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Conditions and Diseases > Multiple Sclerosis Forum > Secondary progressive ms pain relief ?
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Q: Secondary progressive ms pain relief ?
asked by: mylifemykids on October 5th, 2009
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I have had secondary progressive ms for 2 years and have yet to see any pain relief from baqlofen, tegritol or copaxon.Every doc that I have seen has had the wait and see approach and I have waited painfully and patiently for 2 years now and nothing.I am at the point now where I have lost all enjoyment of life, I can barely make it out of bed and usually simple tasks have become mountain climbing.I have been put on everything from amitrypline nuerontin,lyrica,flexiril,ultram and the copaxin and nothing seems to be helping, when will the tegritol and copaxin work Ive been doing them for 3 months and they havent started working yet?
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zigemyster
replied on October 5th, 2009
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Have you had a pain pump installed?

Or been to pain management?

When I took neurontin...my pain actually increased...lyrica makes me feel drunk at times...can't take ultram - I see things that aren't real like walls melting. Ugh.

Zig
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mylifemykids
replied on October 6th, 2009
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No pain pump and yes I have been to pain management or at least that what they called themselves they were the ones that did nuerontin abd lyrica.Its funny nuerontin made me feel drunk and lyrica made my lips swell up like a bad botox job!The ultram gives me horrible headaches but its the lesser of 2 evils and that is all anyone have ever given me over and over again, "oh they've already tried that?Well Ill try it again but increase the dose, lets see if that helps."I sware doctors are sadist,lol.
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imsure32
replied on October 7th, 2009
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Wow, I feel really bad for you. I know what it is like to live in pain. I lived with fibromyalgia pain for 16yrs with no help from any doctors. They all treated me like I was some kind of junky looking for a fix and treated me like I was some sort of psychpath. Then I ended up with more pain from other problems including osteoarthritis in my spine, shoulders, hips, knees, and feet and my doctor finally took notice and did something about it so now I get Lortab 10mg/325 120 pills every 2 weeks but I have become more and more tolerant of this drug and I am scared of what is gonna happen if my doctor doesn't stick with me and my pain and my tolerance levels of this drug.. but I think you need to find a new doctor, one who cares about your well being and will listen to you because I think anyone with MS should be on pain medicine.. I mean it is chronic and debilitaing! What more do they want??? I am also being tested for MS, or at least that is what we are leaning towards.. feel free to read my posts... Good luck to you!!
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Users who thank imsure32 for this post: mylifemykids 
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Shiva108
replied on October 7th, 2009
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I am in the same boat, and i am getting desperate, marijuana has helped me some, out of all those drugs it seems the most effective for me,
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zigemyster
replied on October 8th, 2009
Moderator
Be careful with Lortabs...I took them for several years...ended up with Gastritis...would not wish that on my worst enemy.

However I tried anti-inflammatory diet for my Fibro that I suffered with for 8 long years...pain is gone...however MS is still here but manageable most of the times.

Back to the original post. I'd go back to your neurologist and see what s/he has to offer for pain management. I personally believe that when meds do not work that medical marijuana should be allowed. Montel Williams has suffered from horrible pain and he goes the MJ route.

Are you in a state that recognizes med mj (even though the government does not...)

Zig
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mylifemykids
replied on October 9th, 2009
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Thanks everyone, I just moved to Pa from Nj so Im not sure if they recognize the Mj route but it scares me I tried it a couple times as a kid and to say the least it made me really uncomfortable,lol.I guess it could be different now though.I am always scared to ask for pain management b/c for years before I was diagnosed every doc I saw told me there was nothing wrong with me and/or I was drug seeking as soon as I mentioned the word pain.I understand that doc's are stuck between a rock and a hard place now with the growing pain killer addiction epidemic but I have proof of my disease and if they spent jus one nite with me they'd understand!I have been to see 2 dr.'s here so far and niether of them have even attempted to manage my pain,I sometimes just feel like giving up,it took almost 3 years just to get diagnosed and now 2 more years of trying to find a doc that really wants to help!Do any of you live in pa and know any GOOD MS doctor/s?I guess I have gone 5 years what is a few more?
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imsure32
replied on October 9th, 2009
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Bless your heart... I feel your pain.. even with pain meds I still feel a lot of pain.. it's a very hard life and I don't wish it on anyone...
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kadji2
replied on October 30th, 2009
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Pain from M.S.
I know where you are with trying to find a Dr. who will listen and not assume every ones a drug seeker. although they all agree I have pain no one wants to address it. Hoping I found a docter that will listen I was dx.4 years ago and I'm still looking. I just really know it sucks. good luck to you.
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