muscle cramping is cidp right?

    • Anonymous
      October 27, 2009 at 3:23 am

      everything is coming back to me as to what I went through 5 years ago. I have always listed muscle cramping as my symptoms becasue that is what they did 5 years ago but I forgot really what that entailed.

      I remember 5 years ago before the subacute onset that I thought I needed to eat more bananas or get some potassium because my muscles were cramping. then it got way worse. it seems like myopathy or something.

      now it is happening again. my neck, my quads and my arms.
      is that a typical CIDP thing. what is it? why? it feels like I just gave it my all doing sqats on the ram rack or something.

      what helps for this?

    • Anonymous
      October 27, 2009 at 9:44 am

      Emily was dx’d at 4 years old & she used to complain of “nuts” in her arms. After coming here & talking to people I discovered she was complaining of “charlie horses”.

      So yes, muscle cramping can be a part of CIDP.

      I’m not really sure what helps it other than getting IVIG treatments. When Emily would get the pains I would give her Motrin & put a warm washcloth on her. Again, she was 4 so I’m not sure how much it REALLY helped.

      She used to refer to the neuropathy as “strawberries” too.

      Imagine trying to explain to busy dr’s that your 4 year old says she has strawberries & nuts in her body, LOL.


    • Anonymous
      October 27, 2009 at 10:15 am

      you know I have been looking at my posts over the past 6 months and it is interesting to see this escelate. I knew this was going to get bad last may but I did everything with in my knowledge at the time to prevent this

      5 years ago I ran around with these symptoms and didnt even know what CIDP was. I just knew what I was experiencing was very similar to the “GBS” I had been diagnosed with in the past. it took a year being entangled in HMO burocracy just to rule out MS. so after it went into spontainious remission I gave up.

      SO this time I ran to the doctor at first symptom. having a PPO now they did tests right away. too soon. my neuropathy from may to aug. had been relatively mild. I had an EMG with in 3 weeks of symptom onset. I now know that there is a lag time for this stuff to show. its like looking at a star in the sky that has already burned out lol.

      I ran around so frantically so early on now I am stuck with all these normal tests. that I assure you are quite obsolete now.

      I am very optimistic becasue I am still highly receptive to both prednisone and the PE they administered last month but I am woke up 4 times to pee last night so I think the illness is crossing lines. and these doctors are stingy with the IVIG.

      I just wanted to say all that becasue it is a lesson that I have learned that might help someone else in the future.

    • Anonymous
      October 27, 2009 at 10:38 am

      [QUOTE=tara74] it feels like I just gave it my all doing sqats on the ram rack or something.[/QUOTE]

      [FONT=”Century Gothic”][SIZE=”2″][COLOR=”Sienna”][B]Quads! Oh yes, exactly that … for me it’s the extreme “exercise burn” in the quads. Cramping elsewhere.

      Boy, you really hit a nerve with that sentence, Tara![/B][/COLOR][/SIZE][/FONT] 😉

    • Anonymous
      October 27, 2009 at 12:03 pm

      Hi Tara,

      I had GBS and know very little about CIDP (I’m learning though), but I wanted to ask; have you had your Vitamin D levels checked?

      I was experiencing very weird muscle spasms and cramps. Like you, I thought it was my potassium and made sure I had a banana or orange juice daily. My doctor checked my Vit D levels and I was at a 6 (I believe the normal range is between 30-80).

      Hope you find relief soon!!

      Take care,


    • Anonymous
      October 27, 2009 at 1:15 pm

      I have CIDP, and before being diagnosed I suffered leg cramps; usually when swimming. After being diagnosed I was told the cramping was a symptom. They stopped for a while after I began receiving IVIg infusions, but mysteriously started again when I was sleeping. It was suggested to add a supplemental Vitamin E to my diet. For me it seems to work. My leg cramps have stopped.

    • Anonymous
      October 27, 2009 at 2:07 pm

      Muscle cramps have been probably my worst symptom as it keeps me from sleeping more than 3-4 hours at a time at most. I get cramps in both legs from toes to hips in muscles I never knew I had. Occasionally it happens in my hands. It is much better after IViG, but at the end of my cycle, the week befoere treatment, it always comes back. I tried all the usual supplements and took quinine pills for a while, but nothing helped. As soon as REM sleep sets in the nerves don’t do their job of telling the muscles to relax for the night, so its wake up and reboot the nerves and try to go back to sleep. No real solutions from the doctors. Still, despite the pain and the fatigue, it is manageable and could be worse.
      Good luck to you and let me know if you find something that works!

    • Anonymous
      October 27, 2009 at 3:35 pm

      [QUOTE=DonMo60]Muscle cramps have been probably my worst symptom as it keeps me from sleeping more than 3-4 hours at a time at most. I get cramps in both legs from toes to hips in muscles I never knew I had. Occasionally it happens in my hands. [/QUOTE]

      [FONT=”Book Antiqua”][SIZE=”2″][COLOR=”Sienna”]That’s interesting. Do you wonder if some of our symptoms are in any way related to the RLS ( restless leg syndrome ) so many people have to deal with? ( including me, by the way, until I was diagnosed with CIDP and started on the gabapentin )[/COLOR][/SIZE][/FONT]

