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 02-05-2014, 12:43 AM #1
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Confused Confused


Don't know what to think at this point. I had a app. with my pcp today, This is the same Dr. who send me to a surgeon after he check out my foot first time I saw him, 3months after my foot injury. And today when I told I was diagnose with CRPS/2, he said you have Neuropathy I said no I have CRPS.
He ask do you know what that means I said yes. Complex Regional Pain Syndrome. Then he acted like it was no big deal, no big deal I'm in chronic pain all the time it is a big deal to me. I left his office feeling confused, & ****** (Sorry)
I 'm mad, how could he act like that he know I been through alot these past 18 months. I was in a abusive relationship that was what cuz my foot injury. He is the one who put me on depression meds. & diagnose me with depression/PTSD. after my surgery in April he sent me for a second opinion cuz I was in so much pain. And now that I know whats wrong with me he said no it isn't CRPS it is neuropathy. Why do Dr.'s treat us like we are stupid. A Dr. at the Hosp. diagnose me after I had the nerve test & he giving me the EMG test. Telling me I have CRPS 11, & there is no cure & it will get worse over time. Not a good diagnose but at less I know what is wrong with me now. Thanks for letting me vent
Any advice out there?
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Old 02-05-2014, 11:43 AM #2
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Best advice I can give is get a new PCP. He's obviously not knowledgeable about CRPPS. Keep going to the Dr's that diagnosed you and can treat you appropriately. I've been to so many Dr's over the years that have told me it's all in my head, I'm not in as much pain as I say I am, and I just want pain meds because I'm a druggy. I was diagnosed 10 yrs after getting this stupid disorder. Don't let this one Dr get you down. There are treatments out there that can help manage this. I was on the point of running away from it all so that my family and friends wouldn't have to deal with this. Then I found 2 Dr's that listened to me and believed me. Now I am on treatment and hopefully this one works for me. You can have a good life even with idiot Dr's around. I have a wonderful husband that supports me and tries his hardest to help. I have 2 miracle babies, 1 that is just old enough to help me with small things. Yes you will have to educate friends and family about your condition. Yes some won't believe you. Yes you will have to fight, and explain, and get mad to get treatment at times. Go get a new PCP, and find one that is willing to learn about this stupid beast we live with every day. Also go take a relaxing hot epsom salt bath. Just sit back and let your mind wander to good things, and let the heat seep into your bones. Heck even get a nice glass of wine with the soak. The more rot up you are the more you will hurt and the more depressed and then the circle begins. Then your ptsd will come into play and make things even worse. Keep positive, and keep smiling. I will pray things get sorted out for you.
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Old 02-05-2014, 11:50 AM #3
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I wouldn't go by what a primary doctor said. They aren't pain doctor's and they don't see that condition on a regular basis.

I wouldn't worry about him just find a pain doctor if u can. The pcp should have suggested it right away. In my experience pcp's hate the word PAIN. Usually when I say that word they say "okay find a pain doctor". Like i'm a lepper.
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RSD since 8/2005
Originally in left and right foot
Spread in 2006 and Jan 2014
Both legs, arms.
Chronic pain going back to 1992

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Old 02-05-2014, 11:54 AM #4
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Heather we are pariahs and lepers to most drs. Good analogy too lol.
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Old 02-05-2014, 01:36 PM #5
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Yep, that's been my experience too.
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Old 02-05-2014, 03:03 PM #6
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Yes. And YOU have got to be your own best help. Some docs may even want to learn from you, others not.

I don't want to be any doc's experiment or lesson. Either do you. Narrow down and find the RSD/CPRS people in your general area. Talk with them and compare notes.

Research your issue, decide things based on what you learn until you find a doc who is thoroughly knowledgable.

Do not get any invasive treatments! That includes injections. Once done, those treatments cannot be undone.

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Old 02-05-2014, 10:18 PM #7
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Confused


Thank you for all your replies. They are very helpful, Just a newbie here. Still trying to find info for my area. I live north east of Pittsburg Pa. in a small town, Vandergrift Pa. I do have a pain dr. new to her only seen her twice so far. got to do some research for my area.
Sage, what did you mean by injection treatment can't be undone. did you mean injections are a bad idea ? my pain Dr. hasn't brought injections up.
What is the best Dr. we who have RSD/CRPS should see is it a Neurologist? Thanks again
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Old 02-07-2014, 11:24 PM #8
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Quote:
Originally Posted by heatherg23 View Post
I wouldn't go by what a primary doctor said. They aren't pain doctor's and they don't see that condition on a regular basis.

I wouldn't worry about him just find a pain doctor if u can. The pcp should have suggested it right away. In my experience pcp's hate the word PAIN. Usually when I say that word they say "okay find a pain doctor". Like i'm a lepper.
You are right..good advice..
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Old 02-10-2014, 12:56 PM #9
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Look up pain management Doc's the has experience with CRPS. I have had some crappy doc's and had to keep searching until I found they guy I see now. If you can, do not get another EMG, these tests can worsen CRPS in some patients. Talk to your doc about blood pressure meds if needed, crps causes restrictions of many blood vessels and leads to increased blood pressure, during a flare up mine hit 170/140. I wish you the best.
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