CLOSED: This discussion has concluded.

Complex Regional Pain Syndrome

by tdykuvluanrrmetedu,

Looks like no one has posted on CRPS yet so here goes.


Also can whoever is moderating these comments get rid of the "This cure works!" and "Try this alternative health quackery!" posts please? That's just really frustrating noise.


CRPS is basically part of your peripheral nervous system, after a severe injury, not healing correctly - it re-wires the autonomic nervous system top appear as though the injury never healed. Even if it does.


So, e.g., you have an injury, or even a surgery, but instead of getting better as you heal, the pain gets worse. The peripheral nerve or nerves that were damaged are still screaming at your autonomic nervous system "I'm still injured! Keep sending pain signals so the injury won't be aggravated!"


That's why you have loss of function. The other effects are so bizarre, they're not even understood as symptoms, unless EVERYTHING is ruled out first, and the symptoms are clustered or connected together.


Eventually, once these miswired signals keep happening, the central nervous system goes "better make this permanent" and that's CRPS. Your central nervous system basically takes a big old dump in your brain and goes "Make lots of pain receptors! Lots and lots and lots of them! Keep pushing out those pain signals! Flood the gates!"


It's literally all in our heads. But because it's a vanishingly rare syndrome, with poor prognosis for the sufferers, we're basically left to fend for ourselves.


In between the noise of the drug-seeking "Gimme my marijuana I'm totally in pain see!" idiots. Or people who unwittingly get hooked on opiates, that make the non-pruning of pain transmitters WORSE not better.


NSAIDs do this too FYI if you've got CRPS. Along with destroying your stomach which is always fun. The Tylenol destroys your liver though so whatcha gonna do. I always get bad rebound pain from acetaminophen FYI. YMMV etc.


The doctors see us, and figure we fall into one of those two categories too. Or they unwittingly put people into those categories by prescribing cannabis or opiates.


In the meantime there are all kinds of quacks out there saying "Chiropractors will cure you!" or "Drink my mineral bleach Bible blessed silver and God will heal you!' Or "Pray the pain away! your faith is weak!" etc.


But people can get desperate, when the doctors have no answers. I get that. But it's too much noise. The sooner you realize that, the better off you'll be. The sooner the CPTF can cut down the noise the better off we'll all be.


I was desperate enough to start trying every single theory floated in every single small-sample-size case report and international study I could get my hands on. I eventually gave up on that, though I've got one more option I'm waiting till I can see my PCP to get a script for.


No, I'm not going to post it here, because it's one study, that wasn't even a real study, it was a study of a bunch of different studies and it might not even work FOR ME let alone anyone else.


Which is the problem. There's no one-size-fits-all one-pill-and-done treatment out there.


The biggest challenge is to keep going. To work or school or both and deal with the household and everyday tasks and everything.


What helps is sheer stubborness but that's not always a positive character trait.


Doctors need to understand what pain is, what causes it, and what causes it to become malignant instead of something that helps you from injuring yourself further. People who feel NO pain have the opposite problem; they can kill themselves and not even realize it!


Did I mention chronic pain adversely affects your cognitive function? So yeah that's why this entry is a rambling mess. Of all the things I've lost I miss my concentration and my short-term memory the most.


That's it. That's all I've got to say.

Thank you for your interest in this consultation with the Canadian Pain Task Force towards an improved approach to better understand, prevent, and manage pain in Canada. 

The online consultation is now closed, and written submissions are no longer being accepted. 

Feedback provided from the consultation will inform a report identifying best and leading practices, potential areas for improvement, and elements of an improved approach to pain management in fall 2020. 

For more information on the Task Force, please visit the following link: https://www.canada.ca/en/health-canada/corporate/about-health-canada/public-engagement/external-advisory-bodies/canadian-pain-task-force.html  

Keep in touch with us via email at CPTF cptfsecretariatsecretariatgtcsld@canada.ca 

Sincerely, 

Canadian Pain Task Force