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Physical Therapy - has it helped anyone?

Discussion in 'General Treatment' started by Hopeful_In_San_Francisco, May 17, 2016.

  1. Hopeful_In_San_Francisco

    Hopeful_In_San_Francisco

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    I wanted to see if physical therapy (in conjunction with other treatment) has helped anyone with CF/ME? If so, what did you do? I would love to find something that helped & my insurance would cover. THX!

    I am just shy of 39 and had CF/ME for 2.5 long years. I have been a patient at the Open Medicine Institute since November 2015, after getting no help from Holtorf, UCSF & Mayo Clinic Scottsdale.
     
    Last edited: May 17, 2016
  2. Richard7

    Richard7 Senior Member

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    I am not sure if this is the same thing.

    I get remedial massage every 3 weeks. It is from someone with a masters in muscular skeletal management and she does the usual manipulations and occasionally point out how I am holding myself in the wrong posture, or walking the wrong way.

    Sometimes, when I am doing relatively well she gives me exercises to work on my left knee or to help ensure that I am using my feet properly or holding my shoulders in a way that allows my lungs to move more freely etc.

    It is n=1 but she helps a lot when I have problems with some muscle being too tight, pain and problems with shoulders or hips or neck or legs etc that just don't seem to be moving the way they should.

    At times she has I think been a little too keen on exercise and has encouraged me to do too much, but on the whole is a good person to talk through the aches and pains etc with.
     
  3. Hutan

    Hutan Senior Member

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    I got ME/CFS about a month after moving from Asia to Australia. Prior to that I had done pilates for years and really enjoyed it for how it made my body strong. In the early times of the illness, I had no idea what was going on and didn't fully understand how my activity levels affected my health. After about a year of the illness, I was feeling rather better and so thought some gentle pilates might help me get strong again.

    I found a pilates studio that offered a ratio of one trainer to one exerciser with all of the trainers being qualified osteopaths and experienced pilates instructors. They initially measured my muscle strength and balance (which actually wasn't bad - not deconditioned at all.... I did two 30 minute sessions per week. The trainers were great, working around my pains and other problems. But over time, rather than get stronger, I actually got worse as objectively measured by the trainers.

    My symptoms of orthostatic intolerance got worse. I would feel nauseous and dizzy getting up and down from the reformer bed. After a while, I was walking the 15 minutes to the studio, sitting on a chair feeling as if I was going to vomit and then saying goodbye and walking home again to lie down on my bed. I constantly felt embarrassed about my lack of ability to exercise.

    Each pilates session was knocking me out for about three days, with migraines and making every subsequent activity one that I had to use a great deal of willpower to complete. I persevered with the pilates much longer than I should have. I tried spacing out the sessions more in the week. I tried one session a week. I cried when I stopped for good, because of what giving up meant.

    All this is to say, I can't imagine a more gentle tailored formal exercise than what I did (aside from things like stretching in a chair or in bed). But it still did not help me recover and actually made getting through the activities of daily life much harder.

    If you are only mildly affected and don't have significant work or family responsibilities, then perhaps pilates or yoga done with a sympathetic trainer would be good. But I think you must be vigilant about checking whether it is doing you more harm than good.
     
  4. taniaaust1

    taniaaust1 Senior Member

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    I personally found physio therapy harmful when done for ME/CFS itself.

    I sought out a physio therapist on advice to safely strengthen myself after going from bedbound for 9mths to improving and being out of bed. Cause I hadnt been active at all for a long time (hadnt been able to walk at all much of the time), I was worried I'd do myself an injury so sought out what was supposively a safe physio (one who I was told had previous experience with a few previous ones who had ME/CFS or I would of never gone to one).

    Anyway, instead of giving me a safe way to strengthen myself, her exercises which would of been no issues for a normal person going from bedbound to doing things again, proved very bad for me. With the very first exercise she had me do (which was like a half sit up), I hurt myself within the first few.. it felt like I'd actually torn a muscle in my abdomen so went into bad pain.

    Second thing she did is she had me join a weekly physio therapy group where they did a little bit of gardening at the hospital (it was also a social thing for people where we all had lunch together after each physio session, it was thought a little bit of socialisation would be good for me too). I went once only as it made me much worst.

    I went to the group able too use my hands and left that day unable to use my hands so was struggling to even drive home. At the end of the rehab session (which she had me sit on the ground and try to cut back a few little plants to my own limit) when it came time for then lunch, I couldnt even then eat properly with the fork. My hands had gone into severe spasming to the point my food was ending up with spasms being thrown all over the table. (the people sitting around me, I almost covered them with food).

    It was soo embarrassing, I cant remember now, I may of started crying. I remember she had to comfort me but she had no idea at all it was her telling me to try to do some of that gardening which had caused me to end up not being able to use my hands. With my hands spasms and food going everywhere, she goes "dont worry, many at this table have problems".

