Chronic Fatigue Syndrome

This topic contains 181 replies, has 46 voices, and was last updated by  aerostatic 1 week, 5 days ago.

Viewing 34 posts - 151 through 184 (of 184 total)

  • Cinque

    Thank you. Yes I spent 6 weeks in hospital last year and the feeling in the morning having fasted overnight was quite nice thank you very much!

    Yes I think if I try to throw out everything at once I’m not going to manage very well. I’ll go until I feel results and hopefully then I’ll be able to dig deep and ditch anything with sugar as big booty says. If I try to do it all at once I’ll be overwhelmed. But it’s a great aim to have long term 🙂 x

    The other big hint for food choices on fast days is protein and low GI foods (http://www.gisymbol.com/about/glycemic-index/) are meant to keep you feeling full for longer.

    Don’t forget to keep hydrated, and many people find they need to up the salt (helps with hydration) so as not to feel dizzy or headachey!

    You will soon be an old hand!

    I am just finishing my fast day (I’m in Australia), looking forward to tomorrow morning 🙂 .

    Hi Orlaith,

    What I described before was what I have on a NFD. On my fast days I have two coffees with a splash of milk. That’s it. Not suggesting you do this, some can and some cant. Don’t be concerned if you cant. Just reduce the calories to 1/4 TDEE.

    Drink water like your life depends on it. Chew gum like your life depends on it.

    Sorry, I’m new to this particular thread, but just butting in to ask a question from Bigbooty because I spotted what he wrote about chewing gum – I tend to avoid chewing gum on a FD because of the fear of it stimulating my hunger even more. Do you find this at all?
    I’ve just started doing 36h water fasts and something to keep my mind off food would be good 🙂
    Thank you

    Pissupoosa,

    I find it helps. Try it and see. If it works for you keep doing it, if not then stop. The worst that can happen is it doesn’t work and it causes you to eat something. So reset and fast on another day. The water fasting gets easier the more you do them. Hang tough for the first month. I noticed that after 6 months they had become ridiculously easy. Good luck.

    Hi everyone,
    Not sure if I have posted in the right place, but I have ME/CFS and like most of you piled on the pounds. I am also unable to stand or walk, so I am a full time wheelchair user. That hasn’t helped, and also a long stint on steroids which finished 6mths ago. I have just been monitoring my calorie intake minus sugar and bread only twice a week at the moment, as I do react badly to both. I felt unwell on 1000 calories which was all I ate if I just dropped the sugar and bread. Now I have managed to up my calories to 1200 and see how I go for this week.

    Any advice from current forum members on managing the fast days and their general calorie intake or ‘inactive’ wheelchair uses would be greatly appreciated. I know that some wheelchair users advocate a diet of 1000 calories, but it made me feel ill after 3 days, so that’s too low! I have no way of measuring my weight so going on the good old measurements system… anything that shows a drop in cm’s will be encouraging!

    So pleased I found this way of eating though!

    Hi Sue,

    I thought to chime in here because I too was on steroids for nearly 3 years. I was taking oral hydrocortisone for adrenal fatigue/insufficiency. I finally completely weaned about 6 months ago too!

    Your measurement system is very sound. There are others on this forum who only go by how their clothing fits as verification of progress. I actually have a particular pair of pants as my target. When I am able to fit into them properly, I will feel that I’ve reached my goal! …Then I’ll have to think of how to stay fitting in them!

    I’m not so active either because I still struggle with weak adrenals.

    It sounds like you are following your body by honoring how you feel with the various caloric intakes. I hadn’t realized that only 1000 calories is recommended for wheel chair users. You’ve seen the TDEE tracker on this website? That can give you an idea of how many calories you’ll burn and I like that it even offers a ‘sedentary’ option which is what I chose to figure mine. I’ll put the link at the bottom just in case you haven’t already checked it out.

    I manage my fasting day calories by including a lot of high protein foods which I find satiating, such as whey protein powder shakes, eggs, lean meat such as chicken, cottage cheese, soups (even high quality packaged soups!). I do eat a few berries with the cottage cheese, though I count every calorie I consume on fasting days to ensure I don’t exceed 500. I use myfitnesspal to calculate and track foods and calories on fasting days and admit I haven’t gotten around to counting calories on non fasting days, though have become more conscious about what I eat on those days since starting 5:2.

    https://thefastdiet.co.uk/how-many-calories-on-a-non-fast-day/

    Here’s the link to myfitnesspal:

    http://www.myfitnesspal.com/

    All the best and keep us posted!

