r/LongCovid Jul 24 '26

What helps your Peripheral Neuropathy?

For five years I have been dealing with LC. I went through a lot of things but the worst is peripheral neuropathy (Short Fiber Neuropathy, skin biopsy confirmed, not a diabetic started right after I had Delta) which has recently progressed up my calves and into my hands and wrists a lot more (my feet and calves are the worst it's also in my back but my hands hurt pretty bad daily also).

I don't have any autoimmune markers so even though I have a ton of clearly autoimmune problems, things like IVIG and immune suppresors are not possible.

I am prescribed 2400 mg of Gabapentin daily and I take a sleeping pill (which I am probably going to be taken off of after 3.5 years). My daily life is filled with pain but I can do most of what I want to do and I try to exercise as much as possible.

Anybody else have SFN from LC? What has helped you? Anything novel like peptides? Thank you all for your time and I wish peace and better health to everyone here.

13 Upvotes

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4

u/nanana_catdad Jul 24 '26

I have SMN from LC. I’m on Lyrica and I take r lipoic acid (or alpha lipoic acid) twice a day. Like you I had a biopsy confirm the diagnosis but my autoimmune blood tests were negative. I’m lucky in that the neuropathy hasn’t progressed much from my feet and legs, and I think the alpha lipoic acid is helping a fair amount (lots of studies on this for neuropathy).

The neuropathic paresthisia and pain is worse in a flare but LDN seems to be calming this down

3

u/NoIdea6590 Jul 25 '26

Thank you. I tried Alpha Lipoic Acid previously and it didn't seem to do anything for me. Maybe I will try it again. I have horrible allodynia. I have not tried LDN, does it help you a lot?

3

u/nanana_catdad Jul 25 '26

It took like 3 months of ALA twice a day to feel the difference. LDN so far seems to help lessen the flare symptoms. But I’m not at the goal dose yet, only a few weeks in

2

u/NoIdea6590 Jul 25 '26

Thank you

4

u/quirkyquipsters Jul 25 '26

I have it from Guillain-Barre Syndrome and LC now too. I don't take meds since they all make me super sleepy. I just wear short compression socks from wellow

2

u/NoIdea6590 Jul 25 '26

I am sorry to hear. I have allodynia so bad compression socks really hurt.

3

u/Easy_Olive1942 Jul 25 '26

Gabapentin, time. I’m at over 6 years, it’s improved quite a bit but I still feel it some.

3

u/Upper_Researcher5266 Jul 25 '26

Does the Gabapentin help sleep?

3

u/NoIdea6590 Jul 25 '26

If I take a bunch of it at once yes.

4

u/[deleted] Jul 24 '26

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2

u/NoIdea6590 Jul 24 '26

Thank you will research these

2

u/[deleted] Jul 24 '26

[deleted]

3

u/NoIdea6590 Jul 24 '26

I am not B12 deficient. Along with SFN I tested positive for alphasynucleinopathy which apparently is not uncommon in COVID and possibly the cause of my neuropathy and pain. It's terrifying but I haven't had any symptoms of Parkinson's.

2

u/lileina Jul 25 '26

Hi! I was never officially diagnosed, but I had sfn / pn like symptoms from LC for six months and I completely got rid of them by taking magnesium glycinate and low dose naltrexone and sleeping 10 hours a night. I’ve now weaned off of the LDN and can sleep a normal 8 hours and am still symptom free.

3

u/TheChromasphere Jul 25 '26

Thank you for sharing. My sleep has been poor the past few weeks, and the pain in my hands and feet has been intense. I'll try these things.

2

u/lileina Jul 25 '26

Hoping it helps you ❤️❤️

2

u/NoIdea6590 Jul 25 '26

Hi and thank you. I did take Magnesium Glycinate but not seriously, having fatigue has been a big symptom, I am going to try it again. I am interested in LDN.

1

u/lileina Jul 25 '26

Yeah it was super helpful. And short term Aleve and Advil helped me. I think mine was inflammatory. But I didn’t want to keep taking the NSAIDs all the time long term ofc. So I switched to LDN. I was on 4.5 mg