To ask anyone with chronic fatigue syndrome how your life is?

Hi @redraspberry you are pretty much describing me! I am nearly tearing up as I haven't come across anyone else that has been feeling in the same way.

Have you come any closer to figuring out what's going on with you?

My GP thinks CFS, rheumo - hypermobility, I am worried it is cancer fagitue of a cancer that we are missing.

In any case, I totally understand how you feel. And the main way I am feeling is like my whole body is heavy and is made of led and everything takes soooo much effort.

Hi OP and @Lifecanbeshit - I am hope you don't mind me jumping on this thread. I am 18 months in trying to figure out what is happening with me.

Have you ever heard of CFS being triggered by pregnancy and childbirth? Is that a thing?

Quoting this as this is exactly how mine presents, except mine is not mild right now. "Wading through treacle" is also a fantastic way to describe general feeling of movement, and thinking Id say. Diagnosed in 2008.

I am effectively housebound at the moment, and symptoms frequent and severe. I've had to take 2 months off WFH work because I'm totally out of it ATM.

It's been up and down over the years though and when it was really mild, I was able to do more, have a part time job outside the home and even ran 2x a week running 10k, and gym 3x.. but still needed a lot of pacing to avoid worsening and to carry on. Had to be super careful. I couldn't do an extra gym visit, and if I did do something extra like a weekend at the seaside, I was too unwell to do other stuff for a couple of weeks. Kinda like that.

Usual day I'm up at 7am, feed cat, work at 8am (no lights in office, blue filter on laptop, adapted workstation etc,), finish at 4.30pm, partner makes dinner, bed by 7.30pm - Partner has to help me up the stairs by then, with heat packs for pain and stiffness, will fall asleep by 10pm if I'm lucky! Sleep is uneasy and broken despite being exhausted.

Even watching TV is something off if the menu and feels like a big activity if you do it. Very little fun allowed lol.

Have you had any investigation at the doctor's?

Fatigue feeling like being heavy or wading through treacle could be MECFS or it could be something else. You need to check it out and know what you're dealing with.

Sounds hard.

So if you're getting worse, it's because you're not pacing yet. You're constantly pushing beyond what you can manage and suffering post exertional malaise.

I'd recommend going to doctors and getting tests and an eventual diagnosis if you can. It may be something else but it's best to know.

The key symptoms that they look for are post exertional malaise, alcohol intolerance, unrefreshing sleep and they'll also ask about when it started. Often after a virus but not always.

Yes I have MECFS. Took two years to get proper diagnosis but GP diagnosed about three years ago. It's mild but anyone even with mild ME will tell you it is not a mild illness.

What is my day like? Well I work every day but have flexibility at least some of the week. So if I have to go in for meetings then I try and be home next day. If I'm at home I should take more breaks but I often end up taking one long lunch break with a proper lie down and eyes shut. Sometimes I have a short nap which really helps.

It's all about pacing.

It's not just fatigue. So if I've done too much then I get more symptoms. Every day I have at least some of the following

Headache
Joint pain
Muscle weakness
Tinnitus
Nausea
Digestive issues
Internal buzzing
Brain fog
Noise sensitivity
Light sensitivity
Heart palpitations

I can't tolerate alcohol much now.

Being in a cafe or restaurant is exhausting and needs pacing carefully. Lots of conversations in one day can be exhausting too.

TV can be too much. I do more audiobooks these days.

I can't go for walks anymore. Sometimes I get into nature but I have to sit regularly.

Best support has been through me association and Facebook groups.

I have a book on pacing and an app called visible which has been hugely helpful.

I’ve had it for over 7 years and it’s fluctuated so much over that time that I can’t give a typical day. But even the best days are a struggle to do just fairly normal day to day activities. Anything involving leaving the house for more than an hour or so, or anything sociable, is a big deal that I need to manage and then recover from. But my life has changed over the years and although I’d love to be 100% well, in many ways I’m very happy now.

I have FMS and beyond the pain the fatigue and brain fog are my worst symptoms.

I have good days and bad days, bad days I can’t drive, good days I can. Though I’m reduced now to only driving places I know routes really well, as the extra concentration of unfamiliar roads is exhausting and therefore dangerous for me to be on the road.

its not unreasonable to ask, if your genuinely curious or have similar symptoms you are unsure of. Most people with hidden disabilities are more than happy to talk about them if asked genuinely.

I don't technically have a CFS diagnosis but fatigue is part of one of my other diagnoses.

Today:
Wake up at 6am in pain. Cats hassle me to feed them. Get out of bed, groan from stiffness, go downstairs. Feed cats. Drink orange juice with liquid iron in it. Eat soya yoghurt to cushion stomach for 2x paracetamol

Go back to bed with hot water bottle. Painkillers take 30-40 mins to kick in so do Spanish on Duolingo while waiting.

Wake up at 10am in pain. Cats taking up far too much space on the bed. Get up and make coffee and porridge. Take long lasting 24 hour painkillers, asthma drugs and some more painkillers.

Sit and read my book for an hour to recover from breakfast

11:30 run and have a bath. Spend 15 mi s afterwards lying on towel resting getting up energy to get dressed.

Get dressed.

Sit and Mumsnet for half an hour before

Getting my gym bag packed for physio

12 noon make beans on toast for lunch. Take more painkillers.

Rest until

1pm leave for physio

2pm -2:45physio

2:45 - 3:30 sit in hot tub at spa in gym in vain attempt to stop my body hurting.

4pm start driving home. Realise I am tired and stop at coffee place for coffee and a bun. No caffeine it gives me diarrhoea.

5pm leave coffee place

6pm get home feed cats

7pm sit on sofa and eat biscuits as too tired to make food

7:20 go to bed.

Bump