Can I just say thank you both for not making me feel like a crazy person? My friends and family are wonderful but if I asked them some of the questions I posted they would look at me like I have 3 heads!

One of the things I was curious about is are there physicians claiming to be "experts" that are taking advantage of those who aren't as familiar with CRPS. Personally as soon as my doctors starting talking about CRPS the first thing I did was research the heck out of it. Which is how I found all of you wonderful people.

So one again I say thank you for sharing your knowledge, opinion, experience and support!

I have certainly had doctors claim they've cured CRPS patients over the years that seem to have only a very basic understanding of the disorder.

One of the issues is that there was a push to have doctors, as well as other health care professionals, recognize the warning signs of CRPS so that aggressive treatment can start early, giving patients the best chance for remission. Great. But, 1)some of those patients were misdiagnosed 2)what works for a patient that is just a month or two into the disorder will not work for a patient that is at the 2 year mark or longer.

So, my experience (as well as others I've talked to over the years) was that I received substandard treatment during the period when I had the best chance for remission.

The treatment I received from the most experienced pain clinic doc in my area made my condition substantially worse. This was the specialist my PCP referred me to. BTW, the vast majority of his patients seemed to be for back pain, not CRPS.

I'm not a huge fan of pain clinics for many reasons, but the biggest is probably that all their patients are in distress and they very frequently can't devote enough time to each of those patients. If they're being overextended in their practice, they probably aren't keeping up with the latest CRPS research.

I feel like I was experimented early on. Perhaps it wouldn't have made a difference if I had received better care, but I tend to think I could have had a real shot at remission because I actually respond well to stellate ganglion blocks (when done properly.)

So, when newcomers start posting about their care, and it seems to deviate highly from what the majority of us are experiencing, I often question if they need to seek out a more experienced doctor. We shouldn't be treated like guinea pigs, after all. The stakes are just too high. The most extreme example of that are the patients being advised to amputate a limb, which there have been recent postings about here on NT.

When I was first diagnosed one of my doctors recommended a variety of exercises to be done with the lumbar sympathetic blocks. One of the things he put in my treatment plan was contrast baths. If I had not researched it and seen what others have shared I would have done it without thinking twice. That made me realize what everyone has been sharing, you need to be your own advocate.

On a side note I have been searching for a new PCP (insurance issues plus I did not care for my previous PCP) and it has not been easy. The doctor I saw last week told me to get two big buckets of rice and stick my legs in there and move them around. I will admit I have heard of rice being used as part of desensitizing therapy. However he told me that if I do this every day for 3 months I would be cured of my CRPS and would never have to worry about it again! I will not be going back to him, even though I was thinking about putting together some information and articles in an attempt to educate him!

Hello All, There are some great comments here. Thank you! All so true. I have a note on finding docs in general. I have been the lucky gal who always ends up in the 5% - who rupture, who need rare surgery, who grow a massive fibroma and need radiation for a condition commonly treated in Europe that way but not here. Yeah me for being special.

I have had to find a variety of experts to deal with outcomes that "don't usually happen". This means the guys who take care of the 5% and are up on the latest for weird conditions. I have solved this by doctor shopping. So tedious but worth it. I start by looking at a group of specialists' CV which are often on their webpage. I have leaned towards those who did fellowships at large academic centers I respect. They have had a better chance of seeing things at a tertiary referral center and competition to get a fellowhip is fierce. My surgeon trained at Stanford in microsurgery and peripheral nerve at Washington U in St. Louis at an excellent nerve program. The training gave me confidence and he DOES know what he's doing. More than I can say for some of the hacks I have encountered. Because he's on a lower exremity restoration team I ended up finding other docs I trust through him. I travel 3 hours to Medical City in Houston to see three different specialists. It is absolutely worth it. For me, even in a city as large as Austin we just don't have that kind of care, damned town's grown to fast....

Sending Healing Love
Littlepaw

Even the docs with the best credentials, aren't always trustworthy, unfortunately, but your advise is certainly a good place to start.

Don't I know it!! The guy who graduated last in the class is still called Doctor. But yes you have to start somewhere, usually without much guidance. I know we all feel and do better when we take control of our recovery. No one is as invested as the patient.

Littlepaw

Desensitization can certainly help, but promising you'd be cured as a result is a good example of a doc with not enough experience to make those claims or a doc with an honesty issue. The funny thing is if they over diagnose CRPS, a certain percentage of patients issues will resolve in those 3 months, and voila! they have their proof of a "cure".

And while I believe in the idea of the power of positive thinking, being told this med or that procedure will cure you loses meaning pretty quickly as you're repeatedly crushed when those miraculous results fail to transpire.

Certainly not a cure in and of itself, but an interesting recommendation. This could actually be a great recovery tool for someone in the early stages(!)