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Fibromyalgia Action UK

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Fibromyalgia is for me

40 Replies

Fibromyalgia for me is horrible stiffness and pain to my feet, legs , arms and fingers . Also headache , dry mouth and eyes Horrible tinnitus . Fibromyalgia fog depression and bowl syndrome so yes iv got the full works I’m hoping that the Parliament debates will lead to a full recondition of the disease as a disability

40 Replies
Mandypandy1969 profile image
Mandypandy1969

me too sweetie. xx

in reply to Mandypandy1969

Wow you got it the same x

WF2k profile image
WF2k

Same, I'm 44 but feel double my age. I've had health problems since I was a kid that has gotten worse over time.

Mandypandy1969 profile image
Mandypandy1969 in reply to WF2k

me too. xx

WF2k profile image
WF2k in reply to Mandypandy1969

*hugs*

in reply to WF2k

Yea it’s hard at times but plug on

WF2k profile image
WF2k in reply to

Yup!

in reply to WF2k

Thank you x

in reply to Mandypandy1969

Yep you know what it is x

in reply to WF2k

We all have to get through these horrible things some how I feel for you xx

in reply to WF2k

Yea that’s the way it happens

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee

jugzy, can I ask what would fibro being fully recognised as a disability mean to you? How would you see it changing things?

Dizzytwo profile image
DizzytwoModerator in reply to desquinn

Good question.

in reply to Dizzytwo

How do I lock post please Erne x

WF2k profile image
WF2k in reply to

Not sure if it'll work this way, not tried it, edit your post and look underneath for two options, one of them should be to make the post private.

in reply to desquinn

Well two years ago I mad a good friend withMS she had cannabis’s. Oil diagnosed ‘ I try it and it will help with my pain so we may get that , But most being recognised means all our friends will get more help from the DWP and be able to get diagnosed at last Only Cancer and MS has been Accepted full so far’ another debate 24 January x

Dizzytwo profile image
DizzytwoModerator

Hi Juggzy you may wish to lock your post. This helps to keep what you write private to this community only. It also keeps the privacy of the members who reply. This is the link if you would like to lock this and any future posts.

healthunlocked.com/fibromya...

I hope you have a pleasant weekend. :)

in reply to Dizzytwo

Ok thank you

in reply to Dizzytwo

You too thank you xx

YASMINTINA profile image
YASMINTINAFMA UK Volunteer

Yes indeed a lot of your symptoms Tick the boxes for most of us unfortunately, everyday we try and find ways to live our lives as comfortable as we can. think after this weeks debate we are finally getting somewhere now with Fibro being recognised as a disability. I’m still amazed reading doctors are still dismissive of Fibro which has not help our cause along the way. Take care .

in reply to YASMINTINA

Yes this reason is mostly because a lot of people are jumping on the Band wagon There is a test but it’s American

rosie-2015 profile image
rosie-2015

Hi, I know you didn't ask me, but to have fibromyalgia recognised as a disability would be a large emotional weight lifted from my shoulders, I know it would still take a long time for the public as well as family and loved one's to understand it and it wouldn't be a a big physical change, I don't even believe it will make a lot of difference with pip or esa because it isn't the illnesses but how they affect us that get the point's. Sorry for butting in and the long post, I don't even know if I've explained myself properly, that's one of my biggest problems

Rosie xx 😊

in reply to rosie-2015

Yes that’s how it get you Please try and pull through this My family I fed up with me too Sad I sent it but you got you friends here so keep in touch x

Dizzytwo profile image
DizzytwoModerator in reply to rosie-2015

You explained yourself very well Rosie, and I understand what you mean. I think desquinn asked a very valid and interesting question. 🤗🤗

in reply to Dizzytwo

Another Debate 24 th January so ets see how this one goes x

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply to

Hi Hidden the debate I believe your referring to on the 24 the has nothing to do with fibromyalgia. It's for me

in reply to desquinn

Ok fine

rosie-2015 profile image
rosie-2015 in reply to Dizzytwo

Thanks, I'm getting so bad at explaining myself, that is one of the things I hate most about myself now, I'm not blaming the fibro although anxiety is a big part of it but as you know I have agoraphobia like yourself and it's not just outside that makes me panic just talking on a forum can do it as well but if it's something I feel strongly about I will really try, I hope you're having as pain free a day as possible

Gentle hugs

Rosie xx 😘

Shana75 profile image
Shana75 in reply to rosie-2015

Bless you Rosie, you explained yourself perfectly 🙂

in reply to Shana75

Hello I hope you get diagnosed it can take a while It took me five years Good luck with everything x

Shana75 profile image
Shana75 in reply to

Hi Juggzy, Thank you so much, I originally went to my doctors yrs ago when i lived in London cos apart from the everyday pains I have, I'd reached my limit when i started having severe pain in my hip, elbow and knee, i had loads of blood tests that came back fine apart from my vitamin D was extremely low, I was then referred to the rheumatologist but by that point I wasn't feeling so bad and I stupidly come to the conclusion that what I don't know didn't hurt me, ignorance is bliss?? 🙄 but I have noticed new symptoms which has led me to the Doctors, they want to start from the beginning so having blood done all over again 🙄 currently having a flare up, had to take a week off of work and now all I do is work then go straight to bed cos I feel exhausted from the pain and just moving. my family must be fed up of hearing me moan about all the different pain I have. What's your story juggzy? How long have you had fibro and affect does it have on you?

in reply to Shana75

15 years but I got miss die nosed at first with Rls THEN I GOT rediegnosed with fibromyalgia it was the American test I took but even that was difficult I hope you push it through so hard for you xxx

rosie-2015 profile image
rosie-2015 in reply to Shana75

Thanks for saying that, I appreciate it, I used to be good at explaining myself when I was younger but I think it's my anxiety that causes me to doubt myself. I hope you're having as pain free a day as possible

Gentle hugs Rosie xx 😘

in reply to rosie-2015

Thank you Rosie I been hospital all day That a normal thing for me .

in reply to rosie-2015

Rosie every you are saying it all comes with fibro I get all these symptoms my self xx

louemrog profile image
louemrog

I hear ya... even just people not giving me that funny look, the “but you LOOK ok” one would be a start.. xxx

in reply to louemrog

That’s one thing you have to used to x

It will be soon trust me 24th another density Erny

Shana75 profile image
Shana75

Hi Juggzy me again, I just wrote you a message then I found this post from you. Do you get your headaches in your eyes? How bad does your fibro fog get? That's one of things that really upsets me, is not remembering things and at times not being able to even string a sentence together, it's horrible.

As for Parliment recognising fibro as a disability, I think unless there can be some way of fibro being actually medically tested, they're gonna find it hard. There will be so many people that will claim to have fibro just to get benefits, it's being done all the time now, it's so wrong cos clearly there are many people that are really suffering with fibro on a day to day basis and it has such a wide range affect on different people's lives.

I find it hard to explain myself properly so I hope I've made sense on my little rant.

in reply to Shana75

All the symptoms you said yes I get them When I got diagnosed for fibro it took along time In the end I took the American test And after that there was sneering with special doctors Then I waited two months to get it in writing the probing oaths some people get a pain I. There body and they are shouting fibro Iff you got full blown fibro you will know it

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