medications....

[jrzygrl4x4]

i feel like a guinea pig, i have been on neurontin, max dose, tramadol, elavil, pamelor, and lyrica. None of them helped with the all over pain of my legs and feet. I have everyday chronic pain, some days I can manage, but some days its so bad that i am in tears, and have to take perocet just to get by. My neurologist, doesn't believe in narcotics to treat pain, says the pain is not from the MS. Any ideas on what else anyone else has tried. Right now i am on topamax, which is 2 weeks in, losing weight, but don't see any change in pain control. Trazadone for sleep, but doesn't keep me asleep, lol.

Overall, was diagnosed in November with MS, and since I have been diagnosed its been nothing but problems, i had problems before i got the final word, but thought one of my 3 doctors would find a way to control it. i am on copaxone, been on it since November, not sure if working, things just seem to get worse... any advice from anyone, its soooo damn frustrating..

[PolarExpress]

I've yet to find a med that gets rid of pain & makes it possible for me to sleep like a normal human being. There may be one out there, I just don't know what it is yet...
Anyhoo...I mostly just wanted to bump this up in case someone actually has a helpful answer for you. Good luck!

[MrsBones]

Have you considered a pain management specialist? There are a bunch in NJ, though the closest I know of to you is in Voorhees. A bit of a drive, but it may be worth it.

Let me ask you a question or two...if your neuro is sure the pain isn't related to your MS, have they given you an answer as to what it's from? Or sent you to someone who could tell you? Is your neuro an MS specialist? What I'm wondering is if the doc is simply saying it's not MS because what they have tried isn't working and they don't know what else to do with you.

Unless they can pinpoint the source of the pain, IE nerve pain, spasticity,etc., it's going to be very difficult to treat it. I agree in a small degree with your neuro in regards to the narcotics, not as a blanket disagreement with narcotics (they have their place if managed properly), but in the fact that pain truly caused by MS (nerve and spastic kinda stuff) narcotics wouldn't really work as they don't treat the actual source of the pain.

I hope that someone can help you find some relief.

[MyGirlsMom]

Hello Jrzygrl4X4!

Unfortunately, I don't have any answers for you but wanted to lend support. This disease is frustrating and like you, since dx I just seem to have on going issues. I can't figure out if these sxs were there before and I was just able to push them away....OR...if my new body awareness since dx is magnifying any changes to my body....pain, tingling and numbness. Then sometimes I wonder if the Copaxone (been on just over a year) could be creating my sxs.

During the past several months I have had significant pain in my legs (not feet though). My neuro felt that exercise and stretching was key (with or without meds). I was skeptical because my pain was so bad that at times I could hardly walk, but things are improving in my legs daily. I am now walking and biking again and try to stretch throughly one to two time per day. (Of course, now there is something else...again....now I seem to have facial/neck pain and am not sure if it is neuropathic MS stuff or a swollen glands/infection/allergies.)

Please keeping posting on MS World. There is a great deal of support here for you. We all get where you are!

[lindaincolorado]

What would you think of trying acupuncture or medical marijuana (if it's legal in your state) ? I've heard of those who are helped by these ...

[onlyairfare]

I get mighty tired of neurologists who say "MS doesn't cause pain," and/or "I don't think you should use narcotics for chronic pain." Obviously, they don't have MS or chronic pain, much less both, as many of us do.

Maybe there are other medications that help chronic pain, but I certainly don't think anything cures it. I have found most of the alternatives neurologists propose cause me a lot of side effects, usually all day long, when I am trying to work and don't care to be tired, dizzy or nauseated.

So I just stick with my primary care doctor who prescribes opiates, which I use at night when the pain has built up all day; I can tolerate some pain during the work day as long as I can get some relief at night. Half a percocet when I get home from work, the other half at bedtime so I can sleep. Like you, I have pain mostly in my legs and feet, and this regimen works for me. I have tried all of those things you listed, as well as medical marijuana when I lived in a state where it was legal - none of them worked.

[Shashi]

Is the pain from spasticity? I noticed you're not taking meds for that. Spasticity can cause pain that feels like bad muscle cramps (Charlie horses.)

You might try baclofen or Zanaflex. I take 60 to 70 mg of baclofen daily and it helps with my leg pain quite a bit. I've tried Zanaflex, but it puts me to sleep. Others can take it with no problems.

[KureMS]

Find Another One

I get mighty tired of neurologists who say "MS doesn't cause pain," and/or "I don't think you should use narcotics for chronic pain." Obviously, they don't have MS or chronic pain, much less both, as many of us do.

Maybe there are other medications that help chronic pain, but I certainly don't think anything cures it. I have found most of the alternatives neurologists propose cause me a lot of side effects, usually all day long, when I am trying to work and don't care to be tired, dizzy or nauseated.

So I just stick with my primary care doctor who prescribes opiates, which I use at night when the pain has built up all day; I can tolerate some pain during the work day as long as I can get some relief at night. Half a percocet when I get home from work, the other half at bedtime so I can sleep. Like you, I have pain mostly in my legs and feet, and this regimen works for me. I have tried all of those things you listed, as well as medical marijuana when I lived in a state where it was legal - none of them worked.

If your neuro tells you MS does not cause pain, either ask what DOES cuase the pain and tell them to treat it OR find another nuero. MS and pain are usually associated and any sensitive neuro deals with that.

[nemvak77]

question about drugs

This may not be appropriate to this board.
It is about medication, though.
I have read about diabetes, and insulin-induced comas.
I don't want to sound alarmist, but does anyone have information about legitimate medications accidentally bringing about a coma?
Thanks,
Robert

[jackson9932]

I was the same way and they could never tell me what the cause of my pain was. The extreme cold temp made it worse...i took all of the drugs you had listed and either had reactions to them, like they made me feel drunk, or I could not function on them. I then was put on Tysabri and have been pain free for almost a year. My legs used to keep me up at night and actually felt better when I was up and walking and moving around than if I was laying in bed or watching tv. I dont think I slept alot that year. Anyway its hard to say if it is the TY that has helped or if it was just a coincedance but I have seen such an improvement in the last year that all I can attribute it to is the Ty. Good luck and I hope your pain gets manageable.