Hi Their,
I want you to know you can get a tick bite, and have no neuro. SX for 2 years. It can come from the grass, wood area etc.., it doesn't have to come from any pet. I am going to have this ruled out. Here is a link on it. Hugs, Roz


http://www.ilads.org/files/burrascano_0905.pdf

Thanks for the info! I've been started on doxyclene, and my doc says that if my blood tests come back positive, I should still be ok, because it was caught early. Cross your fingers for me!

Haha rosie. lol those are pretty funny ways of explaining it

I don't come up with really creative ways of explaining it. I'm still working on it. Depending on the age of the person, if I know them, or whether I'm in the mood, I say either:

-I broke my feet
-Long story (if i'm just not in the mood)
-Something is wrong with the nerves to where they always tell my brain my foot is broken
or my all-time favorite
-Nothing, I'm just in a wheelchair for the fun of it (some people actually believe this)

It's funny explaining it to people that don't speak english that well. They are like "what wrong with you feet, they hurt?" Then you toss in the words "sympathetic nervous system" and "reflex sympathetic dystrophy" and "CPRS" and they make really funny faces. lol



I really need to work on better explanations.... mine kinda suck

Usually I just say it's an old injury. If they persist then I tell them it's a neurological condition caused by an injury getting progressively worse instead of better.

I get asked quite a bit since I have to wrap my hand to keep it from hurting. I've tried gloves but they cause pain.

I just sing " BRAIN DAMAGE" [Dark side of the moon] to people who think i am normal and should able to get and go! Its saves me explaining to people who do not understand whats its like.I used to go around like a loop,repeating the same things all the time. Sometimes i felt like a doctor mouthing medical jargon.

These posts are soooo funny!

I'm sure I'm not the only one with this problem; a lot of my in laws could care less what I have. All they know is that I'm a "leech of the system". Then when one of them has a minor surgery it's as if the end of the world has come and I could not possibly understand the pain they are in. What?

Try this: one of my children needed to do a research paper for her high school physiology class. She decided to do it on RSD. After two weeks of research and questioning my pm doctor, she had an epiphany. She came up to me one night, wrapped her arms around my neck and said, "daddy, I had no idea. I'm so sorry for not understanding for so long", and then gave me a great big kiss. That made up for a lot of time spent in quite desperation as my family went along, not noticing the suffering.

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