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

[redraspberry]

And what a typical day feels like?

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 .

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).

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.

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.

@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.

@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 🍀

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

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

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.

So if it's just fatigue on its own and no accompanying pain, does this mean cfs is unlikely?

@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.

l found the pain came 8 months into the illness

My consultant also said sleep disturbance and alcohol intolerance.

Does anyone have problems with their voicebox? i have fibro and have lost strength in my voice and vocal range. When i speak for too long 1hr, i feel like my vocal chords are swelling and my voice gets weaker and weaker until its like a whisper. 2 yrs ago before i realised when i was still getting to grasp with fibro i lost my voice altogether after some singing and couldn't barely make a sound for about 3mths. Its come back now but nothing like what it used to be. I have to rest my voice after about 15mins of talking and do not raise my voice a certain level anymmore.

Had it checked out by ENT to rule out other things and was all clear was referred for some physio which did bugger all. I was reading up on fibro and came a cross a bit about it affecting the muscles of the throat, some people can have difficulty swallowing so was wondering whether anyone here has same problems with their voice.

“My consultant also said sleep disturbance and alcohol intolerance”

These are some of the possible symptoms but are not necessary for diagnosis.

The diagnostic criteria according to nhs are:
“The guideline identifies the symptoms of ME/CFS as debilitating fatigue that is worsened by activity, post-exertional malaise, unrefreshing sleep or sleep disturbance, and cognitive difficulties (‘brain fog’)”

I’m unable to hit the higher notes in my speech. People think I’m not answering them, but the voice doesn’t come out.

@ArseInTheCoOpWindow That sounds similar. Is this a new symptom or your voice has always been like that?

My DD has fatigue as a part of her ASD. When she gets in from college, she sleeps for up to 4 hours in the late afternoon/evening then sleeps all night. At college, she is too exhausted to listen to her teachers despite getting inordinate amounts of sleep at home.
I don’t know what she can do about it. I’d like her to have an autistic life coach - someone who understands the fatigue and could help her manage her day.

This is very interesting to me. My 16yo DS has ASD and needs a lot more sleep than his peers. He falls asleep at 9pm every evening, and sleeps very soundly indeed, but wakes at 6:30 daily. He gets very tired by the school day - I think it takes a huge amount out of him to pay attention, try and fit in, remember everything he needs and where to be, organise himself etc. He often seems not to have digested the same information that the other students have even though he was in the same room.

I have to get up, go to work and get on with it despite the pain and fatigue. I can’t afford not to. All of my time outside work is spent trying to recover. Steroids and opiates keep me going at work. Would love to be able to stay at home and rest when I need to.

This sounds like ASD burnout often misdiagnosed as CF.

My 17 year old is just coming out of it. She’s been too exhausted to do anything, but is getting better. Not been in education for over a year.

I’ve had the voice problems about a year. Now in 3rd year of CF

You wouldn't love to have to stay home, though. I've just missed the funeral of someone important to me, where my presence would have been valued and my absence was felt. I'd bought a new outfit and everything.

I'm already upset about it and, of course, nobody believes my health really prevents me doing things I care about. They think I couldn't be bothered.

@redraspberry, the diagnostic process for ME-CFS is by exclusion. It's a long process; they're looking for fixable issues that may be causing the symptoms. Get it started by giving your GP a clear, detailed summary of what you feel are your symptoms. Give examples. Keep your fingers crossed they'll find something that can be medicated.

Does anyone find it exhausting explaining how exhausted they are?!?!
I absolutely cannot function today - have absolutely overdone in it and can't even bare thinking about having to get up for my next wee.
It's hard trying to get people to understand that this isn't just about being tired,
It's about utter exhaustion, something beyond explainable.

YY, @JamieJ93

@JamieJ93 its really really frustrating, I think the reason we can’t seem to make others understand is that whatever someone does in their life, they will never feel these symptoms unless they have cfs/long covid etc.