Movement Disorders Including essential tremor, dystonia and Restless Leg Syndrome (RLS).


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Old 11-20-2013, 04:50 PM #1
Grace Grace is offline
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Default dystonia/malaise

I am Grace. I have dystonia, and wonder if anyone else with dystonia just feels bad, like the flu. This happens from time to time. Good weeks, bad weeks.

Could anyone out there let me know if this is normal for dystonia.
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eva5667faliure (11-21-2013)

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Old 11-20-2013, 06:36 PM #2
Myelogirl Myelogirl is offline
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No, can't say I experience that. I have another disease as well and when my copper level drops I get depressed and lethargic. I've read lately that they think there is a link between copper levels and dystonia. Have you had your level checked?
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Old 11-22-2013, 07:05 PM #3
Grace Grace is offline
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Default dystonia/malaise

Hello Again. I have had a very bad week; in the bed mostly. Found out 2 things : those bad weeks are normal, and studies show only 2% have this malaise with the dystonia.
I will definitely get my copper level checked. So good to hear from you again. I hope you will feel better.
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Old 12-16-2013, 01:34 PM #4
Grace Grace is offline
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Default dystonia/ malaise

went to the GI doctor today. what is making me sick is something called gastro paresis. The food does not digest quickly enough and it makes you feel awful.
From now on, I have to eat many very small meals a day.
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Old 12-27-2013, 06:22 PM #5
Grace Grace is offline
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Default dystonia/ malaise

well it turns out to be gastroparesis. I know I have seen people on here before with it.
would appreciate any info
thanks
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Old 01-01-2014, 09:12 PM #6
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Default cervical dsytonia

I'm new to this forum. I'm really struggling with my cervical dystonia and fibromyalgia. It's has change my life. I've tried Botox and other med and nothing seems to work. My depression is getting worse and it's not only affecting me but my family as well. no one knows how i feel and what I'm going through. the intense pain all day is wearing me out and i'm not the same person i was 2 years ago. I'm trying my best for these two horrible conditions to not take over my life, but it's very difficult. I don't know what to do or why i joined this forum. sometimes i wish i'd fall asleep and not wake up. i'm lost and don't know what to do anymore. I've seen docs for depression, but they don't help. Dystonia and Fibromyalgia are like water and oil, they don't mix. one aggravates the other and i'm in constant stress which doesn't help either. anyone out there going through the same thing?
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Old 01-24-2014, 03:26 PM #7
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Hi. I'm new to this forum but not dystonia. I have general dystonia that affects from my lower back to my toes. I have recently had a baclophen pump installed and feel some relief, but not quite there yet. I also suffer from migraines, severe fibro, ddd, and many other issues including mental issues. In my small area not toomany people have dystonia and I've only met 1 other who's spouse suffers cervical dystonia. Trying to meet others with dystonoia and the pump whose willing to talk about what they've been thru and continue to fight.
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