Same title...different treatment necessary?

Discussion in 'Fibromyalgia Main Forum' started by shelbo, Feb 8, 2006.

  1. shelbo

    shelbo New Member

    I am on this Graded Exercise Programme (which, to be honest with you, is NOT working for me) and one of the problems that I have with this is that the nurse who runs the group sessions keeps harking on about our bodies being deconditioned as a result of CFS and acting as if the GET treatment is a sort of one-size-fits-all! She says it doesn't matter how you got to have CFS (and there are many causes), the treatment is the same and works!

    We may have the same symptoms etc and we may have the same diagnosis as each other but I can't see how if the causes are so varied how the treatments aren't as varied too?

    Does any one get what I mean and have any input? I have not been to my last two group sessions as the nurse seems to completely dismiss my chemical sensitivity which drives me mad...when I try to tell her about it and the impact it has on my ability to function, go places, attend the group etc, she says, in a really condescending and patronising way' "Michelle, it's really important that you HEAR me..' and then prattles on about how as I build my strength up through her daily exercise technique (riding a stationary bike) I will start to notice my sensitivity to things less! What?! This woman gets under my skin. It's like she thinks she has all the answers and that I don't want to get well or something.

    Any one, any thoughts on the multiple causes, multiple treatments theory I have as opposed to the multiple causes, one treatment theory this nurse proposes?

    The way I look at it if a person's chronic fatigue is caused by an undiagnosed gluten allergy, no amount of riding a bloody bike is gonna cure them...get what I mean?

    Likewise, I am never going to be able to go into, say, a bathroom in a building where air freshener has been sprayed, without negative consequences for my health...I am never going to be able to spend long periods in a gas central heated building or air-conditioned building without feeling very amount of graded exercise is gonna change that, whatever she thinks!

    If I were to be totally cured of my sensitivities I could only attribute it to a miracle from God.

    Sorry for the rant...I'm just annoyed at the ignorance and short-sightedness of many so-called health professionals!

    Would love to hear from any one else who has been on the GET programme.

    As much as I do want to get well, I really resent it and only plan to continue in case I get a hard time with benefits for not going!
    Love Shelbo
  2. claudiaw

    claudiaw New Member

    MY name is Claudia. I am new here. I have had FM for about 10yrs. I was diagnosed 3 yrs. ago. I have seen many doctors, who all had varying opinions on my condtion. Many were insensitive and rude. I also have seen a number of physical therapists, some of which I had to stop seeing because they wre determined to do procedures or treatments that made me worse. They would say this is good for FM, but I would tell them, well it's not good for me! Many people in the professional field ( even though they may mean well) tend to put everyone in a box. If you have this or that condition then they feel you need "this" treatment or "this" medication. Everyone is different! Two people can have exactly the same condition and feel totally different. I talk with many FM suffers, who still work, go to the gym, go dancing, etc. I have not been able to work for over a year, cannot drive, cook or do housework. Thank God for my wonderful husband. Anyway, sorry this is so long. I said all that to say. If I have learned anything throgh this. I have learned you have to listen to your body. If your doctor, therapist or whoever is not listening then find someone who will. You are an individual and they need to treat you like one. Anyway I can't type too much ,as it tightens up my neck and shoulders. I hope you find the right people to help you regain your health. Good luck.:)
  3. Smiffy

    Smiffy Member

    One of the major British M.E. (CFS) charities has called Graded Exercise Programmes a 'form of torture' that makes amny sufferers much worse. I understand that these poor people are then told that they are not doing the programme properly! (yeah right).

    This nonsense is run by psychologists who have a vested interest in M.E./CFS being 'all in our heads'. A huge BOO to them! Unfortunately this rubbish is the only provision that the British government is making for us.

    My advice to you is DON'T GO. If you want to exercise, some simple stretching exercises when you are having a better day might be much more beneficial, or some yoga if you can manage it.

    hugs to you for having been put through this nasty experience xxx
  4. fivesue

    fivesue New Member

    Hey, Shelbo!

    You're right. If you have chemical sensitivities, pedaling a bike isn't going to help. Sheesh! I'm with Smiffy...don't go. Do what you can do.

    I tried an exercise class for "Beginners and Seniors" on Monday. I could only do half of it and came home only to be in bed all day Tuesday and not far from it today. I have a routine I do here at home that seems to work for me, so you really have to be careful. This disease is so individualized as is every disease.

    You really don't need that bull-headed nurse telling you something you know to be untrue.

    Heads up! You have a good head and you know what is good for your body.

  5. Smiffy

    Smiffy Member

    I meant many sufferers, not amny sufferers.
  6. shelbo

    shelbo New Member

    You're right...I need to listen to my body even if a puffed-up nurse thinks she knows best!
    Love Shelbo
  7. Rosiebud

    Rosiebud New Member

    Smiffy is right.

    I've seen several results on graded exercise and on each one it's been shown that a higher percentage of people have actually worsened than have been helped.

    If my GP wanted to send me on that, I would refuse.

    Any kind of exercise hurts me and give me post exertional malaise.


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