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[jenny]

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

[viv]

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

 


Take care

Honeyb
x

[CLKD]

   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?

[Jenny50]

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

[Bette]

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

[oldsheep]

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 

[Taz2]

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

[cuddlycaera]

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 

[silverlady]

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

[Taz2]

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

[Trey]

Where did Jenny go?

[jenny]

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

[two_sore_feet]

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).

[two_sore_feet]

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).

[two_sore_feet]

That's good to know.  I have appealed, just waiting to hear now