My brother has MS and his severe neuropathy which effects him from the waist down to his feet. He has active lesions in his brain and spinal chord. It is a tragedy to see the pain he is in. He has been from doctor to doctor seeking relief. Neurotin and Lyrica not only didn't help and pu him into a stupor when his goal is to try to have a life and at least try to get some sound sleep for a few hours a night. He has also tried Baclyfin (sp?) and it made him incontinent, not to mention that it didn't lessen his pain. Now he is on Noritriptyline (sp?) which helps him get to sleep from around 10:00 am until 2:00am. He is in screaming pain, he cannot sit, walk, lie down or do anything for any amount of time. He is at his wits end. Finally we went to a pain clinic and the first thing doc told us was they don't prescribe opiates. But he did bother to press so hard on his spine where he has some disc problems that three weeks later he still has serious pain. Finally that doctor told him to go to his PCP and get some methadone (small dose). Doctor gave him a lecture and told him to buck up. He has patients on MS who are bed bound and on Lyrica and he will just have to deal with it. But HeCAN'T! You cannot imagine how much pain he is in. He cannot move much, he cries all the time, he crawls up the stairs. But when he recently had dental surgery, the dentist prescribed some Tylox and it was like night and day. It certainly didn't take away all the pain, BUt it was the first time in 18 months I saw him act anything like a human. He was walking and had energy. Do doctors just not prescribe any opioids for MS patients? If they do, what is the trick to get them? If ever anyone needed them he does. But I don't know how to help him anymore than go with him to the docs and testify that he is in agony. It is apparent he is in agony but because he can shuffle, they assume his is OK or something. Can Anyone help. PLEASE PLEASE. I cry every night and I cannot sleep either. I just sit with him and watch him smoke cigarettes and drink coffee and walk around or crawl depending. He also just started taking REbif so after he takes that, his whole body aches the next day. Miranda Arden

Miranda,
The thing is I can believe how much pain he is in and many people here can as well. After 9 years of ever worsening pain that did not respond to Neurontin, Zanaflex, Oxycontin, Percocet, Valium, Codeine...I saw a neurosurgoen who ordered new MRIs of the spine and found that there was so much degeneration of a couple of vertebrae and discs that were all but gone due to the deterioration that I opted for a spinal fusion. I woke from the surgery free of that intense nerve pain for the first time in years and it has never returned in the 6 years since the surgery.

The pain in my hip and leg is getting to the point of numbness and tingling and I am grateful it has ramped down to that level. I was facing fusion of the lower back for this. The pain in arm and leg , although aggrivated by MS were caused by spinal stenosis and disc herniation compressing nerves. It was not caused by the MS.

Methadone may be the only reasonable option for him to get the pain managed at this point but I would recommend that he see a neurosurgeon to get another opinion. Spinal stenosis often requires surgical intervention or nerve blocks. (I am assuming he has tried such things as TENS units, PT, etc)

I hope he finds some relief soon as pain of the intensity you describe can cause severe depression and really sap the quality of life on a day to day basis.

Dear Cherie--Thank you for your sympathetic, thoughtful, and informative reply. It is just great to make contact with someone who understands. I hope things go well for you.

Miranda

I think the first line of business would be to get whatever is going on with his back figured out and taken care of, if possible.

The pain clinic should have done something besides tell him about their policy of not prescribing opiates. While opiates do work for many, and are good for short term, the addiction problem is definitely on their minds 24/7. Patients usually have to sign papers that they will NOT seek other treatment (ie: drug shopping) while under the care of the pain clinic. There are other drugs out there for neuropathy. Prialt comes to mind. It is infused into the spine via Medtronic pump, it takes some time to get the dosage right but it isn't an opiate. There are also good results coming from injections of Botox to the offending nerves. Is there another pain clinic he can be seen at?

One thing he will have to do is NOT GIVE UP. He may think they are taking too long, but he has to remember that nerve pain is a trial and error sort of science. He may have to endure it while they figure out what works and what doesn't. Everyone is different and it takes time.

Good luck to him. You are a good sister and he is lucky to have you on his side.

Dear Riverwild--Thank you for your validation and support. I deeply appreciate your taking the time to reply. Your cheerleading "Never give up" is what my brother especially needed. I NEVER give up. Sometimes, maybe I should, but...Anyway, your kind words and information is of great help. It is wonderful to feel there is someone out there who is listening. It brings tears to my eyes. Miranda

I had terrible pain for two years before I started on Low Dose Naltrexone. That is a non-mainstream, compounded drug that some of us use off-label for MS. Unfortunatley it is not recommended with the interferons (Rebif, Avonex, Betaseron), but it can be combined with Copaxone (the other alternative injectible).

Many people report the flu-like feelings from the interferons in the beginning. I haven't been on them, but if you search around the boards, you will find good advice about how long the adjustment period is, etc. Copaxone doesn't seem to have that same flu-like effect on most people, but ultimately the trick is finding the right drug that works to help manage the disease. You probably won't know if Rebif is "the one" for several months yet though.

Before I started on LDN, I tried antidepressants for the severe fatigue I had. I wasn't depressed, but they thought A/D's were worth a try. They didn't help with the fatigue, but strangely, they did help somewhat with the pain.

How does your brother describe the pain; burning, electric shocks, stiffness, charlie horses . . . ?

Cherie

Thanks for your reply. Unfortunately he cannot afford the copaxone copay or his insurance doesn't cover it. So he is on rebif. His pain is stabbing, burning, pressure--like a load of hot knives being stabbed into him.

Hi Miranda!

I don't have any other suggestions for your brother's pain, but wanted to say hello and what a great, supportive sister you are! My MS is at the secondary progressive stage and I've had constant pain since 1995 which is attributed to Fibromyalgia. However, I wonder if more of it isn't due to MS than the doctors around here think.

Seems like I've tried everything without much success except over-the-counter Aleve. It seems to work as good as anything. Neuropathy is horrible and I sure hope he finds something soon to alleviate that pain. I'll be watching this thread too since I know first hand about the depression, isolation, etc., that develops from constant pain.

I hope this post doesn't discourage you, but maybe just knowing there are others of us "out there" dealing with this pain 24/7 might be helpful. Obviously we're not all the same, so what works for one may not work for another, but you've received some good suggestions!

Take care and all the best to both of you.