Looking for those with Chronic Fatigue Syndrome

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photocolorful
photocolorful Posts: 19 Member
in Motivation and Support
Hello! I am looking to friend those who have Chronic Fatigue Syndrome. Sometimes I push myself to the point where I can't workout for a couple of weeks and I hate it! Looking for those who have CFS and any tips you might have with working out. Thanks!

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  • XLombardX
    XLombardX Posts: 23 Member
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    Hello! I am looking to friend those who have Chronic Fatigue Syndrome. Sometimes I push myself to the point where I can't workout for a couple of weeks and I hate it! Looking for those who have CFS and any tips you might have with working out. Thanks!

    Me! I had CFS for about 5 years, but I'm slowly climbing out of it. One thing that's really important to me is NOT pushing myself too far and causing Post-Exertional Malaise. I believe CFS is caused by mitochondrial dysfunction, as you can read here:
    http://www.drmyhill.co.uk/cfs_book.pdf I'm not crazy about some of Dr Myhill's methods, but I think her ideas on the aetiology of CFS are sound.

    Over the course of a year, I went from being able to work 5 hours per week to being able to work 4 DAYS per week. I'm not an evangelist so I won't go on about how I did it, but I will say that pushing myself physically before my body was ready led to many setbacks. First I got the diet sorted, then the resting, then the supplements, then the activity. I still don't push myself too far - body weight exercises and fast walking are as much as I do - but I'm losing weight, gaining muscle and feeling so much stronger every day.

    I understand what it's like to carry around a body like a dead weight, to go for a walk and not know if I'll pay for it tomorrow. Feel free to add me as a friend.
  • photocolorful
    photocolorful Posts: 19 Member
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    Thanks, I will check it out! I was actually diagnosed with Epstein Barr Virus and all of my symptoms point to chronic fatigue with goes along with a lot of EBV cases. I will check it out! Thanks!
  • XLombardX
    XLombardX Posts: 23 Member
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    Thanks, I will check it out! I was actually diagnosed with Epstein Barr Virus and all of my symptoms point to chronic fatigue with goes along with a lot of EBV cases. I will check it out! Thanks!

    I'm sorry for being unclear, I shouldn't have said mitochondrial dysfunction "causes" CFS... I think that CFS needs a trigger like EBV, traumatic stress etc, which causes mitochondrial damage. The damaged mitos are hard to get back into good condition again, and that's what keeps us sick. When we push ourselves we damage them further and set back our progress, but it can feel like we'll never get anywhere if we don't push ourselves! That's the theory of CFS that makes most sense to me - I've had a lot of tests that show that my mitos are severely damaged, which causes my heart and lungs to be weak. My test results are getting better though!

    There are a few different theories on what CFS is and how it is caused. There's an online community of CFS sufferers called Phoenix Rising, which I found to be very helpful and supportive.
  • neandermagnon
    neandermagnon Posts: 7,436 Member
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    there's a couple of people on my friends list with CFS or similar. just posting here so this goes in my newsfeed and hopefully they'll see it
  • floop1207
    floop1207 Posts: 194 Member
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    hello :) just saw your post. i have CFS and haven't been doing too well of late (house move almost finished me off). i'm actually just off to bed for a couple of hours now so that i can continue with the day later. add me if you like :)
  • merylmartin14
    merylmartin14 Posts: 6 Member
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    I have chronic fatigue. I have used graduated exercise to get where I'm at. With graduated exercise, you start off at a low number of minutes a few times a week of exercise, then increase the time by 10% a week. It has worked great for me with the help of a physical therapist!
  • Fuzzipeg
    Fuzzipeg Posts: 2,300 Member
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    I don't know if this might help, there are so many reasons for energy sapping illnesses.

    I got in a real mess with what appears to be Salicylate sensitivity. It could be worth looking into it and discussing it with your doctor particularly if you know you are eating well, especially foods which are held out as being particularly healthy. Two books I know of, the better I eat the worse I feel and food can make you ill. Often salicylate sensitivity is seen only as a problem for a few people. Salicylate is some plants method of protecting itself from moulds and mildews. We use aspirin which is the willow trees version. Salicylate is in many fruits, veggies, herbs spices.

    I have just gone back to my doctor and am being referred for immunology explorations. I have most of my energy, stamina back I just can't take high levels of it as food or perfume.

    all the very best
    .
  • Ausican4ever
    Ausican4ever Posts: 3
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    I have had CFS for 23 years, and overdoing is a big problem for me. The sad thing is I love exercise and when I have a good day I want to "Just Do It", but that is a very bad idea. It has taken me years to learn to pace myself, and I still mess up sometimes, but I just keep doing my best. I finally found a Dr that will treat me (instead of saying "oh well CFS is difficult to treat so I'm not going to do anything"") who sent me to a exercise specialist - who is also a nutritionist. He told me about MFP, and is having me do five-minute workouts.

    Some days I place my stationary bike in front of my hammock and pedal slowly for five minutes, and that is all I can do, some days I am actually able to sit on the bike without falling off, and some days I can jump on three or four times throughout the day. On days that I am bedridden I try to do some gentle leg and arm lifts, and tell myself at least I am moving. I have had good benefits from yoga over the years, if nothing else it helps ease some of the tension that builds up from my pain levels.

    I have found a couple groups of people with CFS and Fibromyalgia that I hope will be helpful. They all seem pretty quiet, which is to be expected- we don't have the energy to post a lot! I am off to introduce myself there... :blushing:

    http://www.myfitnesspal.com/groups/home/2605-dieting-with-cfs-fybromyalgia
    http://www.myfitnesspal.com/groups/home/6845-cfs-fibromayalgia-winners

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