• Anonymous
      February 28, 2009 at 1:30 am

      Please someone tell me what causes these alwful, very painful cramping/spasms in the legs? 😮 Does CIDP do this? How & why? :confused: Goodness I would think if the nerve is dead there would be NO PAIN! And why always 9 out of 10 times is it mostly at night? To just get a WHOLE NIGHT OF SLEEP, oh that sounds SO SWEET!:cool:

    • Anonymous
      February 28, 2009 at 4:10 am

      Hi Kathi,
      When your nerves have been demyelinated and then remyelinated (or not) they don’t work as well as they used to. I’m probably telling you stuff you know already but… your nerves are very similar to electrical cords – they have an outer lining called myelin that keeps the electrical currents going where they are supposed to go just like the outer coating of an electrical cord keeps the electricity from sparking all over the house. Now imagine if you took the electrical cord to a lamp, shot it full of buckshot and then stuck some electrical tape on some of the holes in the cord. Now what you have is a lot of power going down that cord with a lot of places it can escape to before it hits the final target. If you really did that to a lamp you would probably shock yourself plugging it in and then electricity would start zinging out of the holes in the cord until a fire started and your house burned down. With your nerves its similar to that in that the myelin keeps the electrical currents flowing down your nerves rather than spreading out everywhere else. However having holes in your myelin, having patches, or thin places means the insulator isn’t working as well as it should be and electricity is escaping into the surrounding tissues – THUS the spasms and cramps. In addition, when you lie down at night and prepare for sleep your body goes through a series of changes wherein you sort of turn off your need for adrenaline, your muscles start relaxing, your mind wanders and you fall asleep. These are chemical changes and because your nerves are damaged sometimes the message to relax hits the damaged nerves and goes haywire. It takes awhile for the chemical messages to slow down and your muscles to finally relax. And sometimes they don’t all night for me, sometimes they get misfired messages all night long and I’m twitching and spasming all night. Yep it stinks but it stunk a whole lot worse when my legs didn’t move at all. 😉

      Oh, and most likely the nerve isn’t dead which is why you can feel it and it hurts. It’s going through that process of trying to work with holes in the lining so some of the electricity escapes and zings you and you get spasms and so on. They make good drugs for nerve pain – I can’t take them but some of the other people on the forum can give you more info about that.

      Hang in there – I know what you’re going through, I think a lot of us do.


    • Anonymous
      February 28, 2009 at 10:35 am

      My goodness you did a fantastic job at explaining that, thank you! So good that I will print that so I can let other try to see what its like. Dick did a wonderful job of explaining CIDP to me also! Yep, you guys are good! For me, my legs NEVER STOP twitching, its 24/7, non stop so I also wonder if its like this…the muscles or nerve not sure what is twitching, think its the muscles, anyway, they NEVER stop moving (twitching) so therefore they never rest & when I try to sit & relax and or TRY to sleep the muscles/nerves are trying to relax but can’t because of all this other …..going on with them so therefore thats when they decide to go PARTY on my time at night! Which in my mind (elementary at this point) is why my legs always hurt because its like running a marathon (thats a funny idea) and then the next day or so your muscles hurt because they were over used which is what happens to my legs 24/7 & more so when I have a bad night like last night, every hour up walking the floors & crying trying to get the cramp out. My husband has to help sometimes when the heel is up in the air & I & he with pushing down on me can’t get the heel down & the pain is just HUGE until we can get the heel down. Yes I’m with you, they still move & I am so happy about that. I have taught an aqua aerobics class for 15 yrs & know in my heart that is what has literlly kept me moving so WILL NEVER quit teaching that, for you all that have not tried it, go for it, its wonderful & you can do SO MUCH MORE in the water that we can’t do out of the water. I had a knee replacement (due to lyme) 3 1/2 months ago & was back in the water in 2 wks at the YMCA just so I could try to get this new knee moving. I tell ya it was WONDERFUL after the surgery & the rehab time for like 5 wks NO PROBLEMS WITH LEGS besides the new knee which really is not a painful process, would have more of those instead of the cramps/spasms in a minute its more like trying to learn how to reuse the leg, it was not what I expected but a nice surprise. Again, I thank you for all your wonderful information, keep it coming!
      Kathi 🙂

