Hi, I've posted a few times on here for various help, but I've never introduced myself or my story, so here goes...

My name is Mandy, I'm 48 & live in Devon, UK. I was in a violent & abusive marriage & got quiet a few injuries over the years, my wrist was hyper-extended both forwards & backwards & my jaw was fractured, these 2 injuries were done in Oct 96. He was in the army & his friends got fed up so 'sorted it out their way', while he was confined to the camp med centre they helped me move to the other end of the country (a couple of years later he went to prison for manslaughter, at least I left with only a disabiliy). The pain continued & over a couple of months increased. I had a really useless doctor to start with, he just kept giving me co-codamol for the pain, which wasn't helping. I changed doctors & got referred to a hospital for tests etc, (saw about 8 different 'experts' with no help). In 98 I saw my 1st pain specialist & was diagnosed with RSD. He did all the usual blocks even traumatic physio, but because it'd been left so long he couldn't do much. By this time my hand had clawed badly & pretty much set. They put me on morphine for the pain, but the prescription got made up wrong, the dose I was supposed to have in the full day was given as each dose, so I ended up with a morphine overdose. I never went back to them again & now have problems any drugs which are morphine based.

I got referred to a different hospital & pain clinic. He put me on gabapentin & oral Ketamine. It took a while to get the doses right but in the end I was on 400mg of gabapentin, 4 times a day & 5mils of ketamine, 5 times a day. I could just about tolerate the side effects from these levels. No physiotherapist would treat me cos I had so much pain still & my hand was so badly clawed. My daughter & I eventually got the hand to sit normal'ish by ourselves, I had to wear alot of braces & straps to do it & I must admit I went to hell & back with the pain. There my treatment stayed till I moved Nov 2010.

The new pain clinic I was at to start with was awful, my daughter & I knew more about RSD than he did, he acted like a drug dealer & made me both uncomfortable in his company & an addict, rather than someone who is ill & in need of his help. I had to come down off my ketamine with just my daughters help. I was having 5 doses a day of 5ml at a time. I had about 300ml left to do the come down in. It was not easy, my pain increased, I had no end of flare ups & my RSD started to spread. I'm with a different pain clinic now in Exeter, it's an a long way to travel to see them, but at least their good. I'm now on pregabalin 150mg twice daily & have lidocaine patches. I see a physio once a month & the consultant every 3 months. This may not sound good treatment to some, but here in the UK it is, it's a lot more than I had before as I only saw a consultant once every 6 months.

I now have RSD in my left hand/arm & in my left foot/knee & it's still spreading, I expect it'll get into the jaw & ribs, as that's the side that was broken & gives me pain from time to time still. I'm still in pain all the time but after the come down off ketamine I really don't want too many drugs, what I'm on just about takes the edge off it. I've started getting leg ulcers on top of everything else, which now need treatment too. I don't think I'd get through the day if it wasn't for the help & support of my daughter. If anyone has every deserved being called an angel, she does. The care she gives me daily is a very precious gift. She's just got engaged recently to a lovely lad who she's been dating for 4 years, he's a personal trainer & works with people who have cancer, MS or other bad medical conditions. He's been helping me, giving me exercises to do & I already think of him as my son, rather than son in law to be. I'm so happy for them both to have each other.

That's my story, pretty much the same as everyone's, full of pain, tears & changing doctors. I chose cinders999 because 999 is our emergency number in the UK, & cinders because one day I hope someone will find a cure for RSD & then 'I will go to the ball' or rather join the real world again! Sorry if I rattled on too much, but thanks for listening, I really needed it today, the pain is so bad I've typed most of this through tears.