CRPS (RSD) awareness

[JimC]

First, a very big thank you to the DIS for permitting me to post this.

This is to raise awareness about a horrific disease called CRPS (Complex Regional Pain Syndrome) or as some know it, RSD (Reflex Sympathetic Dystrophy). “The easiest way to understand…is to think of it in terms of an injury to a nerve or soft tissue…that does not follow the normal healing path. When…present, the pain is out of all proportion to the precipitating event, and continues well after healing should have occurred. The condition becomes chronic” and disabling. There is no known cure. There are treatments to manage the pain, but it is critical to have an early and accurate diagnosis for that treatment to be most effective.

My wife, Nancy, has CRPS. Twenty years ago (1996), on her way home from opening a home care case she was hit head on. That accident crushed her right foot and was followed by a tortuously slow path to an accurate diagnosis. As a result, it eventually ended her career as a pediatric nurse.

Nancy has since become an advocate and founded a non-profit, Partners in Pain, to assist patients with this disease to obtain and pay for treatments and the associated medical travel costs. She was contacted by Charles Mattocks who wanted to get involved and give this disease a voice. The preview below introduces the film, Trial By Fire, and provides background on why and how it got made.

https://vimeo.com/ondemand/trialbyfiremovie/172480999

Thank you

 

[King Schultz]

Thank you for posting this; it's something I wasn't aware of.


I'll make a point of watching the documentary.

 

[nancygirl1]

Funny you should post this now. I was talking to my physical therapist about this exact thing just last week. She thought that I should talk to my Dr. about it. I was hit from behind by a pickup truck the end of last year and seem to be getting worse instead of healing.

This might be the message I needed to read and the push I needed...

Thank you!

 

[maxaroni]

I am not sure if it is the same thing but can sympathize with your wife. My mom had a bleeding stroke and one thing that was affected was her right leg. She would scream in pain and nothing could control the pain. She had the stroke in '08 and the pain continued until she passed away in '14. Morphine would sometimes take the edge off but she could not live on that as she would hallucinate and she'd have to be bedridden as she would become so out of it. She was given gabapentin and we didn't think was helping so took her off of it and the pain became worse. She couldn't get too high of a dosage as she had kidney disease. Insurance didn't approve Lyrica for her, which the doctor wanted to try. She was also put on Cymbalta to try and help the pain.

For her, I believe it was thalamic pain but it may be close to what you are speaking about??

 

[Merida43]

I can totally sympathise.

I had orthopedic surgery after an injury in 2014 and remained bedridden for two years, then in a wheelchair for another year because of CRPS in my right ankle. Even now I cannot wear regular shoes or socks and will be in unmitigated agony for weeks if I am bumped/nudged even lightly on that side.

I am terrified of the crowds in Disney. Last time we visited was during my wheelchair phase and I had my leg fully out in front of me as it had to be raised (I'd also had a DVT after surgery). So many people walked straight into it, assuming that my wheelchair was a regular one and not realising until they were falling over me that it wasn't...and then yelling at me because their lack of care was apparently my fault.

I'm out of the wheelchair now for regular every day movement around the house, but I'm planning on still taking the wheelchair to Disney for our next vacation in 2019, simply because I just do not dare try to navigate through the crowds in any other way. Getting my foot nudged or stepped on could not only ruin my entire vacation with crippling pain, but necessitate further nerve blocks under general anaesthetic. :/

We always notice at Disney with the wheelchair though that it brings out the best in some people and the absolute worst in others.

 

[yesdnil]

I have CRPS as a result of a military training injury! Horrible disease. Wouldn't wish it on my worst enemy.

 

[Merida43]

I have CRPS as a result of a military training injury! Horrible disease. Wouldn't wish it on my worst enemy.

That's exactly how I feel as well. I'm sorry to hear that you suffer with it, especially given the circumstances. Hugs of sympathy and solidarity to you.

 

[Domo]

My mum has this, albeit in a VERY mild form. She slipped up one day carrying a coffee mug, and the mug shattered and sliced her hand up something bad. Now she has to live in pain with a hand that doesn't quite work properly. Still, it could have been a LOT worse. I mean, she's not in constant pain or anything and the limits of movement in her hand are minimal.

Still, DEFINITELY a problem to get out in the public eye!