Quote:
Originally Posted by mopo
I was diagnosed with crps five years ago and for the last 2 years, I've been checked out from getting current medical care by having my pcp fill my prescriptions. I just needed to step back from the 12 different doctors that had been involved with my care. Several specialists agreed with the diagnosis. I decided that I should go back to a pain specialist/neurologist to monitor my health and to find out about any new treatments. The new pm has some doubts that I have crps because many of the symptoms I previously showed were not visible at my appointment. When I began taking the 9 different meds that I currently take, most symptoms had some relief. Swelling went down, one could actually touch my legs with out me freaking out, color changes stopped, etc. The doctor wants to take me off 3 pain meds which I know will produce severe pain. He just doesn't think I'm in as much pain as I should be if I have crps. Once you began taking meds (Lyrica, Fentanyl, Percocet, tramadol, etc.), did some of your symptoms stop showing? Of course, I am wondering if I'm crazy because he doesn't believe me since he hasn't read other reports. Any similar experiences?
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Hi mopo
and welcome!
What symptoms did you have at the time your CRPS was diagnosed? That's the important thing (IMHO lol). I've into my third year of CRPS, and my symptoms have shown some changes. In my knee (where it started) I am not very skin-sensitive most of the time, even my toes (my worst area at the moment) can have times where they are not that sensitive, then later they can be astoundingly painful and I can't let anyone near them.
One of the characteristics of CRPS is that symptoms vary both from one individual to another, and from one time to another. Just because a symptom is not present at one time, doesn't mean it is not occurring at other times.
My advice would be to catalogue your symptoms daily in a diary, and take photos of any visible symptoms (preferably on your phone for easy access) so that you have a record you can show your docs at any time they seem to show doubt
. I take mine everywhere and have shown them to every treating doc - most are interested and are more willing to believe you when you say 'my leg was awful yesterday' when you can prove it... Of course the pain and ache etc are not visible, but if you keep a symptom diary they can see the course of your symptoms and will be more involved in your story. Weird but true
Your doc sounds like he maybe hasn't got that current a knowledge of CRPS. Might be worth taking him a copy of the latest info from a site like rsdhope.org or the main NHS site in the UK. As long as you offer it politely 'for interest' he might be willing to read it!
Good luck
Bram.