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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I think we all feel a bit like we are crazy sometimes!!
Could it be that maybe you are experiencing remission? Did you bring your prior records with you to the appointment so that the new PM had your history and diagnosis available before recommending the reduction in medication? You are lucky in that most PCP's won't write more than a few scripts for pain medications before referring you to a PM especially for chronic pain syndromes. Will he/she continue to do this until your new PM is up to speed or adds additional treatment recommendations or diagnosis?
I don't know.. I would be torn at this point if a doctor told me I might not have CRPS.. I think I would jump up and down for joy that something other than this beast is causing the problem. On the other hand.. I would be stressed and upset just the same, at wondering how pain will be managed while another diagnosis is considered.
You mentioned you were just getting back on track with a new PM to see if new treatments are available since the onset of your CRPS - are you getting more than one opinion? Personally I would strongly suggest doing this in light of the conflicting diagnosis or at least make a follow up after this particular doctor has a chance to review your old charts. Then you could ask directly why he/she thinks you do not have CRPS now and what training/credentials they have above the doctor who originally diagnosed you. I would do the follow up with another person present so that you have an extra set of ears. I would also gather a copy of the chart notes from this new PM to see exactly what is written in case there was a misunderstanding a long the line.. which can happen.
Honestly I hope that you don't have CRPS - that would be better than winning the lottery in my opinion. But.. I like tend to hold onto any thread of hope and statistically more doctors are ignorant when it comes to CRPS than aren't so the odds unfortunately are against a more favorable diagnosis. Remission however does happen so that can explain the reduction in symptoms and be a great thing for you no matter how long it lasts.
Take good care - hoping you get this sorted out soon.
Tessa