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

I developed food allergies late in life, along with cfs. So, too tired to go out for meals, no food I can eat anyway!

I'm sorry my post has made you feel that way @CleverCats and @ArseInTheCoOpWindow - I do have CFS myself.

Yeah me too!

I got CFS at 60. I didn’t suddenly start eating different food to trigger it.

Sorry but what an insulting crock of shit.
Really, no one with cfs eats a nutritionally balanced diet? The medical profession researching for the past 4 years haven’t noticed these nutritional deficiencies?
Please no one fall down this rabbit hole of seeking a cure through nutrition 🙄🙄🙄
Honestly there are no words to explain how annoyed this post makes me.

I'm just going to say this because, well I believe it's common sense but as the medical profession isn't trained in nutrition and biochemistry they have no way to start helping people with CFS or indeed any chronic illness, and sadly people remain largely ignorant. It's not like the conspiracy theorists who claim 'THEY are trying to keep you ill'. No, it's not that at all, the medical profession is just plain ignorant and have no idea how to maintain wellness. So they try to treat individual symptoms without looking at the whole person.

The cause is largely down to nutritional deficiences. If you've had a virus, or a lot of stress, or injuries, infections, antibiotics...all these things take nutrients for your body to repair and heal, to get you back to normal. Today's food and soils are nutrient-depleted. I suspect not one of us gets all the nutrients we require on a daily basis. Our bodies are very good at keeping us going, but once we have a breakdown due to illness or stress, it can be difficult to get those optimal nutrient levels back. In fact they may fall far short of the ideal and as a result, all the biochemical processes needed to keep your body going start to suffer. Then you start on a downward spiral and more symptoms and illnesses occur.

There's no quick and easy answer to this. Doctors for sure aren't going to be able to help because they don't have the knowledge nor do they have the time to figure out each person's biochemical deficits. That leaves those of us afflicted to start searching online for anything that may give us a clue as to what's wrong, or may help. That can lead to going down a lot of rabbit holes and onto 'treatments' that are just plain dangerous and make things worse.

At the time I got Hashimoto's nearly a decade ago, I started going down those rabbit holes. I've found a few things that helped, others did harm, others I have no idea if they did anything at all! So we are on our own, basically, and every day lost to illness is a day lost where we could have been living a full life.

My current set up is to try to get my basic nutrients sorted out without having to take a hundred vitamin pills every day. I happened upon Understanding B12 deficiency on FB three years ago and have followed much of the protocol there to get me started, it's a group based on Dr Greg Russell-Jones (biochemist) research on B12. Some of the things there have really helped but of course it's not everything. A few people have made a great recovery (even from CFS!) Might be worth checking out if you are inclined, at least there's no weird and wonderful substances you have to take, just basic nutrients.

I really hate seeing so many people suffering when it's so unnecessary! We end up being part of a huge invisible population of people who are just getting by, miserably. It's got to change.

@aurora183 100%. I have to pace myself with everything whereas before I could do a dozen tasks and work on multiple projects for hrs late into the night. I could sit for 8hrs just doing research. Can't do that anymore. After 1hr my neck muscles get stiff and skin my skin starts to burn. So, yes i pace myself for everything now. 30-1hrs work and I stop and may have to defer till the next day. Can't 'go shopping' all day like I used to, spending the off days at the mall! now I go to the mall just to look around, then come back another time to buy the things i want. If I combine the two things i feel l start to feel short of breath & dizzy and likely faint. I think one of the things I miss most is the fact i can no longer wear nice shoes, heels etc. They hurt like hell, so I've gone from being a Jimmy Choo girl to Pavers.

Sleep is difficult as I have to keep turning over like barbecue meat due to muscle pain and I have to have windows open all yr round. If it's even remotely warm I'll wake up in a pool of sweat so I'm definitely extra sensitive to heat now where I wasn't before. Can't stand for long and can't sit for long, so lots of standing and sitting and fidgeting just to get comfy.

I don't have the caffeine thing though. I don't drink coffee at all just tea once a day.

I'm much better than I was 20+ years ago, I still have to be careful what I do, I've never gone back to the amount that most people can do, I have to give myself down time. Does anyone have caffeine sensitivity? I feel like a canary in a coal mine, sensitive to everything. I end up having decaf coffee/dark chocolate in tiny amounts for energy, side effect of making me feel edgy/burning candle at both ends. That and other parts of the fatigue feels like nervous system disregulation so I'm looking into that.

Jumping on too as I have had very similar to you OP.
I had a pulmonary embolism a few months ago and it came out of the blue - was walking 10 miles a day every day prior to that and am slim. Now can manage about 4 on a good day. Humidity and breathing is huge for me. Today I am having to go slow because humidity is 91% here and anything over about 67% means I feel foggy and struggle to breathe - going down and upstairs will wipe me out for half an hour. Brain fog is huge. Like others I worry about driving on those days as I make silly errors and it feels unsafe.

I've just had a whole load of bloods done as I have had terrible nausea for months, prior to PE and am struggling to eat more than half a sandwich a day which is obviously also not helping with tiredness and I am losing a lot of weight. I was severely aneamic last year and took ferritin which helped a lot (I don't have to nap in the day for 2 hours now!) but the breathing and nausea have increased. Definitely get bloods done OP!

Have you been to the GP? It could be severe anaemia

Yeah, l can’t get out of bed. My gp doesn’t know what to do with me.

I’ve had ME/CFS for nearly 12 years. It impacts every day and every aspect of my life. I’ve had to leave work as I was killing myself holding down a job. I’m trying to find another job as I’ve literally got no money but it’s so hard. Pacing is essential x

I've had ME/CFS for 6 years, and initially pain wasn't really an issue, just fatigue and PEM.
Too much "pushing through" and exceeding my energy envelope has worsened my condition and I've had chronic pain for the last 4 years.
It took a lot for me to stop masking my symptoms and putting on a brave face, but this last year I reached a point where I just had to admit to people that there are a lot of things I just cannot do any more because my fatigue is too limiting.
I had to get DH to push me through the airport in a wheelchair after our last holiday because I was too exhausted to get home otherwise.

@MonsterMunched no, you don't have to, you choose to, because you don't want to be poor. That may be the right choice for you however not all of us have the choice. Because, unlike you, we can't 'get up, go to work and get on with it'.

@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.

YY, @JamieJ93

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.

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.

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

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 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.

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.

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

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.

“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’)”

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.