    Hi Lael,

    Thank you for your reply above, so very helpful. I had missed the link regarding calories, but having guessed my weight and entered details I am supposed to eat 1400 calories a day… or there abouts. So that’s quite good.

    I had hydrocortisone and fludrocortisone, both for POTS and adrenal insufficiency. I had a lot more energy when I was taking these and B12 injections. Started B12 again, see if that improves things.

    Interesting to read you have a lot of high protein foods on fast days, I also feel fuller on proteins. I will fast on Tuesday and Friday next week… I hope!A Biochemistry doctor said I needed more protein to support the adrenals and my love of protein shakes began!!!

    I do hope you achieve your goal and keep as well as you can and thank you again for your help

    Hi Sue,
    I think you are doing the sensible thing by balancing what evidence tells you, with how you feel.

    I am just concentrating on fasting as well as I can and then on non fast days eating healthy. Even with my low energy output I eat what would be normal portions of normal healthy food on non fast days, and I am losing weight nicely on 5:2.
    (Can’t really add in snacks though 😉 )

    High protein and low GI foods are good for keeping you fuller for longer.

    It will be interesting to hear how you find it once you start fast days. It is so helpful that they are just ONE day. I’ll be cheering you on Tuesday!

    Hi Sue,

    I too find that if I don’t keep my B12 up in the optimal range, I’m fatigued. I have the MTHFR genetic defect so have to take a special ‘broken down’ form since cyanocobalamin simply circulates around in my blood stream, making it look like I have plenty B12 when in effect it never enters my cells.

    I also tend to ‘salt waste’ due to low aldosterone. My doctor was contemplating prescribing Fludro for me though I tried drinking what is called the ‘Adrenal Cocktail’ and that helped a lot and was able to get by without the Fludro. I still drink it and probably would be better to drink it daily! I definitely feel better when I do!

    Do you by chance take any thyroid medication? Also, what are your ferritin levels like? When my ferritin is below 50 on the blood test I always feel like someone has pulled the plug on my energy levels.

    Cheers, Lael

    I was just diagnosed with chronic fatigue- also malabsorption (“leaky gut”). Also have a mild chronic depression and social anxiety I have had since I can remember.

    (Also single Mom of 4 sons, ages 14-20, 2 jobs)

    4 yrs ago I got really fit and lost 40 pounds. I worked really hard. Soon after I had some stressful life events happen, and that’s when I started to feel the fatigue come on.

    I was still eating very healthy and doing about 6 hrs a week of cardio and weight lifting at the gym, but my stamina was decreasing every day, and I was gaining weight rapidly.

    I gained 65 pounds in 8 months. Since then I have gained 10 more.

    A year later I no longer had the energy to do very much at the gym, and I was very depressed. My husband (at the time) said I was making excuses so I didn’t have to work out. (?!)

    Today I think I understand how I got where I am, but I haven’t found my well-being, or found the formula that will help me reduce weight and love myself. I am trying.

    I read about this diet a while back, and tried it for a few days. I couldn’t do it! I blame my emotional state and fatigue, but I can’t seem to do the fasting even with the best intentions. I get very hungry and then just eat what I can find. I feel relief when I eat, physical and emotional.

    I know I have a cascade of issues I need to work through, but I am wondering if anyone can give advice on how to begin the 5:2 fast diet. Is there a way to ease into it? I don’t know how to begin.

    Thanks for reading 🙂

    Hi Gwen,
    Welcome here. Being on this forum and sharing how you are going is one thing that might help!

    Omg you have more than enough going on in your life. It would be great if you can get into 5:2 and lose those extra pounds, that will make everything a bit easier.

    I had to cut out sugar to get rid of those intolerable cravings, but I still think my friend, who also does 5:2 is right when she says: It is just one day, and you can do anything for just one day.

    It sounds like you will also need some food replacements to make you feel cared for, while you are putting up with a day of being hungry (and to help you eat a normal diet on other days). If you can just get into the hang of it, you might be like me and find that choosing new clothes, and developing your new slimmer style, will be a wonderful reward.

