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Total loss of appetite & weight loss

Discussion in 'Gastrointestinal and Urinary' started by fionac, Oct 22, 2016.

  1. fionac

    fionac

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    Hello,
    I've never posted before, but am desperate and wonder if anyone can offer some advice?
    After almost 20 years with CFS/ME I have developed a new symptom - total loss of appetite, to the point where I have lost 35lbs in the last few months. I was carrying a little extra weight to start with, so am probably at about the 'right' weight now but really cannot afford to lose any more. I am now only managing to eat a small portion meal every other day - which I have to force down - and the rest of the time I have just a few crackers each day. Incidentally, I have also suffered from nausea for several years which is relieved by taking cyclizine.
    After a battery of tests - bloods, CT scan, endoscopy and colonoscopy - came back clear, my doctor says it could be that I've developed a side effect of gabapentin after 11 years on it and wants me to start coming off it. I am incredibly reluctant as I feel starting on it led to a huge improvement in my pain levels and mood. Even if I did decide to come off it, the process would take up to two years and my doctor has made no suggestion of anything like meal replacement drinks, even though most of the time I couldn't manage them anyway.
    Has anyone had similar symptoms for such a long period of time and, if so, did anything help? Thanks, and be kind - I'm new to this forum stuff!
     
  2. trishrhymes

    trishrhymes Senior Member

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    Hi fionac, I'm so sorry to hear of your problems.
    I don't feel at all qualified to offer any advice, and suspect you will need to seek medical help.

    You don't say what is stopping you eating apart from 'lack of appetite', and you say your nausea is controlled, so that presumably means eating does not actually make you vomit, you can keep food down when you eat it. You don't say why you can't use meal replacement drinks. I'm not questioning the reality of your serious difficulty, just trying to understand better.

    Here are a few thoughts from my experience.

    I also have frequent problems with nausea, worse during PEM, and often find myself forcing myself to eat because I know I need to. I wonder whether, rather than trying to force down a 'meal' it would be better to 'graze' on tiny healthy snacks through the day, as well as sipping nutritious drinks.

    When I can't face anything else, I can usually sip a strawberry flavoured soya milk, or eat a spoonful at a time soya yoghurt (I'm off dairy). I also sometimes suck a piece of dried fruit and eat it slowly, and a bowl/mug of vegetable soup usually goes down OK. Bananas and scrambled egg are also my go to options if I can't face a meal. But of course everyone's different - you will know best what you can stomach. However sick I feel, I try to include at least some protein every day.

    I am concerned that you are missing out on vital micronutrients too. If you can't face swallowing vitamin pills, there are mouth spray versions of multivitamin/minerals.

    Having said all that, I do think you need to seek medical help as you may be malnourished as it's gone on for a long time.

    Best wishes, and it's good to meet you in here.
     
    Last edited: Oct 22, 2016
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  3. fionac

    fionac

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    Hello Trish,
    Thanks for your kind reply and I'm sorry you too suffer similar symptoms.
    I do try to snack on crackers at least once a day but often can't even manage a cup of tea let alone soup or nutritious flavoured drinks - I feel absolutely repulsed by the thought. Mostly I sip hot water or very weak vegetable stock. When I do manage to eat even a small meal, it often triggers the nausea and it then takes an hour for the cyclizine to kick in and to feel better.
    I have an appointment to see my GP in a few weeks so will maybe ask for referral to a dietician, and in the meantime will order some vitamin pills.
    Best wishes, Fiona.
     
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  4. trishrhymes

    trishrhymes Senior Member

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    Hi Fiona, thanks for replying.

    I'm so sorry it's so difficult for you. Perhaps you could keep a diary of what you eat and your weight in the time between now and seeing your doctor to demonstrate your urgent need for help. If you are eating so little you may need to see the doctor sooner.

    Are you getting enough fluids? You may be getting dehydrated too, which is an even more urgent problem.

    I wonder whether you have tried taking cyclizine an hour before you plan to eat a meal as a preventive, or even taking it regularly for a few days to reduce the chance of nausea when you eat.

    Best wishes, Trish
     
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  5. fionac

    fionac

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    The food diary is another great idea Trish, so thanks again. Am pretty sure am managing to get enough fluids though, which you're right is so important.
    As for the cyclizine, my doctor is reluctant to prescribe it at all and has stressed that I should only take it when the nausea is really bad but I shall talk to her about it when I see her. Fingers crossed!
    Best wishes,
    Fiona
     
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  6. PatJ

    PatJ far and free I gaze

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    Nausea after eating may be caused by low stomach acid. A simple test is to get some Betaine HCL with Pepsin capsules and try one after eating a meal that contains some protein. The number of capsules you need is based on the amount of protein but varies for each person. For me, I need one 650mg capsule for roughly every 4 grams of protein in a meal.

    If you can eat fruit or foods with almost no protein (such as a few crackers) without feeling nausea then that's another sign you may have low stomach acid because the acid is mainly required to break down protein.

