Helloooo I'm back!
What a long day...
To cut a long story short, the guy I saw definitely knew his stuff and he works closely with Prof G on their pain managment programme. But it was def not
the hypermobility clinic.
He was a little confused as to why I was there, when I got the diagnosis 10 years ago though. I didn't know how to put it into words. It was kind of reassurance I needed mainly I guess because I've had SO many people try and suggest my pain is being caused by depression. Even so much so as that in September 2010, a local rheumy suggested I was weaned off of my pain meds immediately!
He pretty much disputed everything my local rheumy had said. I'm still very flexible etc. He said I'm doing very well at dealing with it though, and the fact that I'm still walking (albeit in constant pain with my stick) and had had 2 children was very good.
He's left my notes out for Prof G. Apparently that is how it is working at the moment. They are so over subscribed at the hypermobility clinic that they are passing people over to general rheumatology, then after an assessment there see where people want to take it. He said Prof G might be happy to put me on his waiting list to see him again, as there were questions he couldn't answer for me. He might also want to see me once a year. OR he might just speak to me on the telephone as he wouldn't need to examine me.
The best thing I got out of the appointment (other than my written report that I can shove down all my disbelievers throats) is a referral to a pain management course at UCLH just for hypermobility. I didn't know such a thing even existed. Even to meet some people in the same position will be awesome. Not thought about the logistics of getting there etc yet. Anyone else been on this course there?
Oh and most of all, I'm the happiest today that i have been in a long time. Which would not be understood by anyone else, considering I've been told there is nothing they can do for me, and no cure. But I am, I'm just happy. I've lived with this for years, I feel like I can finally take control of it, rather than letting it control me.
Sorry if I've missed anything out. Fog is getting to me today. x