anyone else with ME/CFS trying HIT?

This topic contains 8 replies, has 5 voices, and was last updated by  sarahds 9 years, 4 months ago.

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  • I’m reading FastExercise, and, since it’s raining out today, decided to try stair climbing in my apartment building instead of going for my usual walk. I did not bound up the stairs, I walked up and down 4 flights 3 times, then did it again a couple of hours later, and now I’m feeling like I might have overdone it, like the crushing fatigue is threatening to set in, even though I’ve been able to walk as much as 4 miles or 10,000 steps some days recently. I could not push myself until I felt muscle burn or shortness of breath, because I started to lose my sense of balance first, and obviously I do not want to fall down the stairs. Stair-climbing would be a very convenient way for me to get exercise if I can work out a routine that’s good for my situation. I think I should have only done it once, I just was feeling quite energetic afterward, and so went for it. Just wondering if anyone else with myalgic encephalomyelitis (chronic fatigue syndrome in the U.S.) is trying HIT.

    I’ve had ME/CFS for over 20 years. I’ve not been prepared to attempt the Fast exercise because I have found through long experience that I can do a reasonable amount of exercise most days (when I’m not in a relapse phase)so long as I start off with a very small amount of very light exercise and build up very, very slowly, over weeks. I have tried in the past to speed up the process but always end up feeling shattered and if I continue pushing ahead I precipitate a relapse which can last anywhere between weeks and months. When I’m doing well I can walk at a brisk pace for about 3-4km. most days. However I started the Fast Diet late last year and I found it worked out O.K. Had no less energy than usual and not particularly hungry either. Although I’ve dropped it while I have been through a bit of a relapse over the past few months. I’m intending to start back after Easter!

    I think the biggest thing here is to listen to your body and what it’s saying it needs. If you’ve feeling the fatigue hit you hard for the first time in a while I’d say you’d over done it. When I was really suffering with ME I found that very short but intense bursts worked for me; I’d sit on an exercise bike for 10 seconds as fast as I could stop for a couple of minutes then do it again. And that would be all I did. Gradually I increased that without tipping myself over to edge and went from there. Just tying to find the balance for me and trying to live my life too you know? So, for me, I would use the bits of fast exercise that work for you right now, what your body can do, but it doesn’t mean you MUST use ALL of what the book say; its not a super guide that must be obeyed to the letter. But if you can incorporate parts of it into your life that work with you, then you might find it helps. The only thing you can do is try and if it doesn’t work out, keep looking for the thing that does.

    LadyJane and JC, thank you both for these thoughtful replies, I’m sorry I missed them for so long (a family crisis kept me away from the forum for a while shortly after I posted this). I backed off HIT completely for a while because a knee injury was threatening to flare up again in addition to the threat of a serious CFS/ME relapse, just continuing my walking, changing it up with a bit of hiking through the woods as weather permits. But what I think I want to try next is choosing *one* HIT exercise for my upper body muscles and start with learning how to do that correctly, I will ask my son to spot me and check my form, and start with just a couple of seconds, slowly work my way up, eventually add *one* more upper body exercise in the same way, etc. I’m such a comical sight at my Zumba class, doing everything at about 1/2 speed, and completely unable to do lunge-y things because I feel like I’m about to tip over when I try, unable to do things with kicks because of my knee as well as complete lack of balance. I finally caved in to my rehab doc’s wish for me to try PT again for my knee, I need to set that up for the week after next.

    Hi everyone…sorry for butting it on the post…I was just hoping for some advice..
    I had a very near death experience with meningitis in February and then it return 2 weeks ago. In the past 3 months I’ve been diagnosed with CMV (an infection that lives in the brain and liver) and CFS.

    I’m 23 and up until January this year was an MMA teacher and ridiculously healthy. Now I’m finding it difficult to cut food, brush my teeth and even pull on a pair of jeans without joint paint, fatigue, lymph node pain and all the other glorious symptoms that come with CFS.

    The weight is slowly creeping on and whilst I’m still following a low GI diet (I heard it helps with CFS)…i’m still not feeling right in my clothes or myself.

    As sufferers of this awful thing for many years, can anyone recommend anything to help keep the weight maintained or exercises that aren’t as strenuous?

    Again, I’m really sorry for interrupting.

    Hope you can help.

    Elle x

    Elle, you’re not interrupting, this is what we’re here for. The first few months/years of this condition can be excruciatingly horrible.

    I also got hit with more than one serious medical problem at the time and somehow put on more than 50 pounds in only a few months. I was a single mother who worked full time at a demanding job while raising her very special needs child on her own and volunteering in her community and having a social life with friends — and I was *happy*, I liked my life, I had only gained weight before due to medical problems, medications, or pregnancy.

    If I had not been so overwhelmed I might have realized at the time that, since I was so much less active, I needed to eat a lot less. But I really wasn’t overeating to the extent of 50 pounds in a few months — something else goes on, too.

    Exercise is a minefield, especially in the early months/years, as at that point a few minutes of over-exertion can send you to bed for weeks. Walk a little bit. Every few days see if you can increase the walking a little bit more. Stretch. But be careful.

