For those with neuropathic POTS (burning, tingling, pins): Has it stayed the same, gotten better, or progressed?

[Rkirkland]

Hello to fellow Neuropathic POTS patients,

I'm curious as to the trajectory of your POTS. Here, by Neuropathic, I presume the existence of small-fibre neuropathy and its associated features (burning sensations, pinpricks, electric shocks, goosebumps, etc). Some studies have said that neuropathic pots patients had a higher rate of recovery, some others draw no conclusion. As a result, I have two main questions

1). Has your POTS stayed the same, worsened, or progressed?

2). For each of the above, does the small fibre neuropathy correlated with it (less tingling and burning if its gotten better or more burning and pins if its gotten worse)?

There's just such less information about long-term prognosis in POTS in general and especially neuropathic POTS. Lets help each other out and future readers by stating how you are. 

As for me, I've only had POTS for a 1.75 years. In that time, my POTS has remained constant with periods (days, months, or weeks) of good days alternating with bad days. The features of small fibre neuropathy have remained constant since I got it. 

Thanks so much! All of you are so amazing. 

[Clb75]

I have CIDP which has caused both large and small fiber damage. I had it for 2 years before I got sick with pots, and have had pots for 4 years now. I’m mostly housebound. I’m on ivig and gabapentin so my neuropathy is not getting worse, but the areas of damage hasn’t reversed itself either. Ivig hasn’t helped my pots symptoms, they have been pretty consistent. 

[p8d]

I have SFN which presented with my POTS diagnosis.  Gabapentin has helped as has plaquenil for a subsequently diagnosed autoimmune disease.  My POTS hasn’t improved but I’m on meds and PT that help me manage it better.  I still get flares and experiment with meds/dosages but am housebound.  The longest I have been upright is about an hour but it was very difficult and has only happened twice.  I developed full blown POTS after a viral illness 3.5 years ago.

[Rkirkland]

14 hours ago, p8d said:

I have SFN which presented with my POTS diagnosis.  Gabapentin has helped as has plaquenil for a subsequently diagnosed autoimmune disease.  My POTS hasn’t improved but I’m on meds and PT that help me manage it better.  I still get flares and experiment with meds/dosages but am housebound.  The longest I have been upright is about an hour but it was very difficult and has only happened twice.  I developed full blown POTS after a viral illness 3.5 years ago.

Hi p8d, thanks for responding. I'm interested in knowing the correlation with SFN with your POTS. I presume your POTS left you housebound from the getgo. If so, which one of the following 9 options apply to you? In each option, we assume the presence of flares.

POTS same as it was 3.5 years ago, SFN same.

POTS same as it was 3.5 years ago, SFN worse

POTS same as it was 3.5 years ago, SFN better. 

OR

POTS better than 3.5 years ago, SFN same. 

POTS better than it was 3.5 years ago, SFN worse

POTS better than it was 3.5 years ago, SFN better. 

OR

POTS worse than 3.5 years ago, SFN same. 

POTS worse than it was 3.5 years ago, SFN worse

POTS worse than it was 3.5 years ago, SFN better. 

Thanks so much. 

[p8d]

Well, it’s all a bit subjective but POTS and SFN are better managed.  I still suffer tremendous blood pooling in my legs and is that from the SFN or ?  I don’t feel the pain of SFN much anymore and I’m better at keeping my BP/hr under control as long as I’m not upright long.  I was extremely poorly 3.5 years ago; I weighed 84#, was on TPN, hospitalized, had no control of BP/hr, digestive track was seriously messed up and we were trying to find meds I could tolerate.  So, yes it’s all better but... Yes, I have been housebound since POTS.