Physiotherapy
- Thread starter ithought
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SOC
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What country you live in might make a difference in the best approach to this situation. Do you mind telling us where you live?
taniaaust1
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Simply I suggest to refuse to do anything they suggest which u know will be harmful to you. Im a bit currently in the same boat.
Ive had physio for the ME in the past which did me far more harm then good.. I only did ONE session, it was so bad I never went back.. I was left after it unable to use my hands after it for the rest of the day/night, she'd got me doing stuff with gardening in the community garden at the hospital.. sitting on ground cutting a few things with secretars and after that.. my hands were stuffed and spasming so bad I couldnt even eat properly that night with a fork!. The physios first exercise she gave me (I had just come out from being long term bedbound so was terribly weak in all my muscles).. injured me too.. I felt like I tore a muscle in my stomach or something as she got me to do a half push up which then sent me into pain.
Im now dealing with the states disability service and I had to see a physio for a wheelchair referal.. that went good but that wasnt about trying to give me physio. It appears they now want to send me to a physio for physio for the ME (I sent the physio a letter saying I was injured and made worst last time I had physio for ME). I dont know yet what is going to happen with this... but all I know from my past experiences is that this time I WILL NOT be allowing myself to be pushed into doing what I know isnt good for me. (I think I need thou more physio assessment as Im currently trying to get more home support... quite possibly they will use a refusal from me to do anything suggested by a physio to keep knocking back giving me more home support hours)..but yeah..state disability service (Sth Australia) has damaged my health too much already by its neglect of my condition and me so there is no way Im going to something I know which will be bad for me. Im currently in the process of going throu legal channels over mistreatment of state disability service.
Look after yourself!
Ive had physio for the ME in the past which did me far more harm then good.. I only did ONE session, it was so bad I never went back.. I was left after it unable to use my hands after it for the rest of the day/night, she'd got me doing stuff with gardening in the community garden at the hospital.. sitting on ground cutting a few things with secretars and after that.. my hands were stuffed and spasming so bad I couldnt even eat properly that night with a fork!. The physios first exercise she gave me (I had just come out from being long term bedbound so was terribly weak in all my muscles).. injured me too.. I felt like I tore a muscle in my stomach or something as she got me to do a half push up which then sent me into pain.
Im now dealing with the states disability service and I had to see a physio for a wheelchair referal.. that went good but that wasnt about trying to give me physio. It appears they now want to send me to a physio for physio for the ME (I sent the physio a letter saying I was injured and made worst last time I had physio for ME). I dont know yet what is going to happen with this... but all I know from my past experiences is that this time I WILL NOT be allowing myself to be pushed into doing what I know isnt good for me. (I think I need thou more physio assessment as Im currently trying to get more home support... quite possibly they will use a refusal from me to do anything suggested by a physio to keep knocking back giving me more home support hours)..but yeah..state disability service (Sth Australia) has damaged my health too much already by its neglect of my condition and me so there is no way Im going to something I know which will be bad for me. Im currently in the process of going throu legal channels over mistreatment of state disability service.
Look after yourself!
They might have suggestions about how to do essential things more efficiently, which could be useful.
If they want you to start doing structured exercises (walking, stationary bicycle, etc) or anything aimed at increased activity, then it's a GET program. In that case I'd recommend staggering away as quickly as possible.
And it probably is part of a CBT/GET program. I don't think physios are ever involved with ME/CFS patients in a constructive manner, aside from some research going on in the US regarding PEM.
Prynhawn da, ithought, and welcome!
I also live in Wales. I have no idea what the physio is like in your area we don't have a service here at all, but I have heard of other physios helping with adaptation requirements for the home in other parts of the UK.
I would suggest meeting them and asking them what their approach is, what they can offer you and then tell them what you would like help with - which for severe M.E is mainly going to be mobility aids I imagine.
If their approach is to get you moving and 'on your feet; with rehabilitive exercises then I would politely decline any firther appointments - unless they look open to ideas - someone on PR said they were going to print off the agenda for the Invest inM.E conference this year to at least show GPs etc so they can see how far M.E has come (in other parts of the world!) and perhaps it is worth asking them to consider this approach of helping.
Yachi da!
Justy
I also live in Wales. I have no idea what the physio is like in your area we don't have a service here at all, but I have heard of other physios helping with adaptation requirements for the home in other parts of the UK.
I would suggest meeting them and asking them what their approach is, what they can offer you and then tell them what you would like help with - which for severe M.E is mainly going to be mobility aids I imagine.
If their approach is to get you moving and 'on your feet; with rehabilitive exercises then I would politely decline any firther appointments - unless they look open to ideas - someone on PR said they were going to print off the agenda for the Invest inM.E conference this year to at least show GPs etc so they can see how far M.E has come (in other parts of the world!) and perhaps it is worth asking them to consider this approach of helping.
Yachi da!
Justy
I got my physio after developing acute calcific tendinitis in my shoulder, and she turned out to be great with ME as well. Try ringing the practice and asking if they have any physios specialising in ME, and if you can find out what their approach is. Mine said that my level of activity was already quite high enough, just getting around the flat was enough, so she didn't prescribe exercises for that. The exercises she prescribed for my shoulder took into consideration the ME, so they were very gentle.
This is where we are up to and thanks for all your replies. The physio is aimed at me not deteriating any more, and isn't rehabilitation as I don't need that. I do what I can when I can all ready but there is serious muscle wastage problems developing and drop foot - where you can't put your foot flat on the ground.
There isn't any specialist services here for ME - north wales, this physio is from the local hospital and he seems ok. And did listen to me when he came out.
Just waiting now to see what happens as the supervisor for my carers who normally organises carer training is off with a bad back so it's going to be a few weeks before the physio can advise them. It's passive movements and only when I feel up to it... And yes help with moving me safely.
There isn't any specialist services here for ME - north wales, this physio is from the local hospital and he seems ok. And did listen to me when he came out.
Just waiting now to see what happens as the supervisor for my carers who normally organises carer training is off with a bad back so it's going to be a few weeks before the physio can advise them. It's passive movements and only when I feel up to it... And yes help with moving me safely.
Drop foot is present in some nasty and recognized disease, but not something I've heard about with ME patients. Have other diagnoses been ruled out properly?
Just thought would feed back as it's been a while. He is working mainly on my left side which is more badly damaged by neuropathy and I am very slowly getting more useage back in it. If I am not well enough it's not a problem and he is pleased with me. Were applying the 'I can do what I can when I can approach' He has even supported my need for an electric wheelchair.
After three decades it's refreshing to get someone who is listening to me and supporting me.
After three decades it's refreshing to get someone who is listening to me and supporting me.