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 FABulous site if you havent already found it.

http://www.butyoudontlooksick.com/fr...k-com-readers/

1 T-shirt will say it all -

I have

RSD/CRPS - http://en.wikipedia.org/wiki/Complex..._pain_syndrome

FM - http://en.wikipedia.org/wiki/Fibromyalgia

TOS - http://en.wikipedia.org/wiki/Thoracic_outlet_syndrome

CFS - http://en.wikipedia.org/wiki/Chronic_fatigue_syndrome

DYSTONIA - http://en.wikipedia.org/wiki/Dystonia

MYFACSIAL PAIN - http://en.wikipedia.org/wiki/Myofascial_pain_syndrome

Did I miss anything? Dont ask...its all in my brain

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!