I want to warn people about ME/Chronic Fatigue

[OldAndNotWise]

I'm a regular poster but I've namechanged for this. I've recently been diagnosed with ME and I'm absolutely devastated but in a sense, it's a relief as it explains what's been happening to me over the last few years.

I can't turn back the clock but I want to warn others about this horrible disease that disproportionately impacts women.

I started feeling tired and under the weather and had numerous illnesses. I never seemed to be entirely well and never felt that I fully recovered. The doctor ran loads of blood tests. At first i was mildly anaemic, had low vitD, slightly low B vitamins and had slightly elevated CRP but this was put down to the fact that I had a viral infection at the time. I fixed all the vitamins but still felt exhausted.

Rather than resting more, I thought I must need to get fitter so tried to fit in a few more sessions at the gym or a few more runs on the days I felt well. I ate better, I lost weight, I was probably, physically, in the best health I had ever been but at the same time I was completely exhausted. This went on for about a year and I couldn't figure out what was wrong. I paid for a very expensive health check that checked everything and nothing came out of it. The doctor who ran the health check asked me if I was 'stressed' because stress can cause multiple viral infections and that run down feeling.

6 months later, I picked up another virus (or so I thought) and couldn't get out of bed. I managed to drag myself to a doctor who said it wasn't bacterial but 2 weeks later I wasn't better and when I went back again, he said 'if you've been like this for so long and you're getting worse, then this is likely to not be what you think'. I asked if he knew someone I could be referred to and I went to see a Long Covid specialist who confirmed that the multiple viral infections were probably not viral infections but signs I was pushing myself too much and this was likely to be ME.

I was bedridden for weeks. And then I started treating it like it was ME. So I had to learn how much energy I had and learn how much I could use each day. I was terrified of losing my job so I didn't tell work but could only manage one day in the office. Luckily no one complained.

It has taken me months to get to a place where I can manage a full day without needing to lie down. There is no cure. There is nothing that can be taken that can treat it that is guaranteed to work. There is barely any research going into the disease. Last week, a young lady killed herself rather than suffer with it (I won't link but if you look, it's on twitter). She isn't the first. This disproportionately impacts women.

What I want to say to you all - if you are tired and there appears to be no reason for it (not your thyroid, not severe vitamin deficiencies, isn't severe anaemia), do not push yourself. Rest, rest and rest some more. It seems totally counterintuitive that you wouldn't try and get fitter and try and get stronger but sometimes you have to stop and stop for some time. You do not want this. I can't walk to the shops, I can't go for a walk. I can't exercise, I can't enjoy anything because I'm exhausted all day, every single day. There is no cure. If I could turn back the clock a few years, I'd tell myself to take a break because maybe I wouldn't have pushed myself over the edge. Who knows. But please be careful!

Thank you for sharing your experience and what works for you. I’m not sure if I’m in the foothills of ME, it’s taking me weeks to recover from viruses. Slightly anemia from blood tests, thyroid normal. But I hit a wall with my energy levels halfway through the day, and spend so much time in bed feeling exhausted, since October it’s been much the same. I’ll have windows (increasingly fewer and farther between) where I’ll feel normal, like myself. The temptation is to splurge all my energy to catch up on all the chores I’ve not been able to do, and then crash the following day and am good for not much at all.
I'm so sorry you’re in this situation, 🫂

@OldAndNotWise I have ME/CFS. Diagnosed around 15 years ago by a specialist. I had many tests to find a cause and rule out lots of things.

There’s no definitive test for ME but I have all of the markers (EBV antibodies, Red Crescent tonsils, unexplained intermittently raised blood work for example). It is a debilitating and life limiting disease which is poorly understood and comes with the misconception of being lazy.

The diagnosis of ME itself causes stigma. I was throughly tested and had multiple referrals to various specialists. I was diagnosed by an excellent specialist. A work colleague of mine, asked me about symptoms and then went to their GP with a post it note list of “their” symptoms. No tests ordered, and was “diagnosed” with ME. We both worked in the same role. I was struggling daily to get in to work, was housebound for days at a time, and she was at work every day, working over time and even running a lunch time gym class for colleagues. Yet we both had the same illness? You can imagine what my colleagues thought of me. I left in the end because I was pushing through so much , I was hospitalised three times in 2 weeks.

