ME/CFS

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  • posted by Sarah_500
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    Just wondering if there are any ME suffers doing the BSD and now they are faring. I am due to start on Monday and am a bit concerned about how it will affect my ME – I will probably have to forgo the exercises for the first couple of weeks.

    Does anyone have any tips on managing the diet with the fatigue,

  • posted by Eliza52
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    Hi Sarah

    I’m not an ME sufferer, but I can tell you that I have lost over 3 stone in less than 4 months, without doing ANY exercise, and whilst I acknowledge that exercise is important (and I’m going to start doing some work at the gym in a couple of weeks) it’s not necessary for weight loss (and in fact Professor Taylor of the Newcastle trial suggested it can be counter-productive when on a very low calorie diet (though he too acknowledged the other health benefits of exercise – but not directly for weight loss per se). Everyone has to do what’s right for them, so if exercise isn’t right for your ME, concentrate on the diet…you can still lose weight.

    Best wishes
    Liz

  • posted by alliecat
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    Oh Sarah, it’s so nice to meet you! Welcome to the forum. I know only
    too well what living with CFS looks like. I was diagnosed with Lyme disease
    about 18 years ago, which eventually resolved, but I was left with fibromyalgia
    and CFS. I expected to have to live a greatly marginalized life because of it,
    in a state of chronic pain and fatigue. I was diagnosed with Lyme at the age
    of 50. In june 2016 I began the Fast 800 BSD. Over the next 10 months I
    lost 140 lbs, and am today right in the center of a healthy BMI, with 12 lbs
    of wriggle room below my target. As soon as I went into ketosis the fatigue
    lifted, and I’m now at about 8 1/2 months in maintenance. My pain levels
    have reduced significantly also, although I still take some medication. For
    8 months I wasn’t able to do any exercise either, but started walking in
    month 9 + 10. None of these changes would have been possible without
    the BSD, and keeping carbs under 20 gm made it possible for me to lose
    a steady stone a month. I sincerely hope that it is the answer for you too!
    Best of luck, and always ask questions! There is always someone around
    to help.

    Allie

  • posted by Sarah_500
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    Thank you for the support, I also have fibromyalgia and an autoimmune disease – so I am very concerned with how my body is going to react to such a massive change, but to be honest it cannot be worse than what the last 10 years have thrown at me!

  • posted by arcticfox
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    Hi Sarah,
    I had CFS/ME with fibromyalgia for 11 years, but managed to kick it to the curb quite a few years ago now. I still have the occassional relapse of fatigue, but I can usually catch it before I get too far down the line now that I know what works for me. I have been lucky so far that the fibromyalgia has never come back. I think one of the most important things is to ensure that even if you are keeping calories low, that you keep your nutrient levels up to normal, including micronutrients. Using more precise nutrition software than what can be found for free online might be a good way of ensuring that you are managing this. Some of the CRON (calorie restriction, optimal nutrition) sites offer nutrition software that provide levels of all essential nutrients. They can be difficult to use if you are consuming packaged foods as the manufacturers don’t list a lot of the details, but if you are eating mainly whole foods they work quite well.
    There seems to be some thought with CFS/ME that the body, or at least the mitochondria, do not utilize energy (calories) very effectively. It is interesting to me because although I haven’t had much time to dig into it in depth, it seems to share some similarities with insulin resistance, although the mechanisms involved may be somewhat different. I’ve lost 10kg since starting this WOE in September, and I was really feeling fatigued all the time prior to starting and I was getting concerned about a relapse, but I think this time I may have been dealing with insulin resistance and possibly even working toward pre-diabetes. Since I’ve lost the weight, I have regained a lot of energy and have been feeling more rested after a night’s sleep as well.
    I would say to go carefully, and just make one change to your diet and exercise routine at a time. Maybe start by cutting down carbs without cutting calories, and then if you handle that you could start cutting calories back bit by bit. I wouldn’t add in any additional exercise beyond what you currently do while you are losing weight. Once you reach maintenance mode that would probably be a better time to gradually build up your exercise, and keep it within your tolerance level so you don’t get into that post-exertional vicious cycle.
    Good luck, and keep us posted with how you are doing!

  • posted by Julia V
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    I’m very interested in this thread since I have fibromyalgia, as well as T2 diabetes, & fatigue is a big problem. When I previously tried reducing carbs, I became extremely tired & cold, which meant I was very inactive. I’m concerned about this happening again. I think I may have been eating too lttle as I wasn’t following a plan as such. Since I rely on carbs so much, when I reduce them I’m not sure what to eat instead, or how much of it to have. Carbs encourage me to overeat them, whilst protein & veg are sort of self-limiting, if that makes sense.

