Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
Hi all. I used to frequent this group quite a while back and received help (and provided some when I could). Well I am in need of serious help.
Background, I was stubborn and quit my Rebif injections because I felt better without it. Lesson learned. One and half years later, I had MRI and have 13 new lesions in my brain. Over 7 are active. I had no symptoms. After finding this out I went back on the Rebif and 3 months later I am hit with incredible arm pain. They have exhaused every muscular skelital potential cause and have determined that it is pain from MS (nerve pain). This pain never goes away. When I eat, (try to) sleep, work, whatever I do this very bad pain is there. It keeps me up at night.
So here is what my neuro has done (I like him very much and feel he is trying to help however he can). Started me on Nortriptylene (small dose) and it seemed to magically make the pain go away for two months. Well now it is back and it is mad (worse). So we tried upping the Nortriptylene without any success. So he weened me off the nortriptylene and started me on Carbamezapine. The pain has been so bad that a trip to the emergency room was all I could do to get relief. They gave me a shot of morphine. The pain was still there but I didn't care. :)... They gave me a perscription for percaset and valium and I used this to sleep only. I endured the pain during the day and was able to get some much needed sleep at night with the percaset and valium.
Those perscriptions are out and now my sleep is only when my body is so sleepy it can sleep through the pain.
I am at my wits end with this pain, and would like to hear some other experiences. what did you do to sleep? To deal with pain that just doesn't go away no matter what position you put you body into?
Jeff
Background, I was stubborn and quit my Rebif injections because I felt better without it. Lesson learned. One and half years later, I had MRI and have 13 new lesions in my brain. Over 7 are active. I had no symptoms. After finding this out I went back on the Rebif and 3 months later I am hit with incredible arm pain. They have exhaused every muscular skelital potential cause and have determined that it is pain from MS (nerve pain). This pain never goes away. When I eat, (try to) sleep, work, whatever I do this very bad pain is there. It keeps me up at night.
So here is what my neuro has done (I like him very much and feel he is trying to help however he can). Started me on Nortriptylene (small dose) and it seemed to magically make the pain go away for two months. Well now it is back and it is mad (worse). So we tried upping the Nortriptylene without any success. So he weened me off the nortriptylene and started me on Carbamezapine. The pain has been so bad that a trip to the emergency room was all I could do to get relief. They gave me a shot of morphine. The pain was still there but I didn't care. :)... They gave me a perscription for percaset and valium and I used this to sleep only. I endured the pain during the day and was able to get some much needed sleep at night with the percaset and valium.
Those perscriptions are out and now my sleep is only when my body is so sleepy it can sleep through the pain.
I am at my wits end with this pain, and would like to hear some other experiences. what did you do to sleep? To deal with pain that just doesn't go away no matter what position you put you body into?
Jeff
A friend of mine tried & tried to get me to eat gluten-free. When I finally did, I was amazed/shocked. After only 3 days I was 100% pain free.
I often forgot to change my patch because I had no pain. In Sept my neurologist significantly lowered the my pain patch. (U can't just stop w/out side effects.) At my next appt. My script will be discontinued.
I wish u the best. There isn't much worse than nerve pain.