It’s an awful disease and I wouldn’t wish it on anyone.

Holy shit. Thanks for sharing that. I've just literally read my life in your post @OldAndNotWise and I think I need to make (yet another) appointment with my GP.

Sorry. Should have added thanks so much for sharing and I'm really sorry your life is affected like that. It's shit

This echoes what you said about trying to get fitter and exercise your way out of it but actually feeling worse for it.

theconversation.com/long-covid-damaged-mitochondria-in-muscles-might-be-linked-to-some-of-the-symptoms-220821

Have you looked at spoon theory. This helped contextualise some things for me as DH has long covid and was formerly an elite runner. He is wiped out now if he tries to exercise.

Thanks for raising awareness.

I'm sorry to hear that @ComeWithME . One of my closest friends said her dad had it and one day decided he was cured and he was. I said then he didn't have it because this is not how ME works. People keep trying to suggest things (massage/Lightning method) etc. etc. like the ear seeds on Dragons Den. It's so insulting. I'm sure there are chancers who say they have it because unfortunately there is no test so no way to prove it as you know.

Suffering with this is no joke and it's devastating.

@ChrisPPancake be kind to yourself in the meantime!

@Charleymouse they think mine may well have been triggered by Covid. I can only walk for 10 mins at a time. if I walk up stairs, so say 10 stairs, my thighs hurt like I've run a half marathon. It's the most bizarre feeling, I can barely explain it. I wouldn't have believed it if you had told me this when I was well. When i'm in the shower, my arms hurt from holding them up to wash my hair.

2 years ago, I was racing in the Park Run to beat my fastest time, then walking another 5km with dp and going for breakfast in a cafe. Now I can't walk to the end of the street without worrying about having the energy to walk back!

There is some ongoing research around elite fitness people suffering really badly with long covid. Seems contradictory to what we were initially told; however I know quite a few runners and cyclists who have been badly affected long term from covid/long covid.

My daughter was diagnosed with this age 14. Ended up bedbound & could barely speak, had pain, light & noise sensitivity, brain fog, insomnia & all the other symotons of this horrific illness. She lost her whole life.
Spent a fortune on private drs. Zero help. Utterly desperate, it was like she had died.
Have you listened to Raelan Agle's channel on Youtube? She had the illness herself, as did her mum (who eventually comitted suicide). This majorly turned things around for us. I listened to hundreds of recovery stories to find out how some people manage to get themselves out of this hell.
What makes this illness so tricky is different things help different people
When u listen to the stories, you pick up on the things that help the most, & some have similar stories to you. This illness so often targets type A personalities.
The things that helped us the most were practises linked to polyvagel theory.
My daughter, nearly 17, is about 80% recovered. We're still working on it. Life is still hard, but we are in a different universe to where we were.
I can't imagine how hard it must be to be an adult with this illness, & have to research your own way out of it. My daughter was so ill, she was unable to do anything, but at least she had me to care for her & do the research.
We know the hell of this illness.
Best of luck...
.

@Lindos1 how dreadful for a young person to get it. They do say that the younger you get it, the more chance you have of recovery so fingers crossed she continues to improve. I haven't seen that youtube channel but I will have a look, thanks.

I wish that were true for me. I was 13. It's been 18 years :(

I'm sorry to hear that @NotInvisible :(

I’ve been housebound since Covid vaccine. Getting worse. I’m amazed at all this people with diagnosis.

Gp referred me CFS clinic this time last year. Saw someone but it is a disease of exclusion. I’m still waiting to see a neurologist where l was referred 14 months ago. Then they will diagnose.

Meanwhile l was told to ‘find joy in the small things’

What a load of crap.

it took me some time @ArseInTheCoOpWindow before I got diagnosed and even then, they didn't really want to. I don't have any joint involvement other than the sore muscles when i try and do anything. All my blood tests look like the picture of health. Nothing in autoimmune etc.

