Toes contracted and foot pain

    • Anonymous
      March 16, 2008 at 3:17 pm

      Hi all, well a few new items and i’m calling the MD on Mon. My toes are starting to contract, feel very tight, and are painful, feel like a tight band is squeezing all of the blood out of my feet.
      Back of my legs from mid-buttocks to knees feel like a tight rubber band is pulling at them and then gets snapped, that gives a lot of pain for an instant
      right hand does not want to reach behind me, like to pull up pants or down a shirt
      last getting some of the zips and zangs around the neck and back of head with some blurry vision.
      All other symptoms remain. Does any of the above apply to anyone else?
      Does this go along with CIDP or ? something new entirely?

    • March 16, 2008 at 3:34 pm

      Hi Beth, That is what Kevin felt when this all started.* However, there was only pain in the feet and cramping, the toes did not curl.* You mentioned in another post that you are not getting relief from any of the therapies.* I was wondering, were you teste for the other obvious disorders?* MS, and particularly, cmt?* Charcot Marie Tooth was Kevins first dx. The curling of the toes, or hammertoe, is classic.* The fact that other treatments are not working and the progression continues, puzzles me.* CMT does present the same physically and diagnostically on the ncv/emg.* A true test is a very particular blood test that only Athena labs does.* It takes a while to get the results.* Google cmt and see what you think?* I am thinking about you!Dawn

    • Anonymous
      March 16, 2008 at 6:45 pm

      They did that blood test and it showed elevation in the SGBG and Anti-Mag, i have an IgM spike. MD stated it was consistent with CIDP
      Thanks for the info.

    • March 16, 2008 at 8:34 pm

      Oh Beth,
      I hope one of the treatments starts working for you soon. You are always so kind and considerate to others, you deserve a break. I am praying that you find relief soon. At least it is not cmt, and there is medicine to help cidp, we just have to find a plan for you!

    • Anonymous
      March 17, 2008 at 12:50 am

      Hi Beth.
      What you describe sounds a lot like what some of us were discussing last week in a post by Stacey about tight legs. I would say it sounds like CIDP. Either that or we are all coinsidentally having leg and feet cramping and pain. The other night while sleeping (which is when my legs are at their worst) it felt like something was pulling my left toe back as far as it could go. It was so irritating and disurbing. When I woke up my toe was more contracted then usual. Just part of everything I guess. Beth, I hope you find some relief soon. At least mentally. Just keep letting us know how you’re doing.
      All my best,

    • Anonymous
      March 18, 2008 at 12:07 am

      Hi Beth,

      What you are experiencing sounds like some of what I have to deal with also.

      Taking one thing at a time, as the CIDP attacks the nerves that serve muscles there is a greater pull on the tendons. Your best answer is to try to maintain as much flexibility as possible through stretching. I try to exercise as best as I can, but I lack a lot of stamina to do real strength building, but I do try to keep as much flexibility as possible.

      Passive stretching, extending your limbs as much as you can, toning exercises if possible, all of these can help your pains. Do what you can and try to keep from over-doing it.

      There is one saying with CIDP — use it or lose it–.

      I dont get really gung-ho and wear myself out, but stretch where I can.

      Good luck,

      Dick S

    • Anonymous
      March 18, 2008 at 12:24 am

      I have CIDP and my feet are the worst! Night time pain is so bad!

      I have found if I put heat on them it seems to give some relief.

      I made rice packs and that’s what I use

      Rhonda from Canada

    • Anonymous
      March 18, 2008 at 5:14 am

      biskat1 posted on the 16th.[QUOTE]They did that blood test and it showed elevation in the SGBG and Anti-Mag, i have an IgM spike. MD stated it was consistent with CIDP.[/QUOTE] Has this only just been found after some years of CIDP supposedly?
      Earlier[QUOTE][My toes are starting to contract, feel very tight, and are painful, /QUOTE]
      If you have anti-MAG IgM with neuropathy then it is PDN or MGUS associated polyneuropathy.
      Your toes experience has been mine since June 1993. It’s a very good description. For the past 3-4 years the slowly progressive has accelerated.
      You may be familiar with norb and allaug who post on anti-MAG IgM and Rituxan.;) 😉

    • Anonymous
      March 18, 2008 at 11:57 pm

      Have your physicians eliminated POEMS Syndrome?

