I have a rare nerve disorder called Complex Regional Pain Syndrome (CRPS), that started in May 2018 in my left knee and gradually is now through my entire left leg and lower back. The nerves are basically at a 10 on the pain threshold all the time and goes even higher if I even rub or scratch my leg and it prevents me from putting any pressure on the leg, like standing. If I try, beside the feeling of a tire iron going through my knee, I will get a sudden pain in the middle left side of my back and a migraine will start over my right eye. I had been using crutches until October of 2023, when suddenly the pain started in my right knee. This prevents me from putting any weight on either leg and I am know having to use a wheelchair to get around.
The most common cause of this illness is a complication from surgery and almost all other cases are in the hands, arms and feet and it’s now unusual for the condition to move to connected areas or other parts of the body. There has only been 1 other case that has started in the knee and that was after a surgery. It took over a year for an internist to diagnose my condition, since there is no way of defining this condition. You have to fail three different tests to prove that you have CRPS.
Updates (5)
October 8, 2024
In October of 2023, my right knee went out and all the usual tests were negative. This meant that the CRPS had finally hit that knee and I couldn’t use crutches any more. The CRPS has progress rather quickly since then. It has gone across my pelvis to the right hip, which means that I have difficulty sitting on any hard surface. This means that I have to take short showers, since I have to sit on a shower stool and am constantly moving around on the stool.
Around the middle of July, I had a really weird episode, where everything below my arms started to contract and every nerve increased up significantly. Both knees tried to go through my chest. None of the tests showed anything wrong with me at the time. Again, we just put it under the odd rarity of my type of CRPS. I barely got out of bed for several days and my ribs constantly hurt and made it difficult to sleep. 4 days later, I was trying to get out of bed and at least 1 rib popped, which was really painful, and the next day, the pain in my ribs started to decrease to a manageable level. The pain hasn’t completely gone away and in the last couple weeks, the pain has started to slowly increase. I thought that I had irritated a left rib from to much exercise but 2 days later, it hit my right ribs and has worked it’s way to the center of my chest. This has made it very difficult moving from my wheelchair to the couch and the bed, due to the pressure required to lift myself up and down. It also makes it difficult to stretch my arms very far from my torso. I don’t live in handicapped housing, so I can’t reach the controls on the stove or to reach the ingredients to do something I enjoy to do, baking pastries and bread.
September 29, 2024
We took a couple days to get to Arizona because my doesn’t really like driving pulling a trailer and she didn’t want me to drive a lot per day due to all the sitting required and how painful it was for me sitting for long periods of time. The ferrets did okay during the trip but the dog wasn’t overly happy. Too much sitting and the weirdness of the weather and driving too fast made him unhappy.
We had arranged an adults only gated apartment community that accepted pets before we left Oregon. It took over a month for our furniture and other belongings to arrive but we managed and found a great wheelchair for getting around and not having to use the crutches quite as much.
The insurance companies in Arizona are completely different from Oregon’s. In Oregon, you pick the individual hospital that’s close to you and has the benefits you want, so you have few options. In Arizona, you pick the insurance company that has the benefits you want, from a lot of different companies and then you get to pick the doctor’s and specialist’s you want to use. Within a year after moving to Arizona, I found an understanding doctor that got me into an actual pain clinic to try different procedures and they sent me to a physical therapist that understood my condition and got me doing exercises that helped to eliminate some of the swelling in my leg.
