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TOPIC: Severe all body shakes worse when trying to relax

Severe all body shakes worse when trying to relax 2 years 4 months ago #3678

  • Supergran
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I have generalized dystonia which has been really well managed for some years now first with clonazepam then loads of helpful physio then I had to stop medication as it was impacting on my ability to breathe and I found myself in an ambulance night after night for hospital treatment to help me breathe. I worked really hard and have been 18 months without medication and then for no reason I can see or work out things have fallen apart. I should add that I have a 3 tier care plan....1st tier change of lifestyle and physio...2nd when I get too tired dealing with the spasms using physio etc and I need a rest I use diazepam and thirdly when my lungs and throat become involved with the spasms its off to hospital for procyclidine IV.

I have coped with this care plane for 18 months and in general things would only get bad if I had other things going on like a minor ailment or some kind of stress in my life. However I have developed major shaking in my body and the spasms are back with a vengeance and I am really struggling to gain any kind of control at all. My GP has put me back on clonazepam and I have an appointment with the Neurologist on tuesday. The shaking is a new sympton and I wondered if this is part of dystonia, I am in so much pain as my muscles have been moving for around 6 weeks now without a break and I am now forced to deal with well meaning GPs who think I could maybe do something else to 'take my mind off' I am exhausted and am actually finding it hard to believe that people dont die from this condition I feel so ill and I know that it is just exhaustion and pain.
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Severe all body shakes worse when trying to relax 2 years 1 month ago #3762

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Hi, I'm really sorry to hear that especially after you doing so well. Hope the neurologist was able to help. I'm new here, was just diagnosed with generalised dystonia last week after years of hospitals and tests. I have severe body tremor n constant pain n always tired but I'm the opposite, this was my first symptom apart from foot and calf cramp when I was very young. The tremor is worse than the spasms :blink: I'm on clonazepam too as well as baclofen, orphenadrine and normal run o the mill co-codamol. I'm an asthmatic n spasms are now in my neck n throat affecting my breathing. The tremor is from my jaw down to my ankles, it's even in my tongue. I try to joke and stay positive but I guess yes is the answer to your question. x
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Severe all body shakes worse when trying to relax 2 years 1 month ago #3764

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I am so pleased to hear from you I was beginning to think I was an alien! The tremors are worse than the spasms at its worse I honestly feel like this is what a shaken baby must go through and its evil!....my inner shake where I can not eat or drink, my eye sight becomes double vision and I have to close my eyes for any kind of comfort. I also get unbearable pain down my spine. My theory on this is the weight of my head when I sit up puts the small muscles between the vertebrae into spasm and the nerves are then pinched giving a pain like tooth ache from every individual vertebrae and i have not found any pain management to cope with this yet. I did hit rock bottom with this a few weeks ago and had the chat with my GP about something stupid and dangerous that I did for no other reason than I could no longer take the pain. I am not going to say I am fine with this as I know what causes it...hospital appointments in patient transport sitting in a chair that was not supportive enough and I have this to face again on weds when I am going to a homeopathic physio! I am waiting for a power chair and am hoping this will make life easier.

Do keep in touch it may take me a while to answer as I struggle to read and type now but I will answer.

God Bless
Christine x
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Severe all body shakes worse when trying to relax 2 years 4 weeks ago #3767

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Hi Christine, it's really nice to hear from you :) I was thinking I was an alien too. It's like no one understands us and more frustrating when it's medical professionals! Every definition of generalised dystonia and it's symptoms are the same. There's nothing mentioned about severe tremor, the intensity of the pain, the exhaustion, the frustration and struggle we endure on a daily basis! I've gone from being an enthusiastic accountant and confident lecturer teaching hundreds of students a week to a quivering wreck that struggles to even sign my own name. I too struggle to drink, bite, chew, talk, walk, stand, sit, the list is endless as you know. I was both shocked and relieved when you said about the unbearable pain down your spine. I've complained of this on numerous occasions only to be told it isn't connected to my dystonia, it's most probably wear n tear with working behind a desk for so many years :angry: I know exactly where you're coming from with the unbearable pain, we just want it to stop, even just a break from it. I have 2 children, my eldest has developed a hand tremor, I am going for generic testing, etc, there is no way my son is going to suffer the way we are suffering. I hope it wasn't too bad going to the homeopathic physio :( I'm not my usual 'cheery' self today but my niece said I've to stop trying to be Wonder Woman n give myself a break lol.
Hope you feel a bit better and don't worry about replying or how long it takes, I understand completely. It's just so nice to have someone that actually understands and is going through more or less the same. Thank you.

Nick xx
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Severe all body shakes worse when trying to relax 1 year 1 month ago #4078

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wee update on the tremors and pain! there is a huge amount of research around dystonia and seizures which are brought about by pain. I have just been discharged from hospital and have been told by a doctor that it is severe pain causing this and have been referred to the pain clinic.

Watch this space !
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