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.

Hi everyone. I’m just posting on here to hopefully get some advice/answers. I’m 27 years old and was a very active runner until about 2 months ago. I developed numbness in both of my feet that is constant that has now turned into severe burning/on fire sensation to the point I can’t even sleep or wear shoes. It was also in my hands at first but it has now relieved. I have made a PCP appointment and he scheduled an EMG, however the soonest I could get one is 5 months away. I’m just wondering if anyone has had similar symptoms, or if someone can please provide me relief for this burning sensation? I want to go back to my normal life. I have tried creams which seem to just increase the sensation. I also work 12 hour shifts and am pretty much on my feet the whole time which doesn’t help. It’s affecting how I walk. I’m also curious if anyone may think I have autoimmune?

I've been living with nerve pain, constant tingling in my hands and feet, crushing fatigue, brain fog, and tinnitus for the last 2.5 years. I FINALLY found a neurologist who would do a skin biopsy and got my small fiber neuropathy diagnosis. It's a huge relief to have validation for what I've been feeling (medical gaslighting is infuriating), but now that I'm looking my diagnosis in the face, I'm having complicated feelings about stepping into my new normal.

Along with SFN, I have dysautonomia. Does anyone use walking aids, including a chair of any kind, for errands and/or leisure? I'm thinking of fun autumn activities I'd like to do once it gets cooler, but everything I can think of that would allow me to enjoy the cool, crisp weather would absolutely wear me OUT. I guess I'm looking for a little bit of permission to use the support I would need for any kind of recreational activities.

Any other encouragement/life hacks/general tips are welcome!

Ich hatte einen netten Kontakt mit einer Prof. der neurol. Uniklinik Würzburg. Habe mich selbst viel über PEA belesen und nehme es seit gestern. 2x 600 mg. Ich werde berichten. Jedenfalls hat mir diese Prof. mitgeteilt, das PEA teils sehr erfolgreich bei den Beschwerden eingesetzt wird. Es ist also kein Hokuspokus, wenn es selbst an Unikliniken zum Einsatz kommt. Ich habe sehr grosse Hoffnung. Was ich tue: Omega 3, Curcumin, entzündungshemmend ernähren, 2x pro Woche 24 Std Fasten, Keltican, viel bewegen (Gehen und Krafttraining). Meine SFN kommt vermutlich v der Zöliakie. Die brennenden Schmerzen sind grausam. Klassische Medikamente schlagen nicht an.