    Very reassuring to read that energy levels improved with weightloss and that a gentle approach initially is ok.

  • posted by Sarah_500
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    It is very difficult to know how to proceed when you have other chronic conditions to consider as well, I do feel that was one of the shortcomings in the book people were just dealing with T2

    My autoimmune disease attacks my lungs which means at present I am only getting 54% of the gases with each breath, the knock on of that is very little exertion has a massive impact. I don’t have the energy to cook so it will be interesting to see how I get on with this diet, the quick easy recipes don’t seem that quick, especially when just shoving something in the oven can be exhausting.

  • posted by Esnecca
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    That’s a big challenge, for sure. I imagine prep is difficult too? For example, how long can you stand comfortably at a counter cutting up veggies or sauteeing something? We need to come up with some solutions for you that pare down the amount of lifting, bending, standing, running around. I did some of that when I was 300LB+ and every little thing was physically taxing, but it wan’t oxygen deprivation or anything like the profound exhaustion you have to deal with.

    Off the top of my head I’m thinking the slowcooker/crockpot could be your magic bullet. Toss everything in, turn it on and walk away. Do you have one?

  • posted by Esnecca
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    Julia, fatigue is very common in the early days of cutting out the carbs. People often report feeling tired, having body aches, headaches, a variety of side-effects that are known as the carb flu. It’s a detox phenomenon and it’s really a good thing because it means you are switching your body’s energy burning mechanisms to a new system, fat, not carbs. Once your body figures out it needs to burn the more dense stuff than the easy carbs it has been lazily subsisting on, you will find your energy skyrocket.

    It can be difficult to get past that initial detox period, but it very rarely lasts most than a week or so and you just have to power through it. Make a big batch of something easy (slow cooker chicken and greens with Indian spices is my current favorite) and eat it throughout the week. Drink water, tea, coffee like you’ve been through the desert on a horse with no name. If you like it milky, consider non-dairy substitutes like almond milk or hemp milk. Don’t worry about exercise for now. Keep things simple and allow yourself to go into low energy mode. Just don’t allow yourself to keep eating bread, pasta, potatoes, rice, sugar, cereal, grains. That beast needs to be starved to death or you’re not going to get past the hump into a fat-burning state.

    I saw on your profile you’re not much for planning and calculating. Have you tried using an app like Fat Secret or MyFitnessPlan? They do all the math for you, but you still have to know how much of what you’re using in order to get accurate data. Given the complicated combination of T2 and fibromyalgia, it’s important, I think, that you know with some degree of precision what you are eating so you know what you can do should you need to course-correct at any point.

    Good luck!

  • posted by alliecat
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    Hello again Sarah, ladies! Some of us have/had some pretty large medical
    challenges that have all been significantly improved with this way of
    eating. However, none of us are medical doctors, thus not really qualified
    to give medical advice. What we are qualified to do, however, is support
    you in every way possible, and that includes suggesting strategies to help
    you make this WOL work for you within the limitations of your disability.
    In addition to CFS and Fibro, I also had fluid on the lungs, as well as cardio-
    myopathy (enlarged heart). I couldn’t stand for more than 10 minutes, and
    bending over to retrieve something from the floor caused an inability to
    breathe. If you share the manner in which you have been preparing your
    meals up until this point, and what you can and can’t do physically, we
    will do our best to try and help come up with solutions for you. Your
    post here was about CFS initially, but there are obviously other things
    that have a greater impact on your life. We’d like to help, Sarah, but need
    just a bit more info. I know that the community would be happy to help:)

    Allie

  • posted by Sarah_500
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    Thanks to everyone for the help and offers to help further. My GPs have recommended that I cut the carbs to try to lower my blood sugar, my consultants are concerned about my weight gain due to steroids so this seemed like a logical choice for me.

    At the moment I am pacing most days, but as any parent knows that becomes a challenge in the school holidays. I am a single Mum, so it’s all down to me!

    I think if I pace the food prep it is something that’s achievable and the monster is now 12 so can help!. Lunches will be soup which I can do well in advance when there is extra energy and also for those days when the thought of cooking is too much.

