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Has anyone with ME Deteriorated over time?

Murfle profile image

Has anyone with ME found they have deteriorated over time? I adapted to my new normal after being diagnosed over two years ago. I relapsed last November and I am nowhere near back ‘my new normal’. I’m now not working since then and had no choice but to step back from everything to the point it’s not often I’ll leave the house and I don’t really see anyone. As with most people with this condition I don’t have the support of my GP and no longer feel comfortable in discussing it with them. Look forward to hearing your thought or from anyone who has experienced similar x

13 Replies

I am just the same. Got diagnosed about 8 years ago after god knows how many tests and medical appointments. I was off work about 12 months and went back part time but had to give up after a year. Thought I was coping with my new normal but got worse 2 years ago. Hardly go out and friends have drifted away and family seem to get annoyed that I’m not getting better. My GP is ok but I don’t go there unless I am desperate because once diagnosis was made you have to basically get on with it.

Some days I get so depressed about my situation and on the occasional good day I try to do stuff in the house and end up back where I was just lying around. I find the whole thing frustrating because before I became ill I was so fit and active and I so want to go back to the old me.

Have you been to the CFS clinic. I was sent there and I thought it helped just talking about the illness with people who understand because unless you’ve felt ME you can’t understand how we feel. I liken it to having bad flu, feeling sick and absolutely no energy at all and oh yes pain.

Sorry I am going on a bit but I don’t talk to fellow sufferers very often.

Murfle profile image
Murfle in reply to Patdoyle

Hi Paydoyle,

I appreciate your reply :) Its the first time I’ve reached out! Im trying to get my head around this and see what everyone else is doing to keep their head above the water. Its pretty much the same for me, I went back to work for only 5 hours a week and I managed to keep this up for 18 months. I’ve been off now for a just over a year and just feel I’m trying my best to get through each day. My circle of friends have seem to of gradually diminished and my family just don’t get it. It’s my poor husband who is the only one who sees and feels what’s really going on. He works 12 hours a day so I’m pretty much left to my own devices.

I have attended an M.E. Clinic, I initially was pleased to speak to someone that got it to but soon realised that the advice they were giving me was not really conducive to real life.

I approached my GP two weeks ago as I’m worried that something else is going on because I didn’t even feel this rotten when I first became unwell to be told I was clutching at straws :(

Like you say, you pretty much get your diagnosis and then be on your way!

Patdoyle profile image
Patdoyle in reply to Murfle

I kept going back to the GP too because I definitely thought I had MS or something equally as bad. The GP said ‘ doesn’t matter if you have ME or MS we can’t cure you’. Never went back to that particular doctor. I now plod on and if I have a reasonable day I enjoy it but don’t take it for granted. The CFS clinic push the pacing theory but even though I try to pace myself practically it’s not always possible. I still have to do my chores and use any energy I have to do the basic stuff like laundry. I got myself a cleaner 2 hours a week to change the bed and keep the kitchen and bathroom clean and that’s helped enormously.

Kitten50 profile image
Kitten50 in reply to Patdoyle

Hi all, yes me too , your stories all sound so similar to mine. I went for years constantly being ill, always having a what I thought was 'just' a cold. I would fall asleep at work, I would need to take days off just because I was too tired. People started accusing me of being lazy and not wanting to go to work. I would sit in the GP room time and time again and be told to go for blood tests, take vitamin supplement ect ect, you've been there. It got to a point after an operation when I returned to work I was going to work for 2 days then couldn't get out of bed for 3 days, I would then build myself up again over the weekend and return to work on Monday. Guess what - yes I was worn out and good for nothing by Tuesday night. Obviously employers don't take to kindly to this so now I don't work at all. I hardly go out and when I do I don't go out alone. All my friends seem to have stopped contacting me and even family don't support as you would expect them to. I potter around the house and keep it tidy and manage to do the washing ( well I put it in the machine haha ) but as for anything else I don't have the strength or energy. It frustrates me so much that I do simple tasks and then sleep for hours. I sometimes wonder is it worth living for.

I too attended the clinic but now I'm back on my own while my hubby works 12 hours a day to earn enough to support me.

Avon73 profile image
Avon73 in reply to Kitten50

Hi, I've just read your post, and this could have been me, the exact story, my work, family, friends everything.. sorry but you explained my Life and that I was beginning to feel like I was the only one to feel like this..

The only difference is it's just my daughter and I, she is 21 and although she's a huge help, I feel quilty that I am not the independent, happy, sociable mum she's always known..

Kitten50 profile image
Kitten50 in reply to Avon73

Thanks for your reply Avon73. It’s nice to know we are not alone in this. It’s good to hear you have so much help from your daughter but yes I completely understand that you feel guilty as I too feel I cannot give or do things for my family as much as I would like to. The mind is willing but the body is weak 😐x

Hi Murfle.

There are many stories in these forums, many differences, many common themes. I’m sorry your GP is unsupportive, but you do need support both to live with this condition and to recover something of your former self (yes, that is possible) alongside of your new normal.

Well done for finding this place, as there’s a wealth of experience to explore and good ideas to be had. Browse back along the timeline at the posts and their replies; finding an individual you want to hear more from, click on their picture and browse their “posts” and “replies”; and so on in true surfer-style.

