Hi HD, "
Not to sound a bit off here but you need to look at it as "It is what it is" and let the docs do their thing.
It may or may not be CRPS. If it is, then good to know so it can be treated. If it's not, even better. But dxing a problem is best left up to the experts. Just be sure they're experts!
That's my humble opinion...

One thing to be aware of, though it's really rare, there is a "warm crps". The temperature fluctuations in crps are caused by Autonomic Dysfunction. Basically your body is unable to regulate basic things like temperature, and pigmentation. A lot of the severe discolorations and temperature changes are not only Autonomic Dysfunction but coupled with severe swelling (ie Edema) and can actually be very harmful as it can cut off blood and oxygen supplies which cause a whole lot of other series of problems.
I'm not a doctor, but it doesn't seem like crps to me at all. Possibly a neuropathy of some kind, but maybe not crps. I would maybe suggest you try to find a Crps or Neurologist or Physiatrist specialist in your area. It's never a bad idea to seek out a second opinion before resorting to drastic procedures or diagnoses.
Oh just an FYI, Peripheral Neuropathy can kind of mimic some of the symptoms of crps. They have a list of VERY similar symptoms. However a HUGE key for crps is the "out of proportion to injury or stimulus pain". PN can cause minor discolorations, very slight temperature changes, and swelling.
On another note. The year before my injury that led to my crps I broke my ankle. The ER had failed to find the break in the x-rays. So what would have been a somewhat simple case of 3 months of using the R.I.C.E. treatment (rest, ice, compression, and elevation), turned into extreme swelling for 8 months almost having surgery and very prolonged pain. Because the ER didn't see the break, I was diagnosed with a moderate sprain (stage 2). I kept asking for another X ray, but they wouldn't. I had to argue with the ER doctor to get a "boot" and crutches. Even though I couldn't bear ANY weight on that foot without screaming. Anyways, long story longer, I was told to only use the crutches for 3-5 days. 5 weeks later I was still telling my doctor that I couldn't walk on it, (I was calling or seeing that doc at least once a week trying to get them to take another X ray to prove it was broken as I suspected) and an MRI was ordered the same day. The Orthopedic Specialist who read the results said I was extremely lucky. I had been correct, and had I even stepped wrong it would've broken the bottom of my tibia off and would've had to have surgery. The healing process was extremely retarded since I had been told to walk on it as much as possible. Nice hug? And it was reeeally swollen still. I was even elevating it and putting ice on it when at work. 4 weeks later and even though the bone was starting to heal, the swelling wasn't any better. So I was put on what basically amounted to bed rest, I even had to elevate it (constantly) at night. My point with this story is if you started using it too soon, too often, it can extremely retard the natural healing process.
Again I would highly recommend that you get a second opinion. Neurochic, was spot on when she explained the specific criteria for crps. The reason being that there are quite a few other autoimmune and neuropathic disorders that can present a few similar symptoms. But you MUST fit at least 3 of the defining symptoms to be diagnosed with crps.
Before your doctor does anymore unnecessary procedures or medications, I seriously can't believe he gave you lidocaine patches or a nerve block with no definite crps presentation, Seek a Second (technically 3rd lol) Opinion!!!!
And Good Luck! Let us know what happens even if it isn't (iI'll pray for you its not!) Crps! We care about each other in this community!

Thanks CRPSsongbird,

I started using my foot way to soon. I was horrible mix of arrogant and ignorant. I buddy taped it but never used the immobilization boot until 3 months in. I drove on it, walked on it, etc...

The only upside was that at work and home I didn't have to do barley any walking.

When i See my Doctor again i'll make double sure they understand my history.

I haven't yet seen a neurologist yet, I had trouble finding one that also had a background in CRPS. It might be worth a 3rd opinion.

Is the nerve block something to be worried about?

I'm sorry to hear how things turned out for you. Best of luck in the future.

I do understand how hard it is to find a specialist. But I would really recommend getting another opinion. Your symptoms really don't fit the crps diagnosis parameters. Check out this site

Wwwrsdhope.com
Www.mayoclinic.com -and search CRPS/RSD on their search'

It lists many symptoms. But you have to closely fit at least 3 symptoms. And that is only AFTER ruling any other conditions/syndromes out. There's is not a single test that can prove Crps, and even though early diagnosis can be key to recovery, should only be given when all else has been ruled out. It really comes down to a process of elimination, given a history of certain symptoms. Also it has 2 "types" Crps I- without a specific injury or trauma and Crps II- a defined injury or trauma. Either of those types can be the cold or warm crps. My left arm ranged from 8-12 degrees colder than my right for example. But it comes and goes and will present in patches or specific areas and sometimes will be the entire arm. Regardless you should print out the symptoms and diagnosis criteria and have your doctor go over it with you. I maybe he has a good reason for giving you the diagnosis he did, and you just need clarification!

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.

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.

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.