ME symptoms plus weight loss

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.

Hi Alan

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.

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.

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