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

Wibbly Wobbly leg

Since my last post my ability to move around has deteriorated rapidly! The shake/tremor in leg has become extremely violent and my leg feels like its made of jelly. The force of the tremor physically shakes the upper parts of my body as I try to hobble about. I have never had a sense of balance, so you can imagine how hard I am finding it to stay upright, when my leg is shaking me to the point that I would fall if I was not being held up. This tremor has made my knee extremely painful, the other night the pain was so excruciating that I ended up having a Non Epileptic Seizure.

I am trying to work out whether this tremor is a new development to my leg or if it is a development of a Dystonic movement that was already happening. You see, often when my leg goes into spasm, as the spasm is about to go, my right leg would shake like mad. The way I always thought of it was that my leg was shaking away the spasm, this sounds silly but it was a comforting thought, these tremors would last from to seconds to a good couple of minutes. I think it is likely that this new issue is simply a development of the previous tremor, as Dystonic movements do develop (get worse).

However this creates a whole new ball game. I know that with Dystonia, you cannot really forward think, as you never know what will happen from one day to the next. Nevertheless I find myself having to think forward, as I like to have some sort of plan in place. After speaking to someone with similar leg problems to myself and hearing what they do to manage their symptoms, I have had an idea which I would like to discuss with my doctor. I want to put across to him the idea of getting a knee or leg brace. I have previously used a splint for my hand spasms and I found this very helpful in containing the spasms and most of the time it prevented the spasms from getting too extreme. As this worked well for my hand, I think it would make perfect sense to try out on my leg.

I shall of course listen and take on board anything my doctor suggests, I presume he shall offer me some sort of muscle relaxant to help, and I shall happily do/try whatever he wants me to. However I think I shall really press this idea. After looking into it more, I have read about a number of people who have tried knee or leg braces and found that they had good experiences with them. I plan on waiting a few more days before I go to my doctor. I had originally planned on waiting two weeks before I went but I don’t think I can deal with the pain the tremor is causing for that long. The reason for waiting is so that I can go and say, this has been happening, I believe it is a development of a previous movement, its been having for X many days and this is what I want to suggest. For me, I think this is the right approach to take with my doctor.

Who knows what will happen, I can only hope that he decides to give my idea a go! Until then I am going to avoid moving around as much as possible, so that I do not cause myself any more pain!

 

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Comments on: "Wibbly Wobbly leg" (5)

  1. Hi. My right leg does the same but it has got alot better with sinemet and baclofen. It still does it but not so much. My tremor occurs more if my spasm is coming out of a spasm but sometimes it will stop if I let my leg spasm. It’s a weird one. I hope you get some answers about the splint idea. Take care x

  2. Dystonia makes us insecure … Most times, we do not have much to do besides taking medicine or things like that. Each case must be treated as unique. I understand you!

  3. samcharvey said:

    Rebecca good blog! The picture you chose does look remarkably like your legs especially in your new jeans!! Stay strong my amazing girl xx

  4. brittany said:

    i’m 26 years old and have dystonia in my right lower leg a foot. it came about after a surgery i had on my foot. i cant really find anyone else who has the same thing. its called lower limb dystonia and it usually doesn’t happen to someone my age. is there anyone out there or is it just me?

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