CFS - how do you know if you've got it?

[Kirby]

How do you know if the fatigue you get is fibro fatigue or chronic fatigue syndrome? I am tired so much and need to sleep late every day, then need to sleep again later afternoon and the don't sleep at night unless medicated! I find it so debilitating

[fibrojude]

my doctor said its the same lol still investigating for me sooo drained had Mri sat and cant see a neuro till August for results what a joke hope your ok Kirby loosing the will to go on today in flare !

[Hidden]

I think its more to do with the points of pain that people with FMS have not so much the sleeping although i can sleep for britain on a good day its very much all conected but keep nagging a GP for a consultent appointment ... write everything you suffer with down after all they should know xx hope that helps a little ... xx gentle dyslexic hugs xx

[fairycazzie]

I agree with above.. keeping a diary is a good thing ! i keep a daily diary because it is very easily forgotten what the day before was like. Tiredness is overwhelming and of course having other things on top of that ie the nerve pain etc it alll adds up ifeeel absolutely jiggered!

I have to still run work chauffering girls and organising and payroll/paperwrok which i have mega days struggling but it keeps me going only just though..i was going to say focused.. For myself it is more trying to concentrate hard on what am doing, but that i cannot say as it is something just got to get on with otherwise i will have no house as i earn more than my hubby. He does a long day at work and comes home and will clean and sort washing and prep some tea for the day after. i now spend most my days on sofa soon as i get home. Just cannot believe how crippling all this tiredness is after years and years of so much energy!! xxxi used to love saying FOF (focus on friday) but now that is just a drop on sofa and is not so enjoyable as my body knows it has finished running around so the batteries die hard. xx You have to have something to keep you going because you can seize up either way really hmm does that sound rite sorry!!! .. sleep deprevation is bad and i drive a LOT aswell as the work. x

[Kirby]

Hi, thanks for all your replies and clarifications and sharing your experiences x

[Hidden]

I have Fibro and CFS/ME and consider them all to be inter-related as the symptoms can be very similar. I was treated at a CFS Clinic and taught Pacing Therapy which I found helped so much. I had been sleeping and in bed for most of the day and couldn't understand how I still felt completely exhausted. Too exhausted to get showered and dressed, to tired to talk . . . it felt awful. By going to the Clinic, they taught me that I was actually making my CFS worse by spending so much time in bed and that I could learn through pacing to be more active, which in turn wouldn't make me feel so exhausted all the time. It works! It requires discipline and commitment, but I do have more energy these days, my first resort isn't bed any more, in fact it's my last resort. I now rest in other ways, in a comfy chair for example. It's all a question of learning about the fatigue side of things and finding different ways to rest instead of it being bed all the time. I still get exhausted, but it doesn't feel so drastic any more, I know when I need to rest and also how to. I hope this helps a bit. By introducing even the simplest activity then resting afterwards it slowly retrains the way we have been leading our lives with bed and Fibro, which in turn creates more energy, more positive thinking, with important rest periods in between and more constructive sleep at night and better waking times too. Obviously if someone is having a bad flare-up of symptoms then it's not always possible to pace and rest becomes more important then. However, on better days pacing can really improve general well being and quality of life.

[Kirby in reply to Hidden]

Yes this is good advice. I am quite good at pacing and think things would be a lot worse if I didn't!! I do find though that I need to lie down in bed, under covers as this is most comfortable, both in terms of body temperature and also to restrict aching necks or anything else which might result from sleeping or resting awkwardly!

[LindseyMid]

Fatigue, even debilitating fatigue, can be Fibro. And autonomic symptoms, such as dizziness, are typical of Fibro.

Swollen glands would be a more typical CFS/ME symptom.

With Fibro, the issue is not getting enough restorative deep sleep - it is sleep quality that is important, more so than quantity. This can be treated with medications and can be helped with lifestyle measures.

[Kirby in reply to LindseyMid]

Yes, I get dizziness that comes with fatigue or from having too much medication. In fact, there a re lots of triggers for dizziness. I'd never associated it with fibro until I was diagnosed and always assumed it was to do with panic attacks and agoraphobia