Stomach problems with cfs/me

Posted , 11 users are following.

I feel like I'm always asking for help on here now as it seems the best place to come to when I have an issue. I was wondering if anybody else has a bad stomach like this - My issue is that I'm never hungry and when I do eat I am extremely full after 1-2 bites and it's extremely difficult to finish the meal. I get a lot of stomach pain and feel sick. 

I hope somebody has some advice they could share with me as I couldn't really find any advice on the internet. 

Thanks

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15 Replies

  • Posted

    Hi Emily,

    That sounds awful, and obviously isn't going to be helping your energy levels any! sad I take it the docs have been no help?

    I have nausea and discomfort after eating, but my appetite is just fine, which I'm thankful for. I'm on antidepressants, which is one theory I have about what's causing my trouble.

    A while back I read something about some people with CFS having less gut bacteria, so I've been trying inulin. It does seem to help a little, but to be honest I'm still in the placebo window, so the jury is still out!

    https://microbiomejournal.biomedcentral.com/articles/10.1186/s40168-017-0261-y[/b]

    Take care x

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  • Posted

    I have a lot of stomach and bowel problems with my CFS/ME. Almost always have a sense of nausea, lots of bloating, stomach and bowel cramps and pains, and sometimes I do find it hard to finish meals. I have been diagnosed with IBS and Fibromyalgia, along with CFS/ME. I think it's quite common for sufferers of Fibromyalgia and CFS/ME to have sensitive digestive systems.

    I don't really know what advice to give you, other than maybe make changes to your diet to see if cutting out certain foods helps relieve the pain and nausea. Also if it causes you that much discomfort, maybe see your doctor, just to check there isn't anything else going on inside you.

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    • Posted

      Thank you for your reply. I have tried cutting certain foods out like dairy and gluten which I've been doing for about a year with very little difference although it does help a small amount with bloating. I've seen my doctor recently and they suggested it could be h.plyori (which I didn't really think it was) so I got a blood test done which came back fine. I am due to go and see a chronic pain consultant this week so will probably see if he can help in any way and suggest what to do. 

      Thank you for your help and advice 

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    • Posted

      i take probiotics which help , no gluten no dairy no potato no onions s**t crack but where still alive . ive found buy just living with what you have is etter than tryingvto fix everything

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  • Posted

    Hi Emily,  I too have lots of stomach problems with this illness.  I have been diagnosed with diabetes, fibromyalgia, IBS and have had my gallbladder removed. Without being too descriptive, have you had a good clearout?  I ended up in hospital with severe constipation when I didn't even realise I was constipated at all.  I was going regularly.....but it seems that this doesn't matter - with our slow digestive transit, we get sort of backed up until eventually, well, we become very ill.  The pain was excrutiating, I was dizzy to the point of passing out and I couldn't believe that it was 'just' constipation.

    I now take plenty of probiotics in supplement and food.  I always have buscopan to hand (prescribed by my GP) and now manage to eat a meal though I don't actually have much of an appetite.  I eat small but regularly and try to avoid a big meal - especially later in the day.  

    Even if this isn't the problem with you, probiotics are always a good shout as our systems can do with all the help they can get.  I hope you feel better and get to the bottom of this.

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    • Posted

      Thanks for the reply. I only manage to go about every 2 weeks and the doctor didn't seem too concerned with it when I brought it up just gave me some medicine to take. 

      Im going to try eating small and often again as I have tried it before but struggled. 

      Thank you for your help and reply 

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    • Posted

      Hi Emily

      I think most ppl with ME/CFS will experience digestive problems to varying degrees whether upper or lower digestive system.  when I was first ill, I had similar symptoms to you - feeling full and uncomfortable after a small amount of food with pain and constant nausea. In fact, I felt ''full'' all the time with  bad breath.

      I had a blood test for H-Pylori that came back negative. the Docs. then did a biopsy (I had lost quite a bit of weight and was already skinny with the ME/CFS) and found that I had Helicobacter Pylori infection with a small ulcer. with the ME/CFS our immune systems are already compromised and we'll readily pick up whatever infections that are around.

      i was prescribed the standard treatment (3 antibioics concurrently) but my system couldn't handle them. I don't know how conclusive the 'Antibody' test is. maybe you could have the ''breath'' test done, however, if the symptoms  persist it might be wise to  have an 'Endoscopy' done.  the Endoscopy I had was pain free, without sedation. you can have 'sedation if you wish'. I hope the Docs. keep an eye on it for you.

       unfortunately with ME/CFS we seem to be constantly under ''fire'' from all sorts of infections.  good luck with getting it diagnosed Emily.

      C

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  • Posted

    hi emily.

    I have ME too and a lot of digestive problems. ibs, gluten and dairy intolerance, feel nausea just about all the time. soon feel full. gatric discomfort. i do know other people with ME have gastroparesis. which means the stomach takes a long time to empty. Longer than it should .consequently, they feel full most of the time so can only eat small amounts. feel sick stomach pains and lose weight. it is also another problem often  in people with diabetes.

    I would suggest you see your DR about this. One of my ME friends suffered quite a long time before gastroparesis was diagnosed. If you do happen to have this, maybe it could be helped sooner rather than later. Hope this helps. Take care x

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    • Posted

      Hi thank you for the reply, I have been to a doctor today who only really suggested that painkillers might help but I think that's only masking the problem and not fixing it. 

      I will be seeing my GP soon for a medication review and will mention it then again and see if they can figure out what it is. Thank you so much for the helpful reply. Hope you are doing well

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    • Posted

      Hi Emily

      I haven't heard of gastoparesis before, so I looked it up. these are some of the symptoms.

      Heartburn or GERD.

      Nausea.

      Vomiting undigested food.

      Feeling full quickly when eating.

      Abdominal bloating.

      Poor appetite and weight loss.

      Poor blood sugar control

      Caitlin

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    • Posted

      Hi Emily

      Is worth mentioning gastroparesis to your GP. Your symptoms do suggest it could be this. I would never tell anyone you have this or that wrong with you as is not my place. I am an experienced qualified nurse, but it still doesn't entitle me to make a diagnosis !

      I am podling along thank you. My ME has gradually Worsened over the years. Iam housebound and is a daily struggle and frustrating but I try to do what I can. Take care.x

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  • Posted

    I've also had stomach probs with cfs, at time really severe - couldn't eat at all for weeks and ended up in hospital for it. What helped was a) following gastroparesis diet (look up a blog by crystal saltrelli to start learning). This diet will help enormously, few doctors are familiar with it but is very different from 'conventional healthy diet' advice. A good dietician (not a nutritionist, a dietitian) should be able to help on this if gp will refer.

    Secondly - the nervous system is usually in 'fight or flight' in cfs (sympathetic nervous system turned on). You need to be in 'parasympathetic' mode aka 'rest and digest' (there's a clue in that description 😉wink so do lots of mindfulness/meditation etc stress management/therapy/whatever relaxes you if you don't already and gradually your digestion will improve as your body calms down and begins to turns digestive response back on :-)

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    • Posted

      Ps - I'm certainly not saying you've got gastroparesis - I've didn't get diagnosed with that at any stage and my symptoms resolved themselves. I'm just saying that the diet for it is likely to be helpful for the symptoms you describe, irrespective of cause.

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