My never ending nightmare UPDATE

[Maddy1974]

So... Since I last wrote nothing has changed. Universal credit are still refusing to let me have a second assessment since they completely lied on the first one! And still haven't even addressed my complaint except with the comment "we do not know what to suggest" 😳

Well it seems now like my new GP has jumped on their band wagon!!! Where do I go from here....

So... 2005 diagonsed with Fibromylagia and been on medication for the best part of 14 years. Moved to a new doctors earlier this year... Went to see them on several different occasions with an ear infection, chronic pain, muscle weakness and collapsing due to legs giving way..... Each time told "it's your fibromylagia"....requested a referral to the pain management clinic at James Cook hospital.... Referral rejected (quote) "she has fibromylagia so there is nothing we can do"!!!! Ask the doc to do me a letter for uni as I'm eligible for a disability payment..... "we can't put you anything in writing as you don't have fibromylagia"....... Seriously????? Any suggestions????????????? 😳😳😳😳😳

[Hidden]

I had a similar experience recently renewing ESA-Have you got a written diagnosis from a medic to say you have fibro? I had a letter from a rheumatologist locally last year stating he doenst want to see me anymore there is nothing he can do-I wrote back stating clearly that there IS something he can do and that Hydrotherapy sessions have been my saviour for many years...I have now asked to see a guy in manchester who i used to see when I worked there, he will see me Jan2020-long wait but at least its not a No. About the benefit problem I got my local M.P involved, initially I wrote to Amber Rudd who was the Health minister, she asked my local Tory Boy to step in and help, he did with a quick result,,you will need proof on paper about your illlnessess that made you apply for U.C... Do you get PIP?

[Maddy1974 in reply to Hidden]

I currently get PIP for daily living allowance but now after 14 years my GP is refusing to put anything in writing that confirms a Fibro diagnosis..... So is that neglect??? I've had swollen glands and ear problems for about 5 years. I was recently rushed into hospital after collapsing. I'm paralysed from the waist down if I lay on my back. I have no feelings in my arms when I wake up in a morning..... All have been disregardedcaa part of Fibro and I've been given no help. I finally pushed them to refer me to James Cook Hospital in Middlesbrough and they rejected my referral and said "we can't help it's Fibro and there's no cure"...... What do you do??? Maybe my MP is my next option 🤷‍♀️

[Badbessie]

Who diagnosed you with fibromyalgia? Was it another GP or a consultant rheumatologist? You need a copy of your medical records to confirm diagnosis. However it seems strange that the hospital stated that they could not help you due to fibromyalgia and the Doctor states that you have not been diagnosed. Can you ring your old Doctor?

[Maddy1974 in reply to Badbessie]

Hi. I've just filled in the forms to request my medical records as I relocated in January this year. It was my local GP who diagnosed it and since then everything single problem I've gone to see my GP about they've just said "it's part of your Fibro"... That's 3 different towns and several different GP's 🤦‍♀️

[Linny55]

HI Maddy

I have an ESA Appeal coming up as no-one believes the pain....DWP say pain not a reason not to work and suggest a wheelchair, though I couldn't lift one never mind propel myself in one. Agree it's all too stressful on top of the pain and constant fatigue.

Note: I have just had RA flare up, and now possible fibromyalgia?? Cramps, burning pains in feet etc. I try to swim and walk to keep active but such an effort....then this goes against you because you make an effort. I think I will just have to remain firm, as if I apply for UK have to be available to work 35 hours, which would be counter productive to my health. Would love to have a job again too...…………. so trying not to get depressed now on top of everything else.

Keep smiling.

[Maddy1974]

Hi. Yes they told me to get a stick for emergencies to assist my walking but my elbows are so weak I can't hold myself up. I also have a shattered elbow and am awaiting a replacement elbow 🤦‍♀️ I despair I really do! I've lost 3 jobs so far due to being unreliable and not able to get to work some days it's so unbelievably frustrating!