And tbh the diagnosis doesn't help as they can't do anything. It doesn't even really help telling other people because most people are so judgemental and have no clue what you're talking about and think you're either skiving or can't possibly be as bad as you say you are.

I don't think people can actually imagine being so tired that you can't function day in and day out, to the point that if you try and function it actually makes you sicker and sicker till you can't get up.

and ffs at 'find joy in the small things' - that is outrageous!

I have long Covid (but not sure it’s not ME/CFS) and really agree about not pushing through - I had been at my limits for a long time juggling busy full time job, small children, dealing with a run of redundancies, bereavements, family stress etc etc and instead of listening to my body I just tried harder, got more stressed that I wasn’t good enough and pushed myself until I completely crashed. I still struggle with it now as my inclination is always to try harder even though the answer is to let go more.

@OldAndNotWise your OP rings so many bells. Trying to push through with more exercise to get fitter. If I could only go back in bloody time I would change that ‘ try harder approach’

3 years later, I’m on the settee recovering from 90 minutes client facing work this morning. It feel like it should be a joke but it isn’t.

I have LC. Coincidentally, a few of us on the ‘wtf moment’ thread just decided that we are making it an LC support thread if any or all of you wanted to come over and join us. I think our concerns and frustrations are fairly similiar.
🙂

I've had ME for 5 years so far, but it's only this past year I've felt able to tell people how ill I am, as I can't hide it any more.
I was offered the (now discredited) Graded Exercise Therapy, which considerably worsened my symptoms.
I was then offered a course of CBT which helped me come to terms with most of my chronic pain but hasn't improved anything.
I rest a lot, and this year applied for (and got) PIP and a Blue Badge. These really help, as now DH can drive me close enough to things that I can enjoy them without wearing myself out walking to and from the car.
I try to see it as having a small energy budget, and I decide how best to spend it each day without going into energy debt (ie a crash).

My daughter got sick straight after HPV vaccine.

It's such a hard illness as people just don't understand how awful it is. I'm amazed by the lack of care or concern by friends- just doesn't seem to warrant the sympathy from people that other illnesses do.

I truly urge people to take a look at the absolute wealth of help & information there is on youtube. I hate the internet, but I feel youtube has pretty much saved my daughter's life. It's full of lots of people who have been v ill, & come out the other side, & just want to get their story out there to help others. As I've said, I think Raelan's channel is the best place to start, & through her, you'll discover other people's stories that may resonate with your own.
You do have to do a bit of a leap away from conventional medicine to alternative therapies & keep an open mind. I found this leap quite easy as we spent a lot of money on conventional medicine to get nowhere at all. x

I have LC so feel your pain, I'm mid 30s.

What I would say is that you need to become the master of your body and condition. You know it more then most and your limits won't be the same as someone else's.

In terms of work definitely get reasonable adjustments agreed and there is also things which may help reduce fatigue with work. Screens are subconsciously a high energy activity. Blue light reduction screens, putting outlook into black with white letters is less fatiguing for instance etc. Claro read you can change the colour of screens and documents etc.

I've also had quite a lot of improvement with intermittent fasting it boost immune response. Research is still ongoing but people with immune conditions quite often see an improvement.

Leg pain I have daily, I found bowen therapy helped manage the pain levels and saw a reduction. Its still there but definitely less (I could only walk 100m previously).

For me the biggest element has been acceptance (that doesn't mean I have to like it) but actually that's meant I adjust everything whether people realise it or not. I pace everything, still go on holiday but they have changed. I now do all inclusives and my husband knows travel fatigues me so first day sorts the kids out etc.

Everything is trial and error to see what can help you, main thing I would say is try things individually for 6 weeks to see if they help before moving to something else. The way I see it I have nothing to lose by doing so!

Watching with interest as currently signed off (I have never been signed off and am very rarely off ill) with no sign of getting better.

