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!

Your Welcome,
Their appears to be several people with both. Or get miss DX with one or the other. Here are some personal articles on that. Some even suggested that lyme causes RSD.

http://flash.lymenet.org/scripts/ult...=034662#000000

http://flash.lymenet.org/scripts/ult...=029767#000000

http://flash.lymenet.org/scripts/ult...=001575#000000

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

Hey nimcjo

I love the wheelchair one - I have used that one before!!! (I get really ratty when you explain why RSD is, and then people look at me expectantly and go..... so you can't move......... WHY??? - or you're in a wheelchair.....WHY?)

Hey nimcjo

I love the wheelchair one - I have used that one before!!! (I get really ratty when you explain why RSD is, and then people look at me expectantly and go..... so you can't move......... WHY??? - or you're in a wheelchair.....WHY?)

I know we should all be educating everyone on the disease, but I just appear to be missing the evangelical ability to explain my illness to the masses and make them understand it...also... a lot of the time I don'r want tot alk about it...

I can't remeber if I ever told you the amputee story?

Lydia is one of my best mates, and before I went to uni we spent most of the time together. But I never really explained what was wrong with me - she knew I had RSD, really bad pain and couldn't really move (Spastic!) but that was about it... We were planning on going on holiday together with some more mates and attempting to search for a wheelchair accessible house....

.... we asked her dad for help... and discovered.......

.....................he thought I was only a torso!!! (I had explained that the pain was similar to phatom pains) ....."you don't need it to be wheelchair accessible, just put a baby sling across you and take Rosie's arms and legs off and carry her round the house!!!! then you can borrow any house!"

Well. after that one..........................I have always been a little better at explaining what's wrong with me to mates!!

You'll get your own style....I know I hate it but telling your mates is important - they are your best ally - mine can look at me and sort of tell what's going on and then change stuff so that either I can rest or participate etc... and they are going to be your "closest" supporters and cheer leaders..

Anyway! take care... and I still love the wheelchair one.. (when I arrived at uni they said "well it's only up 2 flights of stairs and 400 yards away!, can't you do that? NO, I CANT EVEN STAND SO THAT's going to be difficult!)

Good luck!!!

Rxxxxxxxxxxxxxxxxxxxxxxxxxx

Lol. Yeah. People do the same to me with the wheelchair thing. I finish explaining and they are like, so your in a wheelchair because....?? They sometimes think I'm paralyzed. I was kinda shocked when my friends came up and asked me if I was paralyzed. My brother actually thought so for awhile too. He still doesn't have much of a clue of what's wrong with me. He just knows I broke foot a year ago, something is wrong with both feet now, and I can't walk. Such a smart 7th grader...... yeah. I'm still working on how to explain it to him. Can't use a stupid explanation, but I have to simplify it and make sure he pays attention to the story. I'm never again gonna try using big words to explain it to him. He was giving me the funniest faces though.

BTW, does anyone have any way to explain it to a younger brother in the 7th grade in a way he will understand?

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.

Try explaining that your nerves are overactive, and constantly send the wrong messages to your brain saying "pain".

To quote frogga:
"my joints don't work properly because the movement parts of my brain are over written with pain signals so my nerves don't send out the right messages."

Maybe your brother could understand that?

Or do you think he could understand some of what DayDreamer said?

How old is he? I have siblings and some understand. Reading this might help:
http://www.rsds.org/pdf/Recog_Undrstd_TreatRSD_530.pdf
(I am actually going to print some of these out for other people)

Also came across this:
http://www.rsdescape.com/RSD%20In%20Children.htm

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.