    • Anonymous
      February 28, 2009 at 2:58 pm

      [QUOTE]For me, my legs NEVER STOP twitching, its 24/7, non stop so I also wonder if its like this…the muscles or nerve not sure what is twitching, think its the muscles, anyway, they NEVER stop moving (twitching) so therefore they never rest & when I try to sit & relax and or TRY to sleep the muscles/nerves are trying to relax but can’t because of all this other …..going on with them so therefore thats when they decide to go PARTY on my time at night! [/QUOTE]

      I recognise this except that in my case it’s my feet. For 16 years I have experienced PDN (paraproteinaemic demyelinating neuropathy) a close relation of CIDP. The next bit is from some recent notes I have prepared for someone.

      “EVERY HOUR IS NOW DOMINATED BY THE VARYING LEVELS OF PAIN in the very rigid musculo-skeletal structure of my feet. It is not nerve pain as that is under control. From merely underlying the neuropathic pain in earlier years this other pain has become dominant. I can only sleep with the assistance of a sleeping pill (zolpidem).
      From the very beginning my feet have been constantly, i.e. 24 hours a day, contracting up or down, albeit vastly more so now than at the outset when I described my feet as feeling tight and as if I had torn muscles. Now they feel very tight and from the appearance of the tendons, particularly from the big toe, that is so. Muscles &/or joints can be weak and I can stumble a lot then. The pain varies in degree according to the tightness and the influence of pressure falls and wind levels. Frustrated about it I have in recent weeks returned to the anatomy of the foot to work out the cause of the pain.
      MY UNDERSTANDING IN BRIEF: Normally before having a neuropathy whenever consciously or unconsciously I needed to move my feet up or down for some purpose the ankle joint allows the foot to bend up and down (contracting/cramping along tendons and toes from the median/rested/relaxed position). When the muscles of the foot and the leg twist the foot in one direction or the other, such as up or down, the tarsal bones lock together [B]and form a very rigid structure.[/B] A very rigid structure! That’s how my feet are 24/7.Because of the damaged nerve endings the muscles and joints are getting this absolutely eccentric, involuntary contraction message from the posterior tibial nerve.
      For most of the 16 years I was using my feet for the everyday activities of life and enjoying gardening, and with my wife driving thousands of miles in this (the UK) and other countries and enjoying many miles /kilometres of walking on hills and in forests in Germany (Harz), Sweden and Norway. There was always pain and discomfort but that has increased over time and these years of great use must have been against my feet’s will, so to speak. Doing these things when the structure of the foot was not in the norm for particular actions. Compelled in spite of the rigid structure of my feet. So internal damage could have been occurring?
      So it is that the joints and muscles from my ankles forwards along with the tendons and their sheaths had little or no chance to rest, refresh and recuperate because of the unending contraction. This part of my body’s machine is overworking. Never ever normally relaxed. This could perhaps explain the type of pain I now experience. The result of 15+ years of wear and tear, tissue damage involving the muscles, tendons and joints. Something is causing this excruciating pain. If my attempted explanation is incorrect what other explanation is there?”

      Similar to your cramping?;)

    • Anonymous
      February 28, 2009 at 4:51 pm

      I’m 84 now with CIDP. My legs are completely gone. I have a morning cna to bathe me, get me dressed and use a transfer board to my wheelchair. I have another cna reverse this procedure at bedtime. I use a hospital bed which is a neccesity as it is adjustable in height.
      My legs even though dead as far as any use still hurt and cramp. My only recourse has been a sleeping pill. Once asleep, the pain goes away. As soon as I wake up, the pain and cramping begins.

      I once had an elementary principal in my school district who was in constant pain. I use to ask him how he coped. He said he internalized it. I decided to try this. It works fairly well as long as I keep my mind occupied. Thanks for books, computer and tv.


    • Anonymous
      February 28, 2009 at 8:19 pm

      cramps stink. I am with you. Great advice above. I get them worse after I over – do it the day before.

