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TOPIC: generalised dystonia with pains around the spine

generalised dystonia with pains around the spine 3 years 5 months ago #3209

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Does anyone have problems with the spine? I have generalised dystonia and recently I have developed pain in my spine that is difficult to manage. I have problems standing and walking and if I do not rest the pain just builds up and up until painkillers just do not touch it. I had my spine scanned 2 weeks ago but I do not have the results as yet. My GP thinks it is dystonia but the usual meds are not working any suggestions? am open to all opinions or tips for managing this..
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generalised dystonia with pains around the spine 2 years 7 months ago #3625

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I have what I call back muscle spasms. Agonising pain along my spine on my left side. Codeine only very slightly helps. Putting a very hot wheat bag on my back helps. It burns my skin but it takes away the agony temporarily. Pain wakes me up at night. Last year I had only a couple of short episodes, this year since mid January it's been flaring up and down. I have been referred to pain management but they have long waiting list. I work which although is a good distraction fatigue makes pain worse. For me it seems to be a dystonia symptom. It's the unpredictability of it which is difficult. It's often worse when I am not working at weekends. Too much time resting makes it worse and doing too much also makes it worse. I feel most people don't understand.
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generalised dystonia with pains around the spine 2 years 7 months ago #3627

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Thank you so much for sharing your story I thought I was going mad! I have started learning Tai chi and found that to be very good for pain management. I am off my work with this at present and have been looking at ways to manage the pain. I found a Genie pillow raiser and treated myself it is amazing it basically sets your own bed in the same way as a hospital bed can be set, in short it changes your own bed into a much better support for the spine. I have also found a spine support and I am on day 4 of trying this out as you are quite right there is no pain relief for this. I find the best thing is to try and make sure that your posture....at rest mostly but also when you are not at rest is correct. I have had this problem for some considerable time now and do find that if the posture thing is not prioritized it can lead to the vertebrae down the spine feeling like they have moved and it totally twists the body if you do not give in and rest when you need to. I to work full time and find this quite scary when it flares up and from time to time find myself considering a wheelchair. I have also had problems with altered sensations in my arms and legs when it has been at its worse. I also on one occasion found that it actually stopped my bladder from working and was hospitalized for this this, I find it is trial and error to manage it on a day to day basis but the bed raiser and the spine splint along with loads of rest works for me. Keep me posted I have just been referred back to the neuro physio to see if there is anything they can do.

Christine xx
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generalised dystonia with pains around the spine 2 years 7 months ago #3628

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Hi Christine
Thanks for your reply. Posture is something I can work on. It's tempting to slump on sofa after work, and even worse I often find myself falling asleep on sofa which doesn't help. I will look at the bed adaptation you mention. I have nerve problems with my feet and was diagnosed with small fibre peripheral neuropathy - I think I have the words in the right order. Bladder okay so far. I have recently started neuro physio again. My back has got worse but I don't think it's related to that.
Can I ask you, do you find it stressful when you are in pain/ tired and things need doing around the house?
Keep going, you aren't going mad. Thanks for taking time to tell me more about your situation. Cat x
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generalised dystonia with pains around the spine 2 years 7 months ago #3630

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Can I ask are you careful with the type of chair you sit in? I find I need a high back chair which allows my head to be supported and not swinging lose in spasm as it were. If thi is not the case I find that I have to hold my head up. I also because of the length of time I have had this find that my head does not sit properly I find myself from time to time throughout the day if I allow myself to get too tired my head flops backwards with no strength in the back of my neck meaning that I literally can not hold my own head up. I am working on a theory at present. I found that if lower down my spine is supported it takes the strain from my neck and helps with pain management. I found a spine splint which basically puts your shoulder blades into the correct position. I wear it for no more than an hour at a time. I had wrist splints which when I wore them forced my muscles and tendons into the right position and I found that it retrained my wrist back into its correct posture but at the start things got worse before they got better in that the splint made my muscles spasm against it and when the muscles couldnt go into the full spasm it passed to the next muscle up my arm. This basically had the effect of my elbow twitching as if I was going to dig some one with my elbow. I wore this for no more than an hour at a time and it did the job. I now wear it for long drives and jobs that are maybe a bit heavy. So I am hoping that the spine splint will do the same thing I hope it retrains the muscles in my upper back around the spine will be corrected. So far so good it is following the same pattern as the wrists in that I have low level spasms in places I did not know! but they give me a sensation like I am shoulder dancing and already there is short periods of time were pain management is much improved. I am going on the theory that my spine area can be really quite twisted and this has a knock on effect with other parts of the body which means quite a lot of pain and if I put the muscles back were they should be then improvement will be achievable

Do keep in touch and the house work question? My House is adapted and so is my housework routine. I have house work aids and find that I can not let the housework go or I have to get some help to catch it up. There are jobs I really struggle with like changing my bed, hoovering etc it puts too much strain on my spine and is too painful.

Take care
Christine x
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generalised dystonia with pains around the spine 1 year 8 months ago #3923

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A wee update on the back/spine problem!
I was amazed following an OT assessment at the hospital were I have now been assessed as in need of a specialist power chair with a permanent tilt and an option to recline the chair for pain management in my spine area. It would appear that for those of us who have back spasms that one of the spasms can be related to the intercostal muscles which are apparently attached to the vertebrae. So for me what feels like a 'kink' in my spine area is actually a spasm from an intercostal muscle which is pulling so hard it is pulling my back bone out of shape and makes me lean to the right. I only have around 20 to 30 mins activity before the spasms kick in and the only thing that clears it is to lay flat with my spine fully supported until the spasms clear and I have a straight back again. I then can get up and do whatever and so it goes on through out the day. I have 3 to 4 'kinks' in my spine at any given time and then I have a severe neck spasm which can be solid and hard to manage at times. I am hoping that the chair will give me more independence and freedom to get out the house.
Although this is nasty it is also yet another surprise from this condition. It just seems when you think that thats it and you now know and understand your condition out comes another twist to the story....in this case the twist is a literal twist LOL!

Hope all are well and that this helps someone out there.

Lots of love
christine x
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