small fiber neuropathy - how to handle beyond just meds
Near the beginning of last year I woke up one day - after a week of what I thought were just general antibiotic side effects - to my entire body feeling like I was burning, literally overnight. Only three areas didn't hurt: my head, my hands, and my feet. I was twenty-one years old and terrified.
I'd always been able to handle a great deal of pain, but this was beyond me. I was admitted into the hospital for a week while they ran test after test, everything coming up negative. All they knew was that I was in such severe pain that the morphine that they gave me only brought my pain down from a ten to an eight, that whatever it was had to be in my nervous system, and that they couldn't help me.
After that, I began to see a neurologist and a pain specialist. Neither had ever seen a case like mine, where I hurt so much and over such a large area. Even a light touch hurt whether it was on my right shoulder or my left calf. They gave me over a half a dozen meds to take every day, some to numb my nerves and extremely strong pain killers to do the rest. They hoped that the pain would just resolved itself within a few months (six months, tops they said) and then I'd be able to get back to my life.
It didn't get better.
Six months more past before I'd finally gotten a diagnosis: small fiber neuropathy. It was such a relief to have a diagnosis, to no longer be standing in the darkness, but in truth it changed nothing. I still couldn't go back to school (I'd been in my fourth year of college and had less than twenty hours left). I still had to stay with my parents because both the pain and the meds kept me from being able to take care of myself. It didn't even change what meds I needed to take. All it told me was my chances to get better (one third that I will, one third that I won't, and one third that I will get better and then get worse again).
I'm still sick, a year and a half later. I'm on the same meds, plus a number of supplements, which help, but only to a point. I can only barely remember what it was like to be hugged without it hurting.
This is the first place I've seen that has anyone in it that also has small fiber neuropathy and my question is - what do you to handle it better, beyond pills? Whenever I go outside the sunlight feels like its burning me, the heat being much worse than touch. What are your tricks for travel, or for other things? Or, if you don't have neuropathy, what tricks can you think of?
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