    Must go (on grandma duty) be back

    Hi Gwen,

    I understand how challenging the hunger can be! One of the ways that helped me has been to do what Cinque suggested, which is to find substitutes. I started by simply cutting all white sugar out of my diet. At first I still had to allow myself foods with unrefined sugar since it would have been too much for me to cut all sugar at once! This was me substituting ‘up’ if that makes sense! I eventually was able to then give up the unrefined sugared foods too! Anyway, there are fewer foods around sweetened with unrefined sugars and they cost a lot more, which actually helped! I ate less because I didn’t want to pay through the nose for them! Also, I then substituted ‘up’ again by restricting myself to only home made treats made with unrefined sugar and then again by substituting ‘up’ by restricting to stevia sweetener only! Each step helped me progress and feel better.

    I have a history of adrenal insufficiency, which made me question whether or not I was able to practice 5:2. So what I did was to ease into it by doing 6:1 for a couple weeks to see how it went for me.

    How well do you sleep? I find I’m voraciously hungry when I haven’t gotten enough sleep. When I’m really tired on a fast day, I find them much more challenging and there is a valid metabolic reason for this. It isn’t because you are weak willed.

    I too had to give up exercise due to my adrenal insufficiency and like you, this had nothing to do with wanting to avoid exercise. I hated having to give it up, but it wasn’t worth the post exercise energy crashes I experienced, that at their worst were accompanied by migraines, brain fog and sometimes nausea. I eventually learned that due to my issues, exercise was unhealthy for me and even though I’ve recovered, I still have to be very careful. I hope this helps and keep us posted.

    Oh, one more thing that really helped my hunger on fasting days and even on non-fasting days is to eat a minimum of 50 grams of protein. I consume a lot of whey protein drinks to help with this, though there are many foods that boost those numbers such as chicken, pea protein, etc.

    Thank you for your comments Cinque and Lael!

    🙂 🙂 🙂

    I saw a picture that was taken of me at a party Saturday, and I am feeling so anxious and depressed about it! I am kind of freaking out- I can’t get over this feeling. I look so overweight I didn’t even recognize myself. I don’t know how to feel okay about my current self. I don’t want to be seen at work- i know this is irrational, just not sure what to do.

    just had to vent in a safe place.

    That article is very interesting as was reading posts in this thread. I now realise that last year when I came off the painkillers I was taking for my fibromyalgia I shifted towards the fatigue end of the spectrum. I was utterly exhausted by small amounts of work and basically became sedentary. I often thought about my reduced stamina but never thought about how the word fatigue applied to me. For some reason I associate it with sleepy which I am not. I have great difficulty sleeping. Then I concentrated on distracting myself from the pain, which I have now mastered by constantly listening to something so that my focus is out of my body and on something interesting which lifts my mood and keeps me in that wonderful flow zone that is so satisfying. The fatigue was actually harder to master, although I gradually increased the amount I was able to work by focusing away from the fatigue as well as from the pain. But I was spending so much time sitting on my bed. Well I still do. As soon as it is dark I go to bed. I need so much rest if I am going to get anything done. I have cut back the amount of work I have to do and luckily I have some really good people supporting me. But because I couldn’t even find the energy to stand and cook properly I ended up eating pasta and cheesy bean tortillas all the time done in the microwave and went beyond my usual already far too high weight to the point my xxxl trousers were uncomfortably tight. I knew about 5/2 from watching someone else’s success with it so I read up on fasting and started ADF in November 2016. The difference it has made has been amazing. The weigjht loss is not even the best part. My energy levels are steadily rising. I complete my work and look around for more to do. I am doing more cooking and other housework too. That I had basicly ignored for a year along with the garden. But I still rest a lot. I am hoping that as the nights get lighter my stamina will continue to improve.

    That article talking about a metabolic switch makes sense to me. When I weaned myself off the tramadol I felt as if my energy was just switched off. With the tramadol I had been able to push past the pain and keep working all day and into the evening, although I would pay for it during the night when I just lay there in a moass of pain and dreamt of being tortured or in hospital. I now recognize that the side effects, many to do with anxiety were unsustainable. I had certainly mucked up my biochemistry. Fasting having such an effect makes sense if blood sugar levels were responsible for the energy depletion. Hopefully I am reprogramming my body to better cope with food.

    Hi fatrabbit,
    I am getting more hopeful about the research too.
    Thanks to 5:2 I am down at the lower end of my healthy weight range and I am finding my energy levels higher, and my symptoms less (although I overdid it last week and suffered badly in consequence). Ofcourse my management skills have got a lot better over the years, and I think the steroids in my asthma preventer helps too!

    Isn’t it just lovely the control 5:2 gives us that allows us to then make other positive changes to our lifestyles. Best wishes to you!

