I’ve seen a couple of historical chats about peripheral neuropathy from a decade ago. I’m almost pleased I didn’t read everything when I first joined this site because then, where would the surprise element be?
My rheumy says I’ve not got much sign of active disease atm, although that was before he saw significantly raised CRP and ESR rates in my blood tests this week. He does think I may have developed peripheral neuropathy mostly in hands and feet and I’ve been referred for nerve conduction tests.
Does anyone deal with this? Were the tests ok? Have they been prescribed anything that actually works to dampen the pain, which I can only describe as like the worst toothache with nice little lightning flashes for variety but inside my joints not my jaw (though I am getting occasional electric shocks through the right side of my teeth and face and have been for about a year now I think about it).
I can’t take NSAIDS because of the MTX (my liver does not like that mix at all) and paracetamol doesn’t even touch the sides, so I’m pretty much trying to learn to live well with pain. On a pain score I’d say when my gall bladder got blocked and my bowel went into spasm (whole different auto-immune issue!) that was a 10. This is like a 7 every day and paracetamol takes it down to about 5. Any ideas anyone?
Yes, I’ve definitely dealt with peripheral neuropathy. For me. It hit my feet, and it was just an awful burning. I was prescribed gabapentin and it took a little bit to work because I needed to get up to a high enough dose, but it definitely helped
I can’t tolerate gabapentin very well. Bad side effects. But I’ve been on Nortriptyline for about 5 years and it definitely got rid of the stabbing, searing pain in my toes that was just mind bending. I take 30 mg at night about an hour before bed.
By sheer coincidence I was just reading about Nortriptyline last night - thanks for this, another option to discuss with my rheumy. It’s good to know it can deal with the red hot needle stabs.
Have you tried Lyrica/pregabilin. It is a bit easier to tolerate. However, I could never tolerate the therapeutic 300mg a day for pain. I take 75mg twice a day as a mood stabilizer. I have since it came out. A caution, for me, after years of that dosage, I am physically addicted to it. If I miss the Lyrica for 24 hours I get very physically ill.