I have recently been diagnosed with CFS (as much as i hate this term, i'll use it here for simplicity purposes). I was actually so exhausted I was admitted to hospital for a week where they did various tests, and concluded that i had CFS. I can clearly remember the exact moment that this horrible fatigue was bought on- i had just had a meal in pizza express, returned to a library to continue studying and then on my way home just fell into the deepest fatigue i have even known and practically had to crawl home. i have not been the same ever since and am completely housebound (i've had to take the year out of uni as a result of this). I remember standing on a pin in Central London (i'm not sure if this is relevant...)a few days before this and also banged my head on the door (not very badly, just a little bump), and also had a heavy night out drinking a few nights before which gave me severe nausea for 2 days (my hangovers have never ever been this bad before). the doctors are convinced i had a virus and that the CFS was onset by this supposed 'virus'. I do not actually think that i have CFS as i do not experience any cognative problems, any muscle problems etc- i only actually suffer from debilitating fatigue! The docs put me on 10mg on Citalopram and discharged me from the hospital.
Since my discharge, i have lose weight rapidly (11lbs in 1 month, which for a girl who was about 130lbs to begin with is quite significant!). This, combined with the fact that my only CFS symptom is fatigue, makes me think that I have been misdiagnosed. The tests for diabetes/glandular fever/ HIV all came back negative. I weirdly felt absolutely FINE (the fatigue had completely vanished) one morning after waking up having had a bad dream, but this only lasted for about 3-4 mins before the debilitating fatigue came back (again, i do not know if this is relevant at all, but i thought i'd put it in there).
I am a 20yr old female who used to live life to the full and was extremely lively and active! this is a very physical problem and i do not feel depressed/ anxious in the slightest. Does anyone have any ideas??
Thank you for your response! i'm actually an English student but study in Scotland (although i've had to take the year out due to the debilitating fatigue). I was 130lbs a month ago (a nice healthy weight for a 5'6 girl) although now only weight 119lbs. it's a significant amount to lose! fortunately i have my mum here to prepare meals for me (there would be no way i'd be up to preparing my own meals). i have a decrease in appitite but am definitely eating enough to maintain weight!
Inactive and eating healthy rationally follows initial fears that misdiagnosis behind significant weight loss.
CFS diagnosis has more criteria than fatigue with a host of treatable illnesses having the symptom a new doc and second opinion is within patient rights.
I agree that your symptom does not sound typical of ME/CFS, or rather it is not usually the only one. From what I have been told by various medical professionals there are a host of possible symptoms for the condition, around 12 'classic' symptoms and, if I understand it correctly, around 4 that if you don't have them you probably don't have the condition.
Generally speaking the consensus seems to be that those four are post-exertional malaise (PEM), unrefreshing sleep, concentration problems and muscle pain, typically lasting at least six months. As I understand it you can have any number or combination of the other symptoms but if you don't have those four it's rare to get a diagnosis of ME/CFS. Weight loss can be one of the other symptoms but is not that common with the condition, at least not at onset.
Obviously only a doctor can diagnose you but I would suggest you get a second opinion. There are a host of other conditions that fatigue is a typical symptom for so it sounds to me as if you need further tests to rule out other things before the last possibility left is ME/CFS. That is one of the problems with the condition, it is a diagnosis of exclusion so everything has to be excluded before you can confirm it.
It is also usual (though not I believe necessary) for the condition to be triggered by either a viral infection or a traumatic stress of some kind, though not usually depression. It is not a mental condition but a physical one that often develops a secondary symptom of depression later down the line. It is commonly the case that sufferers were previously fit and active, leading busy lives before onset, the type of people who never stop, the go getters, the pushers and the constant givers, which is partly why it can result in depression when that all disappears.
I'm sure you have done your own research but here are a few websites listing typical symptoms to help you figure out if the diagnosis is correct or not.
I hope you find your answer, whether it be confirmation or a different diagnosis but I would say at the minute you have grounds to want to investigate further.
That's part of the problem isn't. Because the medical profession hasn't conclusively proved what ME/CFS is, what causes it and therefore how to treat it, even the medical profession that we rely on to "cure our ills" don't seem to know much about it either.
Hence, despite the fact we suffer from fatigue and cognitive problems we are left largely to do our own research and manage our condition(s) ourselves.
Consequently you can pick up a lot of information from fellow sufferers on forums like this, but just bear in mind, most of us are not medically trained ourselves and are only looking at it from the point of view of our own experiences or what research we have done. Therefore we rely on that research being at least partly accurate. Also there seem to be so many variables and everyone presents and reacts differently, and the condition changes over time.
Bearing all that in mind I would just suggest you be careful not to take what everyone says as gospel (including me) and do your own research and relate things to your own experience. Then ultimately you do need to ask your medical support professionals and have more test done etc in order to get a fuller picture. And still it's largely only theory or the most likely answer until such time as research confirms anything.
But that doesn't stop us from being able to make suggestions of possibilities to investigate or offer practical and emotional support to others that are going through the same things.
