Life with MS & EDS

April 2, 2010

Holy Cramp!

Filed under: Uncategorized — by mseds @ 3:33 pm
Tags: ,

I just had my first foot cramp since starting Copaxone and now Rebif and wow, I forgot how painful those are!  I used to get them all of the time, probably for about 10 years before my MS diagnosis.  They started during college, maybe even high school, in my calf and have been happening in my toes since after college.

One of the things that have made nightly and now 3 times a week shots worth it was avoiding foot cramps.  I know it’s not quite reasonable, but I’ve taken not having these cramps as a sign the medication is working.

I was standing for about 90 minutes in my kitchen preparing some food for our interfaith seder tomorrow.  I even had shoes on (thanks to my husband’s reminder.)  I walked upstairs for a moment, took off the shoes, stepped onto hardwood floor, and bam – foot cramp!  Sudden temperature changes, even a few degrees cooler, can trigger my foot cramps.  I guess that floor was colder.  I even had on socks!

Until I had MS, I never knew what was causing these cramps.  I’d ask other people and even did some research online, but never came up with an answer.  Potassium deficiency and dehydration were common potential causes, but someone MS never registered.  I never would have thought to have asked a neurologist about foot cramps.  I don’t think I even mentioned it to my first neuro down in Maryland, nor do I think he or any neuro has ever asked about leg or foot cramps.  This is just another, “if I only knew then” example.  Hind-sight is an interesting thing and it’s hard not to beat yourself up about it.



  1. I have MS and am on Rebif. I get these leg and foot cramps and they are excruciating. When I asked my neuro about it he said “oh, those are normal we all get them.” I do not believe that these cramps are “normal” at all. My foot looks contorted as my toes curl toward my heel and a ridge forms in my instep. Yup, that’s normal.

    Comment by Suzanne — April 2, 2010 @ 3:48 pm

  2. Sorry to hear you get them, too, although I’m glad I’m not alone. It makes complete sense that people with MS would have body parts that cramp up. Messages get messed up along the way and things go haywire. Isn’t that a basic definition of MS?!

    My toes don’t curl, but they look like repelling magnets! My big toe pulls as far away from my other toes as it possibly can. Yep, that’s normal!

    Comment by mseds — April 2, 2010 @ 3:57 pm

  3. I don’t have ms just EDS. Cramps like these are as familiar as my childhood teddy. As a child my grandmother would massage my feet and calves when they had eased enough to help ease that which I used to call the judders that inevitably followed. The thing i hate most about them is the shock of them arriving from nowhere. Funnily enough my spouse shouts breathe breathe from the first gasp as they start. I always want to say I’m not in bleep bleep labour darling! Its good to be able to talk about cramps with people who understand that if it was a case of eating more bananna’s or water life would be so simple.

    Can you get cramp in your back? I have tried so hard to describe to my doctor that I do.. but I do its like a cramp with squeezing compression. I say over again its not the same as the spasms I get in my back. He believes me I know but in his heart he thinks there is no such thing as cramp in the back. But I know different. There is nothing reasonable at all about cramp.

    I hope these episodes pass soon. In the meantime I’m stretching my toes as even typing the word cramp makes my toes curl and my calves tighten.

    Take care.

    Comment by achelois — April 2, 2010 @ 6:14 pm

  4. Foot cramps are horrible. I am always stretching my feet and legs and ankles, and pointing my toes. People ask why I do this. For me, it wards off the cramps. When I feel one coming on, I visualize it relaxing and I say to myself over and over “Oh no you don’t!” Seems to help.

    Comment by karen — April 3, 2010 @ 12:37 pm

  5. mseds – I get the freakish looking big toe pulling away from all the others toes too! Yes, it is horribly painful. Then one night the toes on my left foot were almost touching my shin. I didn’t even know that was possible. I physically had to push my foot back down to normal position. Normal??? I don’t think so.

    Comment by Suzanne — April 3, 2010 @ 3:11 pm

  6. Quellitall really helps with the cramping. Have you had any success with it?

    Comment by Chuck Beretz — August 2, 2011 @ 3:35 pm

  7. I’ve not tried it. Is it something you’ve used before? What do you think of it?

    Comment by mseds — August 2, 2011 @ 3:48 pm

  8. I get foot cramps while sleeping ,the one’s with the toe’s going different directions and ankle locks up with pain i get out of bed and try to walk to shower, and turn on hot water and use hand held sprayer on my legs , hot water melts away the cramps.

    Comment by Diane — February 11, 2012 @ 2:14 am

  9. glad I’m not on my own, mine are awful, both feet several times daily, constantly waking me up, can last for half hour or more, moving around doesn’t ease them, foot rubs, pain meds nothing, they just shift after a while and then come back grrrr

    Comment by julie devenport — November 9, 2012 @ 5:26 am

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