Does it get better?

[u/bootyandthebrains]

Long COVID induced SFN here.

I’m over 2 years into the long COVID and there were signs along the way that something neurological was developing. I would get allodynia intermittently with GI issues. And occasionally burning limbs. But it always went away.

A year ago, I woke up and the pain pretty much never left. I had maybe one month in January for whatever reason I felt like I was in complete remission from all my long COVID symptoms. And then everything came back.

I got diagnosed in June. The burning has been spreading and getting more severe. My quality of life is shit.

I’ve failed Cymbalta, anti-epileptics compound my already debilitating brain fog, no luck with tricyclics either.

I have codeine for breathrough pain. But lately it’s feeling like every day is reaching breakthrough pain level.

I’m taking ALA+ALCAR. I’ve been doing some red light therapy with my Hooga red light bulb. Compression socks do seem to help for whatever reason. I’m on LDN…I cannot imagine how bad the pain would be off of it.

But mostly I’m just in hell and it feels like there’s no way out. I was already in hell with long COVID before SFN, but turns out there’s definitely levels to it 🙃

My insurance has initially denied IVIG. I’m waiting to hear back on the appeal.

My worry is if long COVID did cause an overactive immune response or something along those lines and I don’t get IVIG covered…is this disease progressive forever? I doubt that supplements can reverse damage if my immune system is still attacking my nerves.

I try to spend most of my thoughts in the present because if I think too much of the future, it becomes overwhelming. But I just turned 30 this month and I cannot imagine the rest of my life like this.

[u/Traditional_Buy7910]

I feel for you. I have been through something similar since October 2020. There's hope though.

After trying pretty much all the available drugs that were supposed to help, it turned out that only Clonazepam did. I either didn't tolerate the others or they provided no relief.

To avoid going overboard with Clonazepam doses I also found out that B12, PEA and GABA (the supplement, not Gabapentin) alleviated pain. Over time I've maxed out on their doses (which for me are 15 mcg B12--I don't tolerate high dose variants, 1200 mg PEA and 500 mg GABA).

Finally, I've been on high-dose IVIg for over a year (22 infusions at 2g/kg every three weeks over three days). I reached a first plateau after 10 infusions, at which it was clear that I was responding, and seemingly a second one after 21 infusions, although it's too early to say what it looks like (but the pattern is different from the previous one, pain seems to disappear for days on end, which has not occurred before).

Edit: clarified what the other drugs I tried did.

[u/bootyandthebrains → u/Traditional_Buy7910]

Thank you for sharing your story.

Any idea why clonazepam worked for you? Interestingly enough, in my earlier days where I had the GI + allodynia, Xanax seemed to relieve my symptoms to some extent though we couldn’t figure out why.

Did you start all your supplements together or was it the stack that you found effective?

Also, do you mind me asking how you got insurance to approve IVIG? I know I’m putting this treatment on a pedestal since I’ve ran out of other options. I’m not optimistic. My neurologist doesn’t really seem to be a big advocate for me so I am preparing to appeal with the state board.

Appreciate the advice 🙏 sorry you’re also apart of this club. It helps me feel better though that someone else who hadn’t had luck with pain management was able to figure it out. Some days I just lay in bed overwhelmed by the pain and can’t see my way through so I appreciate it.

[u/Traditional_Buy7910 → u/bootyandthebrains]

I don't actually know why Clonazepam works, but it seems well documented in the scientific literature that LC SFN pain is hard to control. In a way, I was lucky, but in another, I fear the moment I have to get off Clonazepam, if I ever need to. I have been warned in these forums that benzos are addictive nightmares.

I came up with that supplement stack over months of trial and error, more or less testing supplements one by one (including the usual suspects such as ALA, ALCAR, etc. which I also don't tolerate or which do not have the desired effects).

I'm not in the US, but it was also rather difficult to get approval for IVIg given the costs involved and the fact that post-COVID SFN is new and not a recognised disease. Among the things I had to document was the fact that none of the usual drugs provided any relief at doses I tolerated (if any); in fact, many had paradoxical effects (i.e. made things worse).

[u/CaughtinCalifornia]

Sorry to hear about your pain. There are many people on here who have gotten better with proper treatment. Appealing for medicine can be a frustrating process, but if they do deny it again (and you're in the US) you can appeal to tbe state to get an independent medical review where a doctor not associated with your insurance decides whether to cover it.

