cidp pain relief…HELP !!!

    • Anonymous
      March 17, 2013 at 1:08 pm

      Hi fellow CIDPers….  Although my pain can sometimes be pretty generalized (whole body, flu-like feeling) most  of the times its my feet and legs that hurt badly and it drives me nuts… hard to concentrate on my work, etc… im sure u know the story.   Besides trying to stay as active as i can (exercise  and walking my dog ) right now my armamentarium consists of the following: icy hot menthol gels at night, alcohol, marijuana and narcotic pain killers.   (ive been on every anti-depressant under the sun, none of which worked, only made me fat and lazy and dull…)  im just wondering what others do to control the pain and establish some sort of quality of life without making more of a mess with drugs and alcohol….  of the methods i just described, the oxycodone works the best for me because i get quick relief and am able to sleep and function the next day…alcohol  gives me a headache and marijuana makes me forgetful and wanting to eat like Godzilla.   Im afraid of addiction and tolerance from the percocet though… right now i average about 20 mg two or three times per week.   im also concerned about the long term effects of this…  i get mixed info from doctors… my pain management doctor doesnt seem to be concerned, my neurologist seems slightly concerned….  Acupuncture did nothing… i have regular massage and this helps somewhat, but is brief and very expensive.   any suggestions??  at this point , if the long term effects of narcotic pain relief are not horrible, i would be satisfied just to be able to sleep well and have a few good hours of relief and enjoyment doing the things i like to do  WITHOUT PAIN !!!    Thanks,  Steven….     ps Dx 2005, on IVIG every 5 weeks.  that’s it.

    • GH
      March 17, 2013 at 5:56 pm

      It’s impossible to compare one person’s pain to another’s. I had considerable pain in my legs in the hospital, and was taking oxy meds for it. But when I started recovery I went off them cold turkey. I didn’t like the side effects and didn’t want to develop a dependency. Two years out, I still have pain in my feet and I still take nothing. When they hurt too much to walk, I just get off them for awhile and put them up if I can. At my level of pain, I can just live with it.

      However, my case is different. I am in remission. If you are still taking IvIg, you must have a chronic condition, so I can’t really compare. Ending the active phase of CIDP is necessary to begin to recover from the pain, I think.

      I do think it is not a good idea to take any more pain meds than are absolutely necessary, but that’s a matter that must be discussed with your doctor.

    • Anonymous
      March 20, 2013 at 1:18 pm

      steven..i am 13 months into this and your questioning what the  answer to all this crap is exactly what i am  feeling.    I am taking  almost the same medicine as you..and have tried everything.  Massage ever week which should be covered by insurance.    the pain sometimes  is worse than in the beginning….why is there  not an answer to this disease????   How long have you had cidp?




    • Anonymous
      March 22, 2013 at 7:38 pm

      cathebt,  i was diagnosed in 2005, so im about thirteen years into it… as i mentioned, the only treatment i am on right now is IvIg every 5 weeks…  i think that is holding the demon at bay, but there are some days i feel like its an uphill battle…  my words of encouragement for you :  acceptance and positive thinking.  i think that’s the best medicine ever.   i’ve come to accept my disease and as silly as it may sound, i’ve learned alot and grown from it as an individual…. things that i would not have realized if i did not have cidp.    …things like gratitude and tolerance, stillness and being present.    The positive thinking part is really just NOT giving into any negative energy… and pushing to do the things i like to do, like exercise, work, being outdoors with my sheepdog, spending time with my friends and family….i  really believe in that.    i started this topic because i know i am not alone and wanted to see what others do to control the pain so that i CAN do the things i like to do and enjoy my life.   i’m not mad at the universe and i dont say “why me?”   everything is the way it is supposed to be, so i dont question any of it.   my mission is to stay as comfortable as i can and to never give in to this.  a while ago, i read something on this forum from a member, i will never forget, and try to live by this:  I Have CIDP,  CIDP does NOT have ME…   best of luck to you.    steven    ps thanks for the info about the insurance possibly covering my massage;  im going to look into that cuz its knocking me broke. !!!   S

    • Anonymous
      March 31, 2013 at 4:10 am

      My pain is chronic like yours, I take vitamins, and Tramadol, I dont think my cymbalta is really helping. I do the breathing techniques and dont start testing until the specialist is available in May. The diagnosis is new to me but the pain is going on three years and i am a 25 year old mother of three children. I try to enjoy the good moments, and keep moving, I’m scared if I relax to long I’l either be achier or never want to get up. Good luck with your symptoms, wish I had advice for you