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

[redraspberry]

And what a typical day feels like?

Bump

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.

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’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 am curious because I think I may have had it for years but it's getting considerably worse, however I didn't realise there was a pain element to it, I am just so exhausted all day long everyday. Go to bed tired, wake up just as tired and feel like I have absolutely no energy and the slightest of things completely deplete me.

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.

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.

I do get brain fog, I find if I'm around people for more than a few minutes I need alone time to recover, even family.
I have an upstairs toilet which I find such a struggle and often need a lie down after climbing the stairs.
The best way I can describe my feeling is as though I'm completely running on empty energy wise as a default and anything I do drains energy I don't have, I'm quite slim but my body feels heavy like it's made of metal and I'm dragging myself along.

Another example is if my husband is in another room and calls out "come and look at this, it's as if I physically can't get up as though I just have no power to move.
I just feel so tired and weak all day every day.

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.

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.

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?

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.

Wake up after a disturbed night (I always wake every 1-1.5 hours due to pain or needing the toilet ) feeling exhausted. I have 4 alarms set 10 mins apart starting at 630 am so that I can take my time.
I can’t do the school run but I try to help get the dc ready.
I then go back
to bed and sleep usually till 11am.

I then have approx 2 hours where I manage to shower, eat and sometimes can put a wash on or do some light housework.
I sleep again till about 230 pm.

Once the dc are back from school I try to sit with them and they do their reading.

I go to bed at 8pm

@beigeallround it sounds incredibly tough, do you ever have periods of remission?

Also, could I ask @beigeallround and @Lifecanbeshit - do you ever feel breathless? I often feel like its difficult to breathe (feels like my muscles are too weak to breath) but I can breathe and my breathing / lung function was checked and was normal. So not sure what's it about. It feels like it was difficult to breathe with pregnancy with I guess diaphragm pushing up on lungs.

@Wobblyheart i used to but in the last 18 months none at all - I suspect this is due to being quite unwell 18 m ago I think it took away the very last of my reserves (I had a ruptured ectopic) it’s like it completely wiped me out 😭

This is what l feel like.

Currently bedbound. And spending precious minutes writing this when l can’t look at screens atm.

Chronic fatigue clinic useless. Seem to cater for people who are moderate. Not much use for severe.

The Health Rising site is so good - https://www.healthrising.org/

Make sure you’re having proper investigations, simple things might be optimising your vitamins (iron incl iron stores / ferritin test, B12 and folate, D etc.). Also thyroid dysfunction, connective tissue conditions like Ehlers-Danlos can be alternative diagnoses. (Also MS has a big element of fatigue in case you’ve got other neurological symptoms).

About the difficulty breathing, have you had your iron levels checked, including the serum ferritin ones? They are your iron store. If you get them checked, ask what the actual level is because the threshold is set low and you can still get symptoms in the normal range. Threshold is 14 and mine is 25 and I'm getting the breathless symptoms, ideally needs to be over 50. I was moulting like a cat and that can happen at below 50.

Hi all and @Wobblyheart . I haven't had breathing issues with it but some people on my online support group describe having 'air hunger '.

@Wobblyheart I don't know if pregnancy could trigger it. I think it's possible. It's usually a virus but other people have had it triggered by vaccines (not to start a chat about those), trauma, Lyme disease...

When I think back, I think it's like a fruit machine. My 'cherries' lined up and boom that was it. Trauma+sleep deprivation+stress+COVID/viral infection...plus history of allergies and hyper mobility.

I have been reading Decode your Fatigue by Alex Howard. It is on my Libby app so I don't even need to go to the library for it or buy it.

It has taken me a few weeks so far, and I keep dipping into it a bit at a time. I have been tired all the time for years and have been doing the 'right things', but I am looking to see what I have missed because I am fed up of it.

Some of this sounds familiar to me although maybe not quite so severe. I can feel fine for a couple of weeks and then crap for a couple of weeks and no amount of sleep will help. I am wondering if it is tied to my menstrual cycle as well

@FuckOffTom and @Melroses there is a difference between chronic fatigue and the unhelpfully named chronic fatigue syndrome (M.E.). Undoubtedly menopause can cause chronic fatigue and other things of course, and it also has an impact on my M.E. but there are key characteristics of MECFS.

Unrefreshing sleep
Alcohol intolerance
Post exertional malaise

There are lots of symptoms that come and go when you have overdone it. Overdoing it involves doing normal activities that healthy people would not think about. Having a shower, going out for lunch, watching TV.... It varies according to symptom severity and whether you are severe/moderate or mild with the MECFS. But mild MECFS is not a mild illness.

I never feel ok. Ever.

I have better days but every single day I have pain, I have to pace so I don't make myself worse, I have to be very careful.

It's not a diagnosis anyone wants. But it is always better to know what you're dealing with.

@Lifecanbeshit I am sorry to hear you are struggling so much.
Out of interest, how did the alcohol intolerance present itself? Did all of these symptoms gradually get worse over time or did they all come at once one day? You mentioned all the things you think that triggered it - that sounds so tough!