Hi everyone. I have had MS for 30 years of which the last 6 have been blighted by a nerve pain which always comes on when I go to bed. It seems to affect the left side of my face and my left arm and hand. My neurologist has ruled out TN but says it is a painful neuralgia. I take one Tramadol a day but it doesn’t stop the nerve pain, which at times has me in tears. Any ideas how to stop this pain?
Sadly no, I’ve had nerve pain since day 1, 16yrs now, used to take Gabepentin, which at first worked, then sadly my body got used to it, now I take nothing and yes I could cry too, cheerfully chop my limbs off, its so bad, like you say, more so at night, mines either intense heat, or cold, I’ll watch this post with interest, just incase someone has tried something different.
Jean
This blog deals with TN, but might be of interest.
It was the worst pain I have ever had - by Gavin Giovannoni (substack.com)
Have a look at duloxetine. I was on citalopram and neurologist has changed me to duloxetine because it also helps with nerve pain.
I have the same symptoms, my neurologist prescribed Tegretol (Carbamazepine) I was waking up in agony in the wee hours, the medication stopped that and now I get a much better sleep. No drowsy side effects either. I really hope you find the answer, I know this pain is so debilitating.
Hi and thanks for your response re neuralgia to my face and arm. I’m now just on one tramadol per day, with two duloxetine and one amitryptolene. I am trying to come off prescribed drugs, so will wait and see if anyone comes up with the magical cure!
Thanks for your message. I have tried Carbemazepine and it did get rid of the nerve pain. Unfortunately, my mobility did suffer, so it forced a choice on me - mobility or pain? Right now, I’m concentrating on exercising to get my mobility more stable. But I’m tempted to try the carbemazepine again.
Thanks for the link to Gavin Giovannoni’s blog.
1 Like
Hi Molly. Yes I do take 2 duloxetine per day as well as 1 amitryptolene. I think they might help a bit