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!

I do have similar symptoms to PEM and my GP also wants to refer me to the Long Covid clinic.
If I concentrate on anything it can really knock me for six, including head and neck pain and dizziness. I generally can feel it coming, loads of times I’ve been walking down the street and had to sit down on the pavement because I couldn’t take another step, then I’ve ended up in bed exhausted.
To be honest though I have learned to some extent to manage it by carefully pacing myself so my battery doesn’t run down. My flares of RA have calmed down a lot since I started on biologic medicine by injection but the fatigue and feeling low at times is still there. I also have neutropenia and thrombocytopenia.

Exactly.

Easier than admitting you don't have all the answers.

@CheshireCat1 neck pain/stiffness is one of my symptoms. I get it when I'm getting overtired/overexertion. It goes away when i'm marginally improving. A lot of ME sufferers have a stiff neck, in fact when I first got ill, they were concerned it was encephalitis from the stiff neck symptoms. I am convinced that researchers will at some point find something in our brain/spine that points to this illness that causes the stiff neck/burning brain/buzzing brain symptoms.

Some people have cervical stenosis and have an operation to fix it and their symptoms improve. But it's a risky operation and no guarantee of success.

I was diagnosed in my early 20s following two bouts of glandular fever. 35 years later I still have to pace myself and can only do one thing every other day, with a rest day inbetween.

To complicate matters I’m also disabled following major spinal surgery in 2009 and between the two conditions I spend most of my day on my back, and am about 80% housebound

Fortunately I have always wfh in my own business, not tied to office hours. I sold it in 2018 and now write part time and have published two books, number three is a work in progress.

I really hope research starts progressing and fewer people are gaslit into believing their symptoms are purely psychological/can be exercised away.

I've been following thattillyrose on Instagram and she tells a compelling story of awful "inexplicable" symptoms and doctors implying it was all in her head because they couldn't find answers. Shes finally, eventually, been diagnosed with vascular compressions. Not CFS type symptoms in this instance but again the medical gaslighting began when they couldn't find answers easily. thankfully she and her mum were tenacious in searching for answers (and had the means to do so)

Thank you for this thread OP. I caught Covid in early December and although I wasn't particularly ill for more than a couple of days, oh the exhaustion.

I seem to have lost all my strength in my arms and legs. Going upstairs makes my thigh muscles literally tremble with fatigue. I'm normally able to pick up fairly large and heavy objects with no problem at all (part of hobby) but I'm struggling to do it now. Getting the Christmas decorations back up in the loft has been daunting to say the least, and carrying a box full of tinsel up a loft ladder shouldn't make me need to sit down for a rest for an hour afterwards, should it?

I'm only 60 and am normally fit and healthy, but I feel like I have aged twenty years and become elderly in six weeks flat. Perhaps I need to see a GP or something, I dunno. I'd probably get fobbed off though, so I'm not sure there's any point.

Thank you for sharing your experience, it really is so important. I was diagnosed with ME almost 30 years ago after catching glandular fever at 15 and not recovering. It took about five years to get a diagnosis. Throughout my adult life I’ve been up and down, sometimes bedridden for months on end, sometimes just about managing to hold down a full time job, and everything in between!

I spent about 20 years desperately searching for a cure. I’ve tried every quack and snake oil ‘treatment’. I shudder to think how much money I’ve wasted over the years. Three years ago I had my ovaries removed and surgical menopause hit me like a truck! Physically I feel worse than I have in years. At the same time I’ve had a bit of an epiphany. I’ve finally accepted that this is how I am. I doubt they’ll ever find a cure in my lifetime. I’ve stopped resisting it, and hoping for a cure. I’ve stopped beating myself up if I don’t feel up to doing something. I’ve stopped caring if people think I’m lazy. I don’t feel any need to ‘prove’ myself. I genuinely feel 100 times happier and more at peace than I’ve ever felt in my life.

I’m knackered and in pain, but I’ve got a wonderful family and friends and a nice home. I’ve got a lot to be grateful for. I’m not well enough to work at the moment, but I’m viewing it as a sabbatical rather than a bad thing. My dd was diagnosed with long Covid last year, and it’s awful to watch her suffer. I actually believe long Covid is ME, just with a different virus at onset. The symptoms are identical. Hopefully now there’s more research being undertaken there will be some light at the end of the tunnel very soon!

The best advice I can give is to just be gentle with yourself- mentally as well as physically. Don’t ever push yourself to keep others happy. Rest, and don’t feel guilty. Listen to your body. Enjoy the good days as much as you’re able to, and roll with the bad days. Most people do recover largely, even if they relapse in the future. Just make the most of every day. I hope you’re feeling better very soon. xxx

Thank you for sharing your experience, it really is so important. I was diagnosed with ME almost 30 years after catching glandular fever at 15 and not recovering. It took about five years to get a diagnosis. Throughout my adult life I’ve been up and down, sometimes bedridden for months on end, sometimes just about managing to hold down a full time job, and everything in between!

