Dystonia is not a disease but it is a rare disorder. I have dystonia and today I am supporting Rare Disease Day. 

Posted on February 28, 2015 by janicetindle.com

About janicetindle.com

NOTICE: NOTHING, and I mean NOTHING, from my website janicetindle.com may be use without a request in writing to me. Permission, if granted, will be done in writing. Failure to do so will result in possible prosecution. I am the sole owner of my words and at point of publication on this site it is copyrighted as mine. - copyright 2012 Janice Tindle In 2010, I suffered a traumatic brain injury and other injuries when hit by an under insured driver. It changed my life. I now live with Dystonia, a rare and painful neurologal disorder that causes involuntary muscle spasms and abnormal posturing. There is no treatment or cure. The best one can do is treat the symptoms. You can learn more at DMRF.org. I try to write about people and things that help and inspire my readers. You can find more of my story by going to helphopelive.org. I am also on Facebook, where I have five pages, Pain Brain -Anti- Inflammatory Foods, Brain Tears, The Positive Posters Page, Traumatic Brain Injury Resources Page, Janice Tindle- Writer. I am also on Twitter and LinkedIn. Simply Google my name and my published articles should appear. I've been published in Fearless Caregiver, Today's Caregiver, TBI Hope and Inspiration Magazine, The Mighty.com, and several other publications. I am currently a caregiver for my dear mother. My hope is to someday finish my books, "Get Back Up!" and "Galicia's Granite" during my mother's lifetime. Your interest in my care, recovery and writing is greatly appreciated. Thank you. Comments are welcome.
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2 Responses to Dystonia is not a disease but it is a rare disorder. I have dystonia and today I am supporting Rare Disease Day. 

  1. Laura Brice says:
    May 9, 2015 at 6:13 am

    Hello. My name is Laura. Your Awareness of Dystonia was just on my Facebook. tHis is my VERY FIRST TIME of hearing about this Disease. I am in AWE of this ,you see for years now I have been treated with Fibromyagia. For years I have been in denial. I keep telling my doctors there is NO REASON I should have this many muscle spasms as I’m having,for no reason!!! They respond by prescribing More Flexerial and sending me on my way. I am in AWE of hearing about this because it would ALL make so much sense. I have had a neck surgery and a back surgery..years apart… both because of vertabares in my spine busting. both have plates and screws.
    i could be walking and out of nowhere i get a spasm in my hip stops me on the spot and dybilitizes me completely. i have to slowly take my time to make it pass. Or i could sit driving down the road and under my right rib cage I get a huge spasm and have to pull over until it quits. Or I could sit and work 8 hrs. and try to drive home and my back arms legs and rib could spasm and again the pain is unbearable ,so i have to pull over get out the car and move slowly until my spasms stop. This has been going on for around 8 years now,maybe ten. Right now as i type i am having the spasm in my neck because I am trying to type on my bed. My feet spasm all the time.
    My question is this : Are these what happens to you? Janice? Where do I go? My rhuemotologist is what tells me its fibro. But I say this: The spasms are so bad that the pain comes because the spasms have caused it. Thats why I can’t be touched most of the time. The spasms seem to be causing my stiffness. I know my body,but the doctors seem to be indifferent in what i am telling them. PLEASE HELP. Its gotten to the point that I can’t work hardly anymore. You say its not a disease but maybe it is….

    Liked by 1 person

    Reply
    • janicetindle says:
      May 9, 2015 at 6:22 am

      Laura, I’m so sorry about your spasms. I too have a plate and screws in my neck. I was also told I had FM. Please find a body movement specialist doctor. Mine is a neurologist. You can contact the DMRF.org for help finding more info. I wish you the best in your journey. Thank you for posting. ❤️

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