Menopause Matters Forum

Menopause Discussion => Other Health Discussion => Topic started by: jenny on August 28, 2011, 07:18:54 PM

Title: M.E. diagnosis
Post by: jenny on August 28, 2011, 07:18:54 PM
Not been on the forum for a few weeks, and missed everyone. I have been diagnosed with M.E. and not coping very well with this shock. I always thought M.E. was something people imagined, but now realise it is a horrible illness where you have little contriol over.

jenny
Title: Re: M.E. diagnosis
Post by: viv on August 28, 2011, 07:54:59 PM
Jenny I really dont know much about M.E so I really cant offer any advice. I do know that there are a few ladies who have this on the forum and I am sure they will be along soon to offer support.

All I can send is

 :hug:


Take care

Honeyb
x
Title: Re: M.E. diagnosis
Post by: CLKD on August 28, 2011, 08:23:18 PM
 :hug:  little steps!  You need to pace yourself, not do too much on the days when you feel 'better' ....... what support are you getting from your GP?
Title: Re: M.E. diagnosis
Post by: Jenny50 on August 28, 2011, 10:07:23 PM
Hi namesake, I thought you hadn't been around for a while. Now you've got a diagnosis let's hope your doctors can get you on the mend and feeling better.  Wishing you well and good to have you back here.

Jenny X
Title: Re: M.E. diagnosis
Post by: Bette on August 29, 2011, 08:47:57 AM
Hi Jenny
Sorry to hear that but I'm sure that the ladies who have this will be along to offer advice soon. It's certainly is a "real" illness which is thankfully recognised as such these days, although a lot of ignorance still persists.
Bette x
Title: Re: M.E. diagnosis
Post by: oldsheep on August 31, 2011, 09:23:31 AM
I've had M.E since 1988. This does NOT mean that you will have a life sentence too as many people recover to lead a normal life again.
Only golden rules (everyone is different and has individual solutions and needs) are not too much activity but not no activity - when you can manage it, I couldn't for a few years initially but then it plateau'd - and (easier said than done) try to minimise stress, get enough sleep, eat well and as far as possible, try to combat the big enemy which is isolation.
I'm no poster girl for all of the above, but recognise them as things I could have done differently which would have helped. If you have pain and can tolerate aspirin, for me nothing works better on the muscle, joint and gland pain if you have those.

look after yourself Jenny and don't let the b****gers get you down xxx  :foryou:
Title: Re: M.E. diagnosis
Post by: Taz2 on August 31, 2011, 01:01:35 PM
I was wrongly diagnosed with M.E. when, in fact, it was Fibro. This happens a lot apparently and it is worth researching to make sure that you have been diagnosed correctly. Who diagnosed it for you?

Taz x
Title: Re: M.E. diagnosis
Post by: cuddlycaera on September 01, 2011, 09:25:47 AM
Hi Jenny

I was first diagnosed with ME in the late 1980's after having glandular fever. I had a really tough few years with it but just did what my body told me. Give yourself time and take it easy on yourself and you'll get there. Its not all doom and gloom just accept that you'll have good days and bad & I echo what oldsheep said about not doing nothing, you should do what you can without overstretching yourself.

Good luck  :hug:
Title: Re: M.E. diagnosis
Post by: silverlady on September 01, 2011, 09:49:58 AM
I had glandular fever in my late thirties and it took years to get over the effects, and I don't care what any doctor says it is possible for it to reoccur, I use to have mini bouts of it with the fatigue, and I still get tired after a bout of strenuous exercise exercise or stress and take a while to recover, so maybe it is a mild form of  residue ME.

silverlady x
Title: Re: M.E. diagnosis
Post by: Taz2 on September 01, 2011, 10:18:42 AM
Hi susan - Fibro is thought to be caused by poor sleep -you never get into the deep part of sleep where muscle healing etc occurs. It differs to M.E. in that by improving sleep quality a lot of the symptoms can be eased. Amitryptiline is the normal recommendation. The exercise plan is different too.

Taz x
Title: Re: M.E. diagnosis
Post by: Trey on September 01, 2011, 12:36:50 PM
Where did Jenny go?
Title: Re: M.E. diagnosis
Post by: jenny on September 13, 2011, 10:34:17 PM
A big WOW, and thankyou all so much for your replies, I have a lot to learn. I have shut myself off for a while.
I don't seen to be able to concentrate very well lately and forget things - my kids laugh at this and just say I'm getting old. I agree with them and laugh along with them.
Larky, yes found your pm, and thankyou - will pm you soon.
Taz, will mention what you said tomorrow at g.p.
Good to be back on forum, I have missed you all ladies.

jenny
Title: Re: M.E. diagnosis
Post by: two_sore_feet on September 16, 2011, 04:40:48 AM
Do they still call it ME?  I thought the profs were calling it CFS now?  I have chronic fatigue myself, whether that means I have CFS I don't know.  I got a diagnosis of CFS in about '03, which my next GP then pooh-poohed.  (I've seen dozens of medical experts and they all tell me something different.  They seem to specialise most of all in contradicting each other, and confoozling me).

My fatigue is brought on by being in constant severe pain and not sleeping (no surprise there).

I am currently on amitriptyline (10mg, as a muscle relaxant) to help me sleep.  It worked well for a year or so, but now just recently I am waking at 4am again (sweating).
Title: Re: M.E. diagnosis
Post by: two_sore_feet on September 16, 2011, 06:23:53 PM
people living with ME/CFS need support and understanding especially in light of the government and medical professionals scepticism about the validity of their problems.
Quite.  They've just stopped my benefits - I scored zero in their farcical Work Capability Test (squeeze my fingers; touch your toes - yes, you're fit for work now eff off).
Title: Re: M.E. diagnosis
Post by: two_sore_feet on September 16, 2011, 06:37:31 PM
That's good to know.  I have appealed, just waiting to hear now
Title: Re: M.E. diagnosis
Post by: jenny 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
Title: Re: M.E. diagnosis
Post by: Scampi 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
Title: Re: M.E. diagnosis
Post by: Celine on October 25, 2011, 09:52:52 AM
Sending you all best wishes.

C x
Title: Re: M.E. diagnosis
Post by: amandria 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
Title: Re: M.E. diagnosis
Post by: Scampi 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!
Title: Re: M.E. diagnosis
Post by: Julie. 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.