sensation that was being transmitted to my brain (along with the severe burning).
However, I noticed that more and more often they were also very red and puffy looking (inflamed).
After doing some research I found that this is a (rare) side effect of the medication I was on for migraines (Verapamil) and when I told my neurologist about the symptoms he had me stop the med.
The symptoms did decrease after about a month off of Verapamil but they never completely disappeared. I think they were there all along I just hadn’t really connected them.
I have noticed that the tingling in my hands and the burning in my feet are much worse on nights when I’ve been drinking alcohol.
I would never have thought to connect the other issues like the urinary and digestive issues had I not read it for myself in the NIH documentation.
Related: Fibromyalgia nerve pain: there may be more to it than you think
I had my neurologist run the the test for small fiber polyneuropathy, which involves taking small skin biopsies. My results came back borderline. However, he said it was enough that he felt comfortable diagnosing me with SFPN.
Do you also have painful tingling and burning in your hands and feet?
How many symptoms of small fiber neuropathy do you have?
Related:
- New study sheds light on fibromyalgia as nerve disorder
- Vagus nerve hypothesis for fibromyalgia
- The treatments that have helped me most
- Resonant botanicals CBD lotions for pain relief & relaxation
References:
Do you have painful burning and tingling in your hands and feet? you aren't alone. It might be small fiber neuropathy. Share on X
Colleen Gains says
This article is a gift. I spent a considerable amount of time, money and unnecessary pain at the insistence of my PCP to have an EMG. Now I see that it would not have registered what I am experiencing. I am “firing” my doctor and hope the new one is better. She wanted me to undergo additional testing not related to my feet feeling like I just ran across a hot parking lot of sandpaper. It’s unfortunate that there are so few knowledgeable practitioners to treat this. Without being considered a hypochondriac, dismissed or worse.
Dianne k. says
My neurologist tested me and I was positive so she started ivig infusion therapy because I was already taking the medication that would be prescribed to control it . I would see if your doctor would recommend ivig it has been wonderful even helped with my other autoimmune disease symptoms and skin is better than before teen years.
Penny says
Does anyone else have trouble with itchy skin? It’s usually between my fingers and toes, it’s so extreme that I scratch until the skin is raw. Nothing takes away the itch. I get really bad flare ups when the weather changes.
Julie says
Yes. I haven’t posted about this because I haven’t had the brain and energy to do a post, but this year I ended up going to Mayo because of new and increased symptoms the last 2 years. I was diagnosed with MCAS which is overactive mast cells (the things that react when you’re allergic to things), turned out the itching I’ve always had as well as the flushing and how I turn red at even light scratching are all part of that. It seems like the more I’ve learned fibro may have been a red herring for me the last decade plus.
Maureen says
Julie
I have been reading everything I get my hands on about fibromyalgia. I’m in constant pain 24/7 but worse at night. I’ve have numerous foot surgeries, knee replacement surgery & shoulder surgery. I’m currently being treated for migraines with Botox. Nobody’s listening to these problems. Any suggestions on what to do?
Julie says
Keep pushing. If a Dr won’t listen find a new Dr. Be direct and succinct when you talk about your symptoms. Do your best to avoid getting emotional. Unfortunately, too many drs are just dismissive of women’s pain.
Berna Struwig says
Please be so kind as to inform me about the reason for the deformity that took place in my feet since I have been diagnosed with diabetes. My left foot is totally flat now and it feels as if the bones will come through my soles! My right foot is also affected but slightly better. The pain when I walk is unbearable and I use a stick for walking.
I take Glucophase ( the medication here in S-Africa) once a day and it seems I should also rather stop with lyrical ,
I am very worried about my deformed fee (jutting out to the inside of my feet) and the pain shoots up into my left leg at times. Please tell my what i can take for the terrible pain. I do take an antiinflammatory pill
Julie says
I could not tell you. I’d suggest talking to a podiatrist.
Barbara Munn says
The burning, numbness and tingling for me is in my knee area up to my buttocks. My feet at times have the tingling and burning but my problem with my feet is that I can’t wear shoes because my feet feel like they are constantly wet. I was diagnosed with Chronic Fatigue and Fibromyalgia 28 years ago. It’s hard to understand that the medical field isn’t any closer to knowing the cause now than 28 years ago. I have gone to doctors for so many different symptoms, had do many test done and they ALWAYS come back negative.
I have TERRIBLE bowel symptoms, I have to always carry extra pads, underwear and an extra pair of pants with me when I go out. We can’t go out to eat and then go to a movie because of the bowel situation. When I go out, eating is the very last thing I can do and than I have to pay very close attention to what I eat so I can make it home without an incident.
