Dystonia in toes?

Discussion in 'Fibromyalgia Main Forum' started by dhcpolwnk, Aug 24, 2006.

  1. dhcpolwnk

    dhcpolwnk New Member

    I've recently started having strange spasms in my toes (individual toes at different times, not altogether). A toe wil suddenly jerk into an odd, overstretched position and seem to lock into position. It hurts like crazy. I think what I'm experiencing is called "dystonia."

    In the past when this has occurred, a few minutes of massage would allow me to move the toe and gradually get it back into normal position. But I'm concerned because it seems to be happening more often lately and seems to be more severe.

    I have so many different things wrong with me (including fibromyalgia) that I'm not sure just what is causing this. I suspect a connection to my multiple sclerosis, but I was wondering whether this might be related to fibromyalgia.

    I've googled "dystonia," but I really haven't found answers, just more questions. So I thought I'd ask about it here. People on this board have always been very helpful.
  2. sascha

    sascha Member

    couldn't it be a muscle cramp? i've had that happen in my toes, too. i put my weight on my foot, and it goes away eventually.

    i have dystonia in my vocal cords and throat, and it affects my speech. i don't know what the difference is between a cramp and a spasm- dystonia is uncontrollable muscle spasms-

    i suppose a doctor could diagnose it for you. cramps are painful. my dystonia is uncomfortable, and causes difficulty with articulation and voice production. it is tiring to speak at times.

    i have heard that b-complex vitamins can help with cramping- perhaps you could try that.

    anyway- there's my input- good luck to you- sascha
  3. dhcpolwnk

    dhcpolwnk New Member

    I talked to my neurologist, and he prescribed baclofen (Lioresal) for the dystonia (or muscle spasms or cramps or whatever they are). I know that dystonia is fairly common in MS, and a lot of people with MS take baclofen, but after reading a little about it, I'm kinda nervous about it.

    Has anybody on this board taken baclofen?

    --Laura R.M.
  4. Cromwell

    Cromwell New Member

    I just saw this post and have a teen friend with this condition, but all over and this includes her toes.

    I just wanted to let you know.

    For a while my little toe wopuld shoot out at an angle and it was not like a cramp, yet it lasted too long to by a myclonic jerk(dystonia)

    I think but am not sure that the difference between dystonia and cramps my be that dystonia tends to be sudden and short.

    I hope this is helpful, plus I hope you get some answers on the med. The meds for MS are pretty strong and have some scary side effects listed for sure.

    Love Anne
  5. Bella49

    Bella49 New Member

    I have been diagnosed with dystonia in my left toes by my nuerologist<BR>
    and he told me the cause is unknown. I suspect it is another symptom of lyme disease which I have been treated for in the past and suspect I was not cured. You mentioned fibromyalgia which is also a symptom of lyme. Don't mean to scare you but, I would suggest you do some research on lyme disease... just to rule it out. An mri of my toes showed thinning of the bone and lack of blood supply. I am at my wits end with the pain this causes. I have some days that are worse than other days. When it is really bad, the pain prevents me from sleeping at night and I have to walk with a cane as each step is excruciating. The only treatment offered by my nuerologist is a series of botox injections in my lower leg, which I am scheduled to start in about a month. Good luck to you and I am praying for some relief.
  6. roge

    roge Member

    i have myoclonus (the fastest movement disorder). myoclonus is not the same as dystonia. my myoclonus is more sleep onset related but also get some electric like jerks (ie. arm jolts out) in the day when awake. they are thankfully not severe (as in frequency) and have not progressed since i started getting them 6 years ago. i have fm and me/cfs.<BR> sorry, but i cant be of much help with your dystonia. but as you have MS, then that could explain it but who knows FM is a crazy diisease that can cause almost any symptom under the sun so it could be that as well, although in my experience i have not heard of many with FM having dystonia, muscle cramps and spasms most definitely and even myoclonus spectrum (ie. periodic limb movement, restless legs, sleep onset myoclonus) but not so much dystonia but who knows heh. it is the day time jerks (not so much the sleep onset) that i get when awake that makes me think sometimes i have something in addition to my FM, maybe even MS as sleep disorders are pretty common with FM andME/CFS. all the best
    <br><br>[<i>This Message was Edited on 02/12/2011</i>]
  7. roge

    roge Member

    no direct experience but i am considering trying it more for its deep sleep (stage 3 and 4) promoting qualities. Xyrem is the big gun when it comes to a drug (well it is more of a supplement actually) that is proven to increase stage 3 and 4 sleep and in turn growth hormone which i beilieve is low in many with fm and me/cfs. but i have read baclofen is a close 2nd to xyrem in increasing deep sleep. &lt;BR&gt;
    we need deep sleep to heal both muscles and nerves, so perhaps it might help with your dystonia or severe cramps and spasms if you in fact dont have dystonia. good luck&lt;BR&gt;
  8. roge

    roge Member

    xyrem ( which is essentially ghb) is a natural substance found both in foods and found in our brain. it once was a supplement you could buy in health food stores until it was being abused for date rape drug. it is appauling that one company now can sharge 30,000 /year for what once was a supplement. of course it is now a prescription drug mainly because a company has a patent on its delivery mechanism and did research to prove it helps narcolepsy but bottom line is it is a supplement. further, quite disgusting the FDA didnt approve xyrem for FM mainly because of abuse concerns because it was proven to have efficacy, yet another slap in the face for those with FM.

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