    I have a slow cooker, however my daughter is not a fan of the results and I end up making something extra for her! So will have to try a few different recipes to find what works for us both, however I think some tough love may be in her near future 🤣

  • posted by alliecat
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    Sarah, both my nephews were presented with a beginner’s cookery book at
    the age of 12. In no time at all they learned how to become self sufficient,
    competent cooks. A big hit with ladies too, when they were older 🙂
    Empower your daughter, and let her help!

  • posted by Theodora
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    Great idea, Allie, particularly as most youngsters love to cook.

    Both my sons are excellent cooks and have been since they were in their teens. In fact my youngest, when he finished Uni and before he started his “proper job”, was offered 6 month summer job as first mate aboard a luxury 70ft charter yacht in the Med, only 2 crew but chartered out to 10 guests at a time. His job, as well as sailing, included cooking fairly gourmet food for the guests, so he came home an even better cook. He still loves his mum’s roast dinners though😊

    So Sarah, give your daughter her head and let her learn to cook, she may just surprise you and really enjoy it (and take a load of the work off your shoulders as well) I’ve never yet met a youngster who wouldn’t eat what they have prepared themselves!

  • posted by Ancient Weaver
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    I had a long post in the making, but it’s disappeared . . .
    To cut a long story short, I have suffered from extreme levels of fatigue for years, but my psych just didn’t ‘get’ how tired I was. . . I’ll leave that at that . . .

    Until about a year ago I rarely had enough energy to do any cooking, even when son was willing to help. I practically lived on cheese and biscuits and oranges. When I realised, thanks to US recommendations, and a dx of ADHD, that I should be eating a lot more protein than I had been, I trawled the supermarket shelves for all the highest protein foods that didn’t need cooking, and could be eaten with zero prep. I couldn’t eat more cheese tbh, but home cooking clearly hadn’t provided enough, and ready meals were even worse. So, after a few days of lots of eggs, nuts, smoked mackerel, tins of tuna and pilchards, as well as actually feeling better, I noticed I was putting on weight. . . Clearly I had to cut down on the calories, but no way could I cut out fruit and veg, I needed the roughage, as well as the vitamins, so I completely dropped cakes, biscuits, bread and breakfast cereals, and anything with pastry, as the foods with the least nutritional value for the amount of calories, due to the grain content. That stabilised my weight, but when I totted up the calories, I was astonished to see that I was only eating 2/3 of what I’d been eating before, only just over half of the classic recommendation in fact . . . and I still wasn’t losing weight.

    Surely it wasn’t normal to eat only 1200 cals a day and not lose weight? And how come increasing my protein intake reduced my total caloric need? That’s When I found the BSD 800. Phew, I’m not going crazy, or about to drop dead from eating too little! And then finding these forums, I realised that I am far from alone in needing to eat less that 1k cals to lose weight. I haven’t found the answer to the second question yet, but it might account for why lots of people ‘who have lost a lot of weight’, ‘have to’ eat fewer calories to maintain the loss. Maybe it’s just that the WOE that they have settled on and that they should have been on all along just happens to mean they need fewer calories.

    So yeah this post has turned into a lot of waffle too. I could actually write a lot more. Last year was an incredible year of discovery, learning and surprisingly easy weight loss. I’ll try and be more succinct from here on!

    I’m pretty sure I’m not gluten intolerant, but by keeping away from all grain based foods, I have actually effectively gone gluten free. I’m pretty sure I’m not lactose intolerant, but recent changes have highlighted that I do have issues with cows’ milk casein. (Another long story there: I kind of knew I didn’t digest it well from an incident around 30 years ago, but ignored it, as I thought it was normal, and back then, no-one even knew about the problems that are now associated with it. )

    Argh waffling again.

    List of recommended food for anyone too tired to cook.

    Tinned fish
    Ham,
    Corned beef
    Smoked mackerel
    Eggs, not hard to fry or boil, but actually I have them raw in whey shake ( I have my own hens though) They actually make the shake creamier! Whey, or other protein shake is not a substitute for proper food, as it doesn’t have much else at all than the protein, but whey is good protein, and only very rarely indeed does it cause any issues. I find it is a brilliant pick me up as it is so easy to use.
    Nuts: Brazils, walnuts, cashews and almonds are the best for various reasons. High in calories though, so don’t over do them.
    Fruit, in normal quantities. I actually ate loads (3 full sized portions every day) while I was away for three weeks with no calorie counting possible, and still lost 3lbs sticking to BSD otherwise.
    I also ate cheese, but I’m now reconsidering the wisdom of that, and would not recommend it to anyone with any kind of autoimmune problems.
    Also, yogurt with frozen berries was a favourite, but again . . . ^
    I’m sure I’ve forgotten something . . .
    Dark chocolate! Again don’t over do it, savour small pieces. (I still think I’ve forgotten something . . .)