Firstly, thank you very much for taking the time to write all that you did- i found it very informative and has given me a bit of hope that perhaps i do not have CFS!
I went to visit my doctor today where he weighed me (fortunately i was weighed 2 months ago so there is medical evidence that i have lot 5kg). The doctor has referred me to chronic fatigue specialists and I am hoping that they will be able to shed some light on the situation.
I am going back to my GP in a month where he will look at further weight loss. He did not really seem too concerned by the weight loss and told me that it was most probably part of the CFS, and is just one of those things. I have already been tested for a whole host of other diseases/infections/conditions when i was in hospital so I am sure that they would have discovered anything else wrong with me. However, i do not show any symptoms of those 4 'classic' symptoms, and have looked up all 12 online, and only suffer from unrefreshing sleep and post-exertional malaise. I am hoping that I will go to the CFS clinic and they will be able to give me some more advice about what could be wrong with me, because given that my symptoms do not meet the diagnostic criteria of CFS, it seems unlikely that that is what i have.
The doctors have explained to me that CFS is a diagnosis of exclusion, and more of an umbrella term used to describe an array of symptoms that they do not understand. I get the impression that no one really knows what is wrong with me, but I am aware that a whole host of tests have been done which have all come back negative.
Once again Margaret, thank you very much for your informative post. In the meantime I will try not to lose any more weight and will just ride out the next month until I am able to see my GP again. I really appreciate your help. Take care
Actually post exertional malaise is pretty crucial to the diagnosis as I think I am right in saying that there aren't many other conditions that exhibit that symptom. It's the one where you suffer delayed fatigue after activity usually 24-48 hours later and it can persist for quite a long time.
It is unusual if you don't have general muscle pain, brain fog or cognitive problems as most people with ME/CFS, fibromyalgia or similar conditions do tend to have those symptoms as well. But as I say I'm not medically trained so you do really need to get your doctor to investigate further (or a second opinion if you think your usual doctor is too convinced in diagnosis to continue investigating). And as you say ME/CFS is really one of those "bucket diagnosis" conditions where really all they can say is "you don't have anything we can test for so it can only be ME/CFS". Hence the possibility of misdiagnosis.
Most people end up going through a long series of tests before confirmation of diagnosis which usually lasts on average a year or so. I was tested for anaemia, cancer, rheumatic fever, thyroid problems, liver problems and all sorts.
I think it's the weight loss that is confusing me unless you have also noticed a loss of appetite. You would imagine that the fatigue means you are not as active so unless you noticeably eat less you would think you would put weight on, not lose it. Who knows, many things about this crazy condition are a mystery.
You are honestly the most helpful person I have ever come across- thank you so much!!!
Yes, I'm not really sure if i'd classify myself as having post-exertional malaise to be honest, i go for about 10-15 min walks twice a day (that's the only thing that I can manage to do at the moment) but after 15 mins I have to stop- it would be physically impossible for me to go on. But the fatigue doesnt get noticeably worse after I push myself, but i'm just so tired that it's impossible to push myself. I dont really think that i suffer from it- it takes me about 15-20mins of sitting down to alleviate my heightened fatigue state before i'm back to my usual fatigued state (I'm sure that would only make sense to a sufferer and would sound crazy to any person who hadn't had this condition!)
I have definitely lost my appetite, but am still managing to eat 3 meals a day which I would estimate to be around 1200 calories. I know this is far from enough food but is all I can manage at the moment and am trying to build it up slowly. Although I'm one of those people who ordinarily finds it extremely hard to lose weight and would frequently go on 1200calorie diets at uni to try and shift some weight! The whole situation is so baffling.
I'm glad that you've been tested for lots of things- at least then you can have peace of mind about what the condition is (even though ME hardly has optimistic prospects), but at least you can then try and work out a treatment plan (pacing, etc). Although I'm sure that it would have been very scary having some of those diseases tested for.
You are the most informed person I have spoken to by FAR (and that's including conversations with my GP and Consultants!) Thank you so much for your helpful post, I do truly appreciate it.
Hey! I know the original post is from 3 yrs ago but I am writing this in the hope that you still read this and can give me any information on what the diagnosis turned out to be after going to that CFS specialist and particularly how you are feeling now (3 yrs after being diagnosed with CFS) ...
I am in a pretty similar situation. I am twenty yo and am currently voluntaring for a year in Jamaica. I had an initial viral infection about 7 months ago (in Colombia) and felt extremely tired ever since. There was a period of about 6 weeks during which it felt like it was getting better but then I had something to eat and the tiredness returned. I used to be very fit only a year ago but now I am experiencing severe weight loss as well - despite eating regularly. The tiredness is so intense that I have issues concentrating and just feel like I need a break all the time, which is why I spent the past few days at home! A response would be truly appreciated as it seems as if we have the same thing. I am also having a hard time accepting that it is CFS - if thats what it is afterall ...
toss aside, if you only had three hours a day to live it? What worlds would unfold before your eyes...
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