Please Help me Help My Brother Who Is in PAIN
 

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.

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 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

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.

Dear Judy--How kind of you to take the time to write such a supportive letter. One question: when you say you tried everything, what did you try? My brother takes TONS of Aleve but it really doesn't do much, unfortunately. I too deal with horrible pain. I am not hip to all the medical acronyms for problems that most folks who post here are but I have 4 different problems, each of which causes horrific pain. Fibromyalgia is one. Since I don't know the official names of the others it would take too long to explain. But I know first hand what my brother is going through and it kills me that I cannot help him. I think perhaps you ought to press for more tests or see a differrent doctor. My pain kept spreading and getting worse and no fewer than 7 different doctors chalked it up to a long-standing spinal problem (failed back syndrome) and ignored TONS of weird symptoms. Turns out they allowed a well differentiated lipsarcoma to grow to the size of two large whole summer water melons that went through my spine, down my buttock and leg and through the pelvic bone to fill the pelvis. They literally had to filet me front and back to get it all out. The tumor was only found when my doctor retired and I saw a new doc. So not to scare you but doctors get really comfortable with a diagnosis and WON'T see what is right in front of them. It never occurred to me that more might be going on with my brother. I am going to press for more tests and attention to his spinal problem. Bless you for you beautiful post. Once again, it brings tears to my eyes that people who don't even know us care more than the doctors we see who SHOULD care. I hope you find relief somehow. Hope to chat with you more. Miranda

Hi back to you Miranda! Yes, I find it very comforting coming here since everyone knows what it's like having MS. No matter how much we try to explain to our friends, family -- and doctors -- they just don't "get it". And Fibromyalgia....that's even worse! At least some doctors are beginning to believe that it's not "all in our heads"!

I've tried some of the narcotics like oxycontin, and others that I can't remember the names of, lol, Neurontin, Elavil. Had the trigger point injections but they hurt so much I almost threw up and passed out from the pain. Needless to say I didn't go back there again! Tried some of the NSAIDS. Have you gone to the fibromyalgia board here? Some people have good results with Lyrica, but my GP said he doesn't like that drug. It can have nasty side effects. Does your brother have problems with spasms? They really interfere with sleeping -- my legs just stiffen out too much and then I get them in my spine, which majorly hurt!!

Went to a pain clinic a few years ago, but they just had the same suggestions I'd already tried. Actually they mentioned acupuncture, that's why I started the thread here to see if anyone had tried it. Some people have said it helps the bladder issues too.

May I ask how old you two are? I'm a grandma of six. Had three kids of my own but have been divorced since 1990, the same year I was diagnosed with MS. No stress there!! I'm 63 for another couple weeks -- keep wondering how that happened????

My goodness -- that sounds like a horrible surgery you had! Guess you know how a fish feels. :( All that growing inside you and nobody noticed!!! You're right though, once you get a "label" every little thing gets blamed on that and many times they don't look past it. We really have to be our own advocates and keep speaking up. That's difficult for me since I've always been more on the quiet side, but I've learned it's true, "the squeaky wheel gets the oil".

Is your brother still mobile? Can't remember if you told us that before. This year I've had to stop driving since my legs are so stiff, can't get them in the car. When I go outside via the ramp I had built in the garage, I give my car a "pat" and hope maybe someday. I do live alone with the help of a couple friends who come one afternoon a week and more if I need something like meds, groceries, etc. Two of my married kids live 1-1/2 hour away and have their own families and the third lives in Ohio.

I've been getting IV steroids two days, every two months just for a little boost. It's hard on the bones, but right now it seems the lesser of the two evils. Have to use Decadron since I'm allergic to Solumedrol which is the usual. Also had bad reactions to the MS injectables, Betaseron, Avonex, Novantrone.

Whew, this turned into a book. If you want to PM me, feel free. It's good "talking" with you. Both of you take care.