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?

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.

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.

Heather we are pariahs and lepers to most drs. Good analogy too lol.

Yep, that's been my experience too.

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.

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

Hi lonewolf (I'm loving the name!)

Good advice here, as usual lol. Get a new doc who doesn't make you feel like this. You have enough to deal with already. As Sage said, be your own best advocate. Learn as much as you can about CRPS from reputable sites, and steer clear of the photographs as they show extreme cases and just scare you rigid.

It doesn't matter if the CRPS specialist is a neurologist or a pain specialist - just that they have recent experience with treating and managing CRPS, and most importantly that they treat you like a human being and not a tiresome little statistic cluttering up their office... You might have to see a few before you find one you like, but stick with it and don't let any fools tell you any of this is in your head or NOT CRPS. Knowledge is power. Learn lots and then you can confidently and politely say, I'm sorry, but I don't think that's a good idea for me. Bye.

Good luck and keep posting. We do understand how you feel

Bram.

You know what hurts, You know how You will react to certain situations. They aren't mind readers. You have to tell them what you're going through. They are human not God. Even if they have the gods compllex going on like your PCP they aren't. Don't let them make you feel like they are supreme beings. Fight for the care you need. I've been to 2 PM Drs so far the first only did injections, and he had a god complex. The one I'm going to now does both injections and meds. Oh yeah what Sage meant by no injections is things like cortisone injections. Now I've had a lumbar sympathetic block done and it was wonderful for a couple days. Research is your best friend with this. I've done a ton of research since April. Just keep looking for information. If a dr treats me like I'm a wast of good oxigen I tell them goodbye. This PM Dr im going to listens, and actually believes me. Thats a very important part of why I'm going back. Don't go to the nearest PM dr out of convenience. Go to the one that listens and knows this beast. There are good ones out there. You just have to weed out the jerks. Keep positive, and smiling.

Hi LW,

I'm sorry that you are dealing with this.

I don't think it's necessary to have a PCP who is an expert in CRPS, as long as you have a pain mgt doc who is.

I do think it's necessary to have a PCP who admits what he doesn't know and who works to maximize your health. If he disagrees with a specialist, he should have an explanation for that and a plan to determine the correct dx. If he disagrees with a specialist he sent you to, he should have a damned good explanation for that !

Many of us have had our concerns minimized, dealt with snide comments implying we are just drug seekers, or been told "it's all in our head." Find solace in the fact that you have some professionals on your medical team who "get it" and work to eliminate those who aren't trying to help you.