What is CFS?

People often misunderstand exactly what CFS is, thinking it’s just tiredness or plain laziness on behalf of the sufferer.

I usually describe it to people as a “Permanent ‘Flu”, complete with:

• headaches,
• unexpected temperatures,
• soreness & achey~ness,
• sensitivity to cold (my bones ache even when I’m warm)
• sleepiness,
• lack of concentration & comprehension,
• weird sleep patterns & dreams,
• moodiness (I received slippers for mother’s day that read “Gorgeous but Grumpy”, ’nuff said?)
• severe exhaustion after the simplest exercise (such as a visit to the loo)

Recently, WonderHubby learnt (through a workmate) of Dr Donald P Lewis in Melbourne, and we have found his book, Chronic Fatigue Syndrome / ME: Turning Disability Toward Ability quite helpful in further understanding what we’re all going through.

I wanted to share a bit of his list of symptoms here, as I found it very enlightening and a much clearer outline than any I could give myself.

~Even when I’m not having an “ME Moment”.

Below are the symptoms that Dr Lewis has found in ALL CFS / ME patients.

• All were healthy, active people before becoming ill.

• All have “post exertional malaise”, or pay~back.

• All have sleep disturbance.

• All have trouble thinking clearly, concentrating, remembering.

• All have some mood disturbance that was not present previously.

There are many other symptoms that I and others with CFS suffer with, however according to the book, these five symptoms are present in all cases he has treated since he began studying the illness in 1985.

WonderHubby & I are planning a phone appointment with Dr Lewis later in the month, but I keep forgetting to make arrangements.

It’s also important to realise that post~viral syndrome and CFS are different things. Post~viral syndrome is sometimes an initial diagnosis, for those who remain unwell after an illness. If the condition continues for over 6mths, then it is probably CFS.

There’s a heck of a lot more to know about CFS, and I’m not an expert. I just live with it everyday.

If you think this sounds like you or someone you know, make sure you see a doctor (or several) and get a proper diagnosis.

My diagnosis took over a year, which is pretty quick compared to some people, especially for 20 years ago.

After several experiences with unsympathetic doctors (to say the least), I was lucky to find a GP who believed that I was genuinely unwell. After testing me until I was a pincushion, and finding nothing, he referred me to a fantastic diagnostician.

Most of the tests were repeated and it was found that I had had Glandular Fever (Infectious mononucleosis, Mono, Epstein~Barr Virus, Pfeiffer’s Disease, Kissing Disease), even though previous tests had given negative results.

I learnt that some illnesses, like Mono, are known to occasionally give false~negative results, due to the way an individual’s body reacts to the virus.

My diagnosis took place in 1989, when I was 16. Back then, less than 30% of doctors “believed in” the illness, and the World Health Organisation only recognised it in 1993. WHO classified it as a neurological illness, meaning that it affects the neurological system, rather than the mental wellbeing of patients.

Any Mental Health issues usually develop as a result of being ill and usually socially isolated for a prolonged period of time. These include depression, anxiety and social phobias, of which I’ve had my share.

This is getting rather long and I’m getting tired.
So my apologies, but I’ll have to come back to this another day. If you have any questions in the meantime, please leave a comment or email me on craft AT kidzarama DOT com.

Good luck, I sincerely hope that this information helps you to rule out CFS as a possible cause of ill health.

I would not wish this illness on anyone.