It could certainly be some form of neuropathy, which there are several forms of and can include every symptom you've listed. In my opinion, the pain you've previously described is not unusual in it's severity or length for the type of injury you had.

My previous post was not directed at you personally but about my frustration with doctors that exaggerate their RSD/CRPS experience.


If you'd like a nice long read about diagnostic criteria of RSD/CRPS I'd recommend this:
http://www.rsds.org/pdfsall/CRPS-gui...ed-2013-PM.pdf

I can relate to having unusual symptoms that were difficult to diagnose AND years later developing RSD/CRPS. When I was 12, I had knee surgery. My foot turned ice cold immediately after, and 30 years later the temperature regulation dysfunction is still unavoidable in certain conditions. I experienced fluctuating low to occasionally severe pain in my knee for approximately 5 years. I used codeine for 2 days after the surgery, and then switched to an over the counter topical pain reliever. Running was especially problematic, but I was still able to ride horses, although it also increased my pain. And,even now, I still have periods were the pain increases for hours, days or weeks, but it's usually caused by an injury

About 15 years later, I underwent 2 surgeries on my dominant hand that were problematic. I had issues of abnormal sweating, the limb turned cold, lots of swelling, range of motion issues, etc. But, I had a torn tendon until after the second, so... After my 3rd surgery, which fixed the structural issues caused by the 2nd surgery, I developed RSD/CRPS which was obvious when I went back to physical therapy 5 days later. Unfortunately, I had switched to a new pt, who assumed I had a low pain tolerance and he had never had a RSD/CRPS patient before me. Ice was a new form of torture, and my goal was to get through it without crying. I could not work with one of the physical therapists because he either treated me too roughly or too gently--both extremes that often left me sobbing--that was because of allodynia. And then there was the burning pain that was constant, but at varying levels.

Four years into the nightmare, with insomnia, hypersensitivity to vibrations, flashing lights, and sound, I was contemplating suicide as the only real option to ending my misery. --When a light wind makes you question if you should go to the ER, things are bad. The good news was it was easy for my pt to recognize his 2nd patient with RSD/CRPS several years later--he only had 2 in 30+ years of practice before he retired.

No doctor has ever suggested I had RSD/CRPS prior to my 3rd surgery. Were there some issues of dysfunction going on? Sure. But, not the same severe sympathetic nervous system dysfunction that came after.

RSD/CRPS is a monster that often effects nearly every component of a person's life. Many of us are permanently disabled and struggle with very basic daily activities. (If you want to be inspired read through Catra's old posts and the insane lengths she has gone to keep working.)

One of the things that is the most frustrating to me is in all of the friendships I've developed with the newly diagnosed over the years--none of my advise has ever made a difference. They have all been so overwhelmed and low functioning, they've never been able to start an aggressive treatment program in the "window" of the first 6 months (or even 12 months) after diagnosis.

Of the hundreds of RSD/CRPS patients I've interacted with online, by phone, or in person, for the past 14 years, what you're describing sure doesn't seem like the same animal. Even those that can "pass" as healthy can usually only do so for short periods of time, and then they have long recovery delays to return to their pain baseline.

It's fine to research the disorder and do everything in your power to make sure it never develops, by utilizing things like high dosages of Vitamin C, using Epson salts or lotion, or using lidocaine patches, etc. (Swimming would likely help with your strength and ROM issues.) But, I would not recommend undergoing anything invasive as others have mentioned.

Maybe, i'm not sure how to pursue this possibility.

I had a fracture on may 5th, thats a little over 6 months ago. None of my
doctors think my symptoms are normal for any stage of the natural healing process and I
asked that question to all of them directly.

I understand. Both anesthesiologists I saw had specialties in CRPS and have
seen many CRPS patients before me. I searched through my network for people with
CRPS specialties.

Thanks, I have read it. If you noticed I ordered my symptoms with
criteria in that paper. As far as I can tell i'm positive on most of them. With
only criteria one being questionable as i'm not sure if the discomfort i feel
while walking counts. The biggest point of contention Seems to be that
my pain (which is low) has never been "out of proportion" (at worst it was a 4).
However, as far as i can tell, the criteria is actual "out of proportion in
duration or severity". And I would argue, unless someone can point show
me evidence other wise, that it's out of proportion in duration

I have no words. Thanks for sharing.

