Severe Pain-problems with Docs

    • Anonymous
      May 6, 2009 at 8:24 am

      I have been having a relapse or whatever we call it when my symptoms: pain and weakness seem to increases tenfold. My PCP sent me to a pain mgt center and its been a nightmare. They schedule 3-5 appt per month and countless referrals. HE has decreased my meds and I feel worse. I have asked about Marinol but “He doesn’t beleive in its effectiveness” so he wont discuss it. It seems that all any new doc wants is to tell me narcotics are not what they fell comfortable with because I’m 36 and thety suspect drug seeking behavior. I need a good doc that will work with me on my steady decline and HELP me live day by day. I live in Greensboro NC…Anyone know a good doc???

    • Anonymous
      May 6, 2009 at 4:00 pm


      I understand your frustration. You mentioned Marinol. Marino effects the central nervous system. I have found that Ultram [also effects the central nervous system] is fairly effective for moderate to heavy pain. Ultram synthetic opiate. It can be habit forming but not as bad as Loratab (Sp?) and Viodin (sp?). You might want to do some research and check it out. I think you will find that what works for one does not mean it will work for you. However it it worth checking it out.

      Good luck finding someone to help you. Finding a doctor who is willing to help and proscribe something effective.

    • Anonymous
      May 6, 2009 at 5:20 pm

      Hi Mac! I think I would be finding myself another doctor and start over. Any doctor that sees you as drug seeking is going to pass it on to another doctor never getting you any help. My best advice is get your medical records with all your EMG/NCV’s and switch every doctor you have. Anything reports he has that mentions drug seeking. Don’t let the other doctors see them. Maybe then you will get the help you need. There are many non addictive drugs out there like Jim said that can help you. Maybe by seeing someone else this will help you get something done. Sounds to me like you have a non sympathetic doctor that doesn’t care if your in pain or not. I had one like that and I fired his tail! Now I am getting the help I need and thank-goodness~ LOL! At least now I am sleeping better at night knowing I have something to ease this crunch. It’s not the miracle drugs but at least they do help me! If I were in your shoes, I would be switching! Hugs
      Linda H

    • Anonymous
      May 6, 2009 at 6:32 pm

      Hi Mac,
      I know how frustrating it is to try to get relieve from a doctor. I have been having problems getting relief from mine lately. Unfortunely, with some insurance companies like mine you don’t have a lot of doctors to choose from. Just keep bugging them. I am now on Topamax for about a week and am suppose to start an increase in it and so far no relief, but will keep trying it for awhile. The internet and this board has a lot of info on different meds for people, and of course not everyone responds the same. Hope you find an answer.
      Clare in Michigan

    • Anonymous
      May 6, 2009 at 9:28 pm

      Hi Mac ….

      I am with Jim C ….. Ultram and there is also Ultracet that is very effective. In fact I usually take Vicodin for a week or so after my treatments but then I switch to Ultram or the Ultracet and for me at least it actually works better than the Vicodin and less side effects. Also just another idea that my doc told me …. if you take a muscle relaxer it does calm the nerves all over your body so you dont feel like you constantly have those creepy crawly feelings . Hope you find something that works for you .


    • Anonymous
      May 11, 2009 at 6:47 pm

      Hi MAC,
      I am out in Southern California, (Oceanside), and have VERY good doctors, (a team of 7), each specialists for the different ailments created as the CIDP hits my autonomic system, including an excellent Primary Care Doctor.
      They know the pain is real, as they know what CIDP is, and what it is doing to my body. You HAVE to have a good doctor that knows this disease and what it does to your body, INCLUDING THE PAIN THAT GOES WITH IT.
      So, you DO have to find a better doctor! To insinuate that you are a narcotics seeker for the fun of it is quite insulting to you, and also shows that doctor’s being unknowledgeable about CIDP. Yes–pain comes with CIDP, and you need relief from it.
      My doctor’s all know it, and treat me correctly.
      For very painful muscle spasms and cramps, when Flexeril 10mg three times daily wasn’t quite enough to work, they added Valium 2mg with each dose of the Flexeril, and it worked well.
      For pain issues, I have the Gabapentin, as well as Vicodin, and Marinol that helps you “forget” the pain, (also it was used for decreased appetite and nausea from the chemo).
      I am not in your area, but if you go to the main CIDP website, there is a list of doctors who specialize in CIDP, and I saw one in the Winston Salem area mentioned–I don’t know how far that is from you, but here is the link:
      Hope this helps–and yes-dump the doctor you have!

    • Anonymous
      May 11, 2009 at 9:03 pm

      Duke Medical Center has Dr. Jules Vern! Neurosciences Building. Very good team of Neurologist there and they specialize in CIDP along with other Neuro Diseases.
      Mac! I just noticed you too live in NC. I am on the other side of Raleigh in Nashville, NC. Something I noticed when I moved here 7 years ago from Philadelphia, PA. These doctor’s around here don’t like prescribing any kinds of narcotics.
      I had myself a time finding a good doctor down here when I first moved here to NC. They had me on 2.75 mgs of Zanax up North with alot of other drugs and when I first saw a doctor down here the first one wanted me off the Zanax! Ohh no! I don’t give Zanax to my patients. And wouldn’t give me my prednisone either. Refused to give me Prednisone and told me what I had left of it to wean myself down because he won’t give me that. Only gave me Ibuprophen. “Your labs are normal right now and you don’t need these drugs anymore! I told him that as soon as he takes me off them I am going to go back to being sick again! And sure enough I got sick really bad!
      Thank goodness I found one that finally listened to me! That poor doctor if it wasn’t for him I’d probably be dead by now! He placed me back on all my meds except the Zanax but has me on ..25 mgs of that. Just enough to ease the crunch on bad mornings. Did put me on Clonazapam though and that helps alot too. Put me back on prednisone too. That man saved my life this year in more ways than one.
      Jules Vern is a very good doctor. But he is at Duke Hospital which might be to far but well worth going to! Hope this helps! Hugs
      Linda H