Tuesday, March 2, 2010

What does CFS feel like?

For people who don’t have CFS or don’t know much bout it … this info is for you!!

Chronic fatigue Syndrome is such a misleading name for this illness, which I guess is why it is also known as ME (myalgic encephalomyelitis) and more recently CFIDS (chronic fatigue and immune dysfunction syndrome).

When you use the term ‘fatigue’ many people often get the wrong idea. I remember telling a work colleague that I had CFS and her response was ‘Oh I had that once and I was tired for a whole month’.
WRONG!!! Chronic fatigue and feeling tired are 2 different things altogether. Tired is when you have had a busy day and you’d like to have a nana nap in the afternoon. Chronic fatigue is when you cannot make it all the way through having a shower without having to sit down and rest and then afterwards feeling like you have set a new record for running a marathon!

Fatigue is of course only one symptom associated with this illness. There is huge list of symptoms, most people have several but not all on the list. The ones I have daily are fatigue, extreme muscle weakness, dizziness, lack of balance, random muscle and joint pain, brain fog, lack of concentration, memory loss, problems with speech, low grade fever. You can see why the term chronic fatigue can be frustrating and invalidating to someone who suffers all these symptoms.

To try and sum up how this makes you feel is kinda difficult but I read something yesterday which I thought was pretty apt. A Dr who deals with this stuff every day said that people who have severe CFS feel the same way that someone with AIDS does about 2 months before they die. I have personally spent time with people dying with AIDS and I believe this statement is probably quite accurate. Sad but true!

Of course people suffer with CFS in varying degrees. Some can keep working, some cannot, some cannot leave their homes, some cannot even leave their beds!

I am currently in the ‘cannot leave home’ category. I go out only for Dr’s appointments etc and that is with the help of family of friends.

I know this all sounds totally hopeless and just dreadful but I count myself lucky. There are people far worse than me and I at least am not suffering depression like so many others! I read the other day that up to 20% of CFS sufferers commit suicide. I am fortunate not to feel so hopeless ……

Who knows what’s around the corner, right?!


  1. Good description, Lee. I always tell people that the closest thing to CFS that a healthy person could relate to would be having the flu - only it doesn't go away.

    When I tell someone about my illness, I don't say CFS right away - I usually start by saying I have an immune system disorder that affects just about every part of the body.

    Drives me crazy when someone says,"Chronic Fatigue Syndrome? Maybe I have that - I feel tired a lot!"


  2. hahaha I know!!! 'Gee maybe you should get some rest, that works 4 me when I feel sleepy' LOL. Oh well, we shouldn't expect anyone to understand really ... after all, we look like we are well most of the time ....

  3. Lee- As someone who was diagnosed with ME/CFS on Friday, this post has been very useful to me.

  4. Sorry to hear your news Chris :( I think the first few weeks are the worst simply because of the shock and uncertainty etc. Even if your symptoms don't improve you will adjust to them in some degree. It's not all bad Chris, just different !! :)

  5. my sister has chronic fatigue and its truly awful to see her in such pain everyday for over 2years now. i would just like to say to every person who has ever seen a family member or close friend go through this/going through this. It's horrific, but stay strong. i know im not the only one that wouldve had many harsh words said to you when theyre having one of there worse days. and i know i cant compltleyy understand her pain&&feelings, it must be unimaginably hard to battle every second of ever day, but for any people with CFS please recognise it's not our fault we want to understand. and i know without a seconds thought if i could go through my sisters illness instead of her, i would. so please think about that before you start to scream when we are trying to help. my sister has also had hypnogogic halluciations for just under a year now, it's been an incredibly tough year for everyone in my family, many people have been critically ill, could stress make my sister more vulnerable to her panick attacks&&her halluciations?often she doesnt remember who me or my mum are. im just wondering do alot of people with cfs experience this or is it just a few?