I see the words "CRPS Expert" on several different posts and it got me thinking. What makes someone an expert?

Does a physician have to be in a certain field? Are there any criteria one should look for when finding an expert? Are some of these doctors declaring themselves experts? Does one have to be published? If so, how many articles?

When one is looking for an expert is there a website that will list the doctors that are considered an expert?

Sorry for all of the questions but I am curious to see what others think.

Well, that depends on what you're in need of and how confident you are about your depth of knowledge about CRPS. It took me a few years to recognize the signs of doctors that claim VAST CRPS experience and are quite honestly CLUELESS. Considering the small window of time to have the best shot at remission, it's best to err on the side of caution when choosing a doc, IMO. If you or a family member were diagnosed with cancer, wouldn't you travel to the best doc you could find? I think a diagnosis of CRPS should be treated just as seriously.

(I'm guilty of advising people to seek out an "expert" and that is insufficient of course. The newly diagnosed should read as much as possible about CRPS--some docs discourage this... They should get the best care possible and this might include farther travel time than they'd prefer. They should check the reviews of other CRPS patients. They should check out their closest CRPS support group and ask about local docs. Some of the CRPS websites have lists of experienced docs as well.)

I really respect my current doc, and he seems very invested in trying to put CRPS patients into remission. I travel 90 miles one way to see him which is a logistical nightmare every month. I trust him to perform stellate ganglion blocks, and ketamine infusions, but he hasn't convinced me that a spinal cord stimulator won't cause spread and if suggested amputation, I'd be seeking a second opinion from one of the big dogs on the east coast.

There is a doc in SoCal that has very impressive credentials, but is 1)a jerk 2)thinks he knows more than he does 3)isn't particularly honest, so even though he publishes and lectures at conferences, etc. if you read reviews from his patients you quickly find out not to trust this guy because he's simply trying to make BIG money off of expensive programs and procedures.

If you live in a place that isn't terribly populated, the reality is most docs are just not going to have seen very many CRPS patients. I had one doc that I respected that had at most a half dozen CRPS patients at any given time, but he kept up with the current research better than the docs in Socal I would call "experts" in the field. If I experienced something he was unfamiliar with, he'd go research it! He obviously directed his staff to schedule me before lunch or as the last patient of the day to give me as much time as I needed. I would refer patients to him in a flat second.

The doc in my previous county (population 840,000) that is probably the most experienced with CRPS patients works at a pain clinic. He does stellate ganglion blocks in house that are substandard to what I've had done by two other doctors. He also performed a radio frequency neurotomy that exacerbated the severity of my hypersensitivity permanently and refused to admit that the procedure made me worse. He might be the local "expert" but although I really liked him as a person, I would never recommend him.

What I have found is that docs in smaller communities will not disagree with their local colleagues. It was a waste of time to seek a second opinion locally. When I've gone to docs that were out of the area they didn't rubber stamp the first opinion, so at the very least get an "expert" second opinion for intrusive procedures.

(I'm sorry this might be scattered, but it's the best I can do tonight.)

Thanks LIT LOVE that was awesome and bluntly truthful. All of your comments mirror what I experienced over the years.

Just want to emphasize another relative opinion here. Especially because of the issues pointed out so succinctly above, we are ultimately our own experts. We have to be. It's our pain and our body - no one else's. No one can tell us how and what we feel.

Now, this is an absolutely frightening and lonely conclusion, but these experts are there for guidance while we make our own decisions about the actions we take. About who we are and who we want to be. They don't have all the answers. Not even close. Our family and friends, if we are lucky enough to have either, can and do also help us with our decisions. But it's still our choice no matter what - we're either choosing to go along with what experts say on faith, or doing our own work and deciding to to follow our own path, while fully considering everything the current experts have to offer. Some of us luck out and are able to find a great doctor/advocate early on. Many do not. Honestly, the current system is stacked against it. And the decision to do nothing is still a decision. The only real test subject that matters is you.

Everyone is here for any combination of these three reasons:

1) Support others emotionally.
2) Be supported by others emotionally.
3) Share and utilize the valuable information from our own individual experiences.

All are important but #3 is the key. Specialists and medical journals and CRPS informational sites and cutting edge research and double blind studies are also all great resources, but all of that information isn't what matters. It's how that information is filtered and applied by us that counts.

In my experience the typical CRPS "expert" is an expert in nerve blocks and other surgical procedures, and in the distribution of different types of pain/depression medication. Some have experience in ketamine and other more advanced protocols. You also may be referred out to other experts in counseling, psychiatry, and occupational/physical therapy. All of these modalities do have their place; I'm not saying the medical field is worthless. But the fundamental bottom line fact is that western medicine is primarily based on a model set up to address specific symptoms rather than the underlying health issues causing them. Pain is the symptom, and by far the most prevalent one of CRPS/RSD, but it is not the condition itself.

My advice: Keep an open mind, but trust nothing you haven't checked for yourself. I'm here for the 3 reasons above and want nothing more than all of this suffering to go back to the frickin' void it came from.

Sorry for the soapbox/rant, guys. Just want to help.

I literally fell asleep at the keyboard at least 6 times while trying to complete that.

Something I'd like to add is that while I'm confident about what's going on with my body now, it wasn't always so. When your pain is at high levels with no break for extended periods of time, and you haven't slept in months/years, and you're depressed because your life has imploded, you're often willing to try ANYTHING--and when a person hits that wall, they better have a doc that is trustworthy, that won't talk them into something that will exacerbate their CRPS further. (The right doc will help you find a pain psychologist, as well as figure out meds and/or a treatment plan before you get to that point.)

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.

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.