My symptoms are:
extreme fatigue, I have no choice and have to lie down.
if I get up and try and do anything I feel dizzy, disoriented, confused.
I shake most days mostly my hands
headaches on and off
my toes hurt?!
eyes swollen with fluid so badly, not normal puffy eyes this is different.
my whole body feels weak, my legs are wobbly.
have to sleep every afternoon.

been going to the doctors for 2 years complaining of always being tired (not this bad, I could still function but pushed myself to do so). My bloods have been done over and over again and show nothing wrong.

I got a serious bacterial bowel infection at the beginning of December, felt very unwell but carried on wfh (stressful job), recovered from that and then a few days after feeling better I ended up like this. I thought I was feeling a bit better on Wednesday so hoovered the living room, yesterday and today I feel so much worse.

I was previously full of energy a couple of years ago, 3 kids, working in office, long commute, all housework, dog walking, mental load, cooking.

Now look at me 😞

Thank you and I'm so sorry to read of so many in the same position.

Acceptance has actually been the hardest part for me. I fought it for so long. I just couldn't believe it. I mean it is hard to believe isn't it and even harder to explain to other people because we look fine. I mean I may look tired but I'm not swollen, or covered in a rash, I don't have a fever and my skin is ok.

But I'm in bed by 8pm every night. And every day that I wake up I feel like I haven't slept. If I do too much, I get symptoms of the flu but it isn't the flu, it's just my body not coping with doing too much. I'm lying down right now typing this as I need a rest in the middle of the day. I haven't walked my dog in a year because it's too far.

I am better than I was last year though and that has been entirely down to pacing and in a few month's time, I will be trialling some antihistamine regime that has been useful to Long Covid patients to see if it helps. I am not bedridden anymore but if I am not careful, I end back there if I try and even do the smallest things.

Thanks for the youtube tips - I will check them out.

Sorry I was going to ask, does this sound like ME? Doctors are thinking now it could be.

Dp thinks they don’t know what is wrong so labelling with ME

@Bringonthesunforthewashing despite it being a disease diagnosed by excluding others, there are some criteria. The main one is called Post Exertional Malaise. i.e. you feel worse after exerting yourself, generally not immediately (though you may feel bad immediately) but say a day later, you feel worse. So you exert yourself today, tomorrow you can't get out of bed. Some people it's delayed by a day, some a few days. And also some form of cognitive impact - like brain fog or confusion.

Sadly your symptom do sound quite similar to mine and to others with this. I don't have POTS but it's worth looking that up if you're feeling dizzy and seeing if that sounds like what you might have. That can be very debilitating in itself.

They do need to rule out things like coeliac disease, thyroid issues etc. It does often follow a nasty infection. Make sure you are resting as much as you possibly can.

@Bringonthesunforthewashing ME is a diagnosis of exclusion so it's what's left after they rule out everything else. It's likely to be several neurological and mitochondrial conditions that are not yet identified, so your ME might well be a different thing than mine, and what helps some might not help others.
The main diagnostic feature is Post-Exertional Malaise, where activity beyond a patient's energy limit is followed (1 to 48 hours later) by extreme fatigue symptoms.
For me it's almost exactly 24 hours, I call it "the bill" as it's my personal cost for overdoing things.

@OldAndNotWise @InMySpareTime

Thank you both x.

My fatigue is generally all day every day. I will force myself to cook tea every night, sometimes do a bit of housework. When I am doing the housework after a while it feels like boom enough is enough. I start to go from shattered to feeling very unwell, have to lie down no choice, shaking becomes worse and brain fog. The following day I feel much worse.

if I do absolutely nothing apart from get up and washed I am still shattered, the heaviest feeling of tiredness and have to lie down by lunchtime.

I have found after 2 hours (if it’s a good day) of being up and either sitting or pottering around that’s my limit, rest of day in bed.

Could the infection I had in December and not looking after myself and resting caused this? Following how tired I have been for so long?

I already felt I was deteriorating slowly for about a couple of years. In the last year I have left the house about once a month for about 45 each time. I am too tired to even go to the shop.