So I've now met or communicated with my neurologist and rheumatologist as well as my physical therapist. All seem to be in agreement that SjS is causing issues with my nerves/neuropathy (though some issues are due to nerve impingement from osteoarthritis in my neck and lower lumbar area).
I'm working on upping my Gabapentin, even taking an extra 100 mg a day has helped (at 300 mg and need to get up to an an additional 300 mg for a total of 600 mg). I also now have a series of exercises to strengthen my core which helps, but the most relief has come from nerve release PT that they have been doing on my legs and feet (which has been like heaven while the affect lasts).
Everyone has also said that this is the best they can do for me, order PT and meds. I don't know if this will progress or not and no one can tell me. This disease is getting on my nerves, literally!
I take 600 mg of gabapentin every morning, noon and night. I feel like ants are biting everywhere if I don't. I never heard of excercises for that stuff. Interesting. I'll have to ask my dr. about that.
I am curious about the nerve release on feet etc? Can you describe what technique they use? When I get into bad flare, like today unfortunately, it sets off pain in feet (along with teeth, spine and eyes)......wondering if something like tht would help. I am going to consult a PT again next week to see if we can sneak in sideways, without flaring me up too much, some strengthening stuff because the hypermobility in my neck is getting worse again....I am not as active as used to be, I still take frequent walks but not as far or long.....just not able to.