    When you have enough energy to do a bit of cooking, dried precooked onion from Home Bargains, is a great time and energy saver, and also saves you from finding that you have no edible onions because it was so long since you last used any that they’ve all gone soggy or grown.
    Whenever possible add turmeric and black pepper, and/or lots of herbs and spinach. e.g. Mince and lentils; add T and BP to the mince. Ratatouille, add loads of herbs and spinach, as well as T and BP.
    T and BP is good on fried eggs too, and don’t forget salt. Salt is incredibly important, and if you can get the stuff that has trace minerals, that’s even better. (If you have high BP, get your GP to check your salt level first.)
    For years, I hadn’t cooked/ate a proper meal more than once a day, (and not always that often either!) but as my energy levels improved, I started having three proper meals a day, but I have such a massive back log of housework that I resented the amount of time I was spending cooking and washing up, so I have gone back to one of my more successful dieting strategies, and now only cook once a day again.
    Now I usually just cook a vegetable dish, enough for two days, and have it with tinned or smoked fish, ham or corned beef one night and have the rest with eggs or burgers or something similar the next. Sometimes when I feel really energetic though, I’ll actually do bacon in the microwave, and fry eggs AND mushrooms, while son does the veg and baked beans. That’s ME doing THREE separate lots of cooking for one meal! :O
    Dessert is either a portion of fruit, berries with yogurt (see above) or half a tin of fruit in juice, maybe with cream if I’m still hungry after eating most of the whole day’s worth of food in one sitting! Most cooked deserts aren’t BSD friendly AFAICT, but that reminds me I have some cooking apples that need finishing off!

  • posted by Julia V
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    Thanks for your advice. I have not eaten rice or pasta for a while & that’s fine. I’ve fallen in love with cauliflower in a big way, so am happy to sub that for rice, mashed potato etc. Bread is something I miss a lot, because it’s convenient and a cheese sandwich has always been a favourite snack. I already use non-dairy milk as I loathe the real stuff and don’t tolerate it. I don’t think I drink enough though – often don’t realise I’m thirsty until I’m really dehydrated. Trying to drink more water as my mouth is very dry.

    As far as calculating and recording, I have tried MFP and FS but find it very laborious. I won’t discount them though. I did go through my carb and calorie calculator book yesterday, which was very enlightening. At the moment I’m considering formulating a written list of suitable foods that I already eat frequently with their carb values and keeping a paper food diary. That way I’m hoping to get to know what’s what. I think I will also monitor my fasting blood glucose so I can see the trend. I was advised not to test as I’m not on medication for diabetes, but I was frustrated by working blind. I want to achieve a sense of control over my diet and blood sugar, rather than feeeling food controls me. I do sgruggle with details though, as I get overwhelmed & easily defeated. I’m not a systems person at all.

    I have been looking at the Diet Doctor website. It’s very interesting & seems to be a useful resource. Does it fit in with the BSD ok? Is it more extreme? I find the variety of info confusing. I suppose the basics are the same in all the low carb advice and as long as I’m not eating the obvious stuff that will be a huge improvement. I need to get a repertoire of suitable meals & use my slow cooker, as suggested.

  • posted by Luvtcook
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    The Diet Doctor is very compatible with BSD as it advocated intermittant fasting however ever short of long you need to do it to meet your goals. They even advocate total fasts (water or bone broth) for those with huge amounts of weight to lose or those “stuck” but recommend it be done under MD supervision if currently on medication. Dr. Jason Fung from Diet Doctor has a lot of terrific videos of conference lectures on the web that give you a lot of insight as to how control of insulin levels are the objective. And how fasts or near fasts help correct years of damage and insulin resistance.

    Julia I sympathize with you about the tedium of using the web tools to count calories and carbs. But your instincts are on point to use them to find totals for frequently eated foods/ dishes/meals…..and then repeat those. Just keep adding to your repertoire and you will find that you have to look up less and less. Just keep reading labels and looking up new and unfamiliar things because something will always surprise you (for good and for bad).

    If you use some of the low carb websites for meals, most have the calories and carbs already worked out for you…and they are free and offer almost endless variety when you get bored with too many repeats.

    Good luck.

