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

My consultant also said sleep disturbance and alcohol intolerance.

l found the pain came 8 months into the illness

@redraspberry no it means it is perfectly likely. Some people with cfs have muscle pains etc but many do not.
I think the diagnostic key is fatigue PLUS post exertional malaise which so far as I know doesn’t occur with any other condition.

I never actually got a medical diagnosis of ME/CFS but had all the symptoms listed by others above. All my health checks came back perfectly normal and the doctors eventually decided it must be long covid. I had never had covid but it was a convenient label to give me and get rid of me! Was unable to drive, work, watch TV, hold conversations or do much of anything for about 20 months. I spent most of my time asleep on the sofa. Mine started with an infected finger and course of antibiotics and I just never recovered. I was told about reverse therapy eventually and after researching I could see that it got a really bad press by a lot of ME/CFS sufferers as it doesn't promote pacing and living within your energy envelope but rather starting to listen to your body and work out what it wants to do. I am not really comfortable with the idea of therapy as I am a very shy and I suppose emotionally repressed person and I hated the idea that it could possibly be a mental thing as I knew for sure that the infected finger started it. Was brought up to just get on with things and not make a fuss! Anyway, in desperation I decided to try it and slowly recovered. I did 3 telephone sessions with a therapist. She didn't really delve into my backstory too much and it was actually quite fun rather than awkward. I now believe that a lot of us have probably experienced some kind of "burnout" which triggers the onset of chronic fatigue. In my case an infection, in others a virus or some kind of trauma which is just the final straw for our bodies. Looking back I had been stressed for years and doing way too much. I was always pushing myself through family commitments (4 kids), work commitments, money/housing worries and the death of my mum and FIL to cancer. I had had niggling symptoms like migraines, sore joints, bad back etc for years but didn't realise it was my mind using my body to tell me it was struggling! I still feel it's a weird concept but I have now been functioning quite well for the past 18 months and firmly believe I would still be on the sofa if I hadn't tried it. Please don't write yourself off or be scared to try things. The worst that could happen is a symptom flare up and the best is a pathway to recovery which I think is well worth the risk.

@everycloudhasone
There is no cure
It may improve or it may worsen
Worsening isn’t inevitable
A minority have spontaneous recovery after a time

Is there actually a cure for cfs or any hope of improvement or does it get worse over time?

@CrunchyCarrot so good to hear from you too, and thank you for sharing your experience too. It really sucks that you have ME/CFS but I think it is good that you know what you are dealing with and can manage it the best you can.

I am still searching for answers (I was aalso dx hypermobile but I dont think it is causing me feeling as I am), as I am for sure not myself for over 18 months now but it is definitely not thyroid, @Andante57 . I probably have the most checked thyroid in the UK as of now as had it checked about 3 times extensively in the last year and a half (bar ultrasound but I know I have a benign nodule there).

Thanks to everyone who provided their insight, (and sorry I hijacked your post OP!). To me I am on the fence whether it could be ME/CFS for me. I am 50/50 about it. I can relate to some of it but not all.

I wish you all the very best health, support, and lots of smiles and happiness on your way to recovery 🍀

@Wobblyheart as CrunchyCarrot says, get your thyroid checked. Mine became severely underactive after the birth of my dd. Not only was I exhausted but I forgot everything, left shopping on the bus, failed to pass on phone messages to dh (then landlines were usual in houses) and so on.

I may well have it, although I don't want a formal diagnosis as it's not a positive thing to have. If I do indeed have it, it started at around 25 yrs old, I'd been doing an intense MSc which was quite frankly too hard for me. I came down with flu that winter and after that it seemed like I just couldn't concentrate or even remember things properly. My GP at the time said I had 'nervous exhaustion' and to be fair that made sense. I was advised to just take it very easy. I never did fully recover though, that was when I started needing afternoon naps, and my normally good sharp brain felt like a storm had swept though all the files I had in there so I couldn't find anything.

Much later on I developed Hashimoto's which of course gives even more fatigue and all sorts of delightful symptoms. My typical day nearly always includes an afternoon nap. My sleep isn't refreshing at all, I can wake up feeling just as tired as when I went to bed. When I heard about pacing, it does make sense, so I try to have small goals and not stress about the house being a mess! I started to wonder if I have CFS when I realised I get PEM, can be after physical or mental/emotional stress. I struggle with finishing things as I just get too tired. It's disheartening but I try to concentrate on the positives in my life.

@Wobblyheart so good to see you!! Childbirth can trigger autoimmune thyroid disease (maybe other autoimmune conditions, I don't know). Breathing issues ('air hunger') is definitely one of the hypothyroid symptoms. It often comes along with iron deficiency and other vitamin deficiencies.

I'd advise anyone with me/cfs to visit Raelan Agle's channel on youtube (I know that's easier said than done when feeling so beyond terrible). However, she's amazing. She had me/cfs herself (she recovered). There's so much information on there from so many people who have suffered too.

Yes this matches cfs.
Pain in the usual sense doesn’t necessarily need to be involved. Extreme worsening of “symptoms” one or two days after exceeding your limits is a must for cfs/long covid of cfs type.
Difficulty explaining what this exacerbation of symptoms feels like would be normal (since you won’t have experienced it previously in life).

Honestly ? I hate having to explain the details of my life and illness . I spend most of my time , when I'm with others , trying to be as normal as possible . I don't talk about the pain or the exhaustion or my lack of memory or ability to concentrate etc . I'm embarrassed . I'm embarrassed that I don't have the kind of life that I would like to have I'm embarrassed that I can't do the things other people can and I'm embarrassed if people show me sympathy . My life is very restricted and has been for literally decades and I get no pleasure at all in talking about it in any great detail . So , unless I'm certain that you are one of my best friends and that you love me a lot , I'd prefer not to lay my life out on the table for you to pick over the bones of it . For me the golden rule is this , don't ask anyone to do anything that you would not be happy to do yourself . I never ask anyone deeply personal questions unless I'm sure that they feel extremely comfortable and safe with me .

@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!

@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.

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

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.

@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.

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

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.

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).

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.

@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 😭

@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.

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