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Ive Recently Been Diagnosed With This Disease!!

 

I've been diagnosed with Complex Regional Pain Syndrome but I really dont think that its type 1--I think that its closer to being type 2. This disease has taken over my life, if you call being in pain 24/7 a life.  I dont think that the doctors around here are sure of how to treat it. Most of them just want to do a surgery that they know isnt going to help but most of the time only make things worse. They really need to listen to what we the patients are telling them & Im sure that the office visit would be better for both of us.  I would like to hear from other people who have experienced the same things as I have with the doctors.  I know that we all have to have some horror stories with the doctors.   I really hope that we are able to trade stories & maybe some helpful information.  Thanks for letting me ramble but hope to hear from some of you soon.

Janet

tiredofpain07 tiredofpain07 46-50, F 5 Responses Sep 26, 2009

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I recently had a physical therapist tell me he believes I have CRPS. I had heel surgery in June and I am in more pain now than I was going into surgery. It has also spread to my other foot as well. What kind of doctor made your diagnosis? Im worried because I have been suffering for 7 months now and just getting around to a diagnosis, after 4 doctors and a million different medications that did nothing for me. What has helped you?

A lot of doctors are not well informed about this thing. I don't even know what to call it. Is it a disease or a syndrome or a complex??? Anyone know? Regardless, I got help from the same guy who passed over me a year and a half ago and now he's all "you need a better quality of life, you're not living, we need to do more about this". Well freaking hallelueah on that mister...where were you before but who cares he's here now! I just think he had more patients with it and learned more and had a better level of sympathy and experience. The future will hold more hope for all of us I think...hang in there! It's painful, slow and frustrating. Most of all....keep on them. Squeaky wheel and all that! Best of luck...keep us posted. I hope you find some relief and a good doctor soon!!!

What kind of doctor do you see? Ive been passed to 4 different doctors and would like to avoid another one who isnt sure. My physical therapist is who is making the diagnosis. I have an appt Jan 6 with orthopaedic.

Be strong , don't give in to surgery. So true that Dr's don't know enough about it or how to treat it. Let's hope more of them become better informed and more compassionate in 2011!

that is so true!

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