    Is the nausea worse with high protein meals such meat or cheese?

    Another cause of nausea after eating might be postprandial hypotension, which means low blood pressure after eating because a certain amount of blood is redirected to the stomach for digestion. More blood is required for larger meals.
     
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  7. fionac

    fionac

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    Thanks, Pat. That definitely sounds worth investigating, although the irony is that I was on omeprazole to lower my stomach acid for years until a few months ago. I stopped them before the endoscopy and realised that they were making absolutely no difference and so never started taking them again.
    The nausea can be triggered by eating, or even drinking an occasional cup of coffee, but I haven't tracked it closely enough to identify whether protein could be partly the culprit. I will start keeping a food diary.
    I also have a blood pressure monitor so will check that after meals - thanks so much for the suggestions.
     
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  8. PatJ

    PatJ far and free I gaze

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    Many doctors misinterpret low stomach acid as too much stomach acid. This review of the book "Why stomach acid is good for you" contains an overview of how low stomach acid can be misinterpreted as too much. Many health problems can be associated with low stomach acid.

    Low stomach acid is common with CFS/ME. When I finally realized why I was having so much digestive trouble, such as major fatigue after meals, and started taking Betaine HCL I had to start very low dose to avoid a burning feeling in my stomach. I think this is because the lining of my stomach which forms a barrier to stomach acid, had thinned over time due to lack of acid. It only needed to protect against a trickle of acid instead of the usual flood. After a few weeks on the lower dose I was able to increase, then increase again (presumably because the stomach lining was thickening) until I was no longer having the fatigue after meals.
     
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  9. TigerLilea

    TigerLilea Senior Member

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    I have had two family members develop anorexia; one of them from long term use of an OTC med . If your doctor thinks that your medication is a possibility for you then you really need to consider stopping the Gabapentin. Most medications whether they are OTC or prescription were never intended for long term use. You don't want to end up on life support in the hospital from unintentionally starving yourself. :ill:
     
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  10. daisybell

    daisybell Senior Member

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    The dietitians I used to work with recommended little and often for poor appetite and nausea... trying not to let your stomach get completely empty. I don't think it matters hugely what you eat, as long as it's something/ anything....whatever is least unappealing!
    Nibble and sip through the day - swallow something at least every five minutes while awake...

    Does that sound like something you could do? I think i would try watered down fruit juice or cordial and crackers to start with. Something with a bit of sugar and also salt!

    You need to get some professional advice I think. Good luck and I hope this sorts itself out...
     
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  11. charles shepherd

    charles shepherd Senior Member

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    I'm sorry to read about the problems you are having with loss of appetite and weight

    I have included some key points on loss of appetite and a recent Q and A from ME Essential on loss of weight below

    The key point here is that ME/CFS does NOT cause the quite severe loss of appetite and weight that you are describing - so your GP is quite right to be arranging various investigations to try and find an explanation

    Weight gain is a well recognised and quite common side-effect from gabapentin. Loss of appetite and nausea are also recognised side-effects from this drug. So, as your GP says, this is a possible explanation.

    A few quick points on loss of appetite in ME/CFS:
    1 Loss of appetite (anorexia) can occur in ME/CFS for a number of reasons - including restrictive diets, side effects from drug treatment or co-existent depression/low mood. It should be noted that ME/CFS does NOT cause malabsorption or problems with the digestion of food.
    2 But it can also be an important warning sign of another medical problem that has nothing to do with ME/CFS. So this is something that MUST be discussed with your doctor - who can take a proper history, carry out a physical examination, and do some some blood tests
    3 Loss of appetite also occurs when people are depressed or have low mood - which obviously needs to be addressed and treated where it occurs
    4 People with ME/CFS need to have good balanced diet that provides energy for both mental and physical energy. If someone is not eating well then this will not help with any possible recovery process
    5 The best person to offer some good practical advice here on diet or nutrition, assuming there isn't any other explanation is an NHS dietitian. The GP might be able to make a direct referral.
    6 The MEA has information leaflets covering diet and nutrition in ME/CFS. MEA literature order form:
    http://www.meassociation.org.uk/wp-content/uploads/Order-Form-11MAY2015.pdf

    Q and A from a recent issue of ME Essential magazine on weight loss in ME/CFS

    Question: Worried about weight loss

    I’ve read on the internet that one of the many symptoms of ME is weight loss. I’ve now lost about 2 stone – my weight has dropped from about 11 stone to 9 stone over the past four months. I have a reasonable appetite and eat a fairly normal diet. I don’t have any stomach or bowel problems. The fact that I’ve lost quite a bit of weight doesn’t really bother me but why does this occur in ME?

    Answer

    Weight loss is not a symptom of ME/CFS and does not form part of the underlying disease process in ME/CFS. In fact, many people with ME/CFS report that their weight has increased due to the restrictions on activity and exercise that this illness imposes.


