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Originally Posted by InHisHands
Just curious... I am always having people ask me "how'd you hurt your arm?", "what did you do to both of your arms?", etc, etc, etc... all asking me "what is wrong?"...
So, how do you tell people what is wrong with you (what your dx is) easily?
Quite often at physical therapy I have other patients ask me what is wrong with my arms, legs, etc, and I have to try and easily tell them basically what is wrong... It is hard for people to understand, and they get lost, or ask a bunch of questions. I don't mind answering the questions, though, if I have time! 
When I was explaining it to a lady today, she just couldn't comprehend what I meant... and she thought I was *too young* to have it! 
SO, I have told people "it is a neurological syndrome, a chronic pain syndrome, and that basically your nerves are sending wrong messages to your brain, saying they are hurting...".
People wonder why I am at physical therapy for it. So, I try and tell them that I have lost a lot of movement, I need desensitization, strengthening and stretching; because physical therapy is known to work and you've got to keep the affected extremity moving.
So, how do you easily tell other people what RSD is, and what is wrong?! |
This is a fundamental question for us all!
I remember asking my neurologist how to answer it when I was first ill. She pulled out her textbook from medical and opened the page to a chart of pain levels. She said, "Tell people you have one of the worst neurological diseases you can have. And then tell them this". She showed me this chart that had pain levels, of which she pointed out three. She said, "Labor without pain meds is a Level 10. Cancer is a Level 30. RSD is a Level 40. There is no known condition in medicine with a higher pain level than RSD. That is what we were taught in medical school. That's what you can tell people".
Can you imagine? So that's what I tell people.
But here's another wonderful resource I've found that I have given to people who need to understand what I'm living with. A woman with RSD who is also a journalist wrote an article for a newspaper in Long Beach, CA called the Grunion Gazette dated August 13, 2009 titled "Documentary Aims to Raise Awareness of Disorder". The author, Jeanine Enriquez, tells what it's like to have RSD and the impact it has had on her life. You can find the article on the internet. It's a great way to let others know what you have in human terms.
These are two ways I try to describe this horrible beast that inhabits our bodies! If only we could make it vanish!