M.E. or chronic fatigue syndrome info plz

loopy_lass · 27 May 2005 at 1:20PM

sorry if this has been asked and answered before, i have suspected for the last 7 yrs or so i have been suffering from ME. however, the drs (quite rightly i guess) have tested for other possibilites and drawn a blank.

i have read up on this syndrome and strongly feel this is the problem, any one any ideas how i get my GP to listen to me?

I know there is no cure, and i know and am doing the "lifestyle" thing to help, but if i could at least know, i could then ask for extended work time at uni etc. without feeling a fraud, and i could also tell my "lovely" family that i am not a fat lazy slob.

thanks

loops

Cat72 · 27 May 2005 at 1:39PM

You could try contacting the action for ME society as they have some details about approaching your doctor with regards to this isssue. You could either be very forceful and demand to see a specialist or change doctors. Unfortunately a lot of doctors either do not believe in Me or in the case of myself know nothing about it as thay have had so little personal experiance. Depending in what parts of the country you stay in the NHS facilites vary widely, the ACTION FOR ME can help with this info too.There web site is www.afme.org.uk . I know it can be hard to forcethese issues with Drs but at the end of the day it is your health that is important, so try to be forceful. I have been diagonased but some of my family still do not except it and still class me as hypochondriac/ lazy. Good luck and let us knowhow you get on, Pm if you like, as I have some leaflets I can send you.

november · 27 May 2005 at 1:41PM

Try this website http://www.afme.org.uk/allaboutme.asp?id=1

Its Action for M.E. (a UK Charity) and the page I have linked to has links down the side on things such as What is M.E., How is M.E. diagnosed etc.

Diagnosis is usually done by elimination. If you have been tested for other things and have symptoms that could be M.E. and tested clear for anything else M.E. can be diagnosed.

It has now been recognised by the GMC so doctors should now diagnose it (this was more a problem in the past when it wasn't recognised).

You could check the symtoms as listed on the Action for M.E. site and take them to your doctors if you think they match what you have. Then say as tests show I haven't got anything else do you think I could have this?

If your G.P. won't recognise M.E. you could contact the UK Charity on the link for advice.

Ummmmmmm and to keep this in line with MoneySaving - non of this will cost you a penny

Good luck. I believe I had M.E. many years ago and am now in the main recovered (I was left with 2 remaining 'symptoms' but they don't affect my daily ability). At the time it wasn't recognised so I didn't have it officially diagnosed. However I have met a few other people who had the same symptoms as I had and with a bit of guidance they got a diagnosis. I therefore do understand the importance of getting a diagnosis in order that people understand what you are going through (At the time I got the sack for 'lack of commitment' to my job for taking 2 months off which although certificated just said 'virus'.

MonkeyGirl · 27 May 2005 at 1:46PM

Unfortunatley there is no diagnoses for this. Its a case of the dr ruling everything else out then saying yes you have it. The only thing I can suggest is maybe mention to your Dr about it. Actually go in there and say " I've been coming to you knwo for ex amount of years with the same symptoms is it possible that I have M.E / CFS" Some Dr's call it M.E other CFS just depends on the Dr. As some one else said check the list of symptoms then you can also go to the Dr and say I've researched it etc.Good luck with it.

MonkeyGirl

loopy_lass · 27 May 2005 at 2:21PM

thanks, most useful info... have printed out some stuff to take with me to drs... have made app with different one this time...

loops

Cat72 · 29 May 2005 at 12:00PM

PLease let us know how you get out. Good luck

loopy_lass · 29 May 2005 at 5:42PM

will let u all know the outcome of wed... thanks for support.... feel a bit of a fraud as my thread is not actually money saving is it... sure martin wont mind....

loops

Phonix · 29 May 2005 at 6:42PM

How's your sleep?

loopy_lass · 29 May 2005 at 6:49PM

sleep... mmm well, that fluctuates phonix... sometimes i can be dead to the world nigh on 23hrs per day, other times i can be up and about at 5am, get everything done, then run out of steam and have to go back to bed.

generally i go to bed around 10pm, sleep until 8am, once i get me legs working im up and doing a bit of this and that, then i run out of energy about 1pm and sleep till 2.30 - 3pm....

thats about it...

loops

Phonix · 30 May 2005 at 2:34PM

Try this,

Go to bed at 11 or 11:30 get up at 7:30 and pull yourself out of bed. If you don't have to pull yourself out of bed you haven't slept properly.

generally i go to bed around 10pm, sleep until 8am,

depending on how easy it is for you to get to sleep, I think you're oversleeping which means you WILL feel tired and lethargic during the day and this is the cause of what you may feel is part of ME.

i can be up and about at 5am

If you're getting up at 5am and not having to wrestle to get out of bed then you're not sleeping, it's as simple as that. When you wake you should feel tired and want to lie in bed, if you're just getting out of bed on a high then imo you haven't slept.

Those frequent 5am starts are putting strain on your body throughout the day and is messing up your routine, meaning it's harder to sleep at night. Get a nice rythem going, stop getting up at 5am and you'll be fine.

Also one last thing. Imo if you don't sort out your sleep this can only get alot worse and you really don't want that to happen. I think it's all down to your sleep as is the case with alot of people who think they have ME. I'm not a doctor though but even doctors don't understand this condition.

loopy_lass · 30 May 2005 at 3:16PM

thanx phonex will give that a try, theres no pattern to my sleep, after 8 yrs of this carry on plus other things, i tend to listen to my body and sleep when im tired and eat when im hungry...

maybe i been doing it all wrong then.. will give your info a go..

loops

M.E. or chronic fatigue syndrome info plz

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