    I managed to take off 30 pounds by making sure I ate 5 servings of veg and 3 of fruit every day — it crowded out the more calorific stuff. But then my weight loss stalled and stayed 25 pounds above my pre-CFS weight, 50 pounds above my baseline young adult weight.

    There’s no reason not to try intermittent fasting, though, especially since there are health benefits in addition to weight maintenance/loss.

    It is *so* hard to live with the frustration of not being able to do things. I still operate, 17 years later, at about 1/3 of my former speed. It sucks. However, I can do more now than I could in the first couple of years. The key is to increase activity levels very, very, gradually, as tolerated. When that wall of exhaustion threatens to squash you again, stop, or it will stop you. There’s no pushing through it. But it does eventually get at least part-way better for most of us, I think. Are your doctors able to tell you how much your symptoms are due to the CMV and to what extent that will resolve?

    Hi Lady J et al.

    I’ve had ME/CFS for about 13 years. I’m about to try out the 5:2 diet for a while, see how it affects things.

    I’m doing a lot better these days that I did in the first 6 or 7 years of having the condition. I wanted to mention, in regard to weight gain, that it happened to me but was dramatically sorted out by going gluten-free, which also proved a major turning point in my CFS.

    I’m not celiac (I’ve been tested) but my specialist describes me as having a severe gluten intolerance and says that a lot of CFS/ME sufferers have or develop that. In a gluten intolerance your body starts to treat the protein gluten as if it were a pathogen, a germ, triggering an immune reaction, often with flu-like symptoms (some of the biochemical bi-products of exercise are treated the same way, hence exercise intolerance and disastrous reactions to overexertion).

    It’s definitely worth trying a gluten-free diet. You’ll know within a month or so whether it’s helping. The weight will fall off (I lost 24 pounds in 3 months without trying), most of it from the mid-body area, which is the best place to lose it in terms of life expectancy.

    CFS/ME is a condition which precipitates a cascade of symptoms. Intolerances to various foods are common among them. One of the key elements of CFS is that the body’s ability to absorb nutrients from food becomes compromised, so you’re eating but not getting the full nutritional value out of the food. This results in a craving for sugars and refined carbs — cheap energy. This often leads to weight gain. It becomes a vicious cycle. You have no energy, your body craves quick energy foods, but your messed-up immune system treats a lot of these cheap energy foods as though they were pathogenic, causing an infection-like immune response, making you feel worse and INCREASING your craving for things which are harming you.

    If you do decide to try going gluten-free for a month, I would recommend going easy on the many “gluten-free” products in the stores these days. Many of them are heavily processed and contain large amounts of sugars which aren’t going to help at all. Going gluten-free is much easier than it’s often made out, even without those products. Focus on whole foods (‘real’ food!) – good quality meat / fish / poultry (free range and organic is best as it’s likely to be hormone and antibiotic free), lots of vegetables. To take care of your starch craving, sweet potatoes (yams) are unbeatable and less likely to irritate a compromised metabolism than regular potatoes. White rice (easier to digest) is good, too. Natural yoghurt with some berries makes a great dessert and never really gets old. If you need to satisfy a sweet tooth, look up Nigella Lawson’s chocolate and olive oil cake and make it with the ground almond option and half the sugar. It’s practically a health food and the best thing you’ll ever taste (serve with a splash of cream and a few raspberries). It’s also very easy to make. Have a loaf of sliced gluten-free bread, such as Udi’s, just for convenience, but try not to depend on it too much. Toast in the morning or a sandwich at lunch, but not both. Certified GF cornflakes or buckwheat muesli are neat for breakfast, too, especially with some fruit / yoghurt or a boiled egg.

    Sorry if this is rambling and too long. I’ve been researching / experimenting with diet for years and I’ve got too much to say!

    Hope it helps someone.

    Hi sarahds, franfit, et al,

    ME/CFS has been pretty full-on the past few months so haven’t followed up on this blog, but glad I did today. Co-incidentally I had been reading about gluten intolerance a while back and thought it was worth a shot trying a low GF diet for a while. Started a couple of weeks ago so still waiting to see if that helps or not. The most obvious difference so far is that my gut doesn’t gurgle and squeak all the time any more and I’m not feeling hungry an hour after every meal. I’ve lost a kilo and am feeling like I have a bit more energy. I’ve had to post-pone the 5-2 diet for a bit as I know I couldn’t stick to it at this stage. Perhaps after New Year. I also had to drastically cut sugar/refined starches a number of years ago because of continual candida (thrush) infections if I didn’t. As sarahds said though it is a constant struggle because during a relapse your body craves sweet stuff and you’re so exhausted you just grab chocolate, etc. to get a quick pickup. Thanks for the really helpful posts. Cheers!

    Lady J,
    Sounds like it’s worth pursuing the GF diet for a while, then. It takes some time for your body to adjust, and you would certainly be wise not to change anything else for a while, but so far your experience is much the same as mine was. After a month or two I completely lost interest in sweet and starchy food. When you don’t crave it, you just don’t eat it and don’t miss it. Good luck.

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