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Update on ME/CFS and a question (please read to end even though it is a ramble)

Posted , 8 users are following.

balletdude
balletdude

hi all. Just a quick up date, I attended an appointment in the CFS clinic in the Endocrine dept, after examination etc, she prescribed graded physiotherapy. My GP and physio, have said it's 99% confirmed that it's ME, though no clinic letter saying this though I have got an appointment in June to see the consultant. Not really had any change in symptoms, apart from increased leg/nerve pain. I manage i-2 dance classes a week for excercise, though can never do all of it. On Wednesday I tried a jumping excercise, which I used to be ok at, but I think the brain fog got the better of me, I landed funny, fell and fractured my wrist. Just in a lot of pain from it now, and the weight of the cast is not good. Sleeping more, but on and off through the day, im sleeping at night ( I have a lot of problems with restless legs as I've said) but I think the sheer exhaustion of carrying the cast, and everything is just flattening me. My biggest concern is with my physio excercises, I was started on pacing, but obviously it's a lot harder to do things at the moment, and don't want to have the ME symptoms deteriorate. Not a diagnosis or anything, just if anyone has experience of pacing, but not able to do the prescribed exercises because of injury etc, I love to know if you've got any ideas.  I've got a physiotherapist appointment in June, but my physio is hard to reach as he only works 1 day a week. 

Simon

0 likes, 12 replies

12 Replies

  • Beverley_01
    Beverley_01 balletdude

    Posted

    Hi there,

    Perservere ringing the pyhsio if you can't get in touch, turn up and show them the cast. My physio refused to see me because of the CFS/me. I turned up exhausted and tearful on the third visit and she was a bit rude with me and said I should consider psychotherapy instead ! I couldn't maintain doing the exercises, didn't remember what to do or was too exhausted so discharged. I was referred for pain.

    Can't comment on the pacing exercises. Yoga helped in the past but 've not able to attend classes in a year.

    Try to rest as much as you can while you're in the cast and eat well. I fractured my wrist years ago before CFS/me and It's a bind without the extra symptoms!

    Beverley

    • balletdude
      balletdude Beverley_01

      Posted

      I've I've left him a message. It's mainly that I don't want to turn up for the session, at the nod of the month saying, I've not t been able to do x y z because

      i do a couple of ballet classes a week, usually miss the jumps and the fast stuff (though last weeks was gentle resulting in me trying it and falling, my concentration been off a bit so maybe a bit of brain fog.) and just do the more gentle exercises it tires me out, but It makes me feel I've done something. I worry missing class now is going to impact. Before this started I was dancing nearly 11 hours a week, but it's slowly reduced to 2  spread out over the week. So reall is a big reduction 

    • Beverley_01
      Beverley_01 balletdude

      Posted

      I know it's hard not to compare yourself to what we were, I used to walk 30 miles a week pre CFS/me and I can't really do much at all right now. Don't give up hope but, take things gently and if ballet is your passion, get back into it slowly. I ''ve had a few years getting used to the condition and remain hopeful that I 'll improve and I try not to feel too disappointed when I'm not able to do things.

      Good luck with the cast

      Beverley

  • sally_14743
    sally_14743 balletdude

    Posted

    Hi 

    so sorry you have a fractured wrist.

    pacing is imagining you have 10 coins of energy a day and about accessing your life and only using 10 coins of energy a day not 12 then suffering the next day . As using more than 10 means you never recover ..using 10 means your body starts to improve ..graded exercise goes hand in hand as it means you only do exercise you can do within your 10 coins.

    the expertise is they don't say you can't dance it's causing you to crash after each class they suggest how you can dance without using more than 10 coins..

    for my hubby who has had a major relapse due to sepsis..