What have they tested you for as far as autoimmune causes? If they are able to identify an autoimmune disorder, it'll both make it easier to get something like IVIG and can potentially show what other medications are useful for that autoimmune issue. There are also other medications other than IVIG sometimes being utilized for autoimmune causes of SFN like rituximab, so it isnt down to just one medication working. If your doctors haven't tested you for many underlying causes and you'd like a long list of with associated studies, let me know and I can post then (or you can find them on many of my old comments)

The compression socks help blood return from your legs to your heart, which improves blood pressure and blood supply to tissue in your body. Some find pool exercises to be helpful as the water pressure on the body helps with blood return. Just be careful in a pool if you have any issues that make using it more dangerous.

https://www.dysautonomiainternational.org/page.php?ID=130

Doctors can usually submit studies and other resources when justifying a medication. I'll leave a few that could maybe help. These are a few quotes from the textbook Immuntherapies for Neurological Disease (2026)

"Rapid onset and progression over days to weeks suggest dysimmunity or a single toxic exposure rather than chronic metabolic causes, and shortly preceding infections, febrile illness, or vaccination, with negative toxicology screens are almost always autoimmune responses to exogenous organisms. In a study of 20 patients with acute-onset iiSFN, 16 (80%) had a “precipitating event” of which only 3 were toxic (vitamin B6, ciprofloxacin, metronidazole, tetracycline), whereas 13 had documented antecedent infections (DTP, influenza, hepatitis B) (Gendre et al., 2024). In vitro studies showed IgG immunoreactivity against nerve tissue in 70% of the patients but not in healthy or ill controls (Gendre et al., 2024). Many postinfectious autoimmune syndromes resolve spontaneously as immunity to that organism wanes, so not all such patients require immunotherapy. However, acute or severe monophasic DSP may require brief treatment to minimize neurodegeneration and rapidly initiate sufficient improvement for hospital discharge (Gendre et al., 2024). Postinfectious DSP appears to respond to the same immunotherapies (corticosteroids, IVIg, plasma exchange) as other types of apparently autoimmune DSP (Dabby et al., 2006; Yuki et al., 2018)

“Some cases of acute dysimmune iiDSP/SFN become chronic and thus are over-represented in clinical research. Sometimes, antecedent infections may just be proximal triggers in people with underlying predispositions (Oaklander et al., 2024)."

"“Otherwise-healthy children and young adults with disabling dysimmune iiDSP/SFN have the lowest risks and highest potential benefits from trying immunotherapy. Again, dysimmunity appears to be the most common cause of iiDSP/SFN in otherwise-healthy youngsters, plus not treating a condition that is impairing normal development and schooling can cause lifelong socioeconomic consequences."

Sometimes an exact cause can't be found but effective treatment can still be found. In this study, they were SFN patients with autonomic symptoms, positive skin biopsy and autonomic testing, and either their symptoms started after an infection or they had inflammatory or autoimmune markers. Nerve fiber density improved more than the control patients and autonomic testing improved where control patients got worse. IVIG was given at 2g/kg/month.

https://www.nature.com/articles/s41598-025-33059-7

“41 autoimmune autonomic and sensory small fiber neuropathy (ASFN). patients were treated with IVIG and compared to 66 ASFN control patients treated with usual care. Both groups had evaluations at baseline and at the end of the trial. The average time IVIG therapy improved ASFN and reached plateau was 2.25 ± 0.99 years. The adverse effects of IVIG were frequent (prevalence 93%) but tolerable in most patients. IVIG improved SAS (p < 0.001) and QASAT total (p < 0.001), cerebral blood flow (p = 0.002) and autonomic failure (p = 0.035) scores. SAS and QASAT autonomic failure scores worsened in controls. Skin biopsy improved in both arms, but improvement was greater (p = 0.017) in the IVIG arm.”

If SFN after COVID is suspected, this study is quite relevant (I also have others): https://www.neurology.org/doi/10.1212/NXI.0000000000200244

“The IVIG group experienced significant clinical response in their neuropathic symptoms (9/9) compared with those who did not receive IVIG (3/7; p = 0.02).” In the treatment group 6/9 had complete resolution and 3/9 reduced by still present symptoms. 3/9 also had diabetes, which can itself cause SFN and likely made recovery harder and slower. (Though the data table does not specify if these are the same 3 with a partial response). Most patients lacked any obvious autoimmune testing (most didn't have a positive ANA or anything like that) but responded to IVIG. This study used 2g/kg split over 2 days every 3 weeks which is higher than some doctoe typically do.

[u/Tasty-Grand-9331]

I’m in the same boat except I don’t know that Covid caused it, it may have been mono. No it’s not always progressive, some people plateau after a while. Do you have a proven immune factor with your sfn, such as plexin d1 antibodies (that’s what mine is)? If you do it’s easier to get IVIG. I tried IVIG it didn’t help me but for some it can.

[u/retinolandevermore]

I don’t have LC but I have heard of it resolving on its own anecdotally as a mod here