    When weight loss is significant - as you describe - this indicates that other explanations for ME/CFS-like symptoms must be very carefully considered and, where appropriate, investigated.


    People with ME/CFS do sometimes lose weight - but in this case there is normally a fairly obvious explanation such as poor nutrition, food restriction, or loss of appetite


    So this is something that you must go and see your doctor about as soon as possible. You would then be referred to hospital if it is felt that another opinion or further investigation is required.





    Dr Charles Shepherd
    Hon Medical Adviser, MEA
     
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  12. Mary

    Mary Senior Member

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    @fionac - google gabapentin - nausea is an extremely common effect of gabapentin, so I think your doctor is right, you probably need to get off of it, no matter how long it takes.

    Also, it can affect the liver, which in turn can affect your appetite and so on: http://www.livestrong.com/article/471052-does-gabapentin-cause-elevated-liver-enzymes/

    And you may need additional HCL as well - @PatJ is right, low stomach acid is quite common with ME/CFS. I've read it's best to take a combination of betaine HCL and pepsin, I've been taking it for several years and it did a lot to improve my digestion.

    But I would bet your current nausea is from the gabapentin --
     
  13. CCC

    CCC Senior Member

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    How confident are you about this?

    Would this also apply to a teenager who had a massive growth spurt to reach 6' tall but stay at 50kg?
     
  14. PatJ

    PatJ far and free I gaze

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    I'm surprised to read this response. Weight loss, and inability to gain weight, is a problem that has been mentioned by some members of this and other forums, including me. I gradually lost a lot of weight and now can't gain weight no matter what I eat (and I easily eat enough).

    While I think fionac's weight loss after such a long time with CFS/ME sounds like it might be medication related as mentioned, I wanted to point another view of weight loss and CFS/ME. According to Erica Verillo's CFS Treatment Guide 2nd Edition there can be various reasons for weight loss in the CFS/ME patient:

    Two other notes about weight and this condition:
    1) I have also read that adrenal dysfunction, as may happen with HPA axis problems in CFS/ME, can lead to a state of chronic catabolism.
    2) And a quote from @WoolPippi on another thread about low blood pressure and malnutrition (which I assume could lead to weight loss):
     
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  15. charles shepherd

    charles shepherd Senior Member

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    The key point I was making in relation to ME/CFS (if you read the full paragraph) is that weight loss is NOT part of the underlying disease process in ME/CFS (certainly in our current state of knowledge)

    I then went on to qualify this by saying:

    People with ME/CFS do sometimes lose weight - but in this case there is normally a fairly obvious explanation such as poor nutrition, food restriction, or loss of appetite

    Weight loss, where there is no obvious explanation, MUST be regarded as a 'red flag' symptom and any decent doctor in this situation should take a proper clinical history, examine the patient and arrange a number of basic investigations

    If the weight loss is significant (and 35 lbs in a few months is significant) and no obvious explanation can be found the patient should be referred for further assessment and investigation
     
  16. fionac

    fionac

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    Thanks a lot, everyone. I really appreciate your input.

    I think in this case there is a direct cause to the weight loss, and that is loss of appetite and therefore reduced food intake. My query really is whether a totally new side effect like this can appear, after 11 years on a medication?

    My dilemma is also that it could be the result of a number of other things - I am also on co-codamol, it could be depression (although don't think so), or just a new ME symptom. My GP has, thankfully, ruled out more serious causes but how do I start to try to get to the bottom of it without worsening my condition? I'm already in the midst of a big relapse and back in bed.
     
  17. Mary

    Mary Senior Member

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    @fionac - co-codamol can also cause nausea. It's got codeine, which upsets the stomach and not a good thing to take long-term. It also contains paracetamol (acetaminophen) which can be very hard on the liver. it's possible the combination of gabapentin and co-codamol is just too much for your body to handle.
     
  18. Butydoc

    Butydoc President

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    Hi Flonac,

    My daughter like myself has CFS/ME. She has had a 25 lb unexplained weight loss. She has been experimenting with CBD oil with good results. If you medical work-up has found no cause, then this might be a reasonable consideration. I'm not sure what works better, CBD or THC. Severe weight loss can cause malnutrition with decreased pre albumin, albumin and immune function.

    Best,
    Gary
     
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  19. TigerLilea

    TigerLilea Senior Member

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    New research has shown that acetaminophen should never be used for more than a couple of weeks. In as little as two weeks it can cause people to lose the ability to feel emotions. I don't know how long you have been on co-codamol, @fionac , but long term use of acetaminophen can also cause internal bleeding, liver problems, anorexia, and seizure disorders.
     
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  20. TigerLilea

    TigerLilea Senior Member

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    New research has shown that acetaminophen should never be used for more than a couple of weeks. In as little as two weeks it can cause people to lose the ability to feel emotions. I don't know how long you have been on co-codamol, @fionac , but long term use of acetaminophen can also cause internal bleeding, liver problems, anorexia, and seizure disorders.
     

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