Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 06-17-2013, 12:51 PM #1
KathyUK KathyUK is offline
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Join Date: Feb 2013
Posts: 151
10 yr Member
KathyUK KathyUK is offline
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Join Date: Feb 2013
Posts: 151
10 yr Member
Default Pain management programme and DLA update

Hi everyone

Well I finally got my first appointment for the PMP, it was an assessment with the physiotherapist. I got sent a long questionaire to fill out and take with me, and from reading it I felt very angry and not positive at all about going. It was made up of rating scale type statements that you had to rate how much you agree with and a lot of it was loaded, if you get me. Lots of vague comments such as "I am getting on with the business of living despite the pain" - well surely if your heart's beating that's a yes lol. Another was "I am relieved to know I don't have to reduce my pain to do anything I want in life" - yeah right.

So I trundled along to this appointment really expecting the worst and am relieved to say it wasn't bad at all. For a start off the physio has trained in CRPS at Bath/The Min. She asked me if I'd thought about going there and I said I had, but that I didn't know if it would be worth the costs/cons of travelling away from home. She said that she thinks we should see how services here work for me then take it from there, but she suggested a consult there at least may be something to think about. She warned me how important it is to read up on CRPS and read up on good reliable sites. She says she is going to put some info/links together for me.

She asked me what I want from the programme and I said I didn't have any expectations and that there are areas I need to start controlling, such as my sleep, relaxation, pacing, and flare prevention/coping.

She suggested she sends me a sleep questionaire as it will help us assess my "sleep hygiene" and she hinted that it's likely I have an underlying sleep disorder due to the pain/stress. If that's the case they will work with me but also refer me on to a local sleep clinic.

Pacing came next and I talked about how I don't like to be seen as a bother and end up overdoing it, not because it's demanded of me by uncaring idiots (although there are people who do try to get me to do more than they know I can cope with, and I let it happen) but because I don't want to be a pain in the backside. I got told off a bit in a nice way and she said that she's going to work with me on this quite strictly - I felt at this point this would give me a fairly good excuse to use with people who want me to do too much lol.

I'm getting an appointment with the psychologist side of things soon which I expect to be the less useful part of it (and where those statements came from), so am not looking forward to that although they might help relaxation wise. Need to filter out the "it's all controllable in your head, think pretty things about pain and it will all disappear" mumbo jumbo.

The last thing she said was that I won't be starting the standard group PMP yet as she thinks I need more intensive one on one support before I'll be ready for it. She said it might be September's or it might even be May next year - I'm not really bothered as I prefer the idea of the personalised plan rather than one size fits all. She also asked me if I'd be interested in doing a course on the science of pain as she feels that knowing the exact in depth mechanisms gives you back a bit of control over how you feel about it.

So, I see her again on the 2nd I think. Just thought I'd keep you up to date. As a side note, we also received my DLA decision after all this time. The reason it had taken so long is that my consultant never wrote back to them. Thankfully my GP stepped in and saved the day, and I have been awarded higher rate mobility and middle rate care til March 2015. Gobsmacked as I was expecting to have to have a medical. When the letter came through the door I felt sick at the thought of it being a medical request. Very relieved and grateful to be honest.
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