I would like to thank everyone for sharing their comments, I understand my condition is much much better then many of yours. I like using these posts as a sounding board for ideas.

After reading everyone's comments I decided to dig a bit deeper into how to diagnosis CRPS. In a couple hours the best I could find was this set of criteria talked about in "Proposed New Diagnostic Criteria for CRPS" See Table 3.

This paper does a great job explaining the sensitivity vs specificity trade off's.

This is how I have broken down my condition based on those categories.


---- 1 ----
1.1 maybe: My pain hasn’t been out of proportion to the injury but has been abnormal in its duration.

---- 2 ---- symptoms ( things reported to doctor)
2.1. Maybe: No hyperesthesia. Maybe allodynia.
2.2. POS: I have had temperature asymmetry (foot felt warm, no longer does) and skin color changes (redness). Though currently, after two days of measuring they seem to be about the same temperature.
2.3. Maybe: No sweating. Possible Edema.
2.4: POS: Injured toe discolored, though improving. only 40% ROM in plantar flexing the toes.

----3 ----
Signs are the same as symptoms only their observed by doctor at evaluation. I'm not sure what my doctor observed or how to take this into account.

----- 4 -----
4.1 The doctors haven’t offered another diagnosis that better explains the signs and symptoms.

-------------------------------------
Questions I have to resolve:

1.1 Could my duration be due to mis-treatment of foot and toe?
2.1. Have I had allodynia? That is, could the warmth in my toes be considered allodynia? We should note that warmth and redness are always as result of walking or sitting. My research suggests no, it doesn’t match the symptoms of allodynia.
2.3: Could the swelling, (mild and local to the toe, in line with what you would expect) be considered Edema? Would this count as a condition?
3.1 Same as 2.1
3.3 Same as 2.3

4.1 (Same as 1.1): Could I still just have delayed healing due to poor management (not enough rest and immobilization).

----------------------------------------------

So far as I can tell this creates two scenarios.

It’s a fracture that took a long time to heal due to mistreatment.
It’s CRPS with statistically unlikely set of mild symptoms.

I know I have two diagnosis of CRPS, but after consulting the literature i’m not sure that really settles the matter, given the preference in the medical community to avoid False negatives. The sensitivity and specificity rates in that paper make it clear its very easy to diagnosis this incorrectly. My next step is to bring these concerns to my doctor (10/1/2014) and if he can’t rule it out to investigate further tests and opinions.

Thanks for everyone's suggestions!

I really hope that you won't be offended by this but your extensive over-analysis seems to be more of an issue than your post-fracture physical situation.

Regardless of what your doctors might have mentioned, you just don't even come close to meeting any of the criteria for a diagnosis of CRPS. The diagnostic criteria have to be satisfied in exactly the same way for the very mildest case of CRPS as they do for the far more severe cases that most people who are regularly posting here have. If you had allodynia or hyperalgesia you would certainly know about it. Allodynia is regarded as one of the 'cardinal' clinical signs of CRPS. It is unmistakable when you have it.

I'm not trying to be harsh but you aren't doing yourself any favours by keeping looking for answers that you are extremely unlikely to ever find. I don't think obsessing over something you are 99.9% certain not to have is helping you move forwards. The reality is that even if you have had a delayed healing process from a fracture, you have ultimately made excellent progress, you are experiencing little inconvenience from the remaining limitations you have and I have little doubt that as you continue your recovery, everything will resolve and be back to normal or near normal in due course. You just need to be a bit more patient - let time and healing happen. Everything you have described in terms of sign and symptoms points to a normal if slightly slower, post-fracture healing process. Since you are making an excellent recovery, there is no point in now trying to get lots of tests done especially since no tests that can be carried out at this stage will give you any answers either way regarding a diagnosis of CRPS.

Between 33 and 50% of patients who consult neurologists with what seem to be neurological signs and symptoms never receive a diagnosis. They never get any answers or explanations. You are unlikely to get any answers to your questions. Going to yet more neurologists or other healthcare professionals for opinions and tests isn't actually likely to result in any answers. I know it's difficult to get your head round that and you are obviously someone who analyses everything in great detail so having to move on with your life leaving these unanswered uncertainties won't be easy for you. Unfortunately, that is the harsh reality of the world of neurology and rare medical conditions. It is a reality that many of us here have been shocked to discover and we have then had to come to terms with the fact that medicine can't give us answers or "fixes".

The practical reality is the same regardless of whether someone is just healing a bit more slowly than they would like from a fracture or whether they have had CRPS that has now resolved itself. You keep up your rehab, walk normally, do all your other normal activities and get on with the rest of your life. Continuing to focus on something that you don't have and that isn't causing you problems with your daily life is only anchoring you in the past, wasting energy you could be using for other things and stopping you moving forward.

Thanks Neurochic,

I don't think your being harsh. But it's possible your more informed or confident then I am. For instance, your insight into allodynia.

> If you had allodynia or hyperalgesia you would certainly know about it. Allodynia is regarded as one of the 'cardinal' clinical signs of CRPS. It is unmistakable when you have it.

Gives me added confidence I didn't have before that I understand the situation correctly.

