Does anyone have any experience with ME?

nat17

nat17

Minnie, Sam and Dolly
May 30, 2002
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Or Chronic Fatigue Syndrome as I think its called now?

Just wondered if anyone suffers from it, or knows someone that does...

Do they work, how do they manage it with working.. has it progressed or got better over the years...

:smile:
 
Not much, but my doctor retired early when he developed it. That says alot as there are some negative attitudes toward its existence.

Friend also had it prior to me knowing her. She didn't work for a few years and had a pretty difficult time with depression as well (not sure what came first or if the depression was because of the ME) but she works alot now and is very motivated although I do see her sometimes take a little time out, it's always a concern that she may go back there.
 
I suffer from it and believe there are a few others on here who suffer from it too. I was diagnosed at the age of 19 and will be 30 this year. At the beginning i couldn't understand why i was so tired all the time, No matter how much i slept i still felt tired.I also ached all over with it and when i was having really bad periods found it difficult to even string a sentence together.
Over the years i have learnt to live with it and accept it. i have also learnt my triggers and when my body is telling me to slow down. I ended up suffering with anxiety because of it and when i use to try and ignore it and carry on, i would have an anxiety attack and then crash for days. Its hard having an illness like ME as you look normal and when you say your tired, some people don't understand what tired actually means to you.
These days i feel i am recovered, as long as i listen to my body i don't relapse. I have learnt what my limits are and tend to stick to them. I'm a deputy at a pre-school, working 3 days of 8am until 5pm and two days of 8am until 3pm.I have a horse who is on grass livery, which includes him being checked and fed for me every day. I go out with friends but if its a week night i make sure its not a late one and also dont make a habit of going out too much when i have to work the next day.
 
I am interested in this thread and what people have to say as I have suffered with chronic fatigue (amongst other things) for at least two years now. I've been backwards and forwards to the dr and have numerous tests for this that and the next thing but no diagnosis other than I am "physically well", ie there is nothing physical to account for my symptoms. My last tests a few weeks ago showed slightly low iron levels but dr explained this could be normal for a 26 year old female. On iron tablets & then back again in a few weeks. I don't necessarily think I have me as I am not sure i would be capable of doing all i do if I did?i walk miles each day as part of my job. On drs recommendation I have also taken up swimming. Went tonight and know I will 'pay for it' tomorrow, the next day and even the day after. I seem to get through work ok during the week (feel this may be because I have no option but to!) but evenings an weekends would be a total write off if I didn't have a positive attitude and made myself do things (albeit I have to pace myself & rest throughout the day). The drs have been down the mind route and I was on anti depressants for months (didn't believe I was depressed but was willing to give anything a go to see if it helped) but they didn't make much difference. The frustrating part is no matter how good I feel a nights sleep is I still wake up exhausted. The hard part is its difficult for people to understand how I feel because I look fine.
 
I have two work colleagues with it and they manage but are obv exhasuted alot and when stressed sometimes have to take off work to recover.
 
Yes, from the age of 19 to around 28/29. Although my doctor was a 'non believer' and wrote that there was nothing wrong with me and I needed a holiday!! :eek: I kept getting told I had depression - I was the least depressed person you could meet! The doctor even wrote 'says she has ME but there's no proof of it' - he said it was 'one of those things that didn't really exist, did it!' :eek: It was only through reading (in books...before that thing called Google!) and matching my symtoms that I thought 'yes, this is me, 100% when I found articles about ME.

I had just got Fella, I was working 2 jobs and loving life! Suddenly I was sleeping upto 23 hours a day, had pain in all my muscles, chest pain, exhaustion and felt permanently hung over/like I had flu. It was hell. Some days were good - I could go to the horses, maybe poo-pick a bit and maybe ride a little, some days I could go for a walk - other days I could barely get out of bed. My parents were petrified, and I could see how scared they were for me, and I was just frustrated with the doctors.

Eventually I changed doctors, and found a good one who was more clued up!

I just gradually started having more good than bad days....until the bad days were few and far between. I consider myself totally ME-free for the past 8+ years! :)
 
martini55 said:
I am interested in this thread and what people have to say as I have suffered with chronic fatigue (amongst other things) for at least two years now. I've been backwards and forwards to the dr and have numerous tests for this that and the next thing but no diagnosis other than I am "physically well", ie there is nothing physical to account for my symptoms. My last tests a few weeks ago showed slightly low iron levels but dr explained this could be normal for a 26 year old female. On iron tablets & then back again in a few weeks. I don't necessarily think I have me as I am not sure i would be capable of doing all i do if I did?i walk miles each day as part of my job. On drs recommendation I have also taken up swimming. Went tonight and know I will 'pay for it' tomorrow, the next day and even the day after. I seem to get through work ok during the week (feel this may be because I have no option but to!) but evenings an weekends would be a total write off if I didn't have a positive attitude and made myself do things (albeit I have to pace myself & rest throughout the day). The drs have been down the mind route and I was on anti depressants for months (didn't believe I was depressed but was willing to give anything a go to see if it helped) but they didn't make much difference. The frustrating part is no matter how good I feel a nights sleep is I still wake up exhausted. The hard part is its difficult for people to understand how I feel because I look fine.
Click to expand...

I felt very much like this for a few years, and have been doing nightmare shifts for six months... I thought things would e terrible but actually the utter erratic ness seems to have confused my body into not felling tired?!
 
I had a friend with it years ago. She picked up a virus whilst on holiday.

She went from being extremely fit and active to being extremely tired with bouts of anxiety. She had to change her job and her whole way of life.

I have an illness that causes fatigue as a side effect. It makes it difficult to commit to things, some days I am ok and others not, without warning.

I just try and pace myself as best I can.

I wish these things where better understood as I find myself trying to explain but generally people don't understand or forget because the illness can not be seen.
 
popularfurball said:
I felt very much like this for a few years, and have been doing nightmare shifts for six months... I thought things would e terrible but actually the utter erratic ness seems to have confused my body into not felling tired?!
Click to expand...

I am glad you are feeling better, I take it your sleeping patterns have changed then? Maybe that has actually been beneficial for you. I feel different day-to-day and also within the day (it can start off okay and end rubbish or vice versa). My Dr has basically said I am doing all the right things- keeping positive, eating well, exercising and making myself do things (but pace myself). But my friends and family worry about me and are convinced there is something seriously wrong with me. I wish they would diagnose something to put their minds at rest.
 
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