CFS

Last Updated: 15th March 2019

What follows is my own experience of something that has been 'diagnosed' as CFS. I've written it up here because it affects most aspects of my life and having it here gives me something to which I can refer people when necessary.

What is CFS?

CFS is an initialism for Chronic Fatigue Syndrome but it's a name I don't like very much because even if you understand that in medicine that term "chronic" means "persisting for a long time or constantly recurring", it still implies that all I need is a jolly good rest.

I started with it in 1997 and I've tried having a jolly good rest as well as a bunch of other things, and my CFS is still a major issue.

Note that I used the term "my CFS" because, as I will explain, it's not the same for everybody.

What are the symptoms?

FOR ME, on a bad day it's like I have the flu but without the runny nose and sore throat i.e. tired, achy, no energy, unable to even think straight. I also get days when I'm physically tired (no energy) but my brain still works such that I can read or write program code. Then there are days when I'm physically fine but my brain is in zombie mode such that I struggle to make even the simplest decisions. There are other days when I'm just fine.

Please note that although I keep saying "days", things can change within the course of a day. The main thing to note is that it's relatively unpredictable. A day can start well and deteriorate. Or it can start bad and I'll perk up. It's a bit like the weather, but LESS predictable.

One thing is clear though: if I need rest and I don't take it, I get worse. There ARE things I can use to push through, but it's like borrowing from a loan shark - I get hit with a MUCH bigger bill later on.

Oddly, the reverse it not true i.e. if I'm good in the morning, blasting away at something will not necessarily result in fatigue.

How come your description of CFS doesn't match with what I've heard elsewhere?

Because CFS is something of a "catch-all diagnosis". It's a diagnoses that's reached after other possibilities have been eliminated and they still don't know what's causing it. So the cause could be any number of things (and there are numerous theories out there).

When I started with this in 1997 I was in a well paid job and despite having a free National Health Service here in the UK I was able to fast track (I wanting this thing fixed fast) to see various doctors and specialists who did blood tests, thyroid tests, adrenal gland tests, and a bunch of other stuff. I also saw a psychologist to check out the possibility of a psychological cause. None of them was able to identify the source of my fatigue... so I was given a diagnosis of CFS and told to "come back if anything changes that might give us another clue".

There was a time when ME (Myalgic Encephalomyelitis) and CFS used to get lumped together (Fibro Myalgia was also in the same pot) however the medics now know enough about ME and Fibro that they separate them out. I believe that in time they will distinguish between even more of the problems that are currently lumped together under the banner of CFS.

How does CFS affect your life?

The biggest problem is that it makes me unreliable because I never know how I am going to be on any given day until the day arrives.

Thus I can't hold down a job because employer's just can't give me the amount of flexibility that I need.

It's also really problematic with regard to seeing shows, attending events, and traveling in ways that require advanced booking. There's always the possibility that I won't be able to do it so unless it's so cheap that I can afford to just throw away the tickets if I'm not up to it... This DOES happen.

Family and friends also have to understand that I may need to pull out of something at the last minute, which is also quite difficult and has often lead to criticism and ill feeling.

Have you tried X?

If you think you know how to cure my illness or of something that helps, please have a word with your GP. He/she can write it up for the BMJ before writing a book together, opening a private clinic, and making a heap of money at the same time as becoming famous for curing people around the globe. In the process my own GP will get to hear about it and pass the information on to me. :-)

Please excuse the sarcasm but after 20 years of illness I've been told about more cures and therapies than I care to recall. It's not that I wouldn't like to be rid of CFS (something we suffers get are often accused of if we are reluctant to try some supposed remedy) but if I were to try everything that everybody suggested I wouldn't have time to LIVE MY LIFE.

Do you have any advice for others who have it or think they might have it?

  1. If you think you might have CFS, start keeping a diary. I didn't start until I was six months in and by that time it was hard to remember the order of all the various events that took place. A diary may also help you to identify things that help and/or make you worse.

  2. Look for a forum or other group where you can talk to other people with CFS and get things off your chest in the company of people who understand what you are going through. I was lucky to find a good one in the early stages of my illness and it really helped. Alas I cannot simply send you straight there because as with all communities, it changed over time and is no longer the place it once was. Find a community that's right for you.

  3. If you do have CFS, learn to accommodate it. There is no real logic to my pattern of good and bad days. Taking it easy on a good day does not guarantee that the next one will be good. Neither does resting up on a bad day guarantee that the next will be better. What is guaranteed however it that if I don't take it easy on a bad day, the following day will be worse. I have identified a few things (especially caffeine and/or alcohol) that will allow me to push through a bad day if I really have to but I always end up paying for it big time when I use them.

  4. When dealing with officials (benefits agencies and doctors) it's worth remembering that there are many folks in this world with no employment prospects other than some low paid mind-numbing tedium, who would much prefer to spend their time glued to the television, and for whom a diagnosis of CFS would be a dream come true. The officials have the unenviable task of trying to separate them out from the genuine cases.
    In some ways I was lucky that when I got ill I had a really well paid job in IT and the lifestyle that it afforded me. It didn't take much, although I did have to point it out once or twice, to see that I was better off being well and working for a living than I was being ill and filling in claim forms for poxy state benefits. Another thing that has often surprised officials is when they ask me if I watch much TV and I tell them that I don't have one.
    You'll get much further with officials if you can make them aware that you make the most of your life despite of your limitations and that you'd be able to have even more fun if it weren't for the damned illness. As an example: I used to enjoy playing music but couldn't join a band because I couldn't commit to practice sessions or gigs.

  5. Be tolerant with people who think they know how to cure you.
    If some helpful amateur tells you they know of a cure then listen politely before either a) pointing out that lots of illnesses get lumped together under the banner of CFS and while their suggestion may have helped some people you don't believe it is appropriate for you, or b) say you'll research it on the web and ask your GP about it.
    If the person presenting the idea is your GP, listen to what they have to say, do some additional research, go back to them with any concerns that you have, and then try it - they could be right. Be wary however of new GPs who do not know you very well or any who say that they always treat CFS with X. CFS is not a single illness so there cannot be a single right way to tackle it. If you find yourself dealing with an arrogant GP then politely and subtly make him aware that you are trusting him with your wellbeing. A friend once told me that a new GP had suggest that he try something that he felt was entirely inappropriate however the somewhat GP seemed adamant that he knew best. Rather than getting upset my friend explained to the GP that he felt that such a course of action would most probably result in him having to be admitted to hospital but that he was willing to try it if the GP thought it was worth the risk. Unsurprisingly, the GP decided that it wasn't.
    Finally, if the person offering the cure/therapy is an alternative therapist of some kind, suggest that they give you the treatments for free (or at least the initial ones) and that you'll pay on results. They'll suddenly lose all confidence in whatever it is they were trying to sell you although they'll try to cover it by accusing you of not wanting to get better.

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