My understanding from what I have read elsewhere is that it is helpful for some people who have Restless Leg Syndrome (RLS). Uncomfortable sensations in the legs and sometimes the arms. Not to be confused with night cramping in the legs, etc.

Foot cramps at night have returned. Perhaps my disease is getting worse. I'm taking magnesium to the point of diarrhea, and that in itself is a concern. The magnesium foot baths do not seem to help me, although I understand that they have helped others.


Needless to say, I am very tired, and have a pretty good amount of pain, and hand and foot disfunction. I wonder if I am kidding myself about being able to continue to work.

Dear nervous,

It's okay to be - just two days out from your diagnosis. And yes, it is a frightening prospect to realize one has something that might never go away and is painful to boot. Not to mention possibly acquiring the autonomic stuff, but I don't dwell on that - it's better that way. But have docs who check keep a sharp eye out.

I can tell you that SFN can improve. Mine has in the eight months since it was first diagnosed after starting with a bang overnight (woke up feeling as if I had a bad sunburn in northeast Ohio, not Florida). Felt really sick and looked it until about 3 months ago when the bad burning began to subside, but certain fabrics are still far to irritating to wear. Still have bits of burning here and there, now and then. Certain areas have always been spared -entire abdominal, rear end, back of thighs.

And the silver bullet usual meds such as neurontin and Lyrica caused terrible side effects. So I went cold turkey.

Until I found this website and the peripheral neuropathy subtopic. Don't know what I'd do without it. Recently started the supplements regimen as recommended here. MrsD is a motherlode of information about them.

I wish you the very best and hope that you discover whatever "triggers" you can, if not a definitive diagnosis, so you can avoid them. As time goes on, you will figure out what adjustments and accommodations are necessary to afford you a better level of comfort.

FYI: My primary care doc just ordered, at my request, an Asialo GM1 panel, a lab test for peripheral neuropathy. If anything in this panel shows positive, it would show what's wrong and maybe the way to a specific treatment. This test had never been ordered by the neuros. But there are also other lab tests specific to neuropathy. I've posted them here.

Take care and try not to be too worried.

Sheltiemom

S'mom, thanks for your thoughts and wishes. I've followed your recent posts and you seem brave and upbeat. I, unfortunately, am neither. Plus, like a lot of us, my disease is not the only thing I'm up against right now. In fact, I have about six major fires that I am trying to put out at the same time. This is difficult. My days grow shorter, thanks to the SFN.

I am not two days but more like two months out from my diagnosis. My diagnosing physician ran these "Immunology" tests:

IGG
IGA
IGM
CRP
RFQIGA
RFQ-IGG
RFQIGM
X-CCP.

All were negative. Still, he said that my SFN was caused by an immune deficiency disorder. Go figure.

I subsequently asked my internist to run some tests for nutrient deficiencies (e.g., B-12, B1, B6, D3), but he failed to do this. Apparently, I am in the hands of incompetent, or simply non-responsive, doctors.

P.S. Does anybody know whether, if I switch to Kaiser HMO, they will cover pre-existing conditions like SFN? I'm running out of money.

I can not suggest strongly enough that you immediately find a "Lyme-Literate" physician who will order a "Western Blot" Lyme test from "Igenex Labs".

With regard to pain medications, have you tried using either "Cymblata" or "Lyrica" properly over time to see their effect and their side effects?

"Lyme-Literate"? You think I have Lyme Disease?

This thread is over a year old but I just stumbled on it..the first thing I thought was Lyme Disease! Then I get to the end of the chat and see that someone else felt the same. Nervous, I hope you are feeling better and that this is a non issue but if not, Lyme MUST be considered.

Kate

I was diagnosed with Small Fiber Neuropathy. That was 15 months ago, and everything is consistent with that. Besides, I had no exposure to possible sources of Lyme Disease.

My foot cramps are much better. I attribute this to my increased magnesium intake.

Unfortunately, my "burning" and nerve pain is progressing, which is certainly a disturbing reality. But, as long as I do not become completely disabled, I'll find a way to get through.

Thanks for your concern, Kate.

I never thought I could have Lyme either. Never saw a tick bite(leading research indicates mosquito's can carry lyme too) or even a tick for that matter! I later found out through a specialized lab, that i DID in fact have lyme and several other infections carried by ticks. Lyme disease causes small fiber neuropathy and several other neurological conditions. I went undiagnosed(and therefore untreated) for several years which is what my neuro's say likley caused the SFN. I recently met a gentleman who had been suffering from neuropathy for 10 years. He went to a specialist in NYC who diagnosed him with Lyme. He was put on IV antibiotics for 9 months and is now off all pain meds(was on 5 different pills and pain patches). He had no CLUE he had Lyme. I don't mean to push this potential theory, it's just something that should be considered if looking for the underlying cause(specifically because of your early rash, a text book sign of Lyme). Food for thought...

Kate

Nervous, I just want to add here, just because testing came back negative for celiac disease (IGG, IGA) does not mean gluten is not your enemy. Being gluten intolerant can definitely cause immune deficiencies. Many doctors still do not make this connection. You should look into it. My neuropathy did not go away, but it did stop progressing once gluten free and on high doses of B12.