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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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

63 replies

redraspberry · 07/03/2024 19:24

And what a typical day feels like?

OP posts:
DesolationRow · 17/05/2024 23:02

@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'.

InMySpareTime · 18/05/2024 06:21

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.

NotPregnantmamatoad · 18/05/2024 06:31

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

ArseInTheCoOpWindow · 18/05/2024 10:19

DesolationRow · 17/05/2024 23:02

@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'.

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

Ioverslept · 18/05/2024 10:25

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

PanicAttax · 18/05/2024 10:36

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!

aurora183 · 21/05/2024 20:46

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.

LadeOde · 21/05/2024 21:22

@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.

CrunchyCarrot · 28/05/2024 12:40

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.

CleverCats · 28/05/2024 19:44

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.

ArseInTheCoOpWindow · 28/05/2024 19:54

CleverCats · 28/05/2024 19:44

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.

Yeah me too!

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

CrunchyCarrot · 30/05/2024 06:18

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

TeaAndStrumpets · 02/06/2024 11:33

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

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