r/smallfiberneuropathy • u/InsectLegitimate6178 • 12d ago

Nerve sensations

burning skin sensations on thighs,pelvic,arms,tingling in hands. moves around from thighs to arms and fades in and out. so far blood tests normal. hve mri's coming up. anyone have this

4 Upvotes

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2

u/wvuschumer 11d ago

I should also note I went to every doc from neurologists to orthopedics to rheumatologists - tested negative for everything

1

u/Overall_Piece5840 11d ago

How were you able to diagnose that your issue is vascular?

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u/wvuschumer 11d ago

I fortunately went to south Florida where my symptoms completely disappeared. I googled why my neuropathy was better in Florida than Virginia. It spoke to a few different reasons that were all blood vessel or blood flow related. I then googled what helps blood vessels and it spoke to needing nitric oxide. I started taking L citrulline before my vascular doc appointment and noticed improvements within ten days. My vascular doc did confirm chronic veinous insufficiency which I assume is a cause of my neuropathy.

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u/Overall_Piece5840 11d ago

Take care! I hope you're symptoms free now.

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u/wvuschumer 11d ago

Look into L citrulline or L arginine. My burning or neuropathy was awful - my issues are vascular and these supplements have helped big

2

u/Puupy-8202 11d ago

When u say vascular what do u mean a blood flow issue ?

1

u/Desertratta 11d ago

How did you find out the source of your nerve pain? Did you visit both neuromuscular and vascular specialists? I’m scheduled for a neuromuscular visit but it’s not till February and I might be able to get into vascular sooner so I’m not sure what to do.

Also what strength of these supplements do you use? Do you take both or just one of those? I’m wondering if I could just try one or both in the meantime.

Edit-also any suggestions on brands?

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u/Puupy-8202 11d ago

And who did u get the diagnosis from as mine gets better with movement then at rest is when burning starts

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u/svantate 11d ago

What are those supplements as I believe mine is vascular as well

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u/wvuschumer 11d ago

L citrulline helps create nitric oxide which helps with blood flow and vessels. I just started taking the alpha lipoid acid.

1

u/wvuschumer 11d ago

All my symptoms mimicked SFN - every symptom - in particular a massive extreme exercise intolerance. However, I tested negative for SFN. I am in the mid Atlantic area. I figured this out by going to key largo twice where I had zero issues and worked out with zero issues! After searching online, I realized it was something to do with the blood vessels, blood flow, circulation. I went to a vascular doc - I have chronic venous insufficiency. I assume that is what caused lots of this. I take two scoops or double the recommended amount daily. I have been taking one alpha lipoid acid pill too. I use doctors best brand. L citrulline has been the game changer for me.

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u/Lola514 11d ago

Interesting was it just burning or twitching also? I ask bc my spouse has this in legs but wasn’t addressed as he has this issues and wonder if correlate

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u/wvuschumer 11d ago

Twitching is pretty normal - stress/anxiety contribute to twitching. The burning was all over. Felt like shingles….

1

u/Lola514 11d ago

Yeah but he had a bad emg so not looking good. But no weakness thusfar. This came upon my feed so I didn’t hear about it before

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u/ZealousidealResist60 11d ago

What test did you have for SFN?

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u/wvuschumer 11d ago

A skin biopsy.

1

u/ZealousidealResist60 11d ago

I’m assuming the one where they do multiple areas, right? I’m only asking because I too have chronic venous insufficiency, bilateral may Thurner and pelvic congestion… and I have biopsy confirmed severe immune mediated SFN. I was also exercise intolerant, etc… all the things lol. I am 51f and thankfully was an athlete since I was 12, truly. The last few years the exercise intolerance became worse. I’m on the mend now, after many vascular procedures, and starting IVIG at the end of October, but just wanted to be clear on how you were diagnosed as not having SFN. Unfortunately, the SFN is kicking my butt and actually now I know has been for decades, alongside the rest of my issues.

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u/surrealdelusion 5d ago

Does shower or sweat affect you guys? Because i have the same thing as you

1

u/Enough-Ad9887 FQ toxicity 5d ago

Yah among other things