Lets keep in mind that a CRPS specialists and a knowledge orthopedists have diagnosed me with CRPS. Another CRPS specialists wants to see me again for a follow up. Meanwhile, you and others on this forum feel confident i don't have CRPS.
The situation is far from resolved. Even in the best case outcome and my Doc on wed tells me he thinks its not CRPS leaves me 2 for and 1 against.

I'm spending this much time on the subject because its extremely important, costly and time sensitive. My understanding is that if it is CRPS then its in my best interest to have treatments done. The one doctor recommended a lumbar nerve block, which would have already taken place had i agreed. Agreeing or not agreeing to this and other procedures is my choice. A choice which, given the possible cost, is one I would like to make informed.

I'm doing all this because it gives me a sense of control in a situation where their seems to be very little. Because to do otherwise is to repeat a mistake I have made with other injuries in the past to my regret.

Finally, I'm posting this because it helps to talk to people. Ironically, i'm normally very reserved. I hardly seek out companion or socialize unless their is another goal. I think by turning this into a research project i'm emotional distancing myself from the problem. Fighting the fear by understanding it. Every time I post here and someone tells me I'm being paranoid I get a huge boost. I can't thank everyone enough for their help in that regard.

1) I agree with Neurochic.

2) Speaking from personal experience, without going into "My Story," I would advise very heavily against doing anything invasive like a lumbar nerve block, IF you are already making steady improvement. No matter what a doctor will tell you, nerve blocks aren't curative; they're just a short term source of pain relief with their own set of potential complications which are NOT WORTH THE RISK if you're already getting better.

Even if you did have CRPS then you have already been having treatments done and you have gotten better very quickly. PT and oral analgesics may have contributed to ensuring that you are almost back to normal in a rapid timescale so there would be no reason to embark on any other treatment now. If you had, had CRPS, the treatment you had would have been exactly the same. It may also be that these interventions have done nothing - the recovery process could have followed the self-same process without these things - you will never know.

There is no special treatment that you now need to try to get in a hurry. There is absolutely no point at all in having a lumbar sympathetic block done at this stage - you are already almost fully recovered and it would be a waste of time. It is not a risk-free procedure. The only reason for any doctor to give you one now is to make money out of an unnecessary procedure.

Going for another opinion isn't going to change the fact that you have recovered very quickly from an injury and have virtually no residual symptoms. Nor will it change the fact that you havent met the criteria to be diagnosed with CRPS. Many orthopaedic surgeons and physios would consider your recovery now to be good enough to discharge you and advise no further ongoing treatment is required.

Your CRPS specialist may well be a true specialist but if I had money for every time I've seen a healthcare professional claim to have specialist experience of CRPS when they patently don't, I would be very, very rich. You need to seriously consider whether it is in the financial interests of your treating physicians to keep you on as a patient so they get cash from every procedure or visit you have. Additionally, you need to think about whether they need to pin some kind of chronic diagnostic label on you so that they have a billing code for your insurance that allows them to keep "treating" something "chronic", rather than because you actually have a real medical issue that requires intervention.

The paranoia you mentioned isn't healthy. It's stopping you from putting this relatively minor injury behind you and moving forwards. People posting on here are focused on CRPS and research it extensively because they have lives that are decimated by severe, extreme pain and disability. You honestly don't need to be spending your time doing that.

I agree with Neurochic here. It appears that you are getting better. Take a breath.

Do NOT have that block done; there are significant risks that go along with that procedure. In my humble opinion, there is nothing that needs to be done (other than what you are doing with range of motion, reasonable movement, etc.) as long as you are making progress.

I think you need to step back and see how things go. Stay the course. With some luck and some time, your symptoms may all go away. No reason to panic or seek yet other opinions which may even further muddy the waters. Remember what I posted earlier about "paralysis by analysis". It is easy to get into that mindset.

Good luck to you. Most of the rest of us would be on cloud nine to be in your shoes!

Good morning Harry, I have been catching up on posts in this group and was wondering how your appointment on 10/1 turned out? You received such thorough and thoughtful info here! You mentioned in one of your posts about turning your situation into a project and boy, can I relate to that! Mine has been a 7 year odyssey and we're still working on it! I won't go into details here. I am hoping that you found the answers you seek and are on a path to recovery and better health! Deb

The OP is example of a patient that likely never had CRPS and that his CRPS expert will turn around and use as an example to his other patients as an example of someone he "cured". That may seem a little jaded, but those of us that have been battling CRPS for many years, all seem to have to these stories about "experts" that clearly don't know the basics about the disorder.

I'm not "cured", nor did any doctor claim the cured me. I still experience the symptoms i outline below.

0. pain/symptoms lasting longer then it should given injury.
1. discomfort while walking
2. sweating, swelling,
3. temperature difference, coloring
4. ROM loss and twitches
5. no other explanation for pain and symptoms.

Why isn't it CRPS? What else could it be? Do you know of some test that would be worth doing to find out? What basics are they overlooking?

on 10/6 i had another local nerve block done, its unclear if this helped. In the follow up the doctor remarked that he thought it was CRPS.

My symptoms are:

1. discomfort while walking 1-2/10 pain
2. sweating, swelling, 1/10 pain
3. temperature difference, coloring 1/pain
4. ROM loss and muscle twitches 1/10 pain

These seem to get worse in the evening and with spicy food. At this point im going to measure my progress in 3 month increments.