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
Your arm sounds like my legs, I take 2700mg daily of neurontin, 3 80mg oxycontin daily and 2 .25mg of Xanax and 1 10mg Ambien at bedtime along with 1 10mg of Baclofen at bedtime. I also take a Baclofen when I get up and try not to take any during the day. The bedtime cocktail is usually good for 5-6 hours of sleep and there are still times when I wake after 5 hours I'll take a half an Ambien and another Xanax but try to skip that one when I can. Myself I'm struggleing with why there is so much pain for a CNS problem but your not alone and many people say a pain management specialist is the best way to go. I wish you relief soon
Take Care
Dave
Morphine, oxy, neurontin, injections, infusions--tried it all it all sucked and/or was not a long term solution bc of side effects and organ damage.
Cannabis. Screw what people say just try it and have a good night's sleep for once!
Sympathies to you and take care!
Hope yours leave soon.
Alma
u need some relief!! it took rest and real strong muscle relaxers 4 three days- it went from my back to my lung a spasum- was hard to breath!! but 4 me cannibus makes me deathly sick- so or believe me i would!! but u havr to do what u can- 4 relief!! hugs!!!
The marijuana recommendations were unexpected and I don't really know how to pursue that option as it is illegal in Minnesota. Don't think my doctor is going to follow that request up.
I am hoping this pain is a "bout" and will just go away, but the pain is driving me almost psychotic. Been here for 3 weeks. The carbamezapine makes me emotional, and you add the Rebif 3 times a week and it just makes the pain and the emotion exaggerated. The nightime cocktail of percaset and valium worked to help me sleep, but my doctor seems unwilling to continue it. Dammit...
Alma
Just a thought; I hope something helps.
I had the same pain in my ribs (this is what lead to my diagnosis) and i would take 4 to 5 narcotic pain killers and it wouldn't even touch the pain, but the cymbalta is one pill a day and i don't have any pain now.
Cathy
I have also been on baclofen for cramps/spasms/pain & now up to 4 x 25gr (?) a day & that helps, next step would be pump which I don't want.
The other suggestion I would make is see if neuro will change you from rebif to one of the others as if n that much pain it can't be doing much too. I only say that as I found betaferon made me sick every time & didn't matter what I took (panadol/neurofin etc) none helped ease the symptoms, then changed to avonex & had same issues too if not worse skin reactions (I have sensitive skin due to excema so couldnt tolerate needles or pain patches which burnt my skin) but it doesn't hurt to try others as all they do is try to slow down the progression really.
I have gone on gilenya/fingolomoid tablets, 1 a day & been on them since December, finally getting some life back with less fatigue & no reactions to it. There is strong pretesting & follow up protocol (here) so feel happy with that. My neurologist (who I like & trust) is happy with me on it too.
Some people like tysabri & the infusion monthly (couldn't come at that as they can't even find my veins for 3 monthly blood tests).
As I said lots of options.
I am also on a mix of other tablets but I would see if you can try the patches when haven't had luck with tablets so far, otherwise it is more try & wean off etc of others.
I would be wary of too much prednisolone as it does have a lot of long term side effects. For instance I now can't walk on my "good" foot as I have got avascular necrosis which is basically a crumbling of the bones in foot due to prednisolone, friend has it in knees & they can't do anything to help her so she has to wear a knee brace & I have been in a cam boot since November & it is getting worse not better. I could end up losing big toe at least as it is already going black (again) due to poor blood circulation. That is just one of the long term issues. I have been on it off & on since in my teens (now 51) due to excema/asthma & then higher doses for ms. Certainly use it for flares. Now they say not more than 1 time a year for the 1000mg infusion x 2 days & careful on tablets (at least here in Australia).
Sorry to post so long but thats just from my experiences. There are a lot of tablets you can try if patches don't work. too. Don't give up & keep letting your neuro know how bad it is too.
Take care of yourself & let us know when you get help & what works for you as we all learn from each other too.
Hugs, Aussue
It turns out that upping my Nortriptelyene with the Carbamezapine seems to have lessoned the pain. Finally after 4 weeks. Now I only get feel a dull ache but fear at any time the intense pain may come back. But it seems to be curtailed to the point I can work and even do other activities again.
Do those of you with pain take rebif? Do you notice a worsing of the pain on injection days?
I used to think and say I have MS but it doesn't have me. But who am I joking. MS has me changing every aspect of my life. My job, home life, relationships, and even what I might be able to do with my free time. I have to commit so much time and energy to taking care of just me. I hate that. :(