      Take care of yourself
      Dick S

    • Anonymous
      February 28, 2009 at 10:04 pm

      Hi Dick,
      Again, thank you so much for your explanation of CIDP, the good & bad cops, your explanation was so simple but so informative & easy to understand at the same time! I have tried meds at night too many to remember, none that work until valium but it only worked for a couple of months & then the bliss time was gone. It does help me sleep WHEN the legs are not in cramp/spasm modes. It was suppose to help them NOT cramp but after the blissful time was gone that did not even happen. So the few months were sweet but I don’t believe in taking meds if they don’t work, no use too. I know I have over done the last few days, but by my choice, trying to get things moving so to speak for the spinal tap, want to make the most of the test. But that is very true, its almost as thou we know what is going to happen before it does because we know if we over do what will happen 9 out of 10 times. Thank you for all your advice, I so do apprciate all your posts, very helpful.
      Kathi 🙂

    • Anonymous
      March 1, 2009 at 3:36 pm

      Dick S.
      What Krose/Kathi is describing is/are not cramps as in intermittent cramps BUT constant non-stop cramping/contarcting.
      I read her description of her experience to one of my daughters when she phoned – checking up on me! She agreed that it sounded the same as my painful 24/7 contracting but in the legs.

      Kathi. Does my contribution/essay? of yesterday read similar to your trials?:eek:

    • Anonymous
      March 4, 2009 at 2:04 am

      I have the tight feeling in my legs from below the knees 24/7 – as if my lower legs are rubber bands that have been stretched to the limit. This is in addition to the other CIDP stuff, eg: cramps, electrical sensations, etc.
      The tightness is more pronounced now that I can do more physically (Eg: walk a bit further than I could last year) – so it seems to me that even though I can do more with my legs, it’s at the expense of more pain and tightness.

    • Anonymous
      March 8, 2009 at 2:17 pm

      Further to my post of 28th February. I spent some time on Friday morning with an orthopaedic surgeon with a special interest in feet and ankle treatment.
      I told him about my reasoning about the 24/7 contracting in my feet. He agreed with my understanding that because of the damaged nerve endings resulting from the neuropathy the control over muscle contraction in my feet had been altered fundamentally. In fact so altered fundamentally that contraction never ceases when norm is that when the desired action (as in pressing on or releasing a car brake pedal) has been completed the foot returns to the median or relaxed state.
      From x-rays and other examination there appeared to be nothing wrong with the bone structure of my feet.
      This seemed to confirm my reasoning that the pain emanates from the overworked and taut/contracted muscle fibres, tendons and connective tissue.
      The situation now demands finding an appropriate pain management solution to help to make life more positive. Nothing now can stop the contractions but to find pain control is so far a distant dream.

    • Anonymous
      March 8, 2009 at 4:39 pm

      That cramping sucks…..I also have that….I have found that Neurotin help some for that ……you might want to talk to the Dr. about that. Will keep you in my prayers……..Sherry:confused: :


    • Anonymous
      April 20, 2008 at 6:54 pm

      I have been getting a lot of cramping in my arms and legs. can this be related to CIDP?

    • Anonymous
      April 21, 2008 at 12:34 am

      cramping could be linked to your CIDP. It is hard to say. I know I get quite a few Charlie horses in my legs. I get lots of pain at night. I find putting heat on them helps. Hubby rubs my feet and that helps the most.

      Rhonda from Canada

    • Anonymous
      April 21, 2008 at 7:16 am

      Maybe but I would try to eat things that have potassium like bananas or have Gatorade drinks or anything that have potassium in it.


    • Anonymous
      April 23, 2008 at 11:06 pm

      I know that you will think this is a crazy thing to do for cramps, but I read it in the Dr. column in the newspper. And it works for me. Rub liquid soap on the cramps ( I get them in my feet and toes). Usually it is releived in 5 minutes. Since the dish soap was closest the first time, that is what I use. You have it around the house. Try it, if it dosen’t work for you, you haven’t lost anything. But I sure hope it does work for you.
      Mary Ann