Hello Ellie, it's a long time since we last "spoke".  I was a member of the old "This Morning" forums and  was known as "Poppy".  When the new forum took over, my details were transferred over, (and are here somewhere that's why I can't use the name Poppy any more) but I've had such difficulty logging in that I gave up for a couple of years, until today when I thought up a new name, joined again, and lo and behold the first person's name I see is yours.  Sorry to hear you're still in so much pain, I'm just the same too, except for realising that the hospital folk were  right in saying that underlying stress plays a big part in this illness, and if I could solve that I'd feel a lot better.

I assume this site closes at 10pm as in the olden days, so I'd better close before I get cut off.

By for now,

Henery's Mum, Popppy

I've just spotted Beth's name too, Hi Beth.

How did you get on with college etc?  I look forward to hearing all your news.

 Poppy

hi Poppy, its so gd to hear from u, i too had geat probs getting into new site for some time, but Katie sorted me out, i too have come to point of knowing damn stess along side of cold n damn or heat plays big role in increasing pain, also if i dont do follow damn books of ''do's n dont's'' then am even more done in, so add them all together, after all years of damn hard work, now am down to    ''follow the book'' or do what i do''' just shut up n put up''. as no matter what i do or dont pain well n truley in charge of whole life. RA n OA n Algodysthroghy, on left foot just icing on cake, ahhhhhhh so much to talk n tell but as ever MR.PAIN says,, enough of having fun!!!! so best get off , but so gd to hear of u pls keep in touch, dont know how to email u or PM u but this is better than nothing, take care for now.

 

Ellie

Good to hear from you Ellie.  I've overdone it a bit myself today, so I won't chat for long as I'm sitting here yawning my head off, and I should be downstairs making the tea for husband coming in shortly.

TTFN,

Poppy

hi poppy n tnx for yr reply, i know how u feel i feel that way day n night just make me wonder how much longer its gona go on, cold n damp weather plays up OA n RA n increase FM pain, n heat plays up me left foot, so as ever just hubble here n there n not knowing what to do for best. anyway take care n chat soon as pain wont let me do more typing.

 

Ellie

Hello,

I have recently been diagnosed with Fibro, well technically twice diagnosed my Neurologist  a few days after christmas 07 , he diagnosed me but then refused to put it in writing and i had to wait five months to see a Rheumologist who i saw on the 3rd June 2008 and he "offically" diagnosed me.

 I am quite young i am 26, i dont know how old people are on this forum but i am feeling somewhat alone at the moment i have been to a local fibromyalgia group which is held once a month, it might be nice to speak to someone on the internet about what i am going through.

 
Brujah
 

Hi there Brujah,

My name is Jaki and I was diagnosed last year and have had this for 22 years, it does help talking to other sufferes and I to go to a group meeting held every 3rd Wed of the month at ArrowPark Hospital, I am 34 but there are loads of people on here of all ages and severaty of this condition.

Anything I can do to help please ask.

I became ill after a virus in july last year and have gone downhill since then, the doctors seem to think i have had the condition for two years or so before then though when i had a chest condition called costacondritus.

My life seems to have been turned upside down; i can only walk on crutches now, i am on morphine patches and tablets as well as on 175mg of Amitriptalyline. I have constant migraine like pain which hasnt gone away since june and makes me feel like i am going insane sometimes. I have alot of pain in most of my joints and now my hands are getting really bad with the shakes, i cant even tie my own shoe laces or cut up my own dinner.

 I feel like i am a 26 year old trapped in a 90 year olds body : (

 Brujah

 

Hi Brujah, I know that feeling, you just have to try to get on with living as best you can do not let the symtopms of fibro rule your life I know that is hard to do sometimes but we all have to give it a try.

We all cope in our different ways I do not know how to private message on here so I can email you, I added a website in my last post but it was edited out.

I try not to let it rule my life, it did for a long time i laid in bed and became more and more depressed but recently i have tried to go outside more.

 I dont know how to Private Message as i only started using this last night,

 

Brujah
 

hi brujah and welllcome to our little homw, am sorry u too have this life changing illness, i'm 54 and been dignosed in04 but goes back many years before, dont think age come to it as it can anyone at any age, mine came uo due to RA and wrong med for many years and also a very bad flue, but even to this day they not sure which is which, i had very very active life but all changed, i too have many many bad days but end of day have no chice but to get on with. i live with my 28 yr daughter, apart from that have no family or friends so its a very painfull and loanly life, but what's tha choice,anyway pls keep in touch andtake care.

 

Ellie

hello ive just joined and fibromyalga caught my eye ive got a daughter of 29 diagnosed with it she has been ill since she was 19years the drs diagnosed irritable bowel and depression in the early days .she has had several examinations eg camera down her throat and a camera examination elsewhere i cant find the correct word at present she has been given amitypilene also to numb nerve endings in the brain. just last year she started taking a sort of fit were she would blink a lot and her heart would beat very fast these are suppose to be the muscles from around the heart contracting.also she has had a brain scan . she gets very depressed with this condition and feels very isolated as she is an artist and she lives on benefits which i may add she does not get any dissability living allowance.both her and myself think that drs do not fully comprehend this illness and that half the time she is ignored when she attends them .she has joined the jym and found it very helpful to blow of some steam but when she is having a good day can overdo it i would love to hear ur reply

It's awful hearing there are so many people in the Uk with Fibro who are really struggling despite being on strong painkillers. So few doctors in this country understand the condition and how to treat it!

I know that I'm so lucky that my family enabled me to see Prof Davies, the Fibro specialist based at Guys (on the NHS), privately. Otherwise, I would still be in agony like so many of you.

 If your GP or pain management doctor is willing to work with you, you may get some ideas of treatments options to discuss with them from the FibroAction website - it's on the helpline list. My Fibro was/is severe, but I still manage to control it with minimal analgesics now thanks to more efficient meds.

Amitriptylene can cause heart palpitations and many good doctors will not prescribe it to anyone with any cardiac issues. Your daughter may want to raise this with her cardiologist or GP and possibly get a second opinion if they blow her off.

 I'm 27 by the way.

hi poppy sorry not been round for bit, but  u know what its like with this damn  illness, cant do what we want as n whn, anyway just   thought drop u line to c how u r, i feel like walking dead, pain n pain n more pain, been put on some iron med which has taken little energy i had away, *** knows why, anyway hope u okish, keep in touch when we can.

 

Ellie