Aaargh!!

[Gazza-666]

There is one major thing I would like to see and that's for all GP'S and HOSPITALS to know and understand about FIBROMYALGIA as it is a monster within you poor sufferers, I know there are some that try but they just patronise and that's not helpfully at all.

There rant over sorry to all you lovely purple butterflies...

Regards

Garry x

[BlueMermaid3]

Hi Garry

What a very beautiful term "purple butterflies" I really love that ☺

I was diagnosed in 1980 with Fibro and ME.

It seems to me that there is still almost as much ignorance about Fibro as there was 36 years ago.

My GP told me that it is not seen by the medical profession as a "sexy" condition. That is a direct quote from her.

She attended a Fibro conference and said that there is no money for research into the illness.

This obviously means we are just left to suffer, with some of us in severe chronic pain 24/7.

Thank you for the lovely sentiment.

Lu xx

[Hidden in reply to BlueMermaid3]

My turn for a rant Lu-- One of my pet hates as a Nurse was the "patients" who self inflict illness and hey presto there is a lovely remedy to ease their suffering- WHAT! I always felt giving them an easy way out was not a cure but encouraging more of the same plus damaging their vital organs and then--- getting on the transplant list.. I might seem a bit mean but I then saw others suffer and they got little or nothing to help them-- just shows how research is not shared equally. Patients having had a cancer treatment and then standing outside the main doors smoking a fag always got the hairs on the back of my neck going, they were always offered patch help, and those with drink problems having contraban passed thru the toilet window to them by "Mates" I hope you get where I.m coming from, I,d sometimes like one of those beds and be given an IV infusion to get my pain under control, a physio on hand to help me get mobile again and transport home on discharge with regular follow up appt. with a Consultant every 6 months!! Rant Over..

[Robbie138 in reply to Hidden]

Here here Hidden !!!

[Trikki]

Purple butterflies.....what a wonderful name....I am with Blue on this....I was diagnosed seems like a 100 years ago (when I was 43 am now 69!) and nothing has changed in that time.....Doesn't it make us all feel insignificant?????? xx

[Janet28]

Oh wouldn't we all Garry, it would be a miracle.. I like being a purple butterfly That's cheered me up. Thanx

If you go to the Mother site fmauk.org you can request a Information pack to be sent to your GP It is free and I know its not much but it is something and every little thing helps.

I think all doctors and specialists need training in how to diagnose and treat patients with Fibro, as you say the majority of them can seem quite patronizing. I think there is a lot more research being done in America and its good to look on You tube for new information on research. Ella Vine has just done a really good interview on Ben TV on Fibromyalgia which is really good & can be found easily on google. You will find this very interesting.

Peace, luv n light

Jan x

[bluebell99]

Hi

I do wish everyone, not just the medical profession knew what fibro was all about. If I get asked and say fibro all I get is "What's that then?" Then when you try to explain, their eyes glaze over because it isn't contagious, doesn't kill you, is not "exotic" and seems to them to be an excuse to be lazy.

Kay

[TheAuthor]

Hi my friend,

I think you are absolutely right! I also think it needs to spread to more than just Fibro as well. Conditions such as MS or Cystic Fibrosis spring to mind? I want to sincerely wish you all the best of luck, and please take care of yourself.

All my hopes and dreams for you

Ken

[Hel52]

Bless you just rant away it's almost feels nothing has changed much not sure what it is with this country when it come to fibromyalgia more and more people have it.DWP are stone walling everyone out of ESA and PLP making it very hard so ranting is the best thing we are flapping out purple butterfly wings in surport of your frustration. Hope you have a good day.

Regards Helen