Quote:
Originally Posted by NurseKris
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.
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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?