    Hi grumpyoldbag, I’m part of an online group of thyroid/adrenal patients, many of whom are LDN users.I am currently looking into using it myself since LDN has made all the difference for those with HPA axis issues, like I have. I’ve known about it for some years, though have gone down other roads. I feel a synchronicity with your post since I’m just now seriously begun researching since considering starting on it myself and am planning on discussing this with my doctor at an upcoming appointment.

    Hi Minka, I would recommend that you do lots of research before you speak to your doctor and maybe take some info with you in case your doc has not heard of LDN. Try http://www.ldnresearchtrust.org – they have factsheets that you can print off. Let me know how you get on. Good Luck

    Hi there grumpyoldbag, I’m grateful to be seeing a doctor who does prescribe LDN, so I’m relieved not to have to convince him about its value.

    I so agree that research is vitally important particularly to empower me and so I know how to proceed! The link you posted is great!

    I’m aware that it is imperative to be clear of candida prior to commencing LDN. I did have a comprehensive stool test a few years ago which registered negative for candida, though things might have changed since then!? By chance did you undergo a candida cleanse protocol prior to starting LDN?

    Interesting that I’m no longer able to see your original post in which you explained the help you received from LDN, grumpyoldbag nor Merry’s response! …Just wondering if these might have been deleted or if I’m just not able to view them for some computer glitch reason?

    Hi Minka, glad you will be seeing someone who already prescribes, so many people have trouble finding a doctor that has heard of LDN. My doctor had never heard of it but was willing for me to give it a go – I’m very lucky to have her. I can’t remember what was posted originally – maybe it was considered off topic? The LDN Research Trust also has a facebook group – lots of good info there and you can ask questions.

    Hi everyone, I have suffered M.E.for 22 years,I am 65yrs old and struggle with 6 extra stones weight. I also have severe restless legs and arms syndrome. My neurologist put me on Ropinerole which keeps me from losing my mind!I am very interested in all your comments, because I would love to be able to lose some weight.
    Has anyone got any suggestions to help me please?
    Thanks in advance

    Hi Marialena,

    There is a thread on the forum about information for new people, but I keep forgetting the exact title. I’ll get back to you with the link. The initial post is written by a 5:2er, simcoeluv, and is an excellent introduction. I suggest you read that first.

    Do you have Dr Moseley’s book? If not I strongly suggest you get it and go through it.

    In your reading you’ll find that originally the 5:2 programme gave < 500calories per Fast Day (FD). Last year he suggested < 800 cals per FD, but most of us still use < 500. For someone with ME/CFS I suggest you use < 500 cals per FD too.

    I’ve had ME/CFS for 20yrs, in my late 60’s, and have been using 5:2 for 3 1/2 years now. I’ve been able to use 5:2 successfully to lose my excess weight -21kgs (3st 4lb). I’m in Australia and I’m presuming you’re in the UK.

    Starting 5:2 was like taking a step into the unknown at first, as I had no idea if it was compatible with ME/CFS. Since then I took my time, watching symptoms carefully, and worked with my General Practitioner Dr to watch medication needs and any adjustments needed. I was able to go off blood pressure medications in a couple of steps.

    I’ve been maintaining weight now for 1 1/2yrs. There has been quite a but if stress in my life during that time. My weight is up a little from my goal weight due to stress eating, but, 5:2 has helped me keep that weight increase to a minimum and keep my weight mostly stable. I’m very grateful to have found 5:2.

    The forum here is well managed and helpful, and I suggest you stay on here for information and support.

    Merry

    Hi Marialena,
    Welcome here.
    I am fairly similar to you, I am 60 and have had CFS for nearly half my life.
    I was about 4 stone overweight (30kg, I’m Australian) and first lost weight by cutting out sugar. (I am best when I even cut out sweet fruit). But then I plateaued and began putting on weight again.

    And then, nearly three years ago a friend recommended 5:2. I was so scared to try it, as I am sure you understand. I would have to put up with the consequences of a bad crash, if that happened.

    But as it turned out, 5:2 suits me really well. I am now at the lower end of my healthy weight range, and have maintained that for 18 months by keeping on doing 5:2.

    Losing weight has made managing CFS much easier, and is helping me avoid further, complicating illnesses.

