Leg pain and CIDP

    • Anonymous
      May 16, 2008 at 5:02 pm

      Every morning when I wake up and try to stand/walk I have a lot of leg pain/tightness that eventually goes away after I walk for 10 minutes or so. It then comes back if I sit for any extended period of time. I read somewhere here that sometimes dr misdiagnose CIDP with plantar faciatis, and theses symptoms seem somewhat similar.

      I am wondering does anyone else have this type of leg pain. My dr keeps telling me that it is a tight heel cord and I should stretch it out, but I have done that for 3 months without any improvement.

      Could this be more of a symptom of CIDP rather than a residual? My dr is waiting to treat me once symptoms show up again (its been 3 months) but I have concerns about this leg pain and about how much damage would have been done by the time I notice symptoms. I see her next week and I am going to re address this then, but I wanted know if anyone else had this problem.

      Thanks again for the help


    • Anonymous
      May 16, 2008 at 6:30 pm

      Hi Marjie, Yes it is common. I have had that problem since Aug 05. During the first few months it would get alittle better, less pain, but for the last 2 years it hasn’t eased up any, actually mine is pretty painful at the moment. It makes it alittle tougher to get around, alittle longer accomplishing tasks because I have to get off my feet every few minutes.
      I wish I could tell you it will get better, but I can’t say that yet. Stretching is good, it helps prevent further damage to the tendons and ligaments. Keep the Faith. Take Care.

    • Anonymous
      May 16, 2008 at 6:53 pm

      You need to have an EMG to see if you are getting worse. Going 3 months between treatments may be too long. Sometimes the demyelination is occurring & you just don’t realize that it is happening until it’s too late.

      The full life of IVIG (meaning how long it lasts in the body) is about 41 days. Any time after that you no longer have the anti-bodies in you to ward off the CIDP anti-bodies, so then your disease may become active again. The key to getting better with CIDP is to keep the bad anti-bodies at bay & allow your myelin to repair.

      A tight heel cord sounds like it might be drop foot. Can you bend your foot up & down while holding it out in front of you? Can you walk on your heels & tip-toes?

      Leg pain is very common with CIDP. My daughter had it for quite some time in her calves. She described it as a “nut”. Keep in mind she’s only 6 & was 4 when dx’d. It’s easing up a bit now & only happens when she over does it, gets sick or get too hot.

      Good luck.

    • Anonymous
      May 17, 2008 at 12:24 am

      Actually I’m lucky that I can stand for long periods of time. My work involves me being on my feet and I am up to working 4 six hours shifts a week – thank the Lord since I carry our health insurance and have to average 20 hrs a week!

      Also I can lift my foot up and down and do circles but I cant’ lift it totally up for full range of motion. Almost, but not quite. The leg pain is only when I am off of my feet, like over night, or sitting at my desk for an hour or more.

      I have concerns about going this long between treatments, but I know I am doing better than a lot of people so I dont’ know if I am expecting too much. I used to work 2 full time jobs and chase two teen age daughters around before I got sick. I know thats extreme, and it is hard to compare to where I am now. I know I have a “new normal” now I’m just trying to figure out what that is.

      I think my greatest concern is getting as close to 100% as I can now before I relapse. I don’t want this to sound selfish, as I know others are in far worse condition than I am. I am just trying to put my pieces together.



    • May 17, 2008 at 2:17 pm

      Hi Marjie,
      that is the exact pain Kevin has the morning after a day of play. He usually takes an aleve every morning and he too gets relief after about a half hour of walking. I HAVE had plantar fascia tend. and had the surgery, it helped me, Kevin describes his pain the same way. So yes, they bothe seem to present the same way (plantar fascia and cidp)

      My friend Lameeka on this site who DOES have cidp, was dx w/plant fascia first, as this is where her pain was and later was dx w/cidp. She now gets regular ivig and her foot pain has gone away. I believe her first line of treatment was steroids and she saw instant relief w/steroids but eventually got off of them and on to ivig.

      The feet are the last to heal, healing starts from the top down. however, since you are not getting regular ivig, you probably have not allowed the healing process to start, you probably are in an active attack. As mentioned, the ivig only lasts for 42 days MAX. You need treatment. I responded to the private message you sent me, check it out.
      Dawn Kevies mom

    • Anonymous
      May 17, 2008 at 7:10 pm

      Hi Marjie,
      I have the same problem only some-days it takes a longer then ten minutes to loosen up. I have found one great side effect from this: it’s harder to put my foot in my mouth. :rolleyes:

      Seriously, right now I’m trying to find a neurologist that will aggressive peruse my case. Things have been going slowly downhill. The only thing he has done is change the IVIg infusion from a 90 day interval to a 60 day interval. North West Florida is not exactly known for cutting edge medical expertize. It’s not at the end of the world, but you can see it from here.

    • Anonymous
      May 19, 2008 at 11:52 pm

      thanks for all the insight. I go to see the neurologist tomorrow and I’m going to approach her about treatment intervals, how many cases of CIDP she has treated, and the leg pain. Hopefully I can get some answers and if not, maybe its time to change doctors again.


    • Anonymous
      May 21, 2008 at 11:11 pm

      I am having the same problem, I was dignosed last month, I have had 5 IVIG’s it seems since I have had them I have gotten worse. I am hurting all over from my head to my toes. Is this normal? My husband has the same diease. But, he could not take the IVIG or steriods because he is a diabetic. I work at a desk every day, if I had a job to stand all day everyday, I would not be able to do it.