  • posted by arcticfox
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    Hi Julia, I hear you too about the tedium and mental energy of entering food into a tracker. I am really not the personality that enjoys taking time out of my day to track and record everything. I use myfooddiary.com. It is a paid service (I use it because my sister does as well and we can trade recipes and their nutritional profiles back and forth and also because I’ve been using it from before MFP became a really functional and useful), but it has some features that I like. One is the ‘fridge’ function where you store all the foods you eat most frequently. There is a recipe function where you can enter in typical meals as well as recipes, and the best feature from my perspective is the ‘copy date’ function. If you have the same things to eat 2 days in a row, on the 2nd day you can just copy the day before. You can also copy individual meals. I for instance have the same breakfast most days (chia flax museli with berries and a bit of greek yogurt) so I never have to enter it in, I just copy it from the last day I had it. I can’t speak to whether or not MFP or FS have these features because I don’t use them, but many others on here use them and could likely tell you.

  • posted by Julia V
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    Thanks for your useful comments & suggestions. There is certainly a wealth of wisdom to be found on these forums & it’s great to feel part of a community as I embark on this adventure.

  • posted by Sarah_500
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    So today is my start day. I am planning on hibernating this week and doing as little as possible so I don’t crash energy wise.

    When my daughter gets back from school we will get on the soup making process together.

  • posted by Sarah_500
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    So I am on D3 I have lost 4lbs and my energy levels don’t seem to be too bad. Monday I did need to sleep for a couple of hours about midday, bit yesterday was fine and even managed to do a 2 mile walk!

    The only challenge has been the constant need for the loo due to my increased water intake – I feel a bit trapped to be honest, does it get any better?

  • posted by Sarah_500
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    Just come back from a funeral and feel rubbish. It brought back memories of the funerals of both my parents, the emotions have led to a crashing headache.

    Good news is that I am sticking to the plan and have retreated to the furthest point from the fridge as possible

  • posted by alliecat
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    Hi Sarah, I’m sorry you’ve had such an emotional day, but congratulations
    on your 4 lb. loss and not using food or drink to medicate your emotions.
    I always have a hard time at funerals, for the same reasons that you do.
    I have to fight so hard to control my emotions (which I usually fail at!), and
    sometimes I don’t even know the deceased! If your headache persists, it
    might also be attributable to the onset of “carb flu”. Some have this
    experience, some don’t, but it’s generally short lived and all that you can
    do is wait til it passes.
    Good luck to you, Sarah. Keep us posted!

    Allie

  • posted by Esnecca
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    I’m sorry, Sarah. Funerals can be deeply upsetting even when you don’t have the triggering associations you have. Very well done confronting the pain you’re in a face-to-face way instead of trying to numb it with food. It’s a big part of making the changes you need in your life a permanent thing instead of a trick to lose weight.

    Regarding the bathroom, your bladder will adjust and you’ll have to pee less frequently. I have found, however, that when I need to go I need to GO. The days of me being able to hold it for hours are over. I drink too constantly for that.

  • posted by arcticfox
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    Hi Sarah, well done on your 4lbs, and sorry to hear about the funeral.
    In addition to what Allie and Esnecca have said, you may want to try increasing your salt intake a bit. If you are drinking lots of water, you will likely need more, and that should help with the need for the loo and the headache.

  • posted by Sarah_500
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    Thank you – I hadn’t considered my salt intake, I rarely use it in cooking or to my plate.

  • posted by alliecat
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    Sarah, some of us find that we became a little dizzy upon rising, and
    some extra sea salt on your food (good for the mineral trace elements)
    is really useful, particularly with 3 liters of water a day stripping some
    of the salts from your body. Hope this helps!

    Allie

  • posted by Sarah_500
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    So my appetite has more or less disappeared- I know it is only D4. It is 8.30pm and I am ready to crash out, I need sleep but still have 215 calories to consume!

  • posted by Sarah_500
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    Ok I’ve decided I need more than soup! I need some quick easy dinner recipes that are not going to wear me out trying to make.

    Tonight I’m planning on Quorn curry with califlower rice, my daughter will have the carb loaded version. Stir fry has been a good option as well, but craving a bit more variety.

  • posted by Sarah_500
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    So things are going pretty well R1W3 nearly complete and I have lost 8.5lbs despite hitting a dreaded plateau at the end of W2 and coming down with a heavy cold courtesy of my daughter.

    My energy levels have improved significantly (heavy cold aside) so am planning to start the exercises in the book on Monday. Probably not every day to begin with but hopefully 3 times a week.

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