I spent about 20 years desperately searching for a cure. I’ve tried every quack and snake oil ‘treatment’. I shudder to think how much money I’ve wasted over the years. Three years ago I had my ovaries removed and surgical menopause hit me like a truck! Physically I feel worse than I have in years. At the same time I’ve had a bit of an epiphany. I’ve finally accepted that this is how I am. I doubt they’ll ever find a cure in my lifetime. I’ve stopped resisting it, and hoping for a cure. I’ve stopped beating myself up if I don’t feel up to doing something. I’ve stopped caring if people think I’m lazy. I don’t feel any need to ‘prove’ myself. I genuinely feel 100 times happier and more at peace than I’ve ever felt in my life.

I’m knackered and in pain, but I’ve got a wonderful family and friends and a nice home. I’ve got a lot to be grateful for. I’m not well enough to work at the moment, but I’m viewing it as a sabbatical rather than a bad thing. My dd was diagnosed with long Covid last year, and it’s awful to watch her suffer. I actually believe long Covid is ME, just with a different virus at onset. The symptoms are identical. Hopefully now there’s more research being undertaken there will be some light at the end of the tunnel very soon!

The best advice I can give is to just be gentle with yourself- mentally as well as physically. Don’t ever push yourself to keep others happy. Rest, and don’t feel guilty. Listen to your body. Enjoy the good days as much as you’re able to, and roll with the bad days. Most people do recover largely, even if they relapse in the future. Just make the most of every day. I hope you’re feeling better very soon. xxx

Very similar to Fibromyalgia which I've suffered years.
Horrific conditions.

@oldbutnotwise I haven't anything useful to add but just wanted to say send good wishes to you and everyone else too. What a horrible insidious illness it is.

Without wishing to be contrary, don’t dismiss all the touchy feely, woo stuff.

I can’t ’positive think’ myself better, but I can’t tell you how much worse it gets if I am negative/stressed. When I speak to my mother (difficult woman) I’m in pain for the rest of the day.

I did the graded exercise thing- but it was extremely low key, functional exercises like moving a bottle from one side of the table to the other, raising a hand above my head. We started at 75% of what we could do in x minutes. When we’d done that every day for two weeks, we increased it by a couple of moves. So maybe starting with ten moves of the bottle, building to twelve after two weeks. You’ve never seen such a funny looking gym session!

I went through all the same things you did, but with added pain. I’d join an exercise class, do a video, try and walk faster- and end up with an injury. For a non sporty person, I’ve had a lot of sports injuries!

I have had to learn to be nice to myself instead of angry and disappointed in myself. I try and treat my inner child with tlc- I really really do honour my feelings and aches and pains, in order to tell my body it’s ok, we’re being looked after, we’re safe.
It’s a total u turn from pushing myself to work harder, push through the pain, endure, never give in…

Nobody gave a damn how I felt as a kid. As a mum, everyone else in the house came first. Now I’m learning to cherish myself as no other bugger will!

So buy the weird earplugs, get the fancy cream, show your body you are taking its needs seriously. You never know!

You can’t cure it, but can make it much worse without positivity.
So yes, find joy in the small things. Honestly.

But I have to say I feel lucky- everyone I care about or work with closely knows what I was like back when I was superwoman. They know that I wouldn’t be like this out of choice, only necessity.

I don't disagree that stress etc can make things worse. But there's a distinction between something being an exacerbating factor and something being blamed as the root cause.

@aitchteeaitch exactly how I felt. I couldn't get the Xmas decorations off the tree as they were above my head and the effort of continually lifting my arms up and pulling decorations off was too exhausting. There's nothing the doctors can do at the moment but they are starting to know why it's happening (this is the same as the link earlier).

amp.theguardian.com/world/2024/jan/04/people-with-long-covid-should-avoid-intense-exercise-say-researchers

I’m not sure I understand. Are you agreeing stress is an exacerbating factor?

but saying it’s not part of the cause?

Sorry to hear you are suffering, it's such a horrible illness. Have you read this thread? I and some others posted some things about recovery which you might find interesting. Mainly to do with nervous system dysregulation. As someone said up thread the Raelan Agle youtube channel is a great resource.

To think ME/CFS recovery is very rare? http://www.mumsnet.com/Talk/amiibeingunreasonable/4577511-to-think-mecfs-recovery-is-very-rare

Exactly that.

Eg. Stress makes my myasthenia worse. When a close relative died I became very ill rapidly. But it didn't cause the symptoms on its own, the underlying myasthenia did. And I am sure CFS is the same, as are many other conditions. There is a physical cause (eg. A nervous system disfunction or autoimmune or whatever) which may be exacerbated by stress and often other things (eg illness, periods, hot weather etc) Allergic reactions are often worse at times or stress and I know diabetes and psoriasis worsen too.

That's quite distinct from the gaslighting by some medical professionals that stress alone is causing the symptoms.

It is a hard condition. I was diagnosed as a teen after going from track athlete to couldn’t get out of bed. Think it was triggered by over training and a viral infection. I have had three bouts and picked up long covid which was quite reminiscent of it. I am completely better but while generally lively have the odd day where aches and pains threaten I feel unwell and I cancel anything and get straight to bed. Sleep and rest and health first. Everytime.

