Small Fiber Neuropathy

I have SFN. The results of my biopsy (done last Oct.) were ankle: zero and knee: zero and shoulder: normal. It is caused by Sjogren's Syndrome for which I take hydroxycloriqen for Sicca. (For which it does help) It hasn't done anything for the SFN. I have no pain or numbness, for which I am grateful but the lack of those symptoms made it hard to diagnose. I do have loss of weight borne balance, which is a problem on many levels. I can't jump out of the way of my horses so find it difficult to be around them. And forget cleaning their feet. Did that one time and face planted. Not good. My legs seem to be worse (loss of muscle mass) inspite of IVIg treatments. I think I need something to remove the part of my system that is attacking my leg muscles. But my Doctor is unreachable (not just by me) so I am in a quandry as to which way to go. I told my rheumy all this and she said talk to the Infusion people. I will this Friday at my next treatment. We'll see.....

how do i ask a question about medication for neuropathy

how do i ask a question about medication for neuropathy

Hi. I have SFN symptoms as well. I've had all the tests at Mayo, over a period of three years now. Everything is pretty normal. My doctor says that my "hard drive is fine; but the software just isn't very good." 🙂

I've tried a lot of things. Gabapentin and Cymbalta among them. Doc says that if you keep increasing gabapentin, it will eventually help. But of course, you might be sleeping all the time or wobbly with dizziness. I just couldn't tolerate the side effects and it didn't seem to help me with the pain very much.

Cymbalta caused very strange and vivid dreams at night--and of course, there are sexual side effects, too. And, it didn't seem to help my symptoms.

Like you, I have quite a lot of pain--numbness and shooting pains, the feeling of my feet and legs being on Novocain--or just coming off the Novocain--all the time. Yuck! It also is worse as the day goes on and physical activity, while good for me, also seems to exacerbate the symptoms.

I, too, have wondered about the glass of wine. I often have a glass for dinner as well and I do think that it affects my pain. Not if I do it just once in awhile, but if I do it regularly. I'm not actually sure of this, though, but am trying to monitor the reaction over time. I do like a glass of wine, but I suppose I can get used to not using any alcohol. If it actually helps, it's worth it.

I've also thought about seeing a homeopath/acupuncturist to see if there is anything to be gained there.

I went to the pain rehab clinic at Mayo two years ago and am grateful for my experience there. Meditation and relaxation, trying to keep myself from emotional attachment to the symptoms by constantly seeking solutions--all that has been helpful to me.

I hope you experience some relief in the days ahead.

Hang in there.

Sorry to hear about all this. Like you, I've had all the tests, but everything is basically normal.
I also suspect I may have Sjogren's.

You have different SFN symptoms than I do--I have a lot of pain and numbness, but I don't have a balance or strength issues. It seems like they can't offer a whole lot in terms of medications for SFN. Perhaps physical therapy, with exercises targeting balance and strength could be helpful.

Greetings @nrivers. It is nice to see you posting on Connect again. My path through the testing and evaluation was also completed at Mayo. My medication path seems to be similar to yours, although I have not used Novocain for numbness and shooting pains. Your post is the first time I have seen Novacain mentioned. Gabapentin was my only resource from the initial diagnosis 11 years ago. I have given up on Gabapentin and replaced it with medical cannabis plus ibuprofen.

I noticed your mention of the pain rehab clinic. It just might be helpful for you to meet @rwinney, who has completed the life-changing experience and continues to support the PRC as well as holding a mentorship for Chronic pain here on Connect.

May you be safe, protected and free from inner and outer harm.
Chris

Hi. I have SFN symptoms as well. I've had all the tests at Mayo, over a period of three years now. Everything is pretty normal. My doctor says that my "hard drive is fine; but the software just isn't very good." 🙂

I've tried a lot of things. Gabapentin and Cymbalta among them. Doc says that if you keep increasing gabapentin, it will eventually help. But of course, you might be sleeping all the time or wobbly with dizziness. I just couldn't tolerate the side effects and it didn't seem to help me with the pain very much.

Cymbalta caused very strange and vivid dreams at night--and of course, there are sexual side effects, too. And, it didn't seem to help my symptoms.

Like you, I have quite a lot of pain--numbness and shooting pains, the feeling of my feet and legs being on Novocain--or just coming off the Novocain--all the time. Yuck! It also is worse as the day goes on and physical activity, while good for me, also seems to exacerbate the symptoms.

I, too, have wondered about the glass of wine. I often have a glass for dinner as well and I do think that it affects my pain. Not if I do it just once in awhile, but if I do it regularly. I'm not actually sure of this, though, but am trying to monitor the reaction over time. I do like a glass of wine, but I suppose I can get used to not using any alcohol. If it actually helps, it's worth it.

I've also thought about seeing a homeopath/acupuncturist to see if there is anything to be gained there.

I went to the pain rehab clinic at Mayo two years ago and am grateful for my experience there. Meditation and relaxation, trying to keep myself from emotional attachment to the symptoms by constantly seeking solutions--all that has been helpful to me.

I hope you experience some relief in the days ahead.

Hang in there.