Neuropathy As It Relates To Disease Course/ Prognosis

[navyblue]

So I know how 50% of POTS patients have small fiber neuropathy...anyone with experience in this, what type of a POTS course has it come along with....waxing/waning, improving, progressing?

I'm under the impression that nerves heal, although it takes a while...maybe this is the reason that POTS can improve over the years?

But then, I suppose, if there's an underlying disease process causing the neuropathy, that must be taken into account too...

So just wondering people's experiences with this...is a recovery still possible/likely when small fiber neuropathy is involved? What does the research say? What have your doctors said?

[htberg]

Thanks for sharing--I haven't heard that before. I have small distal fiber neuropathy and have not been diagnosed w/POTS yet, they just put orthostatic intolerance on my chart w/dysautonomia. I was diagnosed in 2008 and the neuropathy not only affects my legs, but my organs too--bowel, bladder, and esophagus. While the esophagus improves periodically so i can tolerate some soft, non-pureed food, the bowel, bladder and legs have not seen any improvements over these 8 years. They say our bodies sort of go through a transition of sorts every 7 years. It's been 8 now so I'm assuming at least for me that I'll never be able to defecate, urinate, or swallow w/out assisted technology, meds, etc. On the other hand, b/c I have distal fiber neuropathy, that means it is at the end of the nerve and it has not progrossed--i.e. going further along the nerve path, which is a good sign. I'm interested in hearing what others have to say about this.

[navyblue]

Thanks for the reply, do you know what is causing your neuropathy?

[htberg]

Interesting question. I have no idea and no doctors ever told me and I never asked them--maybe I should? I always ask what is causing the dysautonomia and how do i prevent that from getting worse and they have no answers. Although I originally thought that the symptoms were the dysautonomia--and so wondered how to not make my bowel completely shut down or my throat completely not be able to have motility to swallow. I've only ever heard of diabetes causing neuropathy but i don't have diabetes (blood sugar is on the low side) and no one in my family does either. DO you know what is causing yours?

[ramakentesh]

The view now days from some of the researchers is that small fiber neuropathy might be a manifestation rather than cause of POTS. That being said SFN patients tend to be dizzy patients but some have hyper presentations. I have mild SFN and a fluctuating course of relapses and remissions. And i get insane itching

[TCP]

Although I had already got EDS 3 , then autonomic issues/chronic fatigue from 1984 after glandular fever, the worst of the POTS and nerve pain came on 8 years ago. Both were in tandem and very sudden with low BP, Tachycardia and burning neuropathic pain throughout my body came on over a period of days. I still take Gabapentin and Nortriptyline to help with pain, which is constant. To begin with the nerve pain overwhelmed me, but now the POTS symptoms are far worse, as I have gotten used to the former. I know with the blood pooling the pain gets worse as day progresses. Lying down eases it a bit.

I've yet to get a diagnosis of small fibre neuropathy, a punch biopsy, I believe is required and it is hard to get that done in the UK unless you have a referral. I know that SFN can progress and cause autonomic dysfunction and there is a link with both EDS and POTS.

I am hoping now that I am doing the fluids, salt, exercise thing that it may ease. I hope so.