Anyone else here with ME/CFS, chronic fatigue/ fibromyalgia?

ixchelkeshet
ixchelkeshet Posts: 36 Member
in Motivation and Support
I have had ME/CFS for years. I am functional, but have to rest a lot. I recently spent a long day moving things out of a storage unit. I took some time off and thought I had recovered. Then I started what I thought was a mild exercise program. But it seems to have launched me into a crash. I am now exhausted every afternoon. What are your experiences? How are you dealing with this condition as you diet?

Replies

  • ohiomurph
    ohiomurph Posts: 2 Member
    I have CFS and Fibro. Just getting back to dieting and exercise. I've gained lots of weight as I reduced my activity due to pain. Trying to find the right balance. Baby steps.
  • corinasue1143
    corinasue1143 Posts: 7,460 Member
    Yes, both. I’m dealing with it badly. I keep hoping it will get better, and it has gotten a lot better, but I have a long ways to go.
    I wear a pedometer when exercising to keep me from overdoing. I have learned to take a rest break immediately when I get tired, rather than trying to finish what I’m doing, then rest. I feel better when I eat better, so I eat better!
    I never knew I had this much patience.
  • ixchelkeshet
    ixchelkeshet Posts: 36 Member
    Keep going. I cheer foy your baby steps. I am back at it myself now. Logging is a big help. I need to start exercising again. Just walking. I agree that stopping when your tired is critical with ME/CFS. Then restarting later in the day, if I can. Calling it a day if I am too tired. Because I pushed it too far once, And wound up having to take naps every day. Once I recognized the pattern, I resolved not to do that again. Keep going.
  • Xellercin
    Xellercin Posts: 924 Member
    I don't have that, but I have a severe genetic condition that causes me to be stuck in bed and barely able to walk most of the time.

    I manage it by being realistic about my limitations and maximizing my health habits within my adaptive capacity.
  • ixchelkeshet
    ixchelkeshet Posts: 36 Member
    That is a wonderful attitude and practical approach. What is the most interesting thing you have learned while using MyFitnessPal?
  • Xellercin
    Xellercin Posts: 924 Member
    ixchelkeshet wrote: »
    That is a wonderful attitude and practical approach. What is the most interesting thing you have learned while using MyFitnessPal?

    I don't think I've learned anything from MFP, I'm already a doctor and have a team of 11 specialists taking care of me.

    But the most interesting thing I've learned from living with a serious illness is that I would rather be sick but proactive about my health and self care than be one of the many able bodied people out there who don't take care of themselves.

    My condition forces me to pay attention to what my body needs and to take REALLY good care of it.

    At the end of the day, if I weren't sick I would probably be a workaholic who drinks too much and neglects my own health, like most of my colleagues. Instead, I focus every single day on my health, well being, and general life balance.

    So really, who is the sick one, me or them?
  • ixchelkeshet
    ixchelkeshet Posts: 36 Member
    I like your attitude. Embrace life. It is good and bad. I think I could be much worse, if I didn't take care of my health and pay attention to the science as well as my own body. That's the sweet spot, so to speak. Like you, I cannot imagine life another way in the sense of paying attention and doing what I can based on all of the information I have. But I have come to the realization that what this knowledge and attitude is a gift. Like practicality, not everyone can see or emulate it. My Dad used to say that we are here at all is because of a record of unbroken success. Each of us brings different skill sets, but yours and mine happen to sync up well with the maladies we bear. Take good care of yourself, and please stop by again to share.
  • Poppy_Merwanjee_Framjee
    Poppy_Merwanjee_Framjee Posts: 26 Member
    I have ME / CFS and it really sucks.

    I find that if I have a protein recovery shake after I exercise it helps a lot. I usually have an electrolyte drink with some sugar in it during the activity. That said, my husband had a bunch of people over for several days and I found it difficult to crawl back into my usual dark secluded hidy hole and rest and I crashed super bad (I had also cooked, cleaned and tried to do a normal amount of activity and it really did me in...) and then I caught Covid so I've been out the entire month of June thus far, so I don't know how much stock I would put in any of my 'coping methods' like protein shakes, lol -- probably not a lot. It's probably more or less placebo.

    Walking is good, I ride a stationary bike every morning. I took a chance and joined the gym but in two months I've made it in around five times max. I've wanted to go, but it's very difficult. I hope to build up my stamina.

    Feel free to add me as a friend, I've just signed back into this account I made about a year ago. :D
  • Fuzzipeg
    Fuzzipeg Posts: 2,301 Member
    I read something earlier saying a sluggish lymphatic system could have an effect on the body when "toxins" by products of and all that are not removed efficiently from the body. I'm sorry with your medical background I'm sure this has not been overlooked. Wishing you all the very best.
  • CrunchityFrog
    CrunchityFrog Posts: 7 Member
    I also have Fibromyalgia... and Hashimoto's, Asthma, and some other junk that make exercise hard. I think I have CFS, but undiagnosed. Like, I've been exhausted since the birth of my last kid (she's in her 30's). I'm disabled because of it all. The Hashimoto's was the last straw, and that developed about 10-ish years ago. I was working until then. I haven't been able to get that under control completely. Since that hit me, I've gained, like, 70 pounds -- I think. Somewhere around there. I've been working on dropping those pounds since last September. I've dropped 40 so far but have plateaued.

    It's hard because fatigue flares hit me out of nowhere. Like, walking is my favorite exercise. I can walk forever if I take my time and don't push it. But during a fatigue flare, I just don't have the energy. So keeping track of my food has been my best bet to keeping my weight down.

    I think the best thing to do is not push yourself and know your limits. I've been dealing with Asthma since the nineties, fibro for almost twenty years now, and Hashimoto's for almost ten. It's taken me a long time to come to terms with being disabled. I'm still struggling with it. Like I honestly don't know my limits and go overboard all the time because I try to be "normal". Ha! Then I have to recover from being "normal" and kick myself for even trying. >_< And that's after having all this stuff for years and years. Our minds are weird. Well, at least mine is.

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