Newly Diagnosed

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Newly Diagnosed

Postby Lexilou » Tue May 05, 2015 7:47 pm

Hello
I was diagnosed with Fibromyalgia about 6 weeks. Apart from being given Amytriptyn I have just been left to get on with. I feel lost & don't know where to turn. I have told my husband & my boss but they just looked at me blankly. Mornings are really bad at the moment for fatigue and brain fog. I actually felt frightened at work today cause I just had no idea what I was supposed to be doing. How do I deal with this? Any tips or advice please. One frightened lady. :(
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Re: Newly Diagnosed

Postby Fibromummy2015 » Tue May 05, 2015 7:55 pm

I have been diagnosed 3 years and still feel lost my gp just hands me paracetamol and amitriptaline and tells me I'll manage
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Re: Newly Diagnosed

Postby Lexilou » Tue May 05, 2015 8:08 pm

Oh dear! Not holding out much hope then..
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Re: Newly Diagnosed

Postby FibroAng » Tue May 05, 2015 8:12 pm

Hi, I have been dx'ed for 3 years now with M.E, I spent over a year in bed b4 going to dr's who dx'ed me, I too fell like I have been left to rot, Now dr thinks I got Fibro and I have my PIP assessment tomorrow! Dr's and in fact everyone has no clue how we feel day in and day out and I think they never will, unless they are unlucky enough to suffer from these awful conditions. Keep your head up, we all know too well how you feel. I had to give up my job too, but the way I see it my health is more important then any job will ever be. You just have to do what is best for YOU. Hugs x
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Re: Newly Diagnosed

Postby JEarl » Tue May 05, 2015 9:05 pm

Hi, I have found a lot of doctors don't actually believe in fibro. Try to find one that does and even point out about what it says on the NHS site. They have no choice but to listen to you when you point out that it's on there. I am awaiting to be diagnosed as having lots of other tests to rule things out but my specialist believes that I do have it but along with arthritis. Don't give up hope, if need be insist on being sent to pain management. I hope this helps and I also hope you get there in the end. I'm lucky in a way that my mum has been diagnosed with it so she knows how I feel and she helps with the doctors. Good luck x
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Re: Newly Diagnosed

Postby Zia2014 » Wed May 06, 2015 11:15 am

I think it's pretty common to be 'left to get on with it' but I wasn't happy with that. I researched what facilities were available locally, found a pain clinic at my hospital and told my GP I wanted a referral as at the very least they were gatekeepers for stuff like tai chi, hydrotherapy etc, plus they offer a course in chronic pain.

No one should be left to get on with it, but unfortunately a lot of GPs either don't know fibro or don't know what to do next. We have to take that control and research it ourselves if we have a GP like that.

Where in the country do you live? There is probably someone near you who could help. There are also support groups and I really would suggest you contact your local one as they will know loads about what facilities are on near you.

Being newly diagnosed is frightening but there is help out there - you just need to find it! At the very least you have found us :)
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Re: Newly Diagnosed

Postby Happy Girl » Wed May 06, 2015 1:47 pm

Don't give up, Lexilou. Just keep asking to see people until you get the right answer. I started off by seeing a pain specialist, followed by an orthopaedic specialist who than reffered me on to a rheumatologist. After a few visits and tests he then diagnosed fibro. He go me into a pain management session and physio. The physio gave me exercises as long as my arm which do help but I can't manage every day. She also sent me for hydrotherapy for 6 sessions. It was lovely whilst I was in the water but I froze when I came out and couldn't even dress myself, fortunately my husband was there to help. I have been taught not to give up anything you enjoy doing but to really pace yourself. I have lost my job which now I am really pleased about add there was a lot of stress attached. I use a mobility scooter for shopping, anywhere we need to get to in a hurry and for days out; that way I still have energy for other things. I get through loads of note books writing down everything I have to try and remember (it doesn't always work) and it lives on the kitchen table. My tablets are in a weekly organiser and I have alarms sets (that doesn't always work either. The important thing is to keep positive and don't overdo anything. Hope this helps you. Hugs x
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Re: Newly Diagnosed

Postby Lexilou » Thu May 07, 2015 6:19 pm

Thank you everyone for your lovely replies & support. I guess it is something I just have to get used to. I am fortunate in the fact that mine is not as severe as others & I can still work. I will use this forum for help & advice. Thank you again :-D x
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