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Just looking for some practical advice

Posted , 10 users are following.

magiccat
magiccat

hi, new to the forum

have had mild-ish ME for 3 years. I'm lucky I still have my job and an understanding boss but it's getting harder . I was sort of steady for some time but now deteriorating quickly. I have real problems digesting food so have lost around 4 stone over the last 6 months or so. I can't eat any normal meals only small amounts of food.but now I'm finding standing up for anything more than 2 or 3 minutes tiring. I'm ok getting in the car and getting to the office and sitting down again although after 5 hours or so at work I'm blowing bubbles work wise. Got palpitations and at times of bad tiredness my whole core of my body is really sore, like I'm being squeezed, like I've done 100 sit ups. Absolutely no support form local NHS. Has anyone got any wise words for coping?  

3 likes, 11 replies

11 Replies

  • Ravenwood
    Ravenwood magiccat

    Posted

    Why can't you digest food?  What happens?
    • magiccat
      magiccat Ravenwood

      Posted

      I don't know. I've assumed that as well as everything else my digestive tract is fatigued so it takes an age to digest food, there are definitely good and bad days for this and it does relate to how fatigued I am.
    • Ravenwood
      Ravenwood magiccat

      Posted

      I had just wondered if you had been tested for food allergies. My allergies got substantially worse after I got me. Suddenly, foods that I could tolerate in the past, I couldn't eat at all without getting sick. I didn't lose weight however. I gained weight. A lot of weight. It seemed to me that the only things I could eat were meat and high calorie foods like chocolate. Weird, huh?
    • magiccat
      magiccat Ravenwood

      Posted

      Yes I got tested for coeliac and it was negative. Have never had allergies but weirdly if I eat chocolate I get all bloated!!. Funny I seem to be getting along better eating Asian foods such a phoo, anything with a watery broth with veggies, maybe some chicken. I have found its better to have a main meal at lunch and then skip dinner, maybe a snack at dinner time. It gives your system a lot longer to digest the food before bed. Might be worth a try for you
    • Ravenwood
      Ravenwood magiccat

      Posted

      Oh, I've tried everything in every imaginable way. I have gotten used to feelingpoorly after eating. However, if I eat a home cooked meal, I feel much, much better then if I eat out. When I eat out, I usually feel like my guts are being crushed for hours afterward.
  • Fidd
    Fidd magiccat

    Posted

    Wish I had wise words for you. Have you looked into autonomic problems (eg POTS)? That can cause particular problem with standing.

    Hope things improve for you.

  • karine97200
    karine97200 magiccat

    Posted

    Hi

    I wish I could give you help and support - but know that I am sending all my best wishes and thoughts.

    That is a lot of weight to lose over that time frame, have you seen anyone like an immunologist?  I too am losing weight, but only 16 pounds in 6 weeks  Like you food is starting to have a reaction on my stomach.  I have good days and bad days.  After a reaction to food I will spend a few days hardly eating anything but a salty crisp - something I seem to be able to tolerate - oh and pomegranite.  Mash potato sometimes helps.  On the good days I will graze little and often.  Also found my tastebuds have changed.  To settle my tummy on bad days I drink peppermint tea and suck peppermints.  I also use something called bucastem from my gp to stem the nausea.  I think for all of us our systems are different - and what may work for one, may not for anohter.  I have had fantastic help on here especially from George - but can not always get into the link for some reason when it comes on email.  So sorry to those I have not replied to, but please understand I appreciate all your comments and help.

    Go back to your GP - ask to see an immunologist - look at the ME/CSF website for the UK as on there are speciailists also on the NHS who may be able to help. Wishing you all the best.

    • kathy1122
      kathy1122 magiccat

      Posted

      Sounds like your having a relapse, i had this after 1 Year of being ok, it just happened for no reason and i was just really ill i couldnt do anything it wss quite a shock and it frightened the life out of me, i got better again in 1month, after 5 years of ME it has got more manageable but its still really freaky when that happens.just remember that most people get better with time, on the diet side get someone to cook for you lots of veg soups and raw juices and thoughs high calorie drinks you can get from your gp, and 2000mg of vit C, it works wonders for some people.
  • bronwyn97278
    bronwyn97278 magiccat

    Posted

    I am really sorry Magiccat, as you do sound in a Mess !!!  I am also sorry that I can't give you much advice re your gastro tract, but maybe a thought re visiting a Gastro-entrologist/Dietician ???  I do have bouts of bloating, and have changes in my likes and dislikes with my food...and yes as stated before, I often feel the need for fish..and chocolate, (or something sweet) at night...this may help to put weight back on, and are only small items to eat at a time...?? but I really think you should cut back on work hours, as it is not helping you, and you may end up having a longer episode/attack of CFS, which will see you debilitated for longer...please also really cosnsider having someone look down your gastrointestinal tract, as your weight loss etc may be related to something else completely...keep in touch  Bron
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