Pain, Pain, and more Pain

    • Anonymous
      August 18, 2011 at 7:55 pm

      I have had CIDP for about 7 years now. I didn’t start off with pain, but have gotten the worse pain ever now in my hands and feet. My neuro has tried everything, antidepressents don’t work on me plus I get bad side effects. I have tried Namenda, Nuexdra(sp?), Lyrica, cymbalta, etc. Nothing seems to give me relief. Has anyone else had this problem and what did give you relief. I do take Vicodin, but it only gives me partial relief. I am trying acupuncture. I am desperate.
      Clare in Michigan:mad:

    • Anonymous
      August 18, 2011 at 8:38 pm

      Sending you a PM.

    • Anonymous
      August 19, 2011 at 9:59 am

      Misery loves company, I guess. I am sitting in bed waiting for my morning doses of gabatentin and oxycodone to kick in. I am five years out and on lower dosages of oxy. But the gabapentin can only do so much. I wish the oxys weren’t so problematic, as they work better at lowering pain than anything else I take. However, the side-effects are very unwelcome. Until this morning, I had forgotten how much I needed to stay in bed a few years ago.

      My pain is in the feet, lower legs, and below the waist, in levels of intensity.

    • Anonymous
      August 20, 2011 at 9:36 am

      Larry114, I understand what you are going through. The only thing that gives me some relief and only for about 4-5 hours is Vicodin. I get so tired of people and doctors looking at you like your some addict when I tell them I’m taking it for pain. If I was going to be an addict to it, it would of happened a long time ago. I go some days without taking it. It was made for pain and some of us really do need it for that. My pain is more intense at night. I’m lucky to get 5 hours of sleep a night. Some days I get so down from this pain that I don’t even feel like getting out of bed. I hope that you get some relief from yours. I don’t understand why some people with CIDP get pain and some don’t.
      Clare in Michigan

    • Anonymous
      August 21, 2011 at 12:22 am

      Have you tried Ativan? I know it isnt a pain relever but when I am desperate for pain relief I take one. The only problem is they make you very tired!

      Hot packs also help me

      Take care

    • Anonymous
      August 21, 2011 at 2:21 am


      I completely sympathize with you. Pain is my mortal enemy and I suffer daily, hourly and constantly. I would love to chop my “blankety blank” feet off somedays.

      Pain management is a complete deal. If pills were the complete answer, there would be something we could do. But to win the pain game it takes an all around approach.

      I am like you, that the typical drug list didn’t help me for all of my pain. Some pain takes narcotics to knock down. I don’t think I will ever be pain free anymore. I just take what I can get so I can live through the problems and hope for a better tomorrow. Here is what I do:

      First, I try to stay ahead of the pain. If it feels like a bad day coming up, I get on the percoset for breakthrough early. I take morphine 60mg 3x a day. This is for the “motion pains” The skeletal,muscular, tendon, pains that are associated with movement. If I did too much the day before, the next day stinks and I need to be ready.

      second, I try to moderate my activities. I have to realize that I cannot do what I did 15 years ago. My CIDP got a lot worse 11 or 12 years ago and the pain increased. I am limited more and more since then. I used to be a golf pro and could hit golf balls all day long. Now 9 holes every now and then is my max. if I play 18, I pay for it. So I have to learn my limits. I can only walk so far, can’t run or jump. So I don’t try.

      that is not defeatist or quitting, it is just living.

      Third, the neuropathic pain I can treat with meds. The shooting pains etc can be controlled.

      So I mix and match my meds and try to live within myself. I always have pain and just hope to moderate what I have to live with.

      Lastly. When it hurts, I sit. I will no longer push myself after reaching my pain limit. Too much is too much.

      Meditation, positive attitudes, realizing that I will live to see another day, all of that helps.

      Let me know if I can help

      Dick S

    • Anonymous
      August 21, 2011 at 4:20 am

      Not to hijack the thread, but staying in the realm of pain, Is anybody else suffering from a loss of flexibility, and when you try to “stretch it out” it actually causes more pain the more you stretch?

      That is my larger dilemma. The more I stiffen up, the less I can stretch. Pain both ways.