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Originally Posted by LIT LOVE
It could certainly be some form of neuropathy, which
there are several forms of and can include every symptom you've listed.
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Maybe, i'm not sure how to pursue this possibility.
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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.
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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.
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My previous post was not directed at you personally but about my
frustration with doctors that exaggerate their RSD/CRPS experience.
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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
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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.
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I have no words. Thanks for sharing.
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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.
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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...
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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.
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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.