u/kniki217

It was working great for 7 months then just stopped working. Even tried taking a break then tried upping the dosage. Nothing.

I have an appointment in a few days. I have taken all of the medications and none are working. Not holding my breath. Not looking for medications so much as alternative treatments like nerve blocks and SCS.

I used to take steroids for my flare ups and they worked great but the last 2 times it made the pain way worse which makes no sense. I can see it no longer working but to make it worse doesn't make sense.

I have small fiber neuropathy that started during a covid infection 2 years ago. My burning is 90% in my arms with a little bit on my back. I was oddly 7 months almost free of pain thanks to lidocaine injections I got for my skin biopsy. I was in a flare and it took all my pain away and I expected my pain to come back when the lidocaine wore off but it didn't. I just attributed it to the low dose naltrexone I had started taking finally kicking in. Then in February I got sick and had a pretty bad flare up. I would normally take steroids but when I took the steroids it made everything worse (wtf). 2 weeks later everything calmed down a little bit but I never completely got out of the flare up. Fast forward to 2 weeks ago I tried steroids again thinking it had to be a fluke. Nope. Made everything worse again!

I have tried every medication. Gabapentin, carbamazapine, amitriptyline, Topiramate, Cymbalta, baclofen, low dose naltrexone. All the vitamins and natural meds too. Vitamin b12, thiamine, ALA, Acetyl-L-Carnitine. I tried the MCAS method of taking an H1 blocker and an H2 blocker. My neurologist says and I quote "you have tried all of the medications for nerve pain. There is nothing else I can do for you" again wtf. How do you just say that to someone. I have an appointment with a 2nd neuromuscular neurologist in July because the first was no help and tried to tell me I have amyloidosis which I didnt and he got mad when I told him it was going to be negative and he just talked over me and told me my digestive dysautonomia was from diabetes even though I'm not a diabetic and that small fiber neuropathy doesn't cause that AGAIN WTF. I'm not holding out much hope for this appointment and the pain just keeps getting worse. Any advice? Any clinical trials? Any medications I haven't tried? Any non-medication treatments? Don't say weed. It doesn't help me. Tried that too! Sorry if there are typos. I'm just exhausted 😩

I have been diagnosed with sfn. I had a positive QSART test but my biopsy was negative. I did have changes in white matter on my MRI that I had for something unrelated that wasnt there on an MRI from 2 years previously. I'm starting to think I might have been misdiagnosed and I have an appointment with a neuromuscular neurologist in July and I might have a theory I want to bring up to him regarding these changes in white matter. I was just curious if anyone else has had the same symptoms and had an mri with changes in white matter.

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