Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

I have never been a flexible person. The only part of my body that is flexible is my arms and wrists. However last night the little dystonia alien decided to show me just what it could make my body do. For a few hours before my dinner, my leg had been playing up a bit, my foot was bent and was dragging behind me. However during dinner it seemed to calm down and I relaxed. When I tried to get up from the table and hop to the living room, with my mum helping me, the dystonia alien decided to wake up. Before I could brace myself, my leg went into a spasm, sliding itself backwards. My stepbrother fetched a chair for me to sit on, so that I didn’t fall down. Yet my leg kept going backwards. Within minutes I had no choice, I had to either try to slide myself off the chair and onto the floor or have the spasm cause me to fall onto the floor. By the time I was on the floor, I was literally doing the splits. Despite being in agony, I had to laugh, I am not flexible, yet here I was on the floor in spasm doing the splits.

Eventually the spasm eased off and with the help of my Grandmother and my Mum, I got up off the dining room floor, and tried to hobble through to the living room. However the dystonia alien had not finished playing games. My right leg and foot shot behind my left leg. To those around me, it must have looked like I was curtsying. Yet again I ended up on the dining room, the spasm had pulled my leg as far as it could go. Again I ended up laughing. I am not sure whether I laughed because of the situation or if I laughed in exasperation, perhaps it was a bit of both. It took a fair length of time for the spasm to ease off.

I still cannot get over how far my dystonia pulled my leg and foot last night! The spasms in my leg and foot have always been pretty extreme and odd to look at, but last night was ridiculous. I now wish I had gotten someone to take a picture/video the spasm so I could show the specialist, I shall remember to ask someone to do so next time. Despite last nights spasms being so extreme, I feel rather positive today! I surprised myself at how well I coped with the pain of the spasms last night, especially with them being so extreme. I feel that with each spasm the dystonia alien throws at me, I gain more confidence, as I know that I can deal with my spasms fairly well.

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Comments on: "Last nights Dystonia antics" (6)

  1. Is your dystonia responsive to doplomine?

  2. I typed this big long comment and it didn’t post here I go again. I take carbadopa/lovadopa. Excuse the spelling. It is one pill 25/100. Emory in Georgia has a distonia center. I haven’t been but I went to a parkinson diease specialist at emory. My diease mirrors parkinson which yours sounds like also. I am not saying it is going to work. They said I have doplomine responsive distonia. Which it works for me. It could for you also. My brain doesn’t make enough doplimine. 19 years ago they thought I had parkinson diease but the specialist thought I was too young. But put me on the medication anyways and it work. I never changed dosages in 19 years. and it still works thank god. Now they said I do not have parkinson diease I have

  3. distonia. I hope this helps you and keep me posted. If it works it will be life changing because I know exactly what you are going through. No doctor could tell me anything. It was a nurse who told my primary care physcian to watch the way I walked. It affected my walk at this point. Then he thought I had parkinson diease. Then I went to a specilist

    • Hey, Thanks for your comments! I shall let you know tomorrow after I have been what the neurologist says. I am in the U.K, I don’t know if we have any dystonia centres here but I shall certainly look into it, and shall talk to my neurologist about the lovadopa. How did you find the medication helped you?xx

  4. the pill is carbodopa/lovadopa. The carbodopa helps the lovadopa get in your system.
    http://en.wikipedia.org/wiki/Carbidopa/levodopa
    http://www.parkinson.org/Parkinson-s-Disease/Treatment/Medications-for-Motor-Symptoms-of-PD/Carbidopa-levodopa.aspx

    Here are a few links for you to look at. With the correct spelling of the drug!!

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