Is it really crps?

My experience has led me to believe that the doctors know very little about CRPS. My surgeon told me as such when he stated that it is why they call it a syndrome because they are unsure about it. I have no pain but the other symptoms of CRPS and he diagnosed it as CRPS. I went to a specialist in Boston and he said it wasn't CRPS but rather neuropathic problem with the wrist. It seems like they are splitting hairs. 

Hi, Emily:

These are the common symptoms in CRPS. They can easily be reproduced in rats in the laboratory setting just by immobilizing their little legs, not even injuring them first (Although that model works too, from what I've read).

I'm a CRPS patient, and also an RN who worked as a work comp case manager for a bit, and saw several cases of CRPS in these patients: Usually I got these cases because the insurance company couldn't figure out why after a surgery, or broken bone, or sprain, that the injured worker was getting worse instead of better. Well; turns out CRPS is the reason, and there's just a lot of misunderstanding about this inflammatory condition, which is now thought to be part auto-immune, part neurological, and in some people, even a genetic component is suspected.

You are right to ask the question about is this really CRPS, since there are many more common conditions that can mimic some of the signs and symptoms. As CRPS doesn't have a "cure" yet, doctors, nurses and therapists just treat the symptoms to try and keep you more comfortable, so if it's NOT CRPS but instead, some other thing that can actually be reversed or treated in some other way, it's important to know: Examples include stuff like Lyme Disease, lupus, type 2 diabetes, cellulitis, and many more, up to and including the weird stuff like heavy metals poisoning. This is why if not already done, you need some comprehensive laboratory testing. You likely had a bunch of this prior to your surgery, so you have a very nice set of values as a baseline. Some testing for inflammatory markers may be in order here to put your mind at rest and give your doctor(s) some more useful information. Also, a small skin punch biopsy can identify small nerve fiber loss, which further narrows down the possibilities. Turns out most patients with CRPS actually have significant small fiber loss that doesn't turn up on standard muscle and nerve testing (EMG/NCV). No one really knows for sure (to my knowledge) whether CRPS causes the loss of small nerve fibers, or the other way around. But at least, loss of small nerve fibers provides a target for treatment, since it confirms neuropathic-type pain; and a side benefit is, nobody can tell you "It's all in your head". Sounds crazy, but there are still some doctors who don't believe CRPS is even a thing: I had a couple healthcare providers in the early days who wanted to send me to a psychiatrist. Not to help with managing pain and anxiety related to the CRPS, mind you... But to help me "understand" that I was a hypochondriac. Sigh. Sounds like you have at least a few people on your team who are on board, and doing the best they can to help.

Here's what I would advise to move things forward:

Google Central Sensitization/Centralization of Pain. This is really important, and could change your life, not just your chances of recovery from this thing. There are comparatively few doctors, nurses, pharmacists, and therapists who even know this is a thing, but it is really THE thing. It's only been in the last 10 years or so that there was enough research to confirm this, so if your team hasn't read up recently, they may be totally, happily ignorant as dirt. As an RN, I wish I was pulling your leg on this one (and not the injured leg!) but I most emphatically am not.

Don't know what your team means exactly by desensitization, but in some cases, vigorous scrubbing, passive or active movement past the point of mild discomfort, etc., can make things worse in the long run, NOT better. Ditto ice therapy, or cold/heat challenge to the affected body part. These things can stimulate the central nervous system, and cause spread of the CRPS via the nerves to the Dorsal Root Ganglia of the spine (see Central Sensitization, above), and then, you are off to the races (not in a good way).

Now for the nitty-gritty: How to freakin' get through your days (and nights) without pain on a level that would make "normal" people pass out and/or throw up: There is a tendency to treat CRPS pain, since that's the most spectacular symptom for most people. But since this is looking more and more like an inflammatory/auto-immune driven post-traumatic thingy, go after it by targeting the inflammation which will end up helping with pain relief in many sufferers: Check with your doctor about the following:

Low dose Naltrexone (protocols for use are online; I like the advice by Dr. Pradeep Chopra at Brown University). This med has very few side effects and really helps with central inflammation. It makes my pain better by about 20%, daily. Cheap as dirt too! I pay less than $6 per month. Not a typo!! This is by prescription only.

The rest of this stuff is all over-the-counter:

Naproxen, if you can tolerate it: I take 220 mg at bedtime, every night, and again in the AM if bone and joint pain is bad (like, when the barometric pressure drops like a stone, for instance). Works on prostaglandins, a mast-cell product that increases body pain.

Benadryl, which if taken at bedtime, induces drowsiness AND targets histamine 1, also a mast-cell product that increases inflammation. As a general rule, in pain management, if you can reduce inflammation, you reduce a big trigger of pain in general, and maybe even the risk of your pain spreading.

Claritin or Allegra, non-drowsy version of Benadryl, and one lasts all day, so if you get any bang for your buck on the Benadryl at night, you might use one of these other Histamine 1 blockade drugs to help with inflammatory pain during the day.

Pepcid, or another Histamine 2 receptor blocker. Works a lot like Benadryl, Claritin or Allegra, etc., just targets a little bit different mast-cell product: Histamine 2. Nice thing again about all of these OTC meds: Cheap. As. Dirt.

Vitamin C, extra with each meal and even more if any increased pain, a new trauma, or you feel like you are getting sick in some way. Vitamin C is an anti-oxidant, anti-inflammatory, generalized boost to the normal immune response (Which is screwy in all CRPS patients, sooner or later).

A good multivitamin with lots of Vitamin D, as most if not all CRPS patients run short on Vitamin D. I don't know why this is, but I'll keep working on finding out.

Calcium and Magnesium. Just make sure to take with a meal containing protein, to ensure best absorption. These are my go-to supplements, as they help with everything from sleep, to anxiety, to bone pain and muscle cramps/dystonia.

Also, I find that a diet very low in refined carbs, high in excellent quality fats such as minimally processed coconut oil, extra virgin olive oil, and pasture-fed butter really helps with the generalized pain and weird, episodic stiffness/joint pain: I initially thought I was fooling myself on this one, because I really ENJOY eating a lot of fat in my diet(!), but I found out the hard way that if I go for more than about 36 hours without about a 1/2 cup total intake of these fats in whatever combo, over the course of a day, I am in a world of (even more) hurt.  

So that is what I find helpful, but I'm only the nurse and not the doctor, so I offer this as an example only. You will learn by trial and error what works best for you, but if you target inflammation, you will be ahead of the game.

Best of luck. Don't hesitate to ask more questions as needed; that's how we all learn... And in the case of CRPS, knowledge is definitely power!