    it has been find your base line where you chug along don't dive worse one day etc..this base line is barely walking ..using a pusher for when his legs give way etc..now we have purchased a mobility scooter ..excellent..then the graded exercise is increasing by 10 percent a month ..so if u walk for 5 mins twice a week increase after a month to 5 min 30 sec etc etc ..It's  not what the press try and scare people with ..its grading or marking your everyday activities adjusting them so you find your base line then pacing then Gradually improving...

    my hubby did it before and was really improving it does work he was walking , daily thinking about part time work and then sepsis and a hospital stay have made him far worse but he knows if he follows the strategies he will improve ..

    hope that helps ..sally

    • balletdude
      balletdude sally_14743

      Posted

      Thanks, I've been doing the graded exercises for the last few weeks, but the fact of got the cast on, makes it hard to do certain things, so just worried I can't complete the exercises.  

  • KPD
    KPD balletdude

    Posted

    So sorry to hear that you fractured you wrist, balletdude. I wouldn't do anything that could cause further injury to your wrist. I would allow your wrist to heal before you start prescribed exercises. Or only do those that are not painful or that involve your injury. 

    I'm a big believer in keeping the body and mind healthy by doing light to moderate exercise, but I only do what I'm able to do. I never push myself they way I used to before I had CFS/ME. My exercise program involves light to moderate intensity walking or jogging for 20-30 minutes and along with the use of free weights to strengthen the muscles. 

    Let your body dictate what you are able to do at this time. Hope that helps. KPD

  • Fidd
    Fidd balletdude

    Posted

    There's a lot of quackery around the promoting of graded exercise for ME/CFS. There was a recent article in the New york Times titled 'Getting It Wrong on Chronic Fatigue Syndrome?' that could be a worthwhile intro. Things are particularly bad in the UK, where this approach is tied to generally unpleasent attitudes to those with health problems (we were condemned by a UN report for violating the rights of disabled people last year). Dr Simon Duffy had an article on this titled 'The Misleading Research at the Heart of Disability Cuts' which could be worth a look.

  • balletdude
    balletdude

    Posted

    Thank you every one, it's exhausting enough on a good day, now with the added weight of a cast, even more so

  • wknight
    wknight balletdude

    Posted

    I am now almost feeling normal after battling CFS for about 8 years and i did it all via pacing. I can now participate in strong severe activity like track cycling and not feel bad the next day. 

    I did it all myself, gave up with the private help I was paying for in the UK and the NHS doesn't help much here. Its so easy to do yourself.

    As a previous poster said imagine how much energy you have available. The key is to findout how much you can do without feeling bad. This means learning to say NO a lot and just rest. Once you find that baseline then you very,very slowly start to increase your activity and I mean SLOWLY. It takes ages and ages but it worked for me. After 2 years I am now feeling great again.

    Best of luck  

    • KPD
      KPD wknight

      Posted

      That's great to hear wknight! Can you tell me more about how you recovered from CFS? I would love hearing the details if you have time.

      I also excercise moderately. On some days it helps, and other days it makes things worse. Thanks, KPD

    • wknight
      wknight KPD

      Posted

      I stopped doing everything and managed my day doing everything in small steps. My GP suggested 30mins complete rest (I got a yoga map and use to lie on the floor) and then 15mins doing things. When I did things I was always very careful about not straining or stressing myself. 

      I learnt to say NO a lot. That was the hardest but reaped the most rewards in the long term. You seriously have to determine how much you can do without causing any problems and stick to that. So do it for 5 days and if you don't feel bad then you are making progress.

      Once you have that baseline its a case of very small steps. Just doing a little bit more one day and that back to what doesn't cause a problem the next day. Its like learning to run a marathon, everything is very small steps. 

      Does that help?

    • KPD
      KPD wknight

      Posted

      Sounds a lot like the way I manage my illness, except that I'm not 100% back to normal. I basically can do about 50% of what I used to do.

      On good days, I can do more, but then I usually end up paying the price.

      Like you, I have learned to say "no" a lot. I guess you could say that I'm very selective these days. Thanks for your reply. Glad to hear that you have recoverd! KPD

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