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Fibromyalgia awareness

(5 Posts)
Leebee2202 Fri 10-Mar-17 21:42:24

I am 29 years old and i have 2 little girls. I was diagnosed with fibromyalgia 2 years ago, after suffering with the symptoms from the age of 17 when a car driver did a hit and run into me and my moped. Quite shortly afterwards my mum and 3 sisters soon followed suit with the same diagnosis, my older sister who has suffered since 18, and was only diagnosed last year at the age of 31.
We live in Chesterfield, Derbyshire, and are currently petitioning parliament to educate people and doctors better, and get fibromyalgia recognised as a disability and not just an impairment, so everyone with our illness can get the help and understanding they deserve. Our local mp has even written to secretary of state for health . We have researched this condition extensively since my diagnosis and My 2 girls were my first concern and have recently been in talks with a leading UK fibromyalgia professor who has said that my girls are at high risk of developing it themselves due to our family genetics.

I hope i could possibly gain your support

Thankyou on behalf of me
And my family xxxxxxx

WayfaringStranger Fri 10-Mar-17 22:20:07

I don't have fibromyalgia but I have a poanful condition. It is certainly covered by the Equality Act and I can't see that it's helpful to start naming conditions. Where it would end? I do feel that FMS needs better recognition and treatment but changing the legal definition in the EA is not going to do that.

FellOutOfBed2wice Fri 10-Mar-17 22:32:26

I think I have fibro but my GPs have been worse than useless. I think I developed it when I was 17 too after having glandular fever which took me down for a year. Since then I have had constant anemia which hasn't improved much with iron but has after blood transfusions. It always goes down again though. I'm 31 now so this has been going on for 14, nearly 15 years.

I have almost constant joint pain and tenderness on spots around my body, suffer from migraines (at times almost constant) and catch everything going. I have bouts of insomnia and take a lot of painkillers for my constant pain. I get a lot of UTIs. I bruise like a peach too. I've been tested for everything and have nothing definable but my GP more or less doesn't believe in fibro I think.

I'm a part time teacher with two daughters and find things a struggle, especially during the period September-March during cold season and with the lack of sunlight.

I'm convinced I have it and would love some proper help. I'm at a loss as to the next step.

Poshsausage Fri 10-Mar-17 22:37:01

I've had this for over a decade after medical drug overdose by the hospital and gp
Alkaline diet can ease my symptoms so i believe there is something in that and also infrared therapy has got me walking about again

gobbin Fri 10-Mar-17 23:51:41

I think the Equality Act as it stands works fine for long-term conditions. If you have an impairment that causes long term, substantial issues then you're covered by the Act and reasonable adjustments must be made in work etc should you require them. I have reasonable adjustments for my long-term condition. I don't consider the need to have the label 'disability' put on it, though, just the support of entitlements.

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