Jump to content

Small fiber neuropathy


redpeach

Recommended Posts

Does anyone have small fiber neuropathy with their pots? If so, where you able to get an answer as to why? My feet get ice cold, then burn and turn bright red. Sometimes when I walk they itch and go numb too. Something underlying has to be causing this! I also have full body aches, supine tachycardia and crushing fatigue. I feel so alone..

Link to comment
Share on other sites

I also have SFN with POTS. I’ve had a lot of testing done to identify the underlying cause and the only thing that has been found so far is that I have Exocrine Pancreatic Insufficiency, which my specialist doubts is the cause of the SFN/POTS. Unfortunately from what I’ve read in many cases of SFN the underlying cause is not found and it’s a case of managing symptoms, however it should be thoroughly investigated to be sure (eg ruling out Celiac, Diabetes etc). I was prescribed Lyrica for the SFN pain and found Mestinon really helpful for the POTS. 

As a suggestion, if you search the DINET forum for “Small Fiber Neuropathy” or “SFN” you will find lots of posts from other members who have this condition and the previous posts may provide you with some insight into your condition.

Best wishes.

Link to comment
Share on other sites

The ice coldness is likely from peripheral vasoconstriction, which I think is somewhat common if you experience a high amount of norepinephrine.  In my opinion, the bright redness and burning sounds to me like erythromelalgia.  

I'm not really sure how the norepinephrine swings lead to erythromelalgia, but i have the same issue, particularly in my ears.  My feet have been in a varying degree of burning/tingling since my POTS started.

 

Link to comment
Share on other sites

Red peach seeing as you are in the U.S you will likely have a much more hopeful outcome if you have sjogrens. We are fighting a useless unfit for purpose NHS system where resources are spared. Basically I'm not being treated adequately at all. 

If you were diagnosed Sjogrens in U.s you would be in a good position to access ivig and or rituximab. Seronegative sjogrens presents for many of us as a small fibre neuropathy with autonomic damage also. I had negative blood tests for sjogrens so could not get the lip biopsy which is good standard for diagnosing Sjogrens. I paid in the end, got the biopsy and the diagnosis confirmed. 

Could you look into sjogrens online and see what you think? I only had the neuropathies for years before dryness and other issues. 

Link to comment
Share on other sites

Hey yall im new to the site but I am currently being followed by a rheum at johns hopkins and lab work recently was positive for ANA and ANTI SSA which rheum said is sometimes seen in patients with lupus and or sjorgens. I began having dysautonomia/pots symptoms about 6 months ago and have dry eyes. although i do not have a formal diagnosis of sjorgens or lupus it makes sense that sjorgens could be causing autonomic dysfunction in me due to nerve damage. I have tachycardia with standing but also sensitivity to light and noise. I hope my rheum can connect the dots and start me on some medication that helps. I see dysautonomia dr next month at hopkins. I am a physician assistant and work in healthcare. before being diagnosed i was a physician assistant in a 108 bed ER. I was misdiagnosed a hundred times and everyone told me i just couldnt handle the stress of the job. turned out to be pots. finally getting some answers and i hope for more.  I pray all of you find answers and get healed or at least helped! Heath 

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...