Underlying disease in small fiber neuropathy

[wolves2626]

Hi. I really wonder if fellow friends of the forum found their underlying conditions of sfn (small fiber neuropathy). Also , hopefully I wonder if they treated them succesfully.

I was diagnosed with sfn through a skin biopsy from my ankle after covid jab which I am not really sure the reason is the jab and after I got covid later than jabs it progressed into a bad situation. Therefore, I am not sure whether it is from jabs or covid or both.

My neurologist did many tests including immune patterns and evertythings seems fine (ana ena anca panel, serum immunification etc.) I was told it was idiopathic and I really did not like the term they call idiopathic becasue they could not find the reason. Idiopathic my ass (sorry for the language) Everything has a reason I am a scientist too. Only a slight increas in esr and wbc is seen and noted trivial.

To cut it short I have got other ailments long before the sfn, chronic prostatitis a resolved reactive arthririts. I am sharing my story here. my story
I think it is because of hidden infections or long covid may be. ( Cpn, yeast, virus)

I first tried gabapentin and lyrica and could not continue because of the undesired side effects like dyspnea and myoclonus. I did my homework before writing here read the threats ( search for the underlying conditions, treatmens) and mine is like the length dependent one which my symptoms are both in my arms and legs.

Now I was prescribed a short course low dose of of prednisone along with tramadol and amitiriptyline. I am on day 5 of prednisone 16 mg a day and other pills nothing changes. Burning still continues in my feet and also lately I have got breathing problems. In my country it is hard to get treatments or find doctors treat rare diseases like this. Also treatments must b e based on findings not experimental as far as I know . So other options like IVIG and plasma is not suitable.

I will be happy if someone with sfn and similar story of mine or different stories chime in and share their ideas and hopefully their stories too. How to progress from now on? high dose steroids or a consult with rheumatolgy (high esr ) stiff legs? Suupplements for sfn? Thanks everyone have an unpainfull week without burning and tingling.

 

[JES]

I've had this symptom for 15 years. Nothing on standard blood tests, nothing on EMG (as expected in SFN). The intensity has slightly reduced over the years thankfully or it could simply be that my brain got used to and dulled by this low-degree pain signal. I also experienced shortness of breath when the SFN symptoms were really bad. In my case it's all linked so the SFN gets worse when my other ME/CFS symptoms rev up.

Immune therapies are also not available in my country and pregabalin or antidepressants typically achieve all benefit at cost of other side effects. I have not found a cure, but here are a couple of cheap solutions I reckon have reduced the severity if nothing else:

- Omega 3 (fish or flaxseed oil)
- Magnesium (somehow malate form seems to work better than others for this)
- Selenium
- Various other antioxidant supplements except for vitamin C (I didn't tolerate high doses well though)
- Avoiding certain foods
- LDN

 

[wolves2626]

I've had this symptom for 15 years. Nothing on standard blood tests, nothing on EMG (as expected in SFN). The intensity has slightly reduced over the years thankfully or it could simply be that my brain got used to and dulled by this low-degree pain signal. I also experienced shortness of breath when the SFN symptoms were really bad. In my case it's all linked so the SFN gets worse when my other ME/CFS symptoms rev up.

Immune therapies are also not available in my country and pregabalin or antidepressants typically achieve all benefit at cost of other side effects. I have not found a cure, but here are a couple of cheap solutions I reckon have reduced the severity if nothing else:

- Omega 3 (fish or flaxseed oil)
- Magnesium (somehow malate form seems to work better than others for this)
- Selenium
- Various other antioxidant supplements except for vitamin C (I didn't tolerate high doses well though)
- Avoiding certain foods
- LDN

Thanks for the story and suggestions. My EMG was negative too . It was done at two different times. Only tests were left lumbar puncture and ace enzyme Which I read in a posted study here.
Also, I read one fellow friend reported benefit by using vitamin e for the sfn.
Finding ldn is also impossible here.