Its nice to find I am not alone

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Its nice to find I am not alone

Postby chartan4 » Fri Aug 16, 2013 4:55 pm

I was finally diagnosed last week with Joint Hypermobility Syndrome and Fibromyalgia. I was pleased that after 3 long years of pain I finally had a diagnosis but then it hit me yesterday that this is now my life :( . I am having a really bad week and felt soooo dismissed by my GP when he said there wasn't a magic wand to make it better and that I just had to cope with it. I am waiting to see the pain clinic but it was them who referred me to spinal after not being able to do anything for me. I had my spinal surgery in February and was excited at the prospect of being the old me again. I had put everything down to my neck...I'm putting on weight because I'm not very mobile because of my neck, I'm in pain all over because I cant sleep because of my neck, I'm forgetful and cant focus because of the medication I take for my neck etc I think you get the picture :-) Well my neck is fantastic now it has 2 new discs in it so what about the rest of me??? I finally get a diagnosis and now I dont know where to turn or who to ask for help :cry: I feel like Rapunzal trapped in her tower. I have 3 children, the youngest is 7, and I can cope with a certain amount of pain in order to function to some degree so that I can still be Mum however, I am not coping with bouts of intense pain that can go on for days or weeks at a time. Will I ever get this awful pain under control and be able to have it on a managable level? I take a cocktail of meds and my GP has said I can be pain free but then I will be out of it and asleep all the time but thats not living thats exsisting and I dont want to exsist in a world where I cant even string a sentence together or where my children are asking if dinner is ready only to find I've put something in the oven and then hours later realised it would help if I turned it on. I just need to know that this can be managed and that I can get help and where to find that help.
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Re: Its nice to find I am not alone

Postby fibro-lu » Fri Aug 16, 2013 6:58 pm

:wave: hi chartan4 and welcome

you definitely found the right place

there's lots of information here and lots of people who understand what you are going through

FMS effects everyone different and there are lots of different symptoms, you might have some of them but not others at all

don't try to take it in all at once, too overwhelming

to start with search on top of this page for:

"one to show the non believer" and/or "stages of grief"

(go to page 1 and stroll down. think they are both in "Living with Fibromyalgia)

this should bring you to a page with lots of notes to make you better understand what is going on

and of course ask any questions, there is usually someone hanging about who answers
all the best :cow-wave: Lu
Mind over Matter: in mind I'm Wonderwoman - in matter, well, - don't mind, doesn't matter
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Re: Its nice to find I am not alone

Postby denys » Fri Aug 16, 2013 10:45 pm

Hi and :welcome: to the forum :cow-wave: :cow-wave:
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Re: Its nice to find I am not alone

Postby chartan4 » Sat Aug 17, 2013 1:42 pm

Hi and thank you Fibrolu and Denys :-) I will have a look at the bits you have suggested xxx I am trying to get my self knowledgable on fibro as suggested by the rheumy I saw its just there is soooo much info it is all a bit overwhelming and I have a head like a seive at the moment :-? I do appreciate any suggestions on coping and managing though :-) xxxx
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Re: Its nice to find I am not alone

Postby denys » Sat Aug 17, 2013 1:53 pm

Read through the posts and if you have specific questions then ask away and we will try to answer them as they come up, there is a lot of information regarding fibro and some of it wont be relevant or correct and it can take a while to sort it all out :-D :-D
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