Dear Pain Matters blog readers,
An excellent, 20-minute documentary video (available on DVD) about the impact of complex regional pain syndrome (CRPS) on 4 CRPS sufferers has just been brought to my attention.
This video/DVD is called:
DVD: LIVING A LIFE IN PAIN:
THE STORY OF RSD/CRPS
By Sarah Panas
This DVD, by film maker, Sarah Panas (Winnipeg, Manitoba), can be ordered from PARC for $10 plus shipping:
This video is also accompanied by a 5-minute trailer:
‘Living a Life in Pain: The Story of RSD/CRPS – Trailer’:
Four (4) CRPS patients are featured in this documentary, plus trailer.
Pain Specialist (Dr David Shulman) and Psychologist (Dr Matthew Bailly) are also interviewed. It is worth adding that in 2008, Dr Shulman rode halfway across Canada on a bicycle, totalling 3,750 km, to raise funds for CRPS research!
Here is a sample of eye-opening comments about CRPS made by the 4 CRPS patients (excerpts only – see video and trailer for full comments):
CRPS Patient #1, Richard Panas, who uses a cane and a wheelchair due to CRPS, describes the painful experience of CRPS as follows (quoting):
“…. RSDS [aka CRPS] …..is a nightmare! It’s the worst thing ever! …..I could have plans to go somewhere, and I can’t even walk! ….and I don’t think there’s too many people that’ve been in that amount of pain………I used to explain the pain in my leg like someone ripped open my skin and was scraping the bones with a spoon, and it was the best way I could explain the pain…..and if it wasn’t for my kids, Sarah and Jamie, I really believe I wouldn’t be here.”
CRPS Patient #2, Paula Orecklin, a young CRPS patient who uses a cane due to CRPS, describes CRPS as follows (quoting):
“….At this point, I am literally waiting for the next medical breakthrough. I’m waiting for the next paper, because I have tried it all…..Even though you can’t see my disease, it is there. Believe me when I say it! … This is as much pain as you can be in, and keep going, as far as I can tell….It’s hard to look in my future and be all that optimistic, sometimes.”
CRPS Patient #3, Willy Noiles, CRPS patient and PARC Board Member, adds (quoting):
“I would describe the pain as a burning pain. It’s almost like your leg is on fire at times, and at other times, it’s almost like someone is jabbing something into you.”
CRPS Patient #4, Helen Small, CRPS patient and PARC Executive Director, states (quoting):
“The pain is out of proportion to the injury. So if you drop a coffee jar on your foot and you can’t walk, people don’t believe you….”
Some sobering statistics are also provided in the 5-minute trailer (quoting a sample):
“1 in 60 has a lifetime risk of getting RSD/CRPS…..”
“There is no cure, or way to test for it.”
(Note to blog readers: More on this in future blog posts…)
“Reflex Sympathetic Dystrophy Syndrome, or Complex Regional Pain Syndrome (RSD/CRPS) is a neuropathic pain condition.”
“Treatments vary from analgesics, opioids, antidepressants to medical marijuana.”
So where to from here?
We know that there are 1000’s of CRPS patients in the world.
The good news is that there are also 1000’s of pain researchers as well as 1000’s of pain specialists out there.
On top of this, there are millions and millions of compassionate people.
So let’s all put our heads together, and see what we can collectively come up with to help patients with CRPS as well as other nerve pain disorders.
Let’s end on a positive note today, and tell these CRPS patients that they are not alone. We will be there for them, and with them.
This Pain Matters blog is about finding papers and articles that may offer hope and inspiration for CRPS patients, as well as other patients with nerve pain.