sometimes i say

, my nervous system became infected when i broke my leg, there was an open would and the tissue infection infected my nervous system.
this is eaisly accepted. They can visulize this. it ends a lot of fruitless talk becaue if really explained no one ever gets it.
or really doesnt want to know.

sorry but im a little down today, but it is a good question to post. thanks dc

JetJock,

I love that !

I'm hoping one day my 2 sons (14 and 15) will have an epiphany like that

I find that no matter how I explain it, people only get it if they spend several days with me under the same roof, or they do their own research on the internet. Even still, some people are just not empathetic. Some seem to harbor the feeling that illness is a choice, if that makes sense? Even with diseases like cancer.

Thats because if they view diesases as a chioce..that lets them off the hook of chosing to not have to suffer with it themselves..Deep I know but I thing holds merit..


Kathy

People look confused and perplexed when I try to explain RSD...it's so exasperating to try and convey what it is.....
Often I will suggest that they look it up on the 'net for a complete picture of the disease..

Lately, I have been saying it is similar to neuropathy..I also tell them the nerves in my body are short-circuiting, causing deterioration of muscle, bone, etc, along with excruciating pain....particulary burn pain....
they seem to understand this....sometimes

I have tried to explain every way I could and noone really understands. Finally, when I decided to call it nerve cancer people could understand. If someone thinks about it they are similar. Once you have this it can only go into remission. When it decides to spread there is no stopping it. The constant pain is similar, and we all know what the rest of the story is.

We are going to have a real tough funeral to attend. Alot of distant family and people there do not know or understand what is wrong with my hand/arm and give hugs. OUCH! My husband came up with the idea last night that maybe I should where a sling, then I have a visible problem. Do any of you do this? Other ideas?

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!

Freezing your arm is a BAD thing. It was something I instinctually did afrter the RSD kicked in and before I was diagnosed. (It took hypnotherapy to break me of it.) It will just make your pain go up higher to your shoulder, and down your back. And people will be more likely to TOUCH a limb that has signs of injury. Keep your hubby on the side of your effected limb as a barrier. If someone goes to shake your hand, give them your "good" one. I shake with my left to everyone's confusion. I give one sided hugs. Your relatives will have to know sooner or later. If you can't stand to be touched, a quick "sorry, I can't, nerve pain..." works. If lidoderm patches work for you, slap on a couple and wear long sleeves. If you use pain meds, take them beforehand, so you're at a lower pain baseline when you arrive.

You crack me up...thats sooooo good
I too use responses...what ever you think of at that particular moment. This is great. I even can get confused is it the FM or the RSD