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TOPIC: generalised dystonia with pains around the spine

generalised dystonia with pains around the spine 1 year 8 months ago #3924

  • Cat
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Hi Christine
Thanks for your update. Sorry I didn't reply to you last post. The plan for your chair sounds interesting. I'd be interested to hear how it goes. It's interesting to read your posts.
After a year of constant pain in my back I was offered botox before Christmas which was a great help. I've had another dose. Since then I've been able to go swimming regularly and a short holiday in UK.
High back chair helps me. I'm still very attached to my wheat bag!
All the best to you, thanks for sharing your tips and giving an update. Cat
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generalised dystonia with pains around the spine 1 year 6 months ago #3988

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wee up date! I got my power chair delivered a week ago and the effect has been amazing. My pain relief has gone from average 6 tramadol and 8 paracetamol a day to 2 paracetamol as needed before I go to bed. When the discomfort starts I recline the chair and it immediately takes the pressure off my spine and the pain disappears.

Emotionally it is taking its toll having to give in to a wheelchair but am getting there. I had to sit 2 driving tests and still have an assessment to support me to build up my confidence and skills for getting on and off the buses.

I also invested in a heat pad which is big enough to fit accross the shoulders in width and down to just below the waist in lenth. It runs for 90 mins and I can highly recommend it. It has I confess replaced my wheat bag and is doing a better job as the heat is constant and you can feel it going deep into the muscles.

Good wishes to all

Christine xx
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generalised dystonia with pains around the spine 1 year 6 months ago #3992

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Hi Christine
I'm pleased to hear your power chair helps you, that's great news. I can understand what you mean about the emotional side. It sounds as though in time you will adjust. Really good to hear your pain has reduced so much. Well done for taking this step. Please can you tell me more about the heat pad you have mentioned. My wheat bag goes in the microwave several times a day. I feel like I couldn't live without it.
I hope you enjoy your new freedom as your confidence increases.
All the very best to you. Cat
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generalised dystonia with pains around the spine 1 year 6 months ago #3993

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am pretty sure that we can not mention names on here so google medical heat pads and the make I have chosen matches my massage seat which is made in Germany and starts with B. When am having a bad time I have the chair on up to 3/4 times a day. You can feel the knots in your muscles and I wont lie when you start there is a level of pain. I can actually feel my muscle knot crack in the way some people can crack knuckles and thats the discomfort am talking about but it is so good when you can get an over stretched muscle to crack. When the muscle is stretched out the massage becomes a pleasure and a good sleep at night. The heat pad melts the pain away and because it is consistent heat you can feel the pain relief going deep into the muscles. I just love not depending too much on chemicals because it means when I need them they really work. Oh I should have said the chair is shiatsu massage and it is a deep massage.

Let me know how you get on.

Christine x
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generalised dystonia with pains around the spine 1 year 6 months ago #3997

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wee update!..... attended a homeopathic physio today. It was an interesting session and the outcome was that he managed to take some of the spasms from my intercostal muscles...involved strange popping noises and sensations! but then told me that my sternum or breast bone is now twisting with the intercostal spasms.

Treatment was great but a wee bit sore now. I would be interested to hear if anyone else has had this experience.

Christine x
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