I feel i'm left with unlikely possibilities:

I have mild CRPS, or their are sub-types, and people with mild CRPS don't frequent/post on forums.
I don't have CRPS, and have been mis-diagnosed 4 times.

The only peace of mind I have found is in understanding that no one seems
to have a handle on how this works as is evidenced in the
"The outcome of CRPS type 1: A systematic Review" which concluded that
evidence from prospective
studies that the rates of symptoms of CRPS reduce
significantly over the first 6 to 13 months, but the
results from retrospective studies indicate that the out-
comes of CRPS are highly variable, and the cross-
sectional studies demonstrate that there are a group
of patients for whom pain and sensory symptoms persist
in the long term. Overall, the quality of the evidence
was poor, and the data should be interpreted with caution...

Thanks, Even how i'm not sure how things would have gone had I not had
any nerve blocks done. My doctor recommended that anything more
he could do to "get the last 10% of pain" wouldn't be worth the
possible complications.

That doesn't sound like a confirmed diagnosis btw. Have you actually seen reports from your docs?

And have you spent any time in this forum? http://neurotalk.psychcentral.com/forum20.html

I have not posted much but I am a frequent visitor. However I am unable to hold back on my frustration any longer. I, like most CRPS patients, live in a true hell most, if not evey day.

I started with CRPS in mt right leg and it has since moved to my left leg. You mention pain of a 1-2/10 after walking around. I can no longer fit into normal shoes becuase of the swelling and the pain due to having something touching my feet.

As you can tell by my name I am a nurse. Because if this horrible condition I can no longer perform my job. CRPS has taken away one of the things I use to define myself, something I worked hard to become.

You speak of your foot being pink/red sometimes. Both of my legs from the knee down are eith purple or red at all times.

Some days I have to force myeslf to take a shower becuase I know the pain it will cause. I am a woman who cannot shave her legs becuase of the pain. This would not be an issure if I could wear clothing covering them, but once again having things touching my legs causes extreme pain.

You mention that you doctors are experts in CRPS. How many journal articles have they written? You cite articles frequently on here. i frequently use Pub Med as a starting point and I am curious as to where you obtain you information. One thing I have learned during my own experience, as well as my husband's who hold a doctorate in microbiology, is that if you look hard enough you can always find something that supports your beliefs.

I am not trying to be rude or come across like I am attacking you. I Just want you to realize that many of us have had to fight to get our diagnosis. If you ask any physican that is familiar with CRPS what they consider is the primary symptom is, they will say pain, extreme pain.

I just ask you to be mindful when stating you pain is outside the normal parameters of injury. Many of us would love to have our pain be a 2/10, even for one hour. CRPS has caused major life changes to many of us and our families.

Sorry for the long post but I felt I needed to share what I am feeling.

My main doctor said it was CRPS and wrote it on my reason for therapy.
Another Said it was and recommended the lumber block. The ortho said it was CRPS and gave me a local nerve block.

What reports should i be looking for?


I haven't spent anytime on that forum. Isn't Peripheral neuropathy simply a way of saying nerve problems in the extremities. This seems even more broad then CRPS. At a glance it seems possible one could say I have this as well. Both sound unpleasant.

Is there a particular reason you suggest I look into that? Something that moves me away from the CRPS camp into the PN camp? Who might I see that would have experience in that area.

Thanks

Neuropathy can be caused by many things. If your situation was acute I'd suggest finding a new neurologist. As neurochic stated before though, in a large percentage of cases, they won't be able to give a diagnosis anyway.

It's not uncommon once one doctor has made a diagnosis, for other docs to follow suit--especially if they frequently refer patients to one another locally.

If your doctors haven't needed to generate reports, than it's a non-issue.

I guess I don't understand why a diagnosis even matters at this point?

I'm sorry about your pain, I'm not going to pretend I know what your going
through.

Many on this forum have questioned my diagnosis from the start, with my mild
pain being the number one issue. Let me assure you, that i'm presenting my case
in hopes of getting guidance. I also do it because it pushes me to understand
my situation better. It also doesn't sit well to have conflicting advice (forum vs
doctors), as it leads me to believe that their is still the possibility I have
been misdiagnosed. That I might have some other neurological disorder. It has
of course, been suggested their is no certainty that anyone will pin down my disorder,
but i don't feel I have yes been excessive in my pursuit of truth.
I link to studies because it forces me to
research and learn. Sense you asked, i use Google scholar to search for
material. I lean towards reading studies as I'm more likely to understand and
trust them, then anything else.

