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Author Topic: M.E. diagnosis  (Read 7816 times)

jenny

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Re: M.E. diagnosis
« Reply #15 on: October 24, 2011, 06:36:22 PM »

Thanks, hope every one is ok. I always thought M E was something in the mind. Never realized it was diagnosed. Good to be back on site.

jenny
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Scampi

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Re: M.E. diagnosis
« Reply #16 on: October 25, 2011, 08:08:40 AM »

I was diagnosed with ME in 1988.  My doctor was wonderful and told me to go against everything I had always done and just 'give in' to it for a while to allow my body to heal itself - I slept for about 22 hours a day at first!  After 3 or 4 months, I was able to get back to some sort of a normal level of activity, but I had to listen to my body and learn to recognise the signs that I had done enough.  It took a few years, but I came through.  I will say though, that even now I 'forget' words when I'm tired - I can be in the middle of a sentence and I 'know' what the word is I want to say, but can't seem to get it into the right bit of my brain to actually say it (it's such a strange feeling - so hard to describe - but anyone who has also suffered it will understand).  My family and close friends recognise it as much as I do, and sometimes comment that I'm doing too much if I seem to be forgetting a lot of words.  Take care - it WILL get better xxx
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Celine

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Re: M.E. diagnosis
« Reply #17 on: October 25, 2011, 09:52:52 AM »

Sending you all best wishes.

C x
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amandria

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Re: M.E. diagnosis
« Reply #18 on: October 25, 2011, 09:44:08 PM »

Hi Im mands, im new here, I am certain that i have ME, even my doctor is starting to think i have it, because i have had loads of blood tests etc over they years, and always with the same symptoms, yet every test comes back ok, its been a few years since a flare up, all what is wrong with me now is the menopause, its been very difficult seperating all the symptoms lol, as for a while, i had fekt i was having ME problems until my dotor pointed out that it seems likely to be menopausal, ive donr loads of research and a load of soul searching lol... changing to a more healthy diet and taking it easy, any chance you get, just rest, im a reiki master, so i give myself self treatments, and i also meditate to, with ME we feel held back a lot, out hearts and minds want to do so many things, but our body seems to fail us, years ago on and of, i would feel so exhausted, which i could litrally just fall to the ground, the worst ME attack for me, was xmas a few years ago, when i just passed out, i was just forseing myself to get things done, and shopping trip with my neice which i didnt really want to go on lol, knocked me over the edge.. so having ME its vital to say NO when you just dont feel up to something, so yeah, i think my ME symptoms have moved over for my menopause symptoms lol I have a friend who is only 21, and she has fibro and ME there are days when she is in a right state, some people are in wheel chairs and bed bound, but i really do belive that positive thinking can really ease all symptoms, drink lots of water and eat healthy, lots of fruit and vedge.. cut right down on caffeen and suger and junk foods, ive noticed more of a diffrnce in my self since starting to use manuka honey twice a day, ive never felt this good in ages, there may not be cures for certain illnesses, but looking after ourselfs proply can make us feel a hec of a lot better and stronger to cope with all what we go through xxxx
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Scampi

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Re: M.E. diagnosis
« Reply #19 on: October 26, 2011, 09:40:08 AM »

Mrs Purple - I know I was extremely lucky to have such a forward-thinking, understanding GP when I was diagnosed, and I am grateful for him every day (I just wish he was still my doctor!).  Even now I have to listen to my body (I also have an inflammatory arthritis disease now, one symptom of which is fatigue!), but he taught me how to do just that, and that it's OK to sometimes say 'I can't'.  I'm having a tough time at the moment due to the arthritis and stress of my parents both being seriously ill, but I'm coping largely due to what that wonderful doctor told me all those years ago.  If only all GPs were like him, we'd  all be happier, healthier ... and spending less time seeing the doctors!
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Julie.

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Re: M.E. diagnosis
« Reply #20 on: October 28, 2011, 02:36:55 PM »

Hello everyone,
I too have ME and also Fibromyalgia and other health problems too.

I have had FM for over 30 years but only diagnosed 9 years ago when i caught a very nasty virus (was in hospital being tested for Meningitus) and all tests came back negative. I was also diagnosed with ME too.

I cannot stress that in the very early stages like others have said will have a bearing on how you recover and manage your life a lot better. I wasn't given any advice for many years as no-one knew what was wrong with me back then so i just carried on working, bringing up a family and pushed myself until i had a breakdown, hence the viral infection which then had me bedbound on and off for 6 months.

I was eventually referred by my Gp to a local ME group run by specialist's at Grantham Hospital who ran a 12 week CBT course. I went even on days when i could hardly move and it taught me the art of pacing, deep breathing, and so many other things to help me live and manage my life as best i could.

Today i am in constant pain with my FM all over the whole of my body and i suffer dreadful fatigue but i have a good life as i pace myself. I havent been able to work since i was 43 ( i am 57 now) havent driven for 9 years and use a mobilty scooter which has given me back alot of independence.
Each and everyone of us with FM/ME are totally different and what works for one of us dosn't another. I can't tolerate any drugs whatsoever as they made me a zombie and never touched the pain.

I have done all the diets, etc etc etc and they don't help me one bit.
You have to find your own way of dealing with this illness if you want some sort of life.
Yes i remain positive but things come along in life to knock you back ( my father and father in law are both terminally ill) and i have alot of family problems too. Stress make FM/ME go off the scale as those who have it will tell you.

I had a nasty car accident in 1976 which i sustained severe whiplash and lower back problems. I also had two further rear end car accidents in the 1980's. I was never the same since and was always at the Gp's or having phisio, etc but nothing helped.
There are no test's for either FM or ME as they all come back normal.
I have also had an MRI brain scan for MS and that was normal too.

A website i find helpful for those with ME is www.afme.org.uk
Those with FM a good one is www.ukfibromyalgia.com

I have a best friend with ME who was wheelchair bound for many years as she lost the use of her legs but now with the correct treatment, help and pacing she is now able to walk albiet very slowly.

Anyone wishing to PM me for a chat etc are most welcome as this is a very misunderstood and lonely illness which alot of the medical proffession and public still don't think exists.

Sorry gone off a tangent.
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