Have my diagnosis - how do i explain to people

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Have my diagnosis - how do i explain to people

Postby ames » Tue May 29, 2012 4:24 pm

Hi

My name is Amy from portsmouth I have 3 beautiful girls age 12.8.and 5 - this started after my third was born

I had my appointment with the rheumatologist today- and she confirms that I have been suffering with fibromyalgia along side the chronic neuropathic pain in my back ( nerve damage).

She is recommending servel different meds (cant remember what they were now ) and hydrotherapy to my Gp. Who I am seeing again next week. Really hope something helps

I am really worrying about my job - as I understand it I have a bad moment (a flare up ?) So am hoping it settles to a dull roar I normally feel..... But my job is on my feet all day - I love my job and I think that has kept me going ........ I feel in agony and exhaused after every shift I do then for days after - And I am worried I wont be able to continue - then comes the money worry!! I cant afford not to work!!

But now I officially know what is wrong - How do I explain it to people so its easy to understand.

Any views etc would be great -

Ames x
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Re: Have my diagnosis - how do i explain to people

Postby denys » Tue May 29, 2012 4:31 pm

Hi Ames, try printing off a copy of 'one for the nonbelievers' and the spoons theory plus look on the NHS website and print off information from there, these all explain things in easy to understand format

Dont worry to much about work while youre going through a flare, hopefully you'll settle down soon and then can look at your situation a little more calmly :hugs: :hugs:
Denys

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Re: Have my diagnosis - how do i explain to people

Postby FluppyPuffy » Tue May 29, 2012 4:38 pm

:wave: :wave: Amy, glad you've finally got a name for your problems :grouphug: :grouphug: :grouphug:

Trying to explain to a non~FMer what it is and how it affects you can be difficult as they don't tend to have anything like it in their experiences that it can be compared to.

There are a few things on here that might help with getting people to understand a little of what you're going thru. Here are linkys to a couple of them
viewtopic.php?f=2&t=4732&start=240
viewtopic.php?f=2&t=1761
Have a read thru them and see how they may help you.

Now you have a definite dx, you really need to let your employer know. FM is covered under the Equalities Act 2010, so once you have told your employer, they should then work with you to make reasonable adjustments to your job so it is as FM~suitable for you as it can be. Again when explaining, giving them some info may help. As well as the linkys above explaining about the more personal side of FM, this linky to NHS Choices about FM explains the clinical side of it, which may be helpful for your employer http://www.nhs.uk/Conditions/Fibromyalg ... ction.aspx

Anything else you want to know about, just ask and we'll see how we can help you with it :bear-dancing: :bear-dancing: :bear-dancing:
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Re: Have my diagnosis - how do i explain to people

Postby Ldyalb » Tue May 29, 2012 8:12 pm

Having tea soon so will be brief.

You can get help with work from the Job Centre (ask for a Disability Employment Advisor) and from organisations called Remploy and the Shaw Trust. They help advise you with disclosure etc.

You can also see an Occupational Therapist potentially through work to see about any adaptions which may be made. Fibro is covered as a disability under the Equality Act 2010 so your employer is legally required to make reasonable adjustments for you.

I found Hydrotherapy very useful, hopefully you will too. I'm a water baby and it was so relaxing. You may find things get easier for you when you've found meds which work well for you, and have perhaps adapted things at work to make life a bit easier.

I'd also invest in some good comfy work shoes with squishy in soles (or buy insoles for your current shoes) which will help your feet and legs when you're on your feet.
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