The question seems to be "can you have CRPS and never have experienced elevated
pain levels (6-10)/ can you have crps with low pain levels (1-3)".

Which is a different question then "can you be diagnosed with CRPS and never
have elevated pain levels".

I have been using the new diagnostic criteria*1,
which is, as far as i can tell, the most up-to-date method of diagnosing CRPS:
It clarifies to me that the pain should be disapprobation in time and
intensity. Previously I had thought it could be one or the other or both.

To recap my pain intensity and duration:
Pain on occurrence: 5-7/10
pain while driving and walking over next 3 months: 1-3/10

Given that the normal healing time for toe fracture seems to be about 4-6 weeks
and couldn't (according to my doctors) account for many of my current symptoms.
I would argue the duration is well beyond normal.

The intensity is more problematic, I dropped a metal plate from 5 feet up
on essential bare feet, while it hurt, it didn't cripple me. I considered trying
to complete the work out routine. I also didn't lose sleep over the pain that night,
though i repositioned and elevated my foot for months after the injury.

So is this disproportionate? I... would say no. But i don't break toes often enough,
to be sure. However, the range of pain in CRPS isn't excatly clear to me. Many of you
report crippling pain. The 2014 outcome of CRPS type 1 a Systemic Review gave an over
view of intensities and address the question of weather you can have mild pain with
CRPS (lets avoid the rare cases of "painless crps"*3).

To summarize It stands to reason that their is a wide range pain, and it's
unclear if I would be an outlier.

So all that considered, diagnosis checklist is as follows:

*time 6 months past fracture still having syndromes , but not disproportional pain
1) alloydina - noted by doctor. Possible this is connected to the pain of walking or wearing shoes.
2) 6 Celsius temp difference as measured with sensor. - vasomotor
3) increased sweating and edema as measured by PT - sudomotor/edema
4) decreased ROM as
measured by PT & slight tremors** - motor/trophic
5) no other diagnosis that
better explains it.

** I have slight vibrations in the foot and leg daily. Not sure this counts as
tremors.

I have taken this to mean that I have 4/4 symptoms which is a .96 specificity,
a very very low chance of it not being CRPS.

I have never been unclear with my doctors on my symptoms and pain level. I have
made them read my detailed reports outlining my pain level at every stage (the
same history i posted here). Not one suggested it couldn't be CRPS due to the
pain level.

Is it possible these are characteristics shared by some other nerve related
disorder that isn't CRPS? If i recall other proposed diagnosis (by people on
this forum) have been:

*Pn
*normal healing process

Normal healing process seems highly unlikely, and I know nothing next to
nothing about PN.

In conclusion. I'm as yet unconvinced of anything, from the diagnosis, to
the possible outcomes.If their seems to be enough evidence to warrant another seeking more opinions
i'll go that route. I have yet to see a neurologist, as I had assumed a
CRPS specialists (generally anesthesiologists?), would be better suited to diagnosis and treat me.

References
================================================== =====================
*1: Complex Regional Pain Syndrome: Practical Diagnostic and Treatment
Guidelines, 4th Edition

*2: The 2014 outcome of CRPS type 1 a Systemic Review

*3: Can complex regional pain syndrome be painless?

Hi HarryDresden
if you have done copy / pasting from any website that has Copyright (C) or All Rights Reserved anywhere on the page then you will have to edit it out and just give the link to where you found the info

We cannot allow copyright material to be copy/pasted here

The references are from the below articals and journals both supplied online for free by RSDS.org.

CRPS: Practial diagnostic Treatment guidelines

g The Outcome of CRPS Type 1: A systematic Review

The copyright seems to be here:

We have compiled a list of articles on research and treatment of CRPS. You may use this for your personal use, put please heed the following warning concerning copyright compliance:

I'm not sure if my use could be considered any of those. I updated it and removed the text, i'm not sure how much it adds out of context anyway.

Link to the McGill Pain Scale:

http://www.rsdhope.org/mcgill-pain-i...in-ranked.html

That's certainly what the majority of us experience. The only type of pain that is supposed to be more severe is from terminal cancer.