Acute Dystonia

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Acute Dystonia
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#notcool #ouch

I can’t sleep again because I slept during the day. I was tired even though I didn’t do any. Pain is familiar and I’m only thankful that it’s not as bad as it can get, right now. I don’t want sympathy. I really want people to be more honest and the world to be WAY less stressful.

The muscle groups on the left side of chest are tight but I am grateful I can breathe. The left side of my neck has been hurting for 2 days on and off but it’s been worse so I am thankful for the small intermissions from pain. My left hand and arm are curled up even when I am just relaxing in bed but my sweetheart told me they relax when I am asleep. I hope that the assessment appt for my left upper extremity won’t be too painful. That will be corrective surgery 10 or 11…..I don’t know.

I try to stay away from stress and confusion and I am thankful for some peace and joy. This life has difficulties but all in all I am very grateful to have the strength and clarity of mind to keep stuff simple….one day at a time.



What do you exactly mean by 'acute'?

Do you mean it come and goes? This is what I have in my hands and fingers.
My feet are the main problem.
I've been diagnosed by 2 neurologists in 2 different university hospitals to have a primary multifocal distonia, whatever they mean by this.
Dispite of this I got the label 'very serious conversion disorder with tetraparesis' even if the cramping attacks completely stopped after taking less muscle relaxants (now more than 2 years ago). In one of the university hospitals you can find the only existing unit for people with a chronological disease, where you're supposed to learn living with it. I was there 6 weeks starting with 1 cramping attack every few days and going home with about 3 every day.
I was really close to asking for euthanasia. All papers were ready. A few days before I left, the relaxation specialist of the unit told me (after I had to take the initiative, because nobody told me he could help me with the cramping) that my muscles react because of the high muscle tension level I've been having all my life (to keep all joints in place because of my hypermoility). When I allow them to relax too much, they 'panic' because I could 'fall apart' and react by blocking every possible movement and joint. In these attacks I only could hear and feel, but I couldn't react on whatever way because I couldn't even get my eyes or mouth open and breathing looked more like hyperventilation because the muscles between my ribs refused to move. It seemed a bit like a 'locked in syndrome'. So after I got home I reduced the muscle relaxants by half and (of course together with the neurologist) more cramping attacks ever since. And this conversion disorder still sticks to my files. 😠
In this special unit you only get group therapy (because of the budget, I think) and everyone I've still contact with who was there when I was, is still unable to talk about their experiences there (too difficult). It's been three years now. So the unit doesn't really work.
That's why I start studying clinical psychology soon. My dream is a multidisciplinary team - specialised on chronical ill people with pain problems - with a physical therapist and an occupational therapist so we can work on the things this specific person needs to be able to have an easier life.
The orthopedic surgeon I see told me in August that I had 3 choices:
1. Stop walking immediately
2. Keep walking like I do now (on the outer side of my feet, even with splint) and ruining my ankles beyond repair.
3. Have the same surgery I had 2 years ago, which is already ruined by the dystonia and 'buy' some more years of walking.
It all results in the same: I end up being stuck in the wheelchair I now only need for distances of more than 0,06 miles. In my apartment I walk, using every wall, cupboard, door,... to stay balanced.
The only question is when, not if.
We call these situations "choosing between the plague and the cholerae".

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