As everyone else knows the pain and fatigue is indescribable, insomnia, the tossing and turning trying to find a comfortable position, the constant having to get out of bed because the pain is terrible or at times just down right unbearable. Than there’s the nights when every hour the bladder has to be emptied. I live 15 minutes from town and I cry every time I have to go to town because I know when I return home I’ll be so exhausted all I’ll be able to do is lay down.
I’ll be 70 years in a few days and this is definitely not how I had envisioned my golden years to be spent. Until Chronic Fatigue and Fibromyalgia entered my life I was going 90 to nothing. ALWAYS busy, always involved in life NOW I don’t even want any part of life. Oh, I stay engaged in life, I have hobbies that I do at home BUT at home is not where I want to be doing them and my grandchildren I try to stay very engaged with their activities BUT it does come at a cost. Like everyone else I have to pick and choose what I’m going to try to participate in and ALWAYS hoping that my body will want to participate without to much pain or inappropriate reactions.
I try to believe that researchers and/or doctors will discover the cause or causes of Chronic Fatigue/Fibromyalgia and other diseases one day BUT until that happens I do hope that doctors who don’t believe these diseases/illnesses are real would get with the program and start listening to their patients. To us the pain is REAL, the symptoms, high blood pressure, uncontrollable heart rate, heart pain, shortness of breath and the list goes on ARE REAL. All we want is someone to hear and listen to us.
Is there a test that can diagnose CFS/Fibromyalgia? There is a company in California that keeps contacting me, wanting me to participate in a study that they say can tell if a person has fibromyalgia. I’m more that willing to participate if it is real and not a scam. Can you please answer that question? Thank you for this platform maybe here we will be able to get REAL INFORMATION and help to improve our quality of life and our mental health.
Maureen says
Hello there,
Can anyone tell me if they have very painful feet all the time I feel like I am walking on bare bones and it is like this day and night causing me problems trying to walk. It is just so painful and nothing seems to help.
I have suffered with fibro for about 6 years now but don’t know if this is connected
Sarah Corinne says
My fibro pain started with neuropathy (pins, needles and cold numbing) in my thighs. Then down to my feet. Night is the worse as you say and I get the dry skin feeling. But mine got so bad that it got to the point I could not walk at all, any time. I went to a chiropractor functional neurologist who treated me for 6 months with chiropractic treatments, red light therapy, vibration therapy, laser and physical therapy. It was like a miracle. I can now travel, take my dogs for walks, do things during the day. At night they still bother me, but dealable. Then my dr put me on Lyrica for the other fibro issues, and it brought most of the neuropathy back! I’m off Lyrica but damage done. Nighttime is a nightmare for me. Most of the nights I can get to sleep by soaking my feet in cold water, then putting lancaine on them, followed by compression socks.
Before the Lyrica issue, I found that light compression socks helped the night issues. Circulation is definitely a part of this problem as that is the principal reasons that the chiropractor dealt with. I also find position can be an issue for me (I have back issues). Thank you for this article. Very helpful as I also have all of the other symptoms. I will definitely ask my dr about this.
Julie says
Lyrica was a nightmare for me too. It seems like (from talking to people) that it’s either a miracle or a nightmare, no in between.
Jeannette says
Hello,
I too have terrible burning feet….. For years I have had this. I thought it was a circulation problem and have taken extra vit e as well as other herbs and supplements for vascular health. These things have helped, but for some reason they’re not working any more. I do have hypothyroidism, but I do not have any other fibromyalgia symptoms. I am fit and exercise frequently. The only other thing that connects me to your symptoms is my bladder issue. I do not have incontenance, but I go frequently. I also have restless leg syndrome. I have never hard of this condition and will definitely do some research.
Dan Bulkley says
I have the same symptoms and have not been able to find a doctor in Utah to take me serious. I keep being looked at is if it’s in my head – this is very frustrating when you know it is real and not imaginary.
Julie says
I hope you do find a doctor that will take you seriously. Surprising, as doctors usually listen more to guys. Have you been diagnosed with Fibromyalgia? Now that you know about SFN, you might be able to try directly asking for the test.
Aida Rios says
Dan,
It would b worth your tme to take a trip to the MAyo Clinic in Scottsdale, AZ. After seeing many specialists from neurologists, podiatrists, cardio, nephro, etc,. I finally got the correct diagnosis and medicatios. As we know, the pain will not go away, but it certainly has taken the edge off.
Best of luck to you Stay safe and healthy,
Aida
Jackie says
Has anyone found a way to deal with this? For the last two winters the toes on my right foot have been extremely painful at the tips, like someone mentioned I thought it was dry skin but I see nothing, but my toes are swollen so obviously something’s going on
Julie says
Gabapentin is supposed to help. NP Tim told me to up my dose and it has seemed to improve things a bit.