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The UKFibromyalgia Forums • View topic - Hi, I'm new.



Hi, I'm new.

Introduce yourself and find fellow sufferers in your area or who share the same interests.

Moderators: perseus, *Lisa*, FluppyPuffy

Hi, I'm new.

Postby Elle_ » Sat Mar 27, 2010 5:39 pm

Hi!
I've been reading these forums for a while, but this is my first posting. I was diagnosed with fibro officially 9 months ago, but had been sufferering for years before then. My rheumatologist offered no help or support, and just booked me in for an appointment in 6 months.

I am in so much pain. I wake up dizzy, I have headaches, my back, legs, hips, ankles, everywhere hurts...And mentally, I'm suffering too. I hate being on my own, I worry disproportionally, and cry. I can't look after myself, I can't lift anything up, I can't answer the phone...I feel anxious and I'm really not coping.

I'm 19, but my parents disowned me when they discovered I was ill. I can't work, and am on ESA, which I got easily. I'm constantly refused DLA though, they have ignored my request to take it to tribunal. I live with my partner, but he is at uni, and doesn't have time or deserve to be looking after me. The doctors are always full, I can't get up at 8am to get an appointment so I never get one, and the receptionist is horrible. I wrote to them, and they said to have a telephone appointment, but I'm so scared of the phone...

The hospital have just written me off. I emailed and was given a nurses address, I explained everything, and emailed twice in follow up, to get no response.

Everyone keeps telling me to keep trying, and get the attention I deserve, and keep going and just don't have the energy or willpower anymore. I just want to cry.
:needhug:
Elle_
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Re: Hi, I'm new.

Postby red dragon » Sat Mar 27, 2010 6:50 pm

:hugs: you poor thing,it is really scary wen you first get a diagnosis .but it sounds as though you need to get a new gp,as this one doesnn
seem to care.ask your oh to help you find a doctor who is sympathetic to your ilness.
i know its hard but speak to your oh and ezplain how you feel,if he loves you he will understand and try and help.
the only thing left to say is keep smiling and you will get better days.
hope this helps . :welcome:
red dragon
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Re: Hi, I'm new.

Postby budda » Sat Mar 27, 2010 7:05 pm

:wave: Hi Elle,
So sorry to hear you have FM, yes it is scary when you get told, but you will have plenty good listeners on the forum, I would do exactly what red dragon said, and change your GP. :hugs:
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budda
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Re: Hi, I'm new.

Postby Jenny Wren » Sat Mar 27, 2010 9:37 pm

Hi Elle - here's a big {{HUG}} :hugs:

Have you got a fibro support group in your area? They ma have someone who can suggest a better dr's practice and maybe even an advocacy service that can help with the DLA.
Jenny Wren
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Re: Hi, I'm new.

Postby shazq » Sun Mar 28, 2010 9:39 am

:welcome: to the forum.
You should change your GP, getting a GP on your side makes all the difference. :wave:
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.
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shazq
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Re: Hi, I'm new.

Postby kphillips » Sun Mar 28, 2010 4:59 pm

Sorry to here you have FM. I have had it unconfurmed for years. UNTIL friday.......
Same problems Dr. not interested, all in the head, cannot have so many things wrong with you at the same time.......
Please go see a NEW Dr. and write down how you feel, i had three A5 pages full of HOW I FEEL, and the Dr. made a 20 min. appointment for me, instead of the 10 min. Even went on the internet with her, and she made the hospital appointment. There are good Dr. out there, but you have to find them. The DLA will only give you DLA if your Dr. says you need it. So find your Dr.
Good luck! :needhug:
kphillips
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Re: Hi, I'm new.

Postby Helen Marie » Mon Mar 29, 2010 8:23 pm

Hi and welcome :wave:

It seems that its a problem for you to speak up for yourself and get the attention and help you need and deserve, if that is the case, have you thought about contacting an advocacy agency?

Maybe they can arrange dealings with the medical profession on your behalf?

Sorry if i am barking up the wrong tree here, it just seems that maybe you need a helping hand and charitable advocacy agencies provide a voice for people.

Hope this helps

:hugs:
after 9 years of FM .... you'd think I would have the hang of it by now :s
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