My own m.e. kicked off over twenty years ago, but wasn’t diagnosed until the beginning of this century (I love saying that! It sounds so ancient!) It was serious enough to lose me my beloved and lucrative career, but not so serious as to stop me doing a bit of regular, mindless, minimum wage work. That was so important for me as it kept me in touch with people, people who could see how damaging the m.e. was to me. Thus I kept a degree of social integration, a bit of emotional and practical support and got a bit of exercise. Granted, I was stupid as fuck, staggered like a drunk and kept falling asleep in the loo at work - but I was visible. M.E. makes ghosts of its victims, and makes the whole problem invisible. And, of course, back then the internet wasn’t much help. So welcome. Be visible. Be positive - and don’t get hung up on the negatives of your condition. My favourite approach to my condition has always been what I think of as stealthy, Ninja tactics. That is, when I feel totally shit, weak and feeble and expect to have another day of doing bugger-all, I’ll take myself by surprise - put on my shoes and coat and stand outside taking deep lungfuls of fresh air and smiling into the sun. Of course, I’ll then notice I didn’t put my trousers on, slope casually back indoors and be unable to do any more than sit on the sofa and giggle. But it’s a start.

Xx

Yes this happened to me. I was pretty much constant with what I could manage for the first 8 years. I knew my limits and then about 2 years ago I got worse and have never gone back to what I was, my limits are half of what they used to be, I used to be able to leave the house 2 mornings a week to get food in and now I struggle with going out once a week and now dread that day rather than look forward to getting out.

I'm hoping that it's down to being in peri menopause and I'll improve one day but then I think the getting worse happened after a very stressful time with the benefits systemn and I think the stressful prolonged tough time (18 months!) just made me worse. I'm dreading it if another stressful event comes along as I live alone and dont have anyone to help out nearby

Jo

Yes I adapted too, ensuring I do not cross the line of pushing myself till I crashed. Yet now I find my threshold is less each time I have a crash. My GP was dismissive of things I brought to her attention on my last visit, I felt like a timewaster. My rheumatologist on the other hand is very understanding. I too have ME, and Fibro but also Behçet’s disease. So the Behçet’s is a very rare auto inflammatory condition (type of vascilitis) I’m the only patient in my GP surgery & one of 20 in CCG area with it - that’s how rare. My rheumatologist told me to see GP if I was concerned about anything changing. Just disheartening when you still have those concerns and choose to wait to see the consultant (luckily it’s monday) to get answers. I’m going to ask her to please write to my GP emphasising the nature of how I shouldn’t be brushed off. I know this body better than anyone, if my baseline has shifted it’s not trivial but terrifying.

Hope you get some support soon. 🙄

I should add that even a lead neurologist told me that everyone is different . So there’s those who can manage work even if it’s an hour a day, those housebound, etc. I have heard it all over the years, people saying they had ME or knew of someone else with it and they managed to do XYZ... thing is no two cases of M.Eor fibro are the same, Your limit could be more than manageable to another. This is where I learnt the hard way. Thinking I wasn’t trying hard enough- that neurologist told me if I didn’t pace myself and then learn to conserve my energy I’d end up bedbound.

My rheumatologist advised me to use an electric wheelchair to conserve my energy I needed for the days out to hospital etc, just think of the wheelchair as a tool she said. It was best advice I have received. I use crutches elsewhere - as I get spasms that cause me to fall flat on my face!

Thankyou so much for all of your kind replies apologies for not getting back to you all sooner 😊 it’s so sad to read how we are just left to get on with it and muddle our way through. I hope Christmas went well for you all. I was so frustrated the other week as I am so sure something else is going on that I made a appointment with the GP. Firstly he found it strange that I wasn’t on any medication! Particularly anti d’s! Secondly he just turned around and asked what is it exactly you want me to do. He assumed I was not accepting my diagnosis of ME. I told him straight that I fully accept it, I’ve been through all of the emotions that come with it. But In one breath GP’s will say you are in charge of your own illness and you know your own body more than any other but when you report change you are not accepting of your condition 🤯

I asked for a review of my bloods as I said the tiredness and brain fog and general neurological decline was on another level.

Can’t tell you how long it’s taken me to write this 🙈 he begrudgingly agreed.

My bloods have now comeback (I asked for a print out) but the main thing that jumps out is my b12 of 186 ( Range here is 180-900) and my folate levels are only 3.2 which is classed as a deficiency. I have a telephone appointment with the GP next week but I know I will have another fight on my hands. It’s mentally exhausting.

Hi. If you are eating red meat on a regular basis and your B12 levels are dropping, then you could have pernicious anaemia, another autoimmune disease. Your folate is also way to low and needs to be supplemented, as they both work together. Get your D3 checked out too as well as all thyroid tests T4 T3 TSH. You may have to get these done privately as nhs doesn't seem to test all. Look at Pernicious Anaemia site on Health Unlocked, loads of info there.x

Murfle profile image
Murfle in reply to Catlover3

I’ve had my appointment and have been told to take a multi vitamin and we can review bloods in about 6 months 🙈

I’ll pop over to the guys on the pernicious anaemia site 😊

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