So I chased up with UCL the referral my GP made in May. They'd basically sat on it. But because I called they've given me an appointment to see the Fibro Syndrome Service in July. It's a one stop shop apparently so I'm really pleased. I hope I will get a new diagnosis: FM or PMR, and treatment. This is great because I'm a bit depressed about my quandary with the Alexander Technique and Meditation.
Has anyone been to the unit and if so what was your experience?
Hi Hidden I have never heard of this kind of service before I would be interested to hear what they do too. Please let us know how you get on it sounds interesting xx
Mo xx
Neither had I, but my new GP practise has been amazing. He said based on my blood tests it's possible I don't have FM but do have PMR. To get it all checked properly he referred me. Will let you all know how I get on.
It's another world in London 
Hello Hidden
Are you talking about the University College Hospital in London?
I was supposed to be being referred there, but as I am under the Pain Clinic at the moment I think that they are holding off on the referral.
I have heard the University College Hospital has a Fibro Unit there and the Specialist is really good.
Good luck. I am sure we would all love to know how you get on.
Take care of yourself
Lu xx
Yes that's the one. Fingers crossed it's useful.
Hi,I've got an appointment at Guy's hospital London next week,sounds similar.I heard about it,mentioned it to my gp,she referred me,long wait,hopefully be worth it.
You have a confirmed appointment next week? I thought the Fibromyalgia Clinic at Guy's aren't seeing any new patients as they don't have a psychologist. I was supposed to be seen last week but that was moved to August and then cancelled to an undetermined date. 
And my referral was made from December last year? Can I ask where you are based?
Good Luck
If you have PMR please be aware not everyone has raised inflammation levels in their blood .
It took me 4 years to be diagnosed and then it was self diagnosed .
The only way they can confirm it is PMR is a trial of Prednisolone and how well you respond to that.
Rose
xxx
Hi Rose54 did you take pred? how did it go?
I didn't know that about PMR, thanks it's very helpful. Though I am scared to take steroids.
Hi
As the only treatment is preds yes at least taking them Im able to function as long as very careful.
I started on 15 in August 2015 result was 4 hours later able to shower myself and walk up the stairs.
I had managed to work full time and reduce to 8 at Easter this year and then had a flare so had to go back to 15 again .
Am at present off work but going for Bowe Therapy Thursday as I feel some of my problems are myoscopical pain ,
Sorry about the spelling
Yes have weight gain
Hamster cheeks
Sleepless nights
Fatigue
Brain Fog
High Blood Pressure
High Sugar Levels
But Im still able to do things
Have learnt to say no to others and put myself first
Have to as only way I can survive
Let me know how things go
Rose
xxx
Hi Hidden I hope it all goes well for you and you get a diagnosis so you can finally accept things. This in itself takes a lot of time and will help you from being in quandary.
Good luck my friend
So I have an appointment with a rhumatologist tomorrow morning at 9am at a local hospital. I'm convinced I have Fibromyalgia so hopefully I will get a diagnosis one way or another. I'm interested in the Fibro Service though. I notice there is one at Guys hospital and one at Royal London
Hi Hidden
I want to sincerely wish you all the best of luck with your appointment and please take care of yourself my friend.
All my hopes and dreams for you
Ken
I have just been referred to The Royal Free after requesting it from my GP. I asked for there as they have a special team that deal with FM,I have an app in September so we will see.
Although I have be diagnosed with FM and CF after being passed around to many consultants who did not know what was wrong. I understand they will re asses and then come up with a plan.
Sue
Good News!!!
Good news :)
Spare room tax - good news
