I know I am probably in the wrong site BUT I cannot get or find any info on the MS site. Hope someone here will know something because the problem here is horrific chronic intractable pain brought on apparently by neuropathy and L45 disc+ some arthritis in the spine. Even though I also am a chronic pain patient, my brother has been horribly suffering for 18 months. So far he has been on Neurontin, Lyrica, Baclafen, and Nortriptyline. The pain is worse at night and he gets no deep sleep. The Nortiptyline hasn't helped with pain but he at least gets about 4 hours of sleep from it. Doctors have told him to just take the Lyrica and Baclafen desipite bad side effects from both. Pain doc recommended Methodone but PCP refused to write it and told him to get a new doctor. I cannot bear to watch my brother crawl on the floor, crying, staying up all night desperate. From my perspective, I think they should give him some kind of opiates and I even read an article that studies show not only do they relieve MS symptoms but also show to slow down the progression of the disease. Is everyone against treating MS pain with opiates? What if what works for others doesn't work for him AND makes him so groggy, he doesn't even know what is going on, or he becomes incontinent from baclafen? Does anyone know if ANY doctor ever prescribes opiates for MS patients or has my brother just seen a bunch of idiots? Please help, or TRY if you can. My own pain is getting worse just watching him from the stress (which really does a number on all the different things wrong with me--but that is not as important right now--more on me later?)
Miranda

Methadone is a fine choice of pain killer. Your PCP is a moron. I am guessing the pain doc doesn't write scripts. Maybe they need to have a chat as to why the methadone would be a wise choice.

I am so sorry to hear your brother is in chronic pain I understand I have Poly Neuropathy! I have been prescribed Oxecodone IR in the past and it was a wonderdrug for me! I went from sleeping 6 hrs every 3 days to a solid 4 hrs a night and what a blessing that was! I want to caution you on the methodone and its dangers. My husband just lost his 26 year old Niece to methodone because she accidently took 2 doses! I know Methodone helps allot of people and I am not saying it is a bad drug, but it is scarey since we lost someone close to it. I have found each doctor has their own policies on pain meds,but don't give up!! I changed doctors and when I did it was not that new doctors policy to prescribe the pain meds I had been on that worked for me.

You could also take him to a pain clinic. Well I hope the best for you and your brother

Now know anything about MS, but I did research on the treatment. The primary focus seems to be on treatments that help in preventing the disease from getting worse and might put them in remission. These drugs are very toxic, but could be very helpful. They don't treat the pain but the disease.


That PCP was very wrong to rule out opiates. They don't mention opiates with MS on any website that I saw, but I haven't heard that it doesn't work/ Unfortunately some people believe that opiates are useless to treat muscle pain or nerve pain or headache pain and you do hear that type of thing. Opiates work on all pain although perhaps not all aspects of all pain. They work best sometimes in conjunction with other medications, like the ones he is already on that are not working by themselves.

Generally there is a stages to treating pain and you start out with other drugs and physical therapy and work your way up to short acting opiates and gradually to stronger opiates like methadone in combination with other drugs.

The methadone raised a red flag with me so I'm not surprised your brother's PCP didn't prescribe it. I think that was overkill and would knock him on this butt. The next step is opiates although usually a short acting opiate and perhaps gradually working your way up to something long-acting and perhaps methadone. Methadone is a good painkiller, but it's not usually a starter opiate.


This PCP needs to be aware just how bad your brothers pain is and I think you spoke so movingly about it, that you would be a very effective advocate if you went with him to his appointment. If you said just what you said I think the doctor understand it's time to go the next stage in treating his pain and might reconsider his attitude about opiates. If not you have to get it to somebody else.


Sorry if this didn't come out very well as I use dictation software and it just doesn't say what I want it to say. I try to edit it but I may have made it worse.

i have arthritis of spine,spial disease called ankolsen sponditis,fibromyalgia,and list goes on,,i have been on 10 mg perc for this for 12 years now my tolerance built up and cant sleep,in 3times pain,,even resulted to usen lorcete and perc,,i had to oreder lorcet from online dr,,email me if allowed same as my username but @msn.com

I wonder if your brother's primary MD is twisting the fact that some neuro pain doesn't respond well to opiods into opiods never work for neuro pain.......which many on here can attest to is obviously false ! Maybe that doc is just anti opiods in general for chronic pain patients. My old primary was like that, which is why he's no longer my primary. Some docs just skipped class on the day they taught "alleviate pain and suffering" in medical school. I understand they can be afraid of drug seekers, etc, but admit him to the hospital so they can see that he's not using the med to get high. It really tee's me off that Rush Limbagh can get all of the oxycodone he wants, but people who really need it and are desperately need it because of real pain can't get help.

Okay.....end rant

Why won't his pain doc write for something ? If his clinic doesn't do maintanance meds, could he refer your brother to a primary care doc who is more familiar with the care of chronic pain patients ?

My best wishes for the both of you

MS frequently causes Central Pain Syndrome, which is a condition that does not respond to opiates. I was recently dx'd w/ this after suffering w/ RSD in both legs since 2001. This pain overwhelms my RSD pain & none of my opiate pain meds, including methadone, relieves the pain. A recent trip to the ER & 5mg's of dilaudid did absolutely nothing. The regimen of meds your brother is one similar to ones recommended by many but even the NIH admits there is no treatment. I'm sorry. I wish you & your brother the best of luck. My prayers are w/ both of you.
Gramps

A friend's wife has MS and has tried their meds to no avail. Cannabis has helped her better live with the neuropain. Many positive studies regarding cannabis/nerve pain. Might be worth a try.

Peace & Health,
Kevin

I have been on just about every pain med known to humanity, most were useless and had some really nasty side-effects. The last one I was on was Topamax, which sort of worked but left me mentally in an Alzheimers condition! My family doctor guggested cannabis (yes, marijuana): did that ever work well!! I am now on Sativex (a cannabis extract, not synthetic) and it works, too. It is approved in Canada especially for MS.

Things will get better, I hope.
Pandora

I have been dealing with chronic nerve pain for decades; been on just about every drug known to humankind (last one was Topamax, which sort of worked but left me brain-dead). My doctor told me I should try marijuana: she got me on medical cannabis, and did it ever work! My brain functions again, I'm getting some actual sleep, no side effects, pain greatly reduced. Have now switched to Sativex (cannabis extract, not synthetic) which is approved in Canada primarily for MS.
I wish you well,
Pandora