Since the time my CFS symptoms started (about 2 and a bit years ago) I have been losing weight. Ive been wondering if its one of those weird, no explination CFS symptoms. I was once 5'5" and 55kg (121 lbs), and I have dropped to 45kg (99 lbs).

I eat like a horse and most of what I eat is high in fat. I should be OBESE, yet I continue to lose weight.

Ive seen several doctors about it but most didn't seem to care, they just told me to eat more. The ones that were concerened didn't tell me what I can do to put on weight.

So, what I really want to know is if any of you have experienced anything similar, if you think it has to do with CFS, if you think its unrelated, or if you can help in any other way.

Thanks.

Since the time my CFS symptoms started (about 2 and a bit years ago) I have been losing weight. Ive been wondering if its one of those weird, no explination CFS symptoms. I was once 5'5" and 55kg (121 lbs), and I have dropped to 45kg (99 lbs).

I eat like a horse and most of what I eat is high in fat. I should be OBESE, yet I continue to lose weight.

Ive seen several doctors about it but most didn't seem to care, they just told me to eat more. The ones that were concerened didn't tell me what I can do to put on weight.

So, what I really want to know is if any of you have experienced anything similar, if you think it has to do with CFS, if you think its unrelated, or if you can help in any other way.

Thanks.


I believe loss of weight would be an unusual symptom of CFIDS. Usually, one gains weight, because unless you are in the midst of GI symptoms, it feels better to eat as that contributes to more energy. You may have something else going on. If the weight loss is profound I would consult with another doctor or nutritionist. If it is minor, you may simply have a high metabolism. I have a high metabolism and do not gain weight no matter what I eat. But if I started to lose a lot of weight I would be concerned.

Kylie1, I'm a pharmacist and what you explain is a little mind boggling to me. I'd have to say that it is very rare for someone with Chronic Fatigue Syndrome to have weightloss. It's much more common to gain weight, especially when most sufferers are very sedentary much of the time. Unfortunately, I'm not a doctor and I don't know you as a patient. I hate to take guesses at this so I'm just gonna throw out a few ideas.

The first thing that came to mind when I read your post was something that an old patient of mine had. There is a condition that sounds a lot like yours. It is known as cachexia. Out of a medical dictionary, cachexia is a "condition of severe malnutrition and negative nitrogen balance characterized by anorexia, weight loss and muscle wasting. The physiological, metabolic, and behavioral changes in cachexia are associated with patient complaints of weakness, fatigue, gastrointestinal distress, sleep/wake disturbances, pain, listlessness, shortness of breath, lethargy, depression, malaise and the fear of being a burden on family and friends."

I don't know if all of this sounds like you, but it was my first instinct to think of this so I wanted to at least share that with you. Judging from the fact that you believe you have Chronic Fatigue Syndrome, I'm willing to bet you share a lot of the same symptoms. Of course, you state you eat like a horse, however, how is your appetite? Do you force yourself to eat and feel nauseous most of the time when you do? The reason I ask this is because most sufferers of cachexia are almost never hungry and eat very little, but even when they do it doesn't help much anyway.

Ok, with that said, its only fair to tell you that cachexia is not really a disease on its own but rather a symptom of one. Since your symptoms have come without explanation it is important to get tested for everything including HIV, breast or other kinds of cancer, and Lyme Disease.

Anyway, these are just my ideas, hopefully you've already had all of these ruled out and I am completely wrong, but I feel that I should at least try to help. Please let me know what you think...

Hi Lamotta

I haven't been on this board and was just checking it as I have a friend with possible CF...I read your post with great interest because I recognised so many of the symptoms of cachexia in myself and wanted to talk to you more about this.

I am 20, 5'6" and around 112-115lbs. I suffered from anorexia since the age of 11 but have spent the last couple of years trying to recover and I am now much better. However there are some things that bother me...I am ALWAYS exhausted, not even just tired but exhausted...I get up at 6.30am and have to go to bed at 8.30-9pm because I am just so tired. I feel as though I never have any energy and feel quite weak and sometimes my arms and head and legs just feel so heavy it's a struggle to do anything. I get a lot of sleep and most of the time sleep straight through, but I never feel as though I have had enough sleep because I'm always exhuated. I also try to eat breakfast, a small lunch and dinner every day but often I'm just not hungry and feel awful if I do eat. The problem is because of my past experience with anorexia everyone gets so concerned if I skip a meal I have to eat to keep them happy, even when I feel full already and even if I haven't eaten much else during the day.

Sorry for going on about this, I just wanted to get your opinion as to whether I should see a doctor or whatever...

Other symptoms that go with what you posted: I get ill a lot: I am still shaking off a cold that I got last October, and I also suffer from constipation even though I eat loads of vegetables and take lactulose when I have to...don't know if this fits in with the cachexia symptoms? I have also suffered from depression in the past and get a random pain in the right hand side of my chest which I've had since last october, and i get shortness of breath sometimes just when I'm sitting down, it feels like it does when I'm nervous about something.

Do you think that perhaps I should see a doctor about all this? I don't want to go in there and be a nuisance if there's nothing wrong. If it is cachexia is it something serious, or is there nothing much that can be done? Sorry for asking so many questions, I'm just really curious because I've always thought I was just strange for always feeling rubbish, I never actually put it all together before like this :)

Any help you can give would be really appreciated!
Thanks
J*L

In your case, Lucy, it sounds like your symptoms are related to anorexia nervosa. Most of your symptoms sound like depression and anxiety which are big factors in this condition. In recovering from this, did you seek proper counseling and/or did they put you on any type of antidepressant medication? Its important to remember that depression and anxiety can lead to some pretty debilitating physical symptoms which include fatigue, oversleeping, shortness of breath, and a weakened immune system.

Cachexia, like I stated before, is primarily a condition of muscle wasting and weight loss due to a chronic illness such as cancer and AIDS. No matter how much you eat, you still lose weight. But, if you feel that your problem is something physical, then you should definitely have a doctor give you a check up. Maybe get your thyroid and other hormone levels checked as well. If everything clears, then a good therapist and possibly some medication may be exactly what you need to get you feeling better. Good luck and please fill me in on what happens.

Hi Lamotta

Thanks for your reply :) I went away and did some research on cachexia last night and saw that it seems to primarily be weight loss, with everything else as kinda secondary factors, so that definitely isn't me coz I find it really hard to lose weight. With regards to professional help, I was put on Seroxat which helped and saw a counsellor for a while. I went to see a psychotherapist but never again, she was awful! I don't see much value in counselling anymore - these boards are pretty good and I don't think I'm ill enough now to need professional help.

I guess I just get so fed up with the ongoing side effects of an ED that sometimes I just wish there was an answer to it all and a drug that would make it all go away. It probably isn't a physical thing like thyroid or whatever I think I've just messed with my body so much that it's gonna take a while - if ever - for everything to work properly.

Thanks for your advice, and I'll let you know how it goes if I do go to see a doctor!
J*L

Kylie,
I also am experiencing the weight loss problem, as well as a complete inability to gain weight. I am also 5'5", and I'm about 114lbs. right now, which is really good for me. Usually I'm under 110. When this illness started, I was about 125lbs. I do have some of the symptoms of cachexia like fatigue, GI upset, malaise, etc., but I eat almost 3,000 calories a day, and it's hard to gain even a pound. And if I do gain it, I lose it quite quickly, even though I'm sedentary most of the day. I feel that there is DEFINITELY something seriously wrong with me. Right now I'm researching more about Lyme's Disease, because I think I have more than Candidiasis and Adrenal Insufficiency. Something else has to be causing both.
~Katalina