Complex Regional Pain Syndrome “CRPS” and Reflex Sympathetic Dystrophy Syndrome “RSD” are both names used to describe the chronic neurological syndrome. The Syndrome used to go by RSD, but over the last few years, has changed names to CRPS. You’ll find literature under both names.
According to the Reflex Sympathetic Dystrophy Syndrome Association, there are two different types of CRPS ~ Type 1 being defined as RSD and Type 2 being defined as Causalgia. There are so many different schools of thought on this one and many do not agree that there are two different types arguing that it’s all the same syndrome. None the less, they both refer to an injury to a nerve, or soft tissue, that does not follow the normal healing path. This injury could be anything from a fall to open heart surgery – the severity of the injury does not appear to matter. Most frequently the symptoms of CRPS are severe burning pain, pathological changes to the bone and/or skin, excessive sweating, swelling and extreme sensitivity to touch.
CRPS has been regarded as an extremely painful syndrome, but just how painful is it? Well, according to the McGill pain index, which is a standard pain scale created in 1971, CRPS ranks the highest above arthritis, shingles, natural child birth and amputations (to name a few).
Yes. It’s THAT painful.
A lack of a psoriatic arthritis diagnosis, 2 surgeries within a 3 month span and avascular necrosis in my femur all created the perfect storm for this lovely syndrome to develop in my left leg. I remember the first day I developed it. I’ll never ever forget it because it was unlike any pain or anything I’d ever experienced.
I awoke in the middle of the night to a severe stabbing, sharp pain on the medial side of my left knee. It really hurt and kept me awake half the night. Upon waking up in the morning, I figured it’d be a high pain day and tried to take it easy. I iced it, stim machined it and made sure to elevate it. I was going to my friend’s house to watch WVU play Texas Tech, so I got ready and pushed through the pain. I figured a few drinks later in the evening would get rid of the pain. Getting to their house, I remember I SLIGHTLY hit my foot off the step up into their house. That slight tap sent a lightening bolt of pain throughout my body. As the night went on my pain kept increasing and increasing. I figured, ah! Crown shots will help! (Plus, we were beginning to lose… like pretty bad. I think the score ended up being like 49 TT 14 WVU) One shot, turned into two, and then three and then I started realizing that I wasn’t sure crown was going to be able to solve my problem. I ended up calling my parents to pick me up (everybody was drinking!) and take me home so I could take some pain meds.
From that point forward it continued to get worse and worse. Of course my ortho thought it was just me overworking it in therapy so he suggested kenalog injections, pain killers and ‘rest’. It wasn’t until a little over 2 months later that my parents ended up taking me to the ER because I couldn’t even fit my pants over my knee due to swelling, the touch of the fabric from pants (if I could get them on!) sent my skin crawling, I hadn’t slept in weeks because the slightest movement caused ridiculous jolts of pain through my leg and I couldn’t keep my body from shaking because of the pain. It wasn’t until I found a pain doctor that I received a diagnosis.
Over a 9 month period, with medication, monthly nerve blocks, massages and eventually acupuncture and cupping I sent my CRPS flare into remission. I can honestly say I feel so completely blessed and lucky to have been able to send it into remission. There are so many CRPS fighters out there that I know have been battling fires for years ~ I pray for you every single night. No one could ever begin to understand your battle unless they’ve stood in your shoes.
These days I take every single act into consideration and make sure that it wouldn’t risk another CRPS flare. I also battle several other health conditions which I am trying to fight with every other non-surgical option there is on earth. I know that I’ll need a knee replacement. That replacement may be needed as soon as this year and as long as 10 years from now. I cannot even begin to express to you how much I will need to weigh my risks and benefits in that situation.
The following resources would be beneficial for any CRPS fire fighter:
I truly believe this link is the best list of patient links I’ve seen CRPS Patient Helpful Information Links
For a newly diagnosed CRPS warrior I would send them here and tell them to click on the ‘For Newcomers’.
It’s hard to understand what you’re going through unless you are actually living with CRPS yourself. The following personal blogs are extremely helpful to follow and will show you that you’re not alone: