I am getting help, but still quite mad. - Fibromyalgia Acti...

Fibromyalgia Action UK
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I am getting help, but still quite mad.

jazher
jazher

What i am mad about is that when i was just dx with fibro i couldnt get dla and only had my gp to rely on. Well now i have multiple dx with one being ME and i have so much help and support now. I have a lady comming to help with dla forms, i have a physiotherapsit and allsorts.

Fibro is just as bad as ME but there just deosnt seem to be all that help with it.

Sorry just had to say it as even though i am getting help its only because of my ME and not fibro.

hugs, kel xxxx

17 Replies
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Hidden
Hidden

yeah that is all wrong isnt it why is that why are we not listened to and taken seroisly ? i am by my GP she is fantastic she really is so i am luckier than some but i am still having to apply for dla in may bet i wont get it but i will jus keep re applying until we are all heard we must stand up well creak up and shout out our case !!lol that felt good perhaps i should get a box to stand on love to you diddle x

jazher
jazher
in reply to Hidden

Haha, you would be good standing on a box, i could just imagine you standing on it shouting for us lol xxxx

Hidden
Hidden

Ask Butterfly what she thinks about that Kel. She has Sjorgrens and wants THAT to be on the top of her medical records, not fibro. As we all know, those people at the DLA place don't seem to believe fibro exists - apart from in our heads maybe.

Speak soon,

hugs Sue xxx

jazher
jazher
in reply to Hidden

Its disgusting sue isnt it, when my family found out i had ME, they then said well you will proberbly get dla now,

hugs, kel xxx

Hidden
Hidden
in reply to jazher

It never fails to amaze me Kel! xxx

HiddenThis reply has been deleted
jazher
jazher
in reply to Hidden

I keep quite too as i cant be bothered with the comments.

It was quite good jules, she is sorting things out for whicch is more than anyone has done for me so far. :)

thanx jules hugs back, kel xxx

Hidden
Hidden
in reply to jazher

:)Like Kel:) x

jazher
jazher
in reply to Hidden

Sue i have been on here since 8 am, i have done nothing and my andrew is getting in in an hour lol.

I will just have to get the ironing board out to make it look like i have done something lol.

This site is such a bad influence on me lol xxxx

By the way your smiley faces didnt work :P

xxxx

Hidden
Hidden
in reply to jazher

I know they didn't work Kel lol, trust you to draw attention to it! LOL I don't know what I did wrong. :)

I've got ironing to do as well, I'll send it up to you love xxx

jazher
jazher
in reply to Hidden

:( dont like :(

haha

I suppose i wouldnt have to put yours away, thats the bit i hate lol.

xxxxxxx

hi all,just joined this site, i also have just been turned down for dla ,ive got independent person coming to help me fill out forms, am so fed up my doc doesnt seem like hes bothered and am making it all up :( i dont remember in the last 5 months one good day, sometimes i feel so alone

jazher
jazher
in reply to jamjam

Hi there jamjam,

its lovely to meet you. :)

I hope this site will help you not be alone, there are some fantastic people on here and some really good advice.

I have had fibro for years now and i only found this site in jan and it makes me feel better knowing there are people who care.

Good luck with the forms and we are always here. :)

hugs, kel xxx

Hidden
Hidden

Hi jamjam, welcome to the group.

Could you see a different GP in your practice? Maybe another would be more sympathetic.

Have a good look around here, there are some really interesting blogs and questions and answers.

You don't have to feel alone now...... :)

Hugs Sue xx

I have ME, not Fibromylgia, but run a support group for both conditions. My experience has been that GPs recognise Fibromylgia more than ME and there is more support for Fibro sufferers. It must vary around the country, I suppose, but I've never had any support for my ME and lost my SDA three years ago.

Karen

HI karen,

I am sorry you dont get any support and especially no money, You are right, it must vary from county to county.

It seems like in cumbria that it is ME that people understand and fibro is unheard of.

Thats good you run support groups, there are no support groups near me unfortunatly as i would love to attend them.

take care, kel xxx

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