    Have you read the 5:2 book? Do you want to try doing 5:2? I hope so! Feel free to ask all the questions!

    al salam Alikom
    I hope you are good and helthy
    5:2 diet specially on Monday and Thursday is sunnah in Islam .. and its very healthy for our bodies .. I have CFS/fibromyalgia too but only started this year .. and now is Ramadan ( fasting month in Islam ) I started to feel better .. I think because my body is recycling all the lazy and broken cells inside ..
    and unfortunately I wasn’t fasting 5:2 before ( its sunnah not fard ) but I will start after Ramadan since fasting makes me much better

    I just wanted to share with you our fasting dates so you can try it and benefit from it since 5:2 fast is originally from prophet Mohammed

    https://www.soundvision.com/article/sunnah-days-to-fast-throughout-the-year

    just try it and I wish you all good helth

    Hi Radwa,
    Glad you are feeling better. Such a relief that it wasn’t Chronic Fatigue Syndrome after all.
    Enjoy Ramadam, but remember that spamming your website is not allowed here.

    I just made a new post but have now found this one relating specifically to M.E/CFS sufferers.

    My main concern is how fasting days might interfere with medications when you are advised to take them with food, or are advised to ”eat little and often” – I am on quite a lot of things for my illnesses.

    I would love to try the fasting as since first getting ill I’ve had a weight gain of about 5 stone (this seems quite a common amount to gain). I’m overweight and am worried about developing further weight related illnesses on top of what I already have e.g. diabetes or high blood pressure etc.

    Any advice much appreciated!

    Hi Cinque,

    Sorry, it’s not really my website.. it just what I found online with a similar information that can help .. but if also not allowed I apologize I didn’t know ..

    I still have chronic fatigue syndrome and fibromyalgia by the way .. but with some habbits I can tolerate the pain and actuly have some sleep without suffering..

    But still when I have the attack I can’t do anything about it .. only a good sleep help with my insanity but nothing stop the the pain during the days

    Anyway..
    This is what helps me so far ..

    Going to gem with a coach knows about my condition 3 days a week (at the morning) .. this really helps me sleep with 4ml of sirdaluad but only until I adjusted my sleep routine and when I have to much pain

    Fasting 2 days a week .

    I wish you all good health

    Hi Radwa, you previous post appeared like spam as you were spruiking a website on your first post that is not particularly relevant to CFS.

    I hope you are still enjoying 5:2 and that the things you are doing to address FMS and ME/CFS symptoms help you.

    Hi Amlien,
    welcome here. You might get some good feedback on your other post, as there will be others with complicated health issues and medication that will be able to give their experience and tips.

    I have ME/CFS but am managing it without any medications so I am not very useful to you.

    I do think that you could try 5:2 by planning Fast Days where you just eat enough to allow you to take your medications sensibly. ie that you eat little and often and that it doesn’t add up to more than 800 calories for the day. (5:2 will still work if you need to go up to 800 cals on Fast Days, you might find you can do it with less).

    Do a bit of planning, and check with your doctor, then all you can do is try it and see how you go.

    I do so hope you can find a way to make it work! It is such a relief to do something that is so good for our long term health. I was stuck with being ill and inactive and the weight kept creeping up so that I got to well over 80KG. I’m now at 50kg, the lower end of my healthy weight range, and continuing with 5:2 for maintenance. It has transformed my life. Everything is easier without all those extra kilos!

    Good luck, keep asking questions! Let us know what you figure out.

    Each person has different symptoms and may therefore benefit from different types of treatment, aimed at managing the disease and relieving their symptoms.

    Treating the symptoms includes working with families and healthcare providers to make a plan and discuss the possible benefits and harms of the therapies.

    Addressing post-exertional malaise (PEM) symptoms
    PEM occurs when after even minor physical, mental, or emotional exertion, symptoms become worse.

    Worsening symptoms usually occur 12 to 48 hours after the activity and last for days or even weeks.

    Activity management, also called “pacing,” can help balance rest and activity to avoid PEM flare-ups. You’ll need to find your individual limits for mental and physical activities, plan these activities, and then rest to stay within these limits.

    Some doctors refer to staying within these limits as the “energy envelope.” Keeping diaries may help you find your personal limits.

    It’s important to note that while vigorous aerobic exercise is good for most chronic illnesses, people with ME/CFS don’t tolerate such exercise routines.

    Home remedies and lifestyle changes
    Making some changes to your lifestyle can help reduce your symptoms.

    Limiting or eliminating your caffeine intake will help you sleep better and ease your insomnia. You should limit your nicotine and alcohol intake, too.

    Try to avoid napping during the day if it’s hurting your ability to sleep at night. Create a sleep routine: You should go to bed at the same time every night and aim to wake up around the same time every day.

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