Small Fiber Neuropathy Questions

[lejones1]

I've had POTS for about a year and since the beginning I've had burning in my feet. For a while it didn't seem to be getting any worse, but over the last few months it's started spreading up my legs and part of my left foot is entirely numb. The confusing part is that it comes and goes. It can go days without feeling it at all, sometimes it's just my feet, and sometimes it's all the way up my legs. It's usually just burning pins and needle sensation but occasionally it's a bit painful as well.

Does this sound like it could be SFN? I saw my neurologist today and he said he has no idea what it is and is confused by the fact that it comes and goes. He also seems unconcerned and has no desire to pursue it. But it is concerning me, particularly because it's getting worse. If this does sound like it could be SFN, does anyone know of any articles or papers regarding the association between POTS and SFN that I could show my doctor?

[Guest Alex]

Based on what I've been reading lately it may be worth looking into SFN

Here are some articles on SFN and POTS/dysautonomia - unfortunately I don't have the full text version for all of them.

http://www.neurology.org/cgi/content/meeting_abstract/78/1_MeetingAbstracts/P05.203

https://www.therapath.com/pdfs/Overview.pdf

http://www.ncbi.nlm.nih.gov/pubmed/17701872

http://www.ncbi.nlm.nih.gov/pubmed/14981179?dopt=Abstract

Best,

Alex

eta

Edited May 7, 2013 by alex74alex

[HopeSprings]

I've had burning in my feet since the beginning. I also have migratory symptoms - hot spots that come and go, tingling and numbness, buzzing in different spots that stay for a while, then leave etc. In the last few months the burning has spread to the palms of my hands. I asked my neurologist who specializes in neuropathy if symptoms can do this in SFN - change, move, come and go and he said yes. And POTS can definitely be related to SFN. I'd find a good neurologist who specializes in neuro-muscular disease.

[ramakentesh]

Sfn can definitely vary sporadically and wax and wane.

[lejones1]

Thanks for help everyone. Alex, those articles are great.

Unfortunately I called my neuro and he's pretty adamant about the fact that this can't possibly be neuropathy because it comes and goes + I don't have diabetes or HIV (I don't think he's very open minded). I have an appointment with a neurologist that specializes in autonomic disorders in 3 months so I guess I'll just hold out for that.

Naomi, do you take anything for the burning/tingling? Even just supplements? Or have you found anything to relieve it while it's happening?

[Guest Alex]

Ever considered supplementing B12? maybe...

I had some pins and needles at some point and now, in hindsight I blame them on the propranolol and withdrawing from clonazepam. They're gone now.

For me the B12 didn't help, but I believe it's supposed to at least give you some relief.

What helped me was Solarcaine - the topical gel for sunburns. It contains aloe vera and lidocaine - a local numbing agent and that made things more bearable. You might be able to find it at your local drugstore (maybe it has a different name) or at Walmart.

Hopefully your autonomic specialist will recognize and address the issue properly.

Alex

[ShakeyTheOwl]

Hi

My sfn symptoms are very similar to what Naomi describes. Sfn can be tricky to get dx, biopsy and qsart are pretty much standard tools for diagnostic via dysautonomia.

I've been trying utmost best to use diet (paleo) and supplements. Because im not candidate for the meds typically used for dys.

Ive found alpha lipoic acid helpful for the nagging daily burn and tingle.

The hardest and most painful are the hot areas, these are horrible- (like having rug burn plus glass crushed, air hurts those)

For those i use that capsaican (sp?) Topical rub.

the theory is it tricks the signal to brain. Its not easy, but has worked for me on two trouble areas, they are gone.

Hopefully some of this may be helpful.

[HopeSprings]

I don't take anything for the burning in my feet. It happens at night when I'm lying down so sometimes I'll put cool wet towels on my feet. I also have pain in my legs and for that I sometimes use Lidoderm patches. Lidoderm cream was another suggestion for the burning - you could ask about that.

[Natops]

My doctor prescribed me Lyrica for my feet/leg/body pain. It helps about 30%.

[ramakentesh]

All other types of neuropathy are permanent or long standing but small fiber neuropathy is different.