Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 07-25-2007, 08:40 PM #11
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Ahh... just found this site:
http://www.americanmedical-id.com/ma...ocationinvoked

They have sport bands too, so they won't irriate the RSD wrists so much by sliding back and forth like a bracelet type would. I am planning on one of these (though they do look more "childish"- I don't care! Comfort means more to me!)... HTH someone!
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Old 07-25-2007, 08:42 PM #12
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I just got mine a couple of weeks ago. it has Reflex Sympathic dystropy, the neurontin, allergic to metal..then my number. they keep all the med info and all on file. I got a sports band and I can't wear the real nice ones. they are only 19.00. I got mine in all black. take a look at them
Mary
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Old 07-25-2007, 08:55 PM #13
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Quote:
Originally Posted by lostmary View Post
I just got mine a couple of weeks ago. it has Reflex Sympathic dystropy, the neurontin, allergic to metal..then my number. they keep all the med info and all on file. I got a sports band and I can't wear the real nice ones. they are only 19.00. I got mine in all black. take a look at them
Mary
Found ones just about that price, Mary:
http://www.medicalert.org/Home/HomeC...Catalog=Sports

Thanks for the help!

I decided on:
my full name,
Reflex Sympathetic
Dystrophy (CRPS)
Medication list in
Wallet *** *** **** (phone number- gee, I forgot that first time around! )

HTH someone... I went with the first site I posted, I loved the purple with light blue.
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Old 07-25-2007, 10:05 PM #14
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I have a Red thick rubber one with soft snaps that say; RSD awarness.. but Ness, I LOVE THIS!! thank you!! Love, Desi
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Old 07-26-2007, 07:33 AM #15
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Ness,
that is the same one that i have. My watch is a black plastic band that I wear on my left wrist. I wear my medi one on my right, and it really doesn't look to childish. I don't think I would wear it to a formal, but for me, it look ok with most things. it is very comfortable also. Give it a try. I love mine. also, mine came with a card for my purse with the same infomation on it, and a sticker for the car window saying that someone in the car has a medi alert problem. that way, if in an accident, they would see it on the window. I feel much safer now that I have it. good luck on yours.
Mary
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Old 07-26-2007, 08:48 AM #16
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Hi Everyone.

Just want to comment. I just ordered mine also. Most doctors don't know what RSD stands for - surprisingly enough. I put Reflex Sympathetic Dystrophy - See meds. Then I have the printout of my medications in my wallet. Because my medications could change - I didn't want to put any specifics.

Also - just a note - I used to work at an ambulance company. They are trained to look for a bracelet in case of an emergency. If you have something that says to see medications, they will look in your wallet. They will probably look in your wallet anyway - well the Police will in the event of an emergency. So, if you have your medications along with your DL in the same place, they'll get all the information they need. I am able to get a printout of all information - including surgeries - from my physician on their website. So, I can print an updated sheet anytime I need to - without needing to engrave it on my bracelet.

Just a thought.
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Old 07-26-2007, 12:16 PM #17
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Default Hi Everyone,

My thought is that you have to be lucky enough to get ambulance people and Drs. to even know what to do if they see the bracelet or if they care.

When I was taken to the hospital by ambulance 2 weeks ago, my daughter handed the ambulance guys my magnet for my VNS, it's a bracelet, and they thought that it was the VNS itself. I was puking my guts out and Susan wasn't with them to explain that it shuts down my VNS.

When I got to the hospital the Drs. in the ER could have cared less also. I never stopped throwing up the whole 6 hours to tell them what to do with it. She also gave them the card I carry and they didn't bother to call anyone to see what to do about it.

Of course, all of you might not have a hospital that has the last name of Moore and people changed it to Morge. LOL

It's great to have that info. but man getting Physicians to give a s**t is another thing.

Ada
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Old 07-26-2007, 03:10 PM #18
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I have a card in my wallet which says "extremely sensitive to pain, noise, and light", I should add "do not revive" but that's a little too scary.

It lists the medication and condition so any doctor should have some sort of idea of the problem and at least perform an epidural if necessary.
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Old 07-26-2007, 04:11 PM #19
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I have just got one that you can write on as my meds and condition change as time goes by.

I'm going to write

RSD, HMS, Dystonia, Osteoporotic. Has conscious fits.
Takes Ketamine, Diazipam, Dihydrocodeine, Nortriptylene, Paracetemol, Ibuprofen, Domperidone, Baclofen, Trihexyphenydryl. DO NOT PLACE IN WITHDRAWEL.
EXTREMELY SENSITIVE TO LIