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I am so compassionate for what you are going through. I have extremely painful SFN in my feet which I feel has spread to 2 other areas as well as peripheral neuropathy and a bulging disc, osteoarthritis and a torn rotator cuff and 2 torn meniscus. Gabapentin caused severe edema so I can't do pregabalin and I can't do Lyrica. It's extremely debilitating especially at night trying to sleep with so much pain with the SFN. I take 50mg of CBD 4-5 times a day which can take the edge off somewhat. But when I lay down the small fiber neuropathy pain is a 10 out of a 10. On Amazon you can buy these socks that have gel inserts that you put in the freezer and basically I freeze my feet so I can fall asleep and I take 5mg of THC in the CBD to knock my myself out so I can fall asleep. If you try CBD you want the full entourage effect which includes CBG and especially CBN which is supposed to help you sleep. I usually wake up two times and have to take more because the pain for SFN is unbearable and then I need to get a different pair of the frozen socks. I never had any Neuropathy issues before taking the Covid vaccines and all the boosters recommended. The pharmacist said there are stories of the vaccines causing SFN. I didn't even prompt her with that theory of a relationship with SFN and the Moderna Covid vaccines but I have intuitively felt that that's what happened with me. I had extremely painful side effects from all the vaccines. I guess it doesn't much matter now. I just wish there was either a cure or a non-anti-anxiety pain relief cream or pill for SFN. My neurologist had mayo pharmacy compound creams for me but because of the gabapentin it made it worse because it created more edema. I guess they can compound with ketamine cream but I don't want to go on psychedelic journey. Has anyone tried that? I don't want to take anything that affects cognition. and finally there are so many supposed "miracle" cures on the Internet especially Instagram and Facebook. Has any of those worked for anyone?
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What you have to put up with amazes me. I am so grateful (and puzzeled) that I don't have pain. Just feet that don't know where they are. This loss of balance would be awkward for anyone but I'm a horse person. Without the ability to jump out of the way if I need to. Or the ability to lift my leg to swing over the back of a horse. I can't even pick up a horse's foot without losing my balance-in a big way!
Here is my non medical take on what is happening with some of us SFN people. Everyone's body makes antibodies. It is part of our survival skills, and we take advantege of this ability to make vaccines. However, some of us are too good at it and get started making antibodies against our own body, in this case our small nerve fibers. Which are treated like foreign invaders and so get distroyed. Only part of a complicated picture, of course. Now we have to fix this, and that is a bigger question, one the medical community is working on. Stay tuned....
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It’s a lock that this is from Covid. I didn’t get the vaccine but I got the delta variant and my neuropathy began after the flu portion of Covid ended. My taste was off and smell took forever to come Back and then these neuropathy symptoms came on. My doctor said it was from vitamin deficiencies but I fixed those immediately and my symptoms only got worse. It’s been years now and I’m way worse off now than before my diagnosis. I had never even heard of anyone with symptoms like this. I had a family member with diabetic neuropathy but his cleared up quickly and the pain he describes is nothing like this. It’s absolutely enraging.