      Good luck.

    • Anonymous
      March 18, 2008 at 11:58 pm

      Sorry, that post was for Beth.

    • Anonymous
      March 19, 2008 at 8:34 am

      My toes dont contract, they just dont move. The big toes are bending to the side of the foot…like the left toe is bending left…right toe bending right.
      I dont understand it but if it’s a tendon tightening, that would make sense.
      I just wish I COULD move it or stretch it. The only way I can stretch them is to move them with my hands. The third and fourth toe on the left are curling like a hammer toe and very hard to straighten with my hand. I cannot straighten them without using my hands to do it. And sometimes when I put my shoes on, I have to be careful with my big toe b/c it gets bent when it goes into the shoe and then it hurts.
      Since I first noticed something wrong….almost two years ago now…my feet didnt look nearly as bad as they do now. I hope they dont continue to get worse.

      I want my feet back.

      take care everyone,

    • Anonymous
      March 20, 2008 at 7:17 pm

      Thanks for your replies and encouragement.
      I have had MGUS with the IgM spike for five years. It has never given me a problem, but the Aethena blood test showed these areas might now have some influence with the CIDP. CIDP was dx Nov 2007,
      Tried keeping my feet warmer last night and it did help. They are so numb that i do not realize they are cold.
      i see md on mon. hope to know more then.

    • Anonymous
      March 22, 2008 at 9:21 am

      bunions? I ask only because I have ‘mild’ ones. I’ve always worn sensible shoes and it’s happening anyhow. I figure it’s due to muscle contraction as I don’t walk as ‘normally’ as I used to due to the CIDP balance and strength issues.
      I use items called ‘toe separators’ to provide relieve between the big toe and the second toe. They help immensely.
      Worth taking a look at and considering. It’s usually not severe, but a good podiatrist can help you if you have concerns. It CAN and DOES hurt at times tho!

      Stacy, my toes don’t move very well either, I do the exercise of picking up and letting-go a bunch of marbles from a big pan into a dish. First at a minute and building up to two minutes each foot. At first the toes were so bad I just sort of jammed the marbles between my toes and let gravity drop them but after a week of trying I actually got toe function. My feet did get very sore doing this at first but it paid off in the long run. I got this exercise from a physical therapist.

    • Anonymous
      March 22, 2008 at 10:56 pm

      bunions, yes. I have the beginning of those, too…hereditary in my family. Not severe…but as the paralysis worsens in the toes, it makes it look like bunions more so I guess and bent toes. They look like they have severe arthritis. Even if I could keep a flip flop on, I wouldnt wear them now. Even the prettiest polish wont do these feet justice. 🙁

      I’m going to try the marble thing…that’s an excellent idea and we have a big jar of marbles that were my husbands when he was little. I’m up for anything to get these toes back…if not all the way, a little. They are just literally gone…no movement unless they are flat on the floor…when my foot is flat on the floor, i can move the toes. I think it was Julie that explained that’s from using smaller muscle groups rather than large.
      Anyhow…marbles. I’ll try them.

      I go to the neuro on Monday…..really dreading it. Dont wanna hear that I’ve worsened. I know I have. I’m in the middle of a flare up…or a progression…or whatever it’s called. I’m also in the middle of moving…trying to get things packed in my own house, my mother’s house…trying to get ready to sell her house, sell my house and keep the peace between two sisters that are fighting TERRIBLY. Maybe the doc will send me away to a beach somewhere with sunny skies and cool tasty drinks ?:rolleyes:

      best wishes,

    • Anonymous
      March 23, 2008 at 3:41 pm


      Sounds like we need to head over to the tavern for a long cool one….meet you there.