Link Between Small Fiber Neuropathy And Fibromyalgia | MyFibroTeam

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Link Between Small Fiber Neuropathy And Fibromyalgia
A MyFibroTeam Member asked a question 💭

I was tested and diagnosed only last year for symptoms that had been building in intensity.

I'll attach a screenshot of the article that shows the symptoms. Many of mine were very faint in the beginning and my doctors didn't know they were connected.

This article states that approximately 50% of people with fibromyalgia have this. It is not yet known if fibromyalgia is a result of this neuropathy or if fibromyalgia triggers it. And there is no treatment. But at least if you get tested you… read more

posted June 12, 2020 (edited)
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A MyFibroTeam Member

I don't know about this type of neuropathy, but I was told that I have peripheral neuropathy, as did my mother. They did that electrical test thingie on me. Hurt like hell. I take gabapentin which must help some because when I forget to take it, the tapping, tingling, burning pain is much worse! But it doesn't make it go away completely even if I take it on time.

posted June 13, 2020
A MyFibroTeam Member

yes there is help, I know the Fibro makes all the nerve endings "jangle" then they get damaged & sensations set in.I have had amazing results from PEA ( Palmitoylethanolamaide- I saw today in Pharmacy some-one has TM as levagen here in Aust

posted June 24, 2020
A MyFibroTeam Member

I've never been tested for small fiber neuropathy, never even heard of it. But after reading some of the symptoms, I can relate to a few of them. Like, the tingling/prickly feeling in my skin off and on in my whole body, sensitiveness of my skin, like I can't stand my hands always feeling so dry so I use a lot of lotion just so I can stand to feel things. And my hands aren't really dry. I even drink water more often to keep hydrated. I lose feeling in my arms, legs, feet, and hands if in a certain position for any length of time. So I'm always having to adjust how I'm sitting. Leg cramps a lot if I'm up on my feet a lot, even just doing simple chores, I have to take my time and take lots of breaks. Constant charlie horses up and down my legs. I've been taking magnesium twice a day, it helps some with the cramps.

posted June 12, 2020
A MyFibroTeam Member

Well I’ve been on all the drugs amitriptalyne and gabapentin to the max And they worked for a couple years and all stopped working but I researched and researched and these are the supplements that have taken that brought it down to 50-75 less burning and tingling and I doubled all the doses first month and now on it for two months, it needs to build up, but it is working after five years of trying everything. Check it out PEA supplement, lions mane mushroom, L-carnitine and alpha lipoic acid. It is working and I’ve tried it all. Good luck! 🤗

posted June 13, 2020
A MyFibroTeam Member

Hello all,
I used the information from this website created by a doctor from Massachusetts General Hospital Nerve Unit that specializes in studying SFN and created the punch biopsy testing standards.

https://neuropathycommons.org/neuropathy/neurop...

There is a lot of good information there and a place where you can enter your state and it will tell you the doctors that specialize in SFN in your state.

There is also a checklist of tests that can be run for known causes of SFN. If you have it, and can find the cause, it may be possible to slow the progression. I took my checklist to My neurologist and had a lot of the testing done, and what was left was done by the SFN specialist I saw in Rochester, NY.

Like I shared before, this has been a dead end for me, but I am posting it in case it could help one of you find your own doctor to be evaluated.

posted June 13, 2020

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