Chronic Fatigue Syndrome

What follows is my personal experience of something that has been ‘diagnosed’ as Chronic Fatigue Syndrome.  It affects most aspects of my life and writing about it here gives me something to which I can refer those who ask about it.

What is CFS?

C.F.S. stands for Chronic Fatigue Syndrome.  It’s a name I don’t like very much because it implies that all I need is a jolly good rest, especially when you consider the commonplace misunderstanding of the word chronic, which does not mean “really bad”, but is a medical term meaning that the condition persists for 3 months or more.  I started with it in 1997 and I’ve tried having a jolly good rest as well as a bunch of other things that have made no difference.

What are the symptoms?

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 exhausted but my brain still works such that I can read or write program code.  Then there are other 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 and when I’m just fine.

Please note that although I’ve used the word “days” above these periods of fatigue can come and go within the space of a day.  It’s very unpredictable.

How come your description of it doesn’t match with what I’ve heard elsewhere?

When I started with it in 1997 I saw various doctors and specialists who did blood tests, thyroid tests, adrenal gland tests, and a bunch of other stuff.  I even saw a psychologist to check out the possibility of a psychological cause. None of them was able to identify the source of my problem… so I was given a diagnosis of CFS.

As you can see from that: CFS is diagnosed, if you can even call it a diagnosis, by eliminating other potential causes of the fatigue.  There was a time when CFS and ME (Myalgic Encephalomyelitis) were get lumped together with Fibromyalgia also thrown into the mix.  However ME and Fibromyalgia have now been separated out.  I believe that in time they will be able to distinguish between even more of the problems that are currently being lumped together under the banner of CFS.

To answer the question therefore: different CFS sufferers may well have different symptoms and levels of them because they are suffering from different conditions, between which the medical establishment is as yet unable to distinguish.

How does this affect your life?

My biggest problem is that it makes me unreliable.  I never know how I am going to be on any given day until the day arrives.  Thus I can’t hold down a normal job because no employer would be able to give me the amount of flexibility that I need.  My ability to predict whether or not I will be able to meet a deadline can be similarly problematic.  This is the primary reason why I am self-employed.

Outside of work/business, it is also very difficult to see shows, attend events, or travel in ways that require advanced booking… unless the cost is so cheap that I can afford to just throw the ticket away if I’m not up to it on the day.  Friends and family also have to understand that I may need to pull out of something at the last minute… and this has put a huge strain on relationships.

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.

My apologies for the sarcasm but after 10 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 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 tends to happen with all communities, it has 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 I have found to be pretty certain 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 sugar, caffeine and/or alcohol) that will allow me to push through a bad day if I absolutely have to… but I always end up paying for it big time the next day.

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 sat in front of a television set, 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 that 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 far better off being fit 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 told them I didn’t even have one.

You’ll get much further with officials if you can make them aware that you make the most of your life despite your limitations and that you’d be able to have even more fun if it weren’t for the damned illness.

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 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 offer to pay on results.  They’ll suddenly lose all confidence in whatever it was they were trying to sell you… although they’ll try to cover it by accusing you of not wanting to get better.