Help educate a willing PT

Discussion in 'Fibromyalgia Main Forum' started by 28years, Apr 3, 2009.

  1. 28years

    28years New Member

    A physical therapist has been coming to my home the last week to give me physical therapy for my arthritic shoulder (nothing to do with CFIDS).

    During intake interview I told her that I had CFIDS. She had recently heard about what devastating disease it is because she had another client who also had CFIDS.

    I'm not sure what the situation was with the other client except that she was referred to a physical therapist after some kind of surgery. Anyway, my physical therapist only saw her twice because she was not able to handle the physical therapy.

    My physical therapist felt really bad that she was not able to help this other woman. She said that everything she tried made the woman worse.

    She was very pleased that I was able to tell her that CFIDS patients can only handle anaerobic exercises, and not much of that.

    Anyway, this physical therapist is very young and very eager to learn more about CFIDS and physical therapy.

    I tried to explain to her how the aerobic metabolism of CFIDS patients doesn't work right, and I tried to tell her a little bit about what was going on in the muscles of CFIDS patients.

    However I found out that I didn't remember as much about it as I thought I did. I tried to do an Internet search about it, but I'm lousy at Internet searches and I found nothing.

    This is a great chance to educate someone just starting out in their profession who wants very much to learn more about CFIDS. I would greatly appreciate any help you can give me with that.

    Specifically I'm thinking it would be great if I could give her an article on one or more of the following:

    -- exercise intolerance in CFIDS patients

    -- muscle metabolism and muscle physiology in CFIDS patients

    -- positive ways that physical therapy can help CFIDS patients

    -- anaerobic and aerobic exercise in CFIDS patients

    -- and anything else you think might be useful for physical therapist.

    Thank you so much for your help.
  2. AuntTammie

    AuntTammie New Member

    It's really great that you have a PT who is willing to learn and it's great that you want to educate her; however, I would caution you not to make it seem like all CFIDS patients are exactly the same. There are many similarities, but there are a lot of variances. There are also many day to day and even hour to hour differences in any single patient's abilities and symptoms. And, while most CFIDS patients cannot handle aerobic exercise, many can, but it has to be very modified (shorter duration, shorter intensity, longer rest time in between work outs). For those that can handle it, the long term conditioning benefits could outweigh the problems (as long as they are not overdoing it and making things worse). And for those that cannot exercise, forcing them to try can make things a lot worse. I think it really depends on the severity of the CFDIS, the length of time with it, and the person's previous level of conditioning (before getting sick).
  3. xchocoholic

    xchocoholic New Member

    I'd tell her about this website. It's a test for CFS fatigue and the associated PEM that occurs after excercising.

    If her patient is one of those who's daily activities cause fatigue or PEM, IMHO it's best not to stress out that patient trying to get her / him to excercise. I tried PT several times over the years and most of the time I had to cancel out because I was too tired to make it to the appt. The above test explains why. All it did was make me depressed about my condition.

    When I started walking normally back in 2006, I decided to try walking daily. I felt fine walking and did it for about a year, but I never saw any overall improvement. All my muscles were still going limp from time to time and I'm still trying to figure out what's doing this. From what I understand about CFS, more than likely by walking everyday, I was just aggravating my condition (CFS) by not allowing my body to detox between walks. That's a good way to trigger a relapse.

    The best solution for me is to stick to what I have to do to get by (cooking, cleaning, etc) and rest up for a couple of days after pushing myself to run errands. More than this and I get too wired but tired.

    HTH ... Marcia

    PS. I don't understand why but I just went through PT for OI (orthostatic intolerance) recently and I was ok except for some PEM. All of my excercises were done laying down. I even could ride the recumbent bike for 10 minutes without getting winded if I peddled very slowly. If I peddled too quickly, I got winded and my muscles went into spasm within 2 minutes. I didn't last 30 seconds in 1992 when I tried riding a bike.

    So if this patient has OI, excercises done slowly while laying down may be tolerated better. This keeps the blood from pooling in our abdomens and legs ... and increases oxygen and nutrients in our bodies.

    I wanted to add that for the most part, once my PEM is over, I have all my muscle strength back and can do whatever I want again. So, I don't get deconditioned while resting for a couple of days. I'm sure if the people in the above study had been retested they'd show that too ...

    [This Message was Edited on 04/04/2009]
  4. Forebearance

    Forebearance Member

    Hi 28 years,

    I have had physical therapy while I've had CFS. It began for something unrelated, but it turned out to be helpful to me.

    First I would say that a person has to be at a certain point of recovering before PT would be helpful. It's hard to describe where that point is, but as a patient you can feel it. You can feel that you have some small amount of energy for doing stuff like that.

    The PT created custom designed stretches and core-strengthening exercises for me that were very very gentle. They were adapted to my level of strength. Most of them were done lying down. I agree with Marcia that it works great to do PT things lying down.

    I loved my custom exercises and stretches. They kept me feeling alive and they helped me to recover my muscle strength that I had lost from being deconditioned from so many years of rest.

    My PT was great at creating a program for me. Where she faltered was in expecting me to do the exercises/stretches more than once a day, and to increase the amount of repetitions. I wasn't able to "improve" at the rate that a healthy person would. I was lucky if I could do the program once a day. And I was not ready to increase the number of reps of anything for a very long time.

    So eventually I realized that I had everything I needed from the PT, and that she was getting frustrated with me because I could not "improve" in my physical conditioning as quickly as she had hoped. So I stopped going to see her and just continued to do the program as I was able, at my own pace.

    So based on my experience, I would say that it was very helpful to see that PT for three or four sessions to figure out a custom designed workout for me. After that, continuing to see her just caused her frustration and me stress. I think maybe checking in with her every six months or once a year might be good, because then she could see a tiny bit of progress happening! lol

    My goal was not to use the PT to get well from CFS, but just to use it to keep from atrophying. I did yoga stretches as well.

    How about Dr. Myhill's website for info about mitochondria? I think she has written some things about them. Have you searched the PH Library here for articles on the subjects you want? It's a great resource.