Pasting what I wrote on the other thread re recovery in case helpful for anyone (I am now back at work but on a long phased return):

I have CFS (diagnosed after cancer treatment but I think it started before that when I had hyperemesis). I consider myself nearly fully recovered now and feel I've tried EVERYTHING. Hoping I can return to work in a few months 🤞

The main thing for me was accepting that CFS is a physical disease but is caused by nervous system dysfunction and also accepting that recovery is possible. Then things that helped were brain training (repeatedly visualising being well essentially - can send links to free videos if helpful to anyone, I didn't pay to do DNRS or Gupta or anything just read about the concepts), vagus nerve stimulation via TENS machine, the Arc4Health machine, therapy (specifically Internal Family Systems therapy - I resisted this hard because was convinced therapy could not help a physical problem), and removing myself from many CFS social media groups.

Things that really didn't help were supplements (spent a small fortune) or diet.

In case it's useful for others I found these resources so helpful:
The Brain's Way of Healing book by Norman Doidge (blew my mind)
Raelan Agle's youtube channel - recovery stories
CFSRecovery youtube channel
CFSHealth youtube channel
Primal Trust instagram account

So I alternated between these two each night before I went to sleep:

this one is a sort of mix of DNRS and Joe Dispenza. The bit about the healing centres is out there but if you suspend cynicism and go with it I think it's a great one

https://www.danielvanloosbroek.com/meditations/ the future self meditation on this page. This guy's website is amazing it's basically a free recovery course [not sure it is free anymore!]

Also at the beginning I just tried to do joyful things. Listening to music I love. Visualising past holidays. Watching beaches on youtube. I know some people are too severe for even that kind of stimulation though.

Re vagus nerve stuff, if you're on facebook the group A Vagus Adventure by Dawn Wiley has all the info you need on Tens machines and vagus nerve stimulation. I found her by chance but she was also recommended to me by my CFS consultant Dr Weir (she is his patient I think and has had amazing success in healing).

I will read more later but obviously meant to read this, as I am suffering from ongoing fatigue and trying to get the doctors to sort it out and not dismiss! It is so hard.....

Have you had your thyroid looked at privately? The NHS markers for having an issue are much higher than some other countries; an Iranian Dr I had (on the NHS) in pregnancy was honest with me about this. I’d already had a thyroid diagnosis privately and it changed my life (was previously told it was ME / chronic fatigue). He fully supported my protocol as said by his training I did have a thyroid issue, but by NHS standards I didn’t and I’d have to continue to get meds via private Dr. Also look at the Lightning Process - I did that for the mental side of ME and it helped my by around 60% to get some better quality of life back :)

Thanks @forcedfun I would have thought stress could cause a dysfunction though.

Without a doubt there is a malfunction going on somewhere- but I couldn’t say that dysfunction wasn’t caused by trauma, or stress.

@foggyoutside that’s really interesting. I am on that vagus FB page but can’t process the information to work out what to do 😅. I’ll work my way through your resources!

Without a doubt there is an element of physical healing through brain work of some kind.

I do Tai Chi as my exercise. That focuses on internal work rather than external work- which I have to remind myself!

It’s unfortunate that medics can misunderstand and be misunderstood about this side of it. Sometimes they appear to be saying’ pull yourself together’ when that’s not actually what they mean. Other times they’ve listened to ‘sophisticated message about healing through visualisation’ and heard ‘pull yourself together’.

@GingerSquid the Lightening Process is not just ‘not recommended’ by the NICE guidelines but that they actually recommend NOT to use it.

I am happy that you did find it helpful. But it look like it’s a ‘therapy’ to recommend.

I was just about to post an understanding reply to the OP when I saw yours.

I also have myasthenia gravis, obvs it's rare so you don't often come across anyone else with it!

Same here though, three years to get a diagnosis because the GP thought I variously had postnatal depression, the menopause and was making it up... I got diagnosed last year and things are better but, like you, it's learning to manage it and nobody really 'gets it'

@foggyoutside Tge thing is, you can link to thousands of people who have experience full recovery, this will still not tell you the prevalence of occurence. That’s why I tend to look at research studies.
And what they say is about 15% cure in the first year if the illness, 5% if the person has been ill for more than 5 years if I remember correctly.

There is also a big issue with the diagnosis. Because we do not have a ‘test’ for ME and not even an agreed diagnostic framework, I think it creates a lot of ambiguity.
Plus of course, it depends a lot on how affected people are. It’s going to much harder for someone who is severe, let alone very severe to ‘fully recover’ than someone who is mild.

Im not saying that ‘stress’ doesn’t have a role. It’s pretty obvious. Any stressful event is likely to make me crash.

But saying that it’s just about accepting recovery is possible etc… is making a psychological illness, which it is NOT.
I am going to go as far as saying that someone who is cured by using psychological tools only doesn’t have the same illness.