Wednesday, 27 February 2013

Am I tired? Well, no, not really..

As a CFS patient I think it's a normal experience to be asked 'so do you feel tired all the time?'. The answer is kind of yes but not really. I am always fatigued but my fatigued is not the same as your tired.. I might say 'sorry I can't, I'm too tired' sometimes when really what I mean is 'I'm feeling seriously ill, it's just not possible', which probably doesn't help with the confusion, so I thought I'd write a bit of an explanation about tiredness, chronic fatigue and CFS- the differences.

Tiredness is very different from the fatigue of CFS, I can't really describe it. It's not just the severity that's different- the 2 are qualitatively different. Tiredness after a busy day can be a pleasant tiredness, an easier-to-sleep tiredness, a job-well-done tiredness, whereas CFS fatigue is never pleasant. It's really hard to describe but it feels much heavier, much foggier, more dense. It's more like when you're ill with flu and everything is such an effort and you feel weak and sore and exhausted- it's that ill exhaustion, but even that doesn't feel the same. If you've ever taken a medication that's made you feel dreadful and really drained and rough I think that's the closest I ever felt to CFS tiredness pre-CFS, but I doubt most people have had that same reaction to a medication (I'm not meaning medications that make you drowsy- drowsiness is something totally different- CFS rarely makes me drowsy). I don't 'get tired', I start the day fatigued and end the day fatigued, I do get tired but not normal tiredness, although I can't honestly remember what normal tiredness feels like now, but for a long time I remember noticing not feeling it, and I'm sure I'd recognise it if I felt it again now. Some of my pain is also closely linked to my fatigue, as are some of my other symptoms such as my nausea and weakness; if I get 'tired' by the end of the day, my speech gets less clear, I feel physically sick, I'm in agony, my walking isn't predictable and my balance is off, which isn't quite the 'tiredness' most people experience at the end of a busy day.

Chronic fatigue is persistent exhaustion that goes on for months or possibly years. It's a symptom. It's not the same as chronic fatigue syndrome. People who are described as, or who describe themselves as, being chronically fatigued are not necessarily CFS sufferers, in fact unless they have other symptoms they certainly aren't. People, even CFS sufferers or CFS doctors sometimes say chronic fatigue instead of chronic fatigue syndrome but this is completely wrong- the 2 are not synonymous. Chronic fatigue is a symptom of a vast number of conditions, only one of which is CFS.

Chronic fatigue syndrome is a specific diagnosis, albeit a diagnosis of exclusion with plenty of scope for misdiagnosis and differences in the underlying condition of those diagnosed. But my point is that people aren't diagnosed with CFS simply because they are tired all the time, and only a minority of those that are tired all the time will have CFS. A CFS diagnosis is reached by taking a clear history from the patient, a huge raft of blood tests to rule out other possible causes of symptoms and any other investigations indicated by the specific presenting symptoms, and the diagnosis is then reached IF the clinical criteria for diagnosis are met which includes having at least several other symptoms in addition to fatigue affecting everyday life. If diagnostic criteria for CFS are not met, a diagnosis of Idiopathic Chronic Fatigue should be given (unfortunately this isn't always the case in practice and people are wrongly diagnosed with CFS, altering the statistics and messing up the results when these people then participate in medical research... Fantastic..). It's likely that those currently falling under the diagnosis of Chronic Fatigue Syndrome will be found to actually belong to several different subsets with differing underlying abnormalities- we've been grouped together based on a symptom-based clinical diagnosis rather than a fully objective positive blood test after all- but only time and significantly more research will tell what these subsets are and who belongs to which. We've been shown to share significant biochemical abnormalities as a patient population, but it's still my belief (and it's a commonly held belief) that there's a lot of variety among those diagnosed with CFS, which explains the difference in morbidity and the differing responses to different interventions. 

Anyway, I've gone off topic slightly (not like me at all... ;) lol) but all I was basically wanting to explain is that when I say 'I'm tired' I'm unintentionally lying and misleading you all- the English language is just lacking a word to adequately describe the way I do feel, so tired seems like the easy option. The other thing that I really want everyone to understand is that despite the slightly misleading name CFS isn't about being tired all the time- there's so much more to it than that.

3 comments:

  1. Thank you. Describes exactly what I was.

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  2. Hi, thanks for writing this, sorry to hear you suffer in this way, but it's good that you make the effort to help people to understand this condition which is so often misunderstood.

    ...On that subject, I wanted to ask something that may be a stupid question: just wondering whether, as a sufferer of cfs, your symptoms ebb and flow at all, or is the fatigue and other symptoms at a pretty constant level all the time? The reason I ask is, I suffer many of the symptoms of cfs, a lot of the time, but not all the time. I have had all the basic blood tests for anemia, thryoid function etc, all came back normal. It seems to be that if I am not premenstrual (which I am 3 weeks out of 4 and which causes me extreme fatigue of the kind you describe in your post, among other things) or ill with some virus or other (which again I seem to be a lot of the time, and which often seems to have little in terms of sinus/throat symptoms and mainly characterised by fatigue, achey muscles, headaches, brain fog etc) - if I'm not either of those things, then I feel fine. The times when I do feel fine are rare though, since my one non-hormonal week each month can easily coincide with an illness - but I'm wondering if I'm misinterpreting my pattern and maybe when I think I'm ill with a virus, it's actually not a virus but fatigue caused by something else. Is there ever a time when you feel fine, even if it's only for a handful of days every couple of months? Thanks again :)

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    Replies
    1. Thanks for your comment and I'm really sorry you're experiencing these symptoms. Obviously I can't give you any medical advice and would advise you to discuss the possibility of CFS with your doctor, but I'm more than happy to answer your questions about my CFS but please also remember that everyone is different. In terms of whether my symptoms are variable, the answer is definitely yes. You asked whether I ever feel fine for a few days, and the answer to that is no- I do have constant symptoms EVERY day, BUT I have only fairly mild symptoms sometimes, and when I was affected much less severely, before and shortly after diagnosis, I think I almost certainly did have days when I felt fine. If you look at my May 12th Awareness Day post, that describes a bit about the different severities of CFS and the milder end of the spectrum. It could be that you do have a milder form of CFS (that's not to say your symptoms aren't seriously horrible!) or are only experiencing symptoms following over-exertion. It could be that with some activity management and pacing- if it is CFS- you could get your symptoms under control fairly successfully. Did it start following a virus, only it's quite normal to have a period of post-viral fatigue which most people successfully recover from fairly short-term, CFS only comes into the equation if it has been longer than 6 months? Obviously there are a lot of symptoms associated with CFS so it depends what your symptoms are, and before pushing for a CFS diagnosis PLEASE be sure that all other options have been ruled out as now is the best time to make absolutely sure there's nothing easily treatable going on. Also, I don't know much about PMS but I'm sure there must be some sort of treatments for that which could help..? Worth a try.. Best of luck and please do go back and see your doctor- it certainly sounds to me like there's a *possibility* it could be CFS, but a lot of conditions have overlapping symptoms. If you have any other questions for me please do feel free to ask :) X

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