Hi Kathy! I am really happy to hear that things seem to be going well on this front and at least headed in the right direction.

I wanted to comment on the quoted part though. I can't tell you how many posts I have typed up saying exactly THIS about the pain. My life got so much better when I started to focus on getting the FUNCTION back so I could live my life and not on controlling the pain. I usually end up deleting and not posting though because when I read it back I always feel like I sound full of myself or something. But seriously...I was so bad that I was in a wheel chair and couldn't walk or stand at all. I got bounced around from one doc to the next and just kept getting worse until I switched docs and took control of things. I worked with the new doctor on the symptoms that were preventing me from functioning (dizziness, blurry vision, nausea, no sleep, poor balance, etc)...NOT on the pain. I took my life back and even though the pain is still really bad every day...now that I can DO things it's easier to focus on the other things in my life and the pain isn't my only focus.

So...as crazy at it sounds you should really try to follow this advice she gave you.

I am so happy that it seems like you are finally working with someone who really wants to help you and who LISTENS to you. This is all very positive...things will get better for you. Take care.

Hi everyone

Not sure how I feel on this but I got my letter from the SCS surgeon today. He's asked the pain nurse and doc to let him know if there's a reason I can't go immediately onto the list for a trial, so that suggests it's going to be quicker as long as my pain doc doesn't muck things up like usual.

However, in the letter he is very clear that he thinks I don't have CRPS so I am back to square one on the diagnosis front. Maybe it doesn't matter what the name of what I have is as long as I'm getting what I need but I identify with others through knowing what I have and feel very much like I'm just going back to "her with the backache" that everyone can downplay. "Oh I get backache, take two ibuprofen and that'll fix you" and all that. Why are pain docs so against diagnosing someone properly? All these courses I've been doing telling me that hunting for a diagnosis or cure will make me worse, all very well but when even the docs can't agree what's up with you how are you meant to stop worrying?

Oh well, SCS here we come. At least I don't have to worry about the risk of spread if it's literally laughable that I was diagnosed with CRPS. All eggs in the one basket now as I won't have a chance to go to Bath now if it's not CRPS and I'll be beggared if I'm going to go through the last 5 years all over again. It'd be interesting to know what the pain clinic actually DO as so far they've done nothing for me but wasted my time and in doing so lost me my job.

Wow Kathy, that's really well...insane. You must have a million questions! I would get a second opinion about the CRPS diagnosis though - it's too important to be something he just might be wrong about. It's sad, but there are too many docs who think they know and then turn out to be wrong.

On the other hand - that would be brilliant if you don't have it! I am so pleased for you. I know it doesn't take the pain you have away, but as you said, you don't have to panic about spread, operations, etc. I really hope he is right, and that the SCS works for you.

On the third hand I know just what to mean about the 'it's just a bad back, take two neurofen and stop whining' people - but you have to keep ignoring them, and I wouldn't tell them you don't have CRPS until you are absolutely sure - one doc can be wrong, two are more likely to be right, and people aren't very understanding when your diagnosis changes they don't think what it might be like for you!

I have fingers and toes kind of crossed lol that you get relief for your pain from the SCS, and that the CRPS really is just not there. That would give you back such a lot....

Bram.

Kathy I really hope you don't have this. US papers state that SCS's caure RSD at the incision site in 60% of sufferers (some sufferers say they are still better off) and some Dr's over there have stopped using them so it will be better if it is something else

Fingers crossed the Pain Program works for you!

I'm from the UK also and have recently attended London hospital to look into the 'COPE program'. I had an assessment like yours and was told that the course could help me. The only problem is that I live 3 and half hours away from London and would have to attend twice a week over a 6 week period so it would probably become really painful and tiring for me to manage, not to mention the financial implications.

Thankfully I went to the hospital yesterday and was told about a similar program that is run only 30 minutes away from my home which is great! I'm currently looking at getting a GP referral for it as it sounds really good... i'd meet others with chronic pain, be able to try acupuncture and nerve blocks if hospital staff thought they would work, try cognitive behavioural therapy etc. I'm just really surprised that no one has mentioned this program in the 6 years that I have had RSD until now!

I'll let you know how my program goes if I get the referral. I'm sure it cannot hurt and can only bring out positive things. I really struggle with pacing like you do and am currently off college because of it so hopefully it would really help with that.

Best of luck to you, glad you seem to be getting the help you need Let us know how you get on!