Fibromyalgia/CFS/ME Thread

Hello to all fellow warriors

Hello to all fellow warriors

Hello ...xx

Big Hi from me too xx

Woo hoo a new forum - yay. Have you all been following the ME thread in emotional support or are there any newbies here? Should we re-introduce ourselves?

Lets introduce ourselves! I tried to have a look at the ME thread but it had been going on for so long i got lost!

I am Louby, I have had ME for about 6 years now. I have gone from totally bedridden and being carried up stairs and to the loo to now coping quite well, obviously there are blips, but i like to try and stay positive and rather than comparing myself to everyone else, i compare myself to how i was and see how far i have come.
I have a gorgeous fiance, a farmer, who is hugely supportive. he didn't know me before i got ME so only knows me as i am now, which is quite nice as some of my older friends find it difficult and always bring up "how i used to be", going out all night, being the last to leave parties etc! now i don't drink and tend to leave first, but hey, i always have fun!!!

Look forward to getting to know you ladies!
x

HIya! I haven't been following the thread on emotional support so it's good to see you here.

I was diagnosed with fibromyalgia & cfs, but I believe these are symptoms of my HMS and its complications. Pain is exhausting. I have noticed a pattern to my symptoms now so it is getting a little easier to manage because there's some predictability.

Hi girls

I didn't know there was an ME thread on ES but there have been a couple on GC over the last year or so which I've contributed to.

I've had M.E/CFS and Fibro for 9 years. I went from having a successful career with an active social life to being bed and house bound. Things have improved since then and I'm able to go out a few times a week but I still struggle with the pain.

I'm also really bad at 'pacing' and have recently been to an M.E/CFS clinic run by the NHS for 10 weeks to learn how to manage the illness better. Having had it for 9 years, there was a lot I knew already as well as a few things I've taken on board. I tend to boom and bust and don't have much structure in my days, so I'm trying to get that part of my life sorted at the moment It was also nice to meet other people with the same problem as it's the first time I'd been to a group like that. If I'd been when I was newly diagnosed, it may have been more helpful, but at least the service is now available.

I'm going to try the Lightening Experience after the wedding next year and that may prove to be helpful (or otherwise). I'll go in with an open mind and see what happens.

Hope everyone's having as good a day as you can x

Ooo, if you go on the lightening programme could you let us all know how that goes? My mum has been on about it but its a lot of money, especially when I don't know anyone who has been on it yet.

I'm being referred for a 3 week live in course at the National Orthopaedic hospital to help me manage my pain better and hopefully be able to do more than I do now. I've been referred there by my specialist who deals with ehlers danlos / hypermobility. CFS and fibromyalgia seem to go hand in hand with it.
I hope it helps!

xx

Hi I was diagnosed in 1993 and was very limited for a long time but since 2000 I have been much better....I've just started uni as a mature student and I have my fingers crossed that I'm going to be able to carry on ....x

sweetjo, of course I will My Mum's encouraging me to do it as she read an article about Esther Rantzen's daughter 'recovering' from M.E after treatment at the Lightening Process. She went from being wheelchair bound to running a normal life and is back to work.

There is also a lady on here, Chaela something I think? who had ME and did the Lightening Process and is now better. So there are 'real' people who have found it useful. I think, as with most things, you have to keep an open mind. What works for some may not work for others, but they're worth a try if it means there's a 50% chance you may improve, even slightly.

Good luck with the live in course - that sounds interesting.

daisyloz - well done on going back to Uni! That's fabulous - hope you find it really rewarding and manage it ok x

Just spent the last hour going through the CFS/ME thread over on ES.....wowee! that took some doing! Great that you've all had support and got to know each other - just wish i'd taken a peek in ES before so I could have joined you! I don't tend to go in there to be honest but I'm glad I found you in the end x

Me again! Just seen on Sky News that the front cover of the Independent tomorrow says there's a breakthrough for M.E - couldn't see it properly because it was so small! but it said something like they've found the scientific cause so can now concentrate on finding a cure?! That would be great news if it's true! Going to buy a copy of the Independent tomorrow x

Oh Miss VW could you let me know what is says. I'm living in Spain so don't get a chance to get my hands on a choice of UK papers. Plus I'm on my own this weekend and my back is out after some goodbye loving if you get my drift! sorry if tmi but I'm in dreadful pain right now, (totally worth it) but it means I won't be getting out to the shops. So a report on the report would be wonderful. *big cheeky grin*

I was reading something similar on the internet a few months ago. It was something to do with the mitochondria in ME sufferers not working 'normally'. I can't remember the details, but it looked like a step in the right direction.