    Sadly due to me not being able to get a safe exercise program from her to slowly strengthen myself, I ended up injuring my back only weeks later (I was still very weak from having been bedridden and my back muscles were finding it hard to support myself well) and hence when picking up a small brick, I ended up in hospital for a week unable to move at all due to my back

    (till aftter a near week in hospital, nurses tried to get me to get up to go to loo causing me to faint in back pain and crash to the floor unconscious which actually put my back back in otherwise who knows where I would be today with that, I'd hurt my back to the point I hadnt been able to bend it at all or twist it!).
    ...

    and tai chi did me more harm then good, I was doing tai chi for a couple of years before I got ME/CFS and tried to continue it on getting sick. Then one day during one of these sessions, I suddenly developed a massive knot in my back which was then there for a very long time and painful in that place. I had to have then weekly massage sessions for almost a year (it may of been longer) to try to loosen and break the knot down.

    So i strongly suggest that if you have canadian defined ME, to avoid physio for ME, a good outcome from this isnt likely. A suitable physio for us would have to be highly experienced with dealing with people with this (not someone who has just helped a few of us as things can too easily go wrong. I really did need physio after going from bedbound to being able to get out of bed again but simply no one out there with the right experience dealing with severe ME patients).
     
    Last edited: May 17, 2016
  5. Richard7

    Richard7 Senior Member

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    The sorts of exercise that I think are useful are not really like that.

    One example is that I do an exercise where I balance on one foot in a normal walking pose, move the other foot forwards and back a few times and then step it slightly back, so that my toes touch the ground and then press the heel down, and then let the knee hang down and move it back and forth with my hand.

    I then do the same with the other foot. It is meant to help put my hip and knee joints where they are meant to be. The muscles on the inside side of my left calf and foot do not seem to engage properly, and this exercise seems to help, when I am well enough to do it.

    I have had the other problem too, of being encouraged to do things that I really could not do safely.
     
  6. Sushi

    Sushi Senior Member Albuquerque

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    I find physical therapy helpful for the manifestations of Ehlers-Danlos Syndrome but not for ME/CFS itself--it has no effect whatsoever on my ME/CFS symptoms.
     
  7. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    Unless you have a specific injury or specific muscle problem, it's doubtful that physical therapy will help.

    I recall a study that showed that regular massage therapy helped FM patients sleep better though. Are you sore and tight all over?
     
  8. *GG*

    *GG* Senior Member

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    Well, I think if you are already pushing yourself and you are doing PT that requires heavy "lifting", energy use, it could make you worse! I was doing PT when I crashed in 2009.

    I was also working, and probably doing a little exercise around the same time. I probably pushed myself to much and precipitated the crash? Or maybe I was just on a downward trend at the time, and was going to crash anyways? Hard to say with this illness.

    GG
     
  9. Valentijn

    Valentijn Senior Member

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    The research has shown that exercise therapies don't help ME/CFS patients to become more active. Most patients also report that such programs make them sicker, sometimes permanently, in large polls conducted by ME/CFS charities.

    Pacing is much more useful, especially with a heart rate monitor to show you when your heart rate goes too high during normal activities, or from standing too long.
     
  10. moblet

    moblet Unknown Quantity

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    Somewhere in Australia
    Of the physical therapies cranial osteopathy would be the one most likely to help, and in your country it's a medical specialisation and presumably covered by regular medical insurance. Here's an informative site of a clinic in the SF area. You can find other practitioners at http://cranialacademy.org/
     
  11. Hopeful_In_San_Francisco

    Hopeful_In_San_Francisco

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    All, thanks for the comments! I was thinking about something along the lines as someone helping me stretch, def not cardio. I really enjoyed yin yoga, but I can not afford the private sessions anymore (as this illness drags on), so I was hoping to find something to help with my flexability & stiffness that ideally my insurance could help pay.
     
  12. panckage

    panckage Senior Member

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    I haven't had physio specificly but I've done a lot of exercise on my own... wished I had a physio!

    Anyways for me the exercise really helped to reverse deconditioning. I think that would be the main benefit of doing physio (assuming you are well enough)
     
  13. Sushi

    Sushi Senior Member Albuquerque

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    Physio is not necessarily exercise. My PT taught me a lot about body mechanics and the things I was doing that led to problems. She also was able to "put me back into alignment" when I was out. She did give me simple things to do at home but they weren't really in the category of exercise--more like teaching my brain and body to connect better.
     
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  14. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    But if you do have a specific injury or specific muscle problem, I highly recommend PT. As with anything, you need to pace so that you do not give yourself PEM while doing it. There are probably some severely ill people who would not be able to do PT at all.

    For me, it takes an annoyingly long time to get through it without pushing my heart rate too high. I don't think any of my 'exercises' would be considered aerobic.
     
    panckage and Valentijn like this.

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