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Hi. This is my first post after reading a lot on here looking for answers! I display pretty much all the symptoms of ME but I've also lost a lot of weight unintentionally (4 stone/25kg over 8 months) I've been to the doctors a lot!! They've done many many tests and found everything to be normal, I've even had a full CT scan which showed nothing. The doctor has put me on antidepressants and seems to just think I'm depressed but that doesn't feel like the case to me and if it wasn't for my weight loss I'd be certain that it's ME causing my problems. Has anyone else experience weight loss along side ME? Any advice would be appreciated!
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I've got ME and I'm underweight; I had nurses coming to my home to weight me recently because they were concened at how thin I am.
I'm now on the Ketogenic Low Carb High Fat diet and it's amazing!
Even though I'm underweight, because of being virtually bed ridden for 10 years the flesh got flabby and you could even feel the bone in my left arm. Since being on the keto diet for about a month I've put on a couple of pounds and I'm firming up!
I don't get hungry inbetween meals and I don't crave sugary fruit juices anymore. I feel more energetic.
As for antidepressants, the doctor was wrong to put you on them! My doctor tried to get me on them before we knew I had ME and lots of people have this experience.
Thanks for the reply. I'm not under weight but I'm heading that way now, the amount of weight loss isn't a problem yet but will be if it carries on much longer. I eat a fair amount and have taken to eating whenever I am hungry and I've managed to slow the weight loss down but it's still going down. I've only been suffering the ME symptoms about a year and I am still trying to battle on and lead a normal life with work etc but it's just not happening and I'm having to take days off work and leave early regularly and I don't feel like it can carry on much longer.
I suppose that for you to work while having ME might be making your body work extra hard getting enough energy from your foods. Even little things take so much effort for us.
It's said in studies and by some ME experts that our mitochondria don't function well enough in turning food sources into energy.
That was my thoughts but the doctor doesn't seem to agree and while I understand it's not an easy diagnosis and they have to rule everything out first I feel as though the doctors just don't believe how much I'm struggling or that ME isn't an acceptable diagnosis they have pressured me into having blood tests for thingd I know I don't have like hepatitis and AID's, their reluctance is annoying to say the least!
I've been diagnosed with CFS/ME, but now under investigation for Fibromyalgia as I experience a lot of random muscular and joint pain. On top of that I have various other symptoms / problems, one of which is IBS which can go hand in hand with CFS/ME and Fibromyalgia. My diet has become very strict and lacking a lot of foods due to intolerances. During the investigation period when I became ill I lost 4 stone, and was declared underweight. I have been prescribed Fortijuce for the last 6 months now and my weight is slowly increasing. Its been very useful maintaining my weight, plus giving me the vitamins and minerals I need due to the lack of balanced diet I'm on.
So yes, I've had weight loss whilst being diagnosed with CFS/ME, but mine I suppose has been intentional due to my poor diet. Like you I've had alsorts of tests done, numerous blood tests, upper abdominal ultrasound, head MRI (still awaiting results), colonoscopy, endoscopy, sigmoidoscopy, urine and stool tests, and nothing has shown up. I'm currently having CBT for anxiety and depression, that I believe I don't have, or if I do, I don't feel like I do and doesn't cause me any issues.
Sorry I can't be anymore helpful towards your problems, but it does seem weight loss is a factor with sufferers of CFS/ME, in one way or another.
Take care and all the best.
Thank you Paul that's a great help. I have a gastroenterology appoint next week which will no doubt lead to endoscopies etc but all my digestive system seems to be working as it should but I'll have to wait and see.
A diagnosis would be great but I'll just carry on as best I can and see.
How I envy you having a fully functioning digestive system. Look after it, I certainly didn't realise how much I took mine for granted until all my problems started.
You will probably have endoscopy, maybe a colonoscopy as well, as they are quite routine and very useful in diagnosing certain problems. I had to make sure they pumped me with sedative for mine, I'm not keen on these types of invasive procedures, but glad I got them done.
All the best for the future!
Thanks Paul. I will look after everything as best I can, things like this make me wish I'd taken better care of everything.
I'm not keen on the procedures that they'll probably do either but like I'm sure you did I'll go ahead with them because I know it's for the best.
Thanks again. All the best to you
Apparently there is a link between B12 Deficiency and CFS/ME IBS and Fibromyalgia
Can't say I've ever had my Vitamin B12 and Folate levels checked, but I'll certainly mention it to the doctor when I see him next.
Thanks for the info.
Did you have your Serum Vitamin B12 and Folate levels tested and if so do you know the results?
I'm not a medically qualified person but wonder whether you have changed your diet which might explain your weight loss.
Yes I had those tested and I don't know the figures but 3 doctors have been over my results and agreed they're normal
Of course. During my first years with this illness, I had extreme weight loss. This is not an uncommon symptom. Sadly, I've seen your type of post often on this forum. It goes like this: doctor does many tests. Everything comes back normal. So doctor concludes patient must be depressed and puts patient on antidepressants. Because most doctors are woefully ignorant about ME/CFS, we have to advocate for ourselves. Go to the "solve ME/CFS initiative" website. If the symptoms listed there resonate with you, get to a specialist with a knowledge of ME/CFS, preferably an infectious disease doctor or a rheumatologist. When my GP told me I just needed a vacation, I immediately went to a specialist at UCLA. He diagnosed me within 20 minutes or so, just by first checking that my bloodwork was normal, and then asking me questions about my symptoms. Unfortunately, there is no treatment for this illness. The best advice I could give is to take it easy and pace yourself. Don't try to push through the fatigue, or you may worsen chances for a recovery. And if you are not depressed, get off those antidepressants, but do it very slowly.
I did find some research that some people with CFS loose weight and some people gain weight,some tests doctors don't usually do are lactic acid levels,cpk levels and extremely rarely test blood volume, I have found research that says people with CFS quite often have high lactic acid levels and high compression levels which explains why so many people with CFS say they feel like they ran a marathon,my lactic acid levels and come levels have tested extremely high,the levels a marathon runner would have after a marathon,which also explains the exercise Intolerance in people with CFS and the fatigue,brain fog,etc,the low blood volume explains the lactic acid and clinical levels as enough oxygen would not get to the cells, I always feel like I just ran a marathon, I had to give up running marathons 25 years ago,also the flu always triggers a relapse for me.btw low blood volume can trigger and with as the body panics when it doesn't get enough oxygen,heart racing,fast breathing,etc,Dr Bell notice the low blood volumes in cfs patients as early as 1994
Hi patrick and others; yes I feel that what Patrick has just said above, makes a Lot of sense, and this is how our treatment/s should be directed. From all that I have read (both from this forum, and other research sites), it all adds up/makes sense.
Perhaps if we could all get our primary carers to listen to this piece, and test our Lactic Acid Levels and Blood Volume, we may get some real treatment, and help us to "just keep going"???
?As for the anti-depressants, I don't object / make a noise about those of us who find that we DO need them at times, as no-body could possibly continue to live like we do, and Not feel depressed at times. What I do is have my Zoloft with my other medications, and only take one when I feel down (maybe 1 - 2 times a week). They just give me that little bit of extra coping help. Hence, please don't anyone feel that they should not take them if they feel they are feeling depressed, as I would rather take my anti-depressant, than be suicudal as many others have told us they are feeling. Bron
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