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redpeach

Small fiber neuropathy

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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..

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I have SNF and Raynauds.  What you describe sounds like my Raynauds.  You should check with your Dr.  Many of us have Raynauds.  Have you been diagnosed with POTS yet?  

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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.

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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.

 

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Sjogrens autoimmune disease is a common cause of sfn and autonomic damage. I have this very badly as a result of sjogrens. Took me years to get the diagnosis. Lip biopsy was the only diagnostic test in my case as bloods always clear

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I'd def look into sjogrens with that combo of symptoms. If in the UK you will be fobbed off for years if your bloods are clear like most those i know with it. The lip biopsy will be the only way

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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. 

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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 

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