Tummy trouble and ME

Hi Deb. To a certain extent you sound just like me . It's really hard to live with . I used to sleep a lot , then it changed to not getting much sleep . Now I think I have at last got my meds sorted that I get some sleep at night . I dose during the day but it's like 30 mins here and there . My legs are the worst part for me . Like you there getting worse and I'm not getting out much either . I had a bad fall last year and that has knocked my confidence a lot . I have cruches but I can't get used to then . I don't like going out alone . I try to make an effort to go to the shops a few times a week ins just across from my home . I wasn't eating much at the start around 9 years ago . Now I eat like a horse . I think that's my meds tho they make me hungry . You really need to try eat little and often . Even if it's a bowl of soup or a sandwich . I use to eat crackers and spread not much effort food . But eating is really important for some strength . I take omeprozole for my tummy it helps a bit . But my tummy gets really swollen some days . You also need to add fibre to you diet .. brown bread or cereal . It will help with toilet needs. It's hard to get a happy medium . But fibre and food really important . I'm 47 and got sick through glandular fever . I feel like a pentioner , most days . You will feel a bit better if you try to eat more and try to get a wee routine of doing something juring the day so you don't sleep to much . My heart goes out to you , because I truly know how that feels . I hope things improve for you deb. ❤x

Hi there,

sounds like you are having a very tough time of it.

I used to go off my food too but as I lived with people who cooked for me even at my worst of going off my food I ate something in a day.

But for me going off my food came to be the first noticeable symptom of depression.  My mood would plummet within anything from week or so to a months or so.  Be very careful.  It does sound awfully similar to what you are describing.  

Maybe come Monday you need to see your GP.  It happened  every few years for me, for a while and now I never need meds.  I wouldn't need them for long, maybe just 3 or 4 months at a push.  It seemed that my brain chemistry would get knocked out with the M.E,  Although the meds can take a month to kick in which makes me very concerned for you as it sounds quite developed with you.

Hang in there, have a hug x

 

Hi Deb,

I have tummy issues with this and the bloating problem and it can be a really frustrating but, I do eat ok. Sometimes possibly too much for my energy needs. However, I do have days where I feel nauseous and not up to eating. I make sure I eat gentle easy foods then. Your body is out of sync and I can only imagine how odd it feels to go to the loo after a week. Like Lorraine says, take easy foods. Soups, stews, smoothies are good. Little amounts will help to get you used to food again. I'm not sure if you feel constipated, how you are with drinks? This is an important part of healthy toileting if you are constipated with it. Finally, my son (who doesn't have cfs/me) goes to the loo about every 4/5 days and he has no issues, no pain etc, it doesn't bother him, just how is body Is.

I too have several days in bed and it can be hard to keep your morale up. This can also lead to not wanting to eat.

I too have leg pain but, like many of my symptoms, its intermittent. We all deserve a medal on this forum! Remember, people do get better. People who have been permanently bed bound have recovered.

Hope this helps

Beverley

It might be worth making a note of what you eat when you have your symptoms as M.E. can throw up intolerance you never had before. I was eventually diagnosed with lactose intolerance after suffering pain and bloating which was so bad I got to the stage where I didn't want to eat. I now also have soya and fructose intolerance - all I think due to the M.E.

Paz

i think tummy problems a common symptom with many immune conditions, some diagnosed as gastritus some not, but bloating, belching, discomfort, loss of appetite not unusual, l go on and off food, and that after changing to a light plain diet, no lactose, no rich food, on aggrevated times l eat little daytime, toast,  but try small meal evening, l can also go days 4 or 5 without needing bowel movement then to 2-3 times in a day, l think its ibs causing bowel to spasm, so closing for days, yours maybe longer due to not eating much. 

l get tiredness all the time, some days fatigue where l can drop off to sleep just leaning back on sofa 2-4 times for 30min or so, wake up feeling bad, feels as if drugged, drifting, today bad day, washed out, it also affects phycalogically as you know its not normal and feels like a waste of time, but needed when that tired.  Other days dont sleep daytime,enough energy to catch up on essential light tidying up, or to shop,   either way sleep poor at nights, restless disturbed, worst when lower hips top of legs side and back nag with pain, restless legs with it, up and down through night, use pain gel to help a bit, also use omprazole as prescribed for gastritus, it does help, and you can buy it at chemist, nexium, worth trying a week of plain diet, at least one meal a day and maybe toast occassionally.l,m going out less and less over last few month, been a bit of an ordeal for a while before that, not the relaxing pleasure it used to be, due to feeling discomfort tense up into my own bubble, find it embarressing also, but dont want to give in to staying in all the time, even with odd short trips 2-3 times a week, lhr 200yrs 2 shops, its getting out, still a problem lifetyle and can cause depression, it is a battle.  Dare l ask if your doc is supporting, maybe you need something to help with your tummy problems, you could always try nexium for a week or so see if that helps, if acid problems, or ask gp for referral to gastrologist. Sorry your needing to spend days in bed, l know others do or have, and now dont,  so it can improve. Do you have someone who can go into gps with you, let them know just how your feeling with the lifestyle. They could at least help with the tum problems. Things can improve, dont lose hope, best wishes