Generalized dystonia

[keepmoving57]

I have cervical dystonia have had this since 1990. Took them 3 years to diagnose me. My head was everywhere but then started Botox and helped to lift head up but the tremor was bad. Anyway now I have hand dystonia so am unable to write properly tremor in my hand has made me feel awful as unable to fill out forms my fingers ache too and had carpel tunnel done in same hand. I have not applied for pip as cannot handle downers. Have been in and out of deep depression been seeing my Dr every week. Live on my own. And get very low and disinterested in things which I guess is how we feel. I have now been getting pain in my right leg more of an ache from groin to ankle and it's horrible.

Anyway I guess we just get on with it.

[Barbara124]

Hi

I, too, have dystonia which affects my hands and I can’t Write, well I can sort. Of but it is unreadable. My head nods and I get a lot of Aches in my neck. I also have backache most of the time and my right leg and foot get numb and the ache/pain drive me mad. I have just started Botox to help my hand and writing but was told by gp that backache is either a stiff muscle or cyatica. I also have problems with my speech as my voice fades away or people can’t understand me and I find I get ignored a lot. I am considering having Botox in my throat but it does worry me but my voice is worrying me more. Stress makes it all worse and it makes me angry which again makes it worse. I do understand your worries so if you would to talk please feel free to contact me. All the best and take care. Barbara

[keepmoving57 in reply to Barbara124]

Hi Barbara

Thanks for your reply. Unfortunately stress does make it more hard to handle. I hate this illness as always in pain. I try to go swimming once a week too. Have you tried swimming very good for dystonia.

Kind regards

[Barbara124 in reply to keepmoving57]

Hi

We were on holiday the week before last and I went swimming - it really knocked me out. My back neck and knees really played up after and put me off trying again. I use to love swimming ad often went 4/5 times a week. I probably should do it more so I can get use to exercising more. I’m afraid my exercise consists of walking and climbing stairs. Have you tried jazzercise? Have been thinking about that but it maybe too much for unfit me. I was doing a yoga class unil about a year ago (I love yoga) but my balance seems to have got up and Gone. I was told the nerve in my ear had been attacked by a virus and I was given yet more exercises to counter this. They have helped a bit. Do you have balance problems or headaches as I wonder if they are part of the dystonia. You are right it is a grotty little illness which few people have even heard of. I’ll keep you posted.

Barbara

[Rkai in reply to Barbara124]

Just thought I'd share with anyone reading this that hydrotherapy has been the only real relief. The really warm water 31-34 helps and exercise in the water with help from physio gives you a program of on going exercise helps legs and arms but no pressure neck. I first accessed it through a pain management program at the hospital. Would recommend it.

Rkai