As I am sure you have been asked, time and time again “Please rate your pain from 1-10, 1 being the least and 10 being the worst, how much pain are you in?” Now, I would like to hear from you on this subject because my first thought has always been this:
First, they would need to grasp what my definition of what my 1-10 is. So I have explained it as such, “You know when you have worked out really hard, or maybe utilized muscles in a different way for an entire day and how soar your body is the following day? Well that feeling, for me, that’s a good day, as in, let’s go run threw the fields and jump and play So how does one actually rate that on your scale of 1-10?”
So has anyone else figured out a different way to explain that to someone without Arthrogryposis? Penny for your thoughts?
Also, as you have aged, has your tolerance weakened? I noticed lately my joint pain is greatly increasing. From the sharpe, stinging sensation that could last for a few hours to a few days, to the un-easy feeling of the joint just needing to crack but never does. That pressured feeling that only gets relieved by cracking or popping it but no matter how much you try to stretch it, it just will not let up.
Here is the skinny, Arthrogryposis Multiplex Congenita (AMC) is a congenital neuromuscular disorder characterized by muscle weakness and associated joint contractures. At birth, babies frequently have clubfeet and flexed wrists but can also have contractures of any joints in the body. Muscle weakness is associated with a defect in the anterior horn cell of the spinal cord. This area of the spinal cord can be considered the power plant for the muscles. Since it supplies the electrical current from the spinal cord, to the motor nerves which feed the muscles which they move. AMC has similar basis of anterior horn cell disease as polio does and with aging, it has similar problems with over use issues that polio does.
Little is published about Arthrogryposis and aging but of the few articles, it supports, as the person ages, they become much more disabled.
What we all know, who live with this, is that it hasn’t stopped any of us from doing what we wanted and how we wanted. From my perspective and possibly some of yours, I learned how to crawl, talk, walk, tie shoes, run, jump, ride a bike, think for myself, go to schools, drive, go to college, find a job I love, just like everyone else. The only difference, aside from the obvious, I can truly say, I figured it all out as I went, as I am certain many, if not everyone else has.