CIDP without pain?

    • Anonymous
      November 25, 2007 at 12:57 am

      Is there such a thing as CIDP without severe pain? I have muscle weakness, stiffness and cramping, but not the extreme pain everyone talks about. My neurologist does not know what is going on. (I had a very mild case of GBS last year).

    • Anonymous
      November 25, 2007 at 1:04 am

      According to my neurologist, severe pain is not a common symptom of CIDP. Thats why when people talk about pain I always try to understand if its muscular or nerve pain. I too have mostly muscle aches cramping and stiffness with intermittent sharp nerve pain. I don’t think doctors know the full extent of CIDP symptoms though so anything is possible.

    • Anonymous
      November 25, 2007 at 6:41 am

      ive found its from muscles being weak and all that, so try and walk , do step ups, and plenty of stretching, all those rsi wrist and hand ones, feels good,

      also have a squuzy ball to get hand strength up. that and have plenty of codine / neurofen on stand by.

      and quietly a few drinks with friends over was great, relaxed the body.

      well thats just me. i guess everyones variant effects them differently.
      right now, typing this fast hurts my hands once i stop… .

    • Anonymous
      November 25, 2007 at 10:52 am

      Thanks Darcy & Linda! This is all so confusing at times. All I know for sure is that something is not right. I had gall bladder surgery on Tuesday and I am wondering how long before I can feel that I am in the “all clear” for any flare-ups? I feel that some of my weakness in my arms/upper body today may be worse because of the surgery stress.

    • November 25, 2007 at 11:58 am

      I also believe it is muscle pain. When Kevin had his relapse and we finally realized it was cidp and had treaatment, I noticed that he always complains of wrist pain and ankle pain. The pain immediately follows days to a week after treatment and lasts about 2 weeks total. Once his muscles build up again to where his new found stregnth is, he is ok. I beleieve the treatments thwart the inflamation allowing the nerves to recieve the transmission from the brain better and faster, thus allowing for increased agility. However, the muscles are not yet up to the demands. Once he has been “boy active” for about the 2 week time period, the muscle pain seems to cease. In addition, once in a great while he does complain about zings so to speak, but I get those to. I have to try and enforce to him that not everything is because of cidp.
      DAwn Kevies mom

    • Anonymous
      November 25, 2007 at 5:19 pm

      I’ve never had the extreme pain that many of our members talk about. But I do have EXTREME numbness/tingling/prickling. Since a pain medication does not cut into the numbness, I’ve never needed that either. I’ve had or have all else that goes with CIDP and I am a severe case of CIDP.

    • Anonymous
      November 27, 2007 at 12:24 am

      I’ve always had “random shooting pains” since I was young, but not like others have experienced with CIDP. I don’t think pain is a defining factor.

    • Anonymous
      November 27, 2007 at 2:08 am

      This is what I am going thru. Extreme pain comes and goes with me. It is a severe burning pain that doesn’t go away with me even with meds. It just runs its course and goes away by itself. Now I have had six surgerys and have never taken any pain meds after the operations because I don’t feel pain at all for some strange reason. I thiink it depends on the person IMO.

    • Anonymous
      November 27, 2007 at 5:40 am

      I have never taken pain medications after surgery either, in fact I’ve rarely taken any pain medications at all. When I was a child the doctors told my mother that I have a high threshold for pain because I create my own endorphins in response to pain. We found this out by accident when they gave me narcotics in the ER when I was really young and then had other opportunities to witness the “no pain” as I got a little older. Therefore I am very sensitive to narcotics but do not really need them because when something traumatic, like surgery or continuous pain, kicks in so do my endorphins. I’ve come to recognize the symptoms in the last 35 years and can tell how injured I am based on how loopy and nauseated I feel. However this only appears to work for me for pain that is either very intense, such as surgery on my peroneal nerve, or chronic, like the pain from my curved back. Pain that is associated with overusing my weak muscles does not elicit that response so I feel that pain from time to time. Nerve pain – what I call the taser – also does not elicit an endorphin response because it is too transient. All my life I’ve been told that it’s a double edged sword to not feel pain and it truly is – I walked around with a broken foot for three days grinding the bones together and never realized it until my foot turned black and blue. At any rate, I do feel fortunate that I only rarely have the shooting nerve pain because it truly is debilitating.


    • Anonymous
      November 27, 2007 at 7:59 am

      Hello all.

      I’d have to say that I am one with no CIDP pain most of the time. when I do have pain, it’s a horrible ache, almost stabbing- that travels. One minute…or even second, it hurts in my hand on the side, then goes to the finger, then the top of hand or side of finger and same with my feet. It doesnt stay in one place for even a whole minute. I had one episode of very bad aches in my hands and since then, it’s just occasional.

      And, I noticed the severe aches are the nights of Ivig…my legs and feet will hurt bad. I had wondered if it was the nerves “waking” up, but, was told that’s not so.

      I’m giving up on trying to understand.

      I’m just greatful to not be one to suffer with intense pain that many others have daily.

      My truest pain is my neck from a bad disk and my tummy from an ovarian cyst.


    • Anonymous
      November 27, 2007 at 10:53 am

      Thank you all for your responses. There seem to be a lot of different “normals” for CIDP and GBS as far and pain and symptoms go! I do not have intense pain, but I do have pain in my muscles when they have been twitching a lot and feeling weak. Not sure if this is GBS residual or possibly something more. My neuro suggested he may want to do another NCV/EMG when I see him at the end of December.

    • Anonymous
      November 27, 2007 at 9:43 pm

      I get the tinglies with my CIDP, it’s not what I’d call painfull, but certainly are inconvienent. Most days the tinglies increase around 10am and again at 1am. I rate my tinglies on a scale of 1 – 10. Most days are around 3, and a few a month are 8’s. Hope this helps, my first post!

    • Anonymous
      November 27, 2007 at 10:05 pm

      Welcome, Randy!
      You did great on your first post! Randy, are your tinglies actually muscles twitching (can you see your skin move)? Or, is it a burning kind of sensation in your muscles? Or, is it a zinging, electrical feeling? There are so many different feelings I have been having and this is the best way for me to describe them.