Chronic illness and exercise frustrations

Hi

I have mild to moderate ME/CFS where exercising for my condition is contraindicated. I used to be a dancer, martial artist and gym goer. Now I sit and crochet. I do make sure I walk where I can to try and keep my heart healthy but I have put on so much weight despite a love of healthy food. I would love to see a forum or group here that supports people where exercise has to be rationed. Is there anyone out there like me? Can we build a tribe to support each other? Love to hear you stories!

Take care of yourself

Jo

Replies

  • kshama2001
    kshama2001 Posts: 27,897 Member
    I have MCS which has some overlap with CFS. What helped me was first reading The Brain That Changes Itself: Stories of Personal Triumph from the Frontiers of Brain Science and then taking a Dynamic Neural Retraining workshop. Some of the attendees had CFS and were helped by this.

    The book and the workshop aren't by the same person - reading the book let me see the potential in the workshop. The book is available in my library system, so perhaps yours as well.

    Meanwhile, do exercise as your body allows.
  • lorrpb
    lorrpb Posts: 11,464 Member
    Would seated exercise work for you? There is a show on PBS "Sit and Be Fit" and many seated exercises on google & you tube.
  • roobella
    roobella Posts: 59 Member
    I have cfs as well
    I try to squeeze in the odd bit of cycling or swimming in blocks of 20 to 30mins when I have a brief burst of energy
    I walk most places as its exercise which is gentle on you overall. Then zonk out at night and chill
  • Raegold
    Raegold Posts: 191 Member
    Just wanted to offer some support, even though we aren't totally in the same boat... I had a traumatic pelvic injury during my daughter's birth 7 years ago, and I have big set backs a couple times a year where I have to go back to PT and can't exercise. It's really hard and I get down about it, and very frustrated. It's hard to not have control. I do gain weight during those times, and just overall feel crappy in my body plus having the pain. I'd definitely contribute to some sort of group for people with chronic illness/injuries
  • laugarkitty
    laugarkitty Posts: 7 Member
    Thanks everyone. I am going to try some of the things suggested and will try and stay positive. It is good to know I am not on my own!
  • kshama2001
    kshama2001 Posts: 27,897 Member
    I heard this on the radio recently and thought of this thread. Might be helpful for those having difficulty getting a proper diagnosis.

    Note: text is just an excerpt of the audio segment.

    https://www.capeandislands.org/post/thousands-studies-paint-new-picture-chronic-fatigue-syndrome
  • jwarr114
    jwarr114 Posts: 2 Member
    Hi there. I have psoriatic arthritis and I definitely have limitations off and on with exercise. I totally understand your frustration and wanted to let you know you are not alone
  • momof3gdn
    momof3gdn Posts: 10 Member
    Hello! Dee here mother of 3. Would love to lose for health reasons primarily. Been into fad diets and yo-yo diets then gained back. I was 50 lbs lighter 6 years ago when I diet but gained it all back after having another baby and now I’m struggling to lose it.

    I am at 195 lbs would want to go down to 140 lbs I need help and my body isn’t what it used to be I feel tired and weak and have been having chronic back pains I have hypertension and Pre diabetic and feel depressed . I have been having issues with my kidney as well so too much red meat is not allowed.

    I have been struggling and don’t know how to start again. I need to be motivated and fast!!!
  • peggy_polenta
    peggy_polenta Posts: 310 Member
    if you think a Sit and Fit would help you....the Alzheimer's Association does a Sit and Fit at my local gym. They rent the back room and an instructor from AA comes in for 2 sessions a week and anyone can attend by giving a nominal donation for the session. you do not have to be a member of the gym to attend. Perhaps there is something similar in your area? or check with your local nursing homes to see if they know of anything like this anywhere ...
  • Im abit late here but i have M.E and i dont go a day without pain and tierdness, i have to take glucose supplements to stay awake the majority of the day but i do swimming as its gentle and causes less pain to me and i do seated resistance training and its been working for me for a year now even though im constantly tierd and in pain its also about having the right fame of mind to push through it all x
  • Anya_000
    Anya_000 Posts: 723 Member
    I've had CFS for over 20 years, and like you, was a dancer, and athletic person. This might be different for you, but aerobic activity really seems to trigger my CFS, especially when I'm going through a bad period. What I've been able to get away with is weight lifting. It isn't aerobic, so it doesn't exacerbate the CFS, but it does keep you strong and increases muscle mass. I just do a few lifts, or squats, usually big muscle groups. I don't work up a sweat, I rest between lift.

    Keep trying different things, and as you know, baby steps. It was a lot of trial and error for me to find something that worked. I was so demoralized, and it took years, but I'm fairly functional now. I had been bedfast, and now I work, and lift weight 2 days a weeks. That's huge for me. I wish you the best of luck. I know how hard it is.
  • cheryldumais
    cheryldumais Posts: 1,907 Member
    I've had CFS for a long, long time. Losing weight and beginning a very gradual walking program has improved my symptoms a great deal. I started out walking 4,000 steps a day in two lots of 2,000. I can now walk as much as 15,000 if I'm careful. It's not vigorous exercise but I feel so much better! Don't give up, there is a chance of feeling better.
  • IAmGainingHealth
    IAmGainingHealth Posts: 18 Member
    I am willing to be in your tribe.

    The Mayo Clinic PRC taught that we tend to push and crash.

    I have started a SMART goals note book where I begin with goals that I know I can beat and gradually increase challenge.