    • Anonymous
      October 27, 2009 at 11:45 pm

      did your docs do a Full Metabolic blood panel on you? That will tell you HEAPS!
      Like, IF you are low on calcium [usually in partner with magnesium and Vite D] and also little things that can be sort of helped such as the B Vites…just stay away from B-6 as much as possible. Calcium works best in being taken into your body w/this combo.
      Go web up all the meds you are on and see if calcium loss or osteoporosis shows up in their ‘findings’ during testing and side effects.
      They add up if you are taking, as many of us do,…several meds? Cramps in and of themselves are called ‘fasculations’ go web that up and get a brainfull. But first Please! Get that test, or if it’s been done? See if you can get a copy. Good quality vitamins from a good supplier can really make a difference. Worked for me!
      When looking at such a blood test tho? First don’t panic at the Asterisks ****** -these things?] those just flag the truly high or low aspects. Take a look at those tests that are just below the ‘high’ line, or above the ‘low’ line. When I was finally diagnosed w/my CIDP 6 years ago…the diagnostician hinted at a possibility of ‘asorbtion’ issue in the present or the future. I read and research these tests to see if [B]I AM[/B] on target w/ my supplements. It’s a good measure of what is working that I am doing to try and be as pro-active as I can about this all. I even tease my docs about ONLY paying attention to those *****’s! They smile… they KNOW I KNOW. Sometimes it’s the ‘marginal’ stuff that gets to you the most.
      Good searching, you aren’t going crazy. That docs don’t put the meds/calcium connection together more often is a question for the real ‘God/Gods’ to answer. Nuff said. Take care.

    • Anonymous
      October 28, 2009 at 10:50 am

      I’ve had something going on in my legs for almost ten years, that no one can seem to identify. Usually wakes me up about an hour after going to sleep; it’s like an electrical current that starts at my knee and runs all the way down through my toes, causing them to stiffen and my entire foot to extend. Lasts for 2-3 seconds, fades away, then repeats about 5 seconds later. It will usually occur 4-5 times a year, lasting for a week or ten days at a time. Not really a cramp, but not “normal”. I HAVE had 2-3 doctors tell me that it is NOT restless leg syndrome. Don’t know if that’s anything like what the rest of you are experiencing, but thought I’d throw it out there.

    • Anonymous
      October 29, 2009 at 2:20 pm

      I’ll be brief,

      when my CIDP was putting a hurtin on me. If I were to try to point my toes
      down, the lower leg and foot would lock up and I would have to put all my weight on the toes to get it to go back.

      This was the only place I got it.

    • Anonymous
      October 29, 2009 at 5:35 pm

      My first memory of a symptom was cramping in my toes and legs… I used to wear a splint at night to be able to sleep because the cramping would get so bad. The different docs all had different ideas and I tried them all. Now I have learned that stretching is the key– and good nutrition including plenty of calcium and magnesium. My CIDP is primarily sensory… now that i have little feeling in my legs and feet, the cramping is not as much a problem… i can see it- but it is less painful. Granada26

    • Anonymous
      October 29, 2009 at 8:38 pm

      Hi Tara,
      Yes, cramps and spasms are a symptom of CIDP.
      Years back, when I was getting them bad, you could actually
      sit and watch the different muscles in my leg, “dancing”,
      cramping up and spasming, causing severe pain.
      My doctors watched for themselves.
      So, back then, and I am still on the meds now, they put
      me on Flexeril 10mg three times daily. But it still happened
      some with the cramps. So, they added Diazepam 2mg
      three times daily to go along with the Flexeril, and that
      finally worked.

      Though, just recently, the cramping and spasms are starting
      back again. Being that my doctors are trying to keep me
      as comfortable as possible, my PCP said that the Flexeril
      cannot be increased in dosage. However, the Diazepam
      can be increased. So, at the moment, he told me to keep
      increasing the Diazepam until it seems to stop the spasms
      and cramps. I am at 6mg right now, three times daily.
      If they still continue then I will increase it again.

      It is okay during the day when I am sitting, just once in
      awhile is there the spasms. But it is worse when I am
      laying down on the bed. There is one muscle on top
      of the foot, that pulls all the toes upward making it very
      painful, as well as spasms in the legs in different areas.
      Luckily, last Tuesday when I was admitted to the hospital
      for my monthly chemotherapy of Cytoxan, in the afternoon,
      the spasms and cramps “attacked me” severely. And my
      nurse watched as the muscles were spasming and doing
      that nasty thing of pulling the toes upward. And with my
      hands, the three middle fingers were spasming and cramping
      together–all the time the nurse was watching. She immediately
      call my doctor, and got the flexeril and diazepam into me.

      So, Tara, you said you were confirmed to see a PCP at
      Scripps-La Jolla. There are two Scripps in La Jolla.
      One is Scripps-Genessee, the other is Scripps-Green.
      Scripps-Green is an awful place, having been there as
      a patient. A few years back, as a patient, I was keeping
      a daily diary on how many mistakes were happening.
      It is a teaching hospital–so beware, if that is where they
      are sending you. Too bad you couldn’t go to Scripps-Encinitas,
      as that is a very good place.
      Scripps-Genessee is supposed to be good, though I do not
      have any first hand knowledge.

      And beware if you are assigned to a neuro by the name of
      Dr. Kalofat, (not sure of the spelling as it was years ago).
      To this day, my lifemate said we should have sued her
      for poor practice, but I chose not to–I just wanted to
      continue until I found a very good neuro, of which I now
      have had for over 5 years now, and put the bad part
      of the beginning when they were trying to see what I
      didn’t have versus what I DID have. That was about
      10 years ago. And I would not go to Scripps-Green
      if you paid me to go!
      Let me know which Scripps you are going to…

      So, if your cramps and spasms keep happening, suggest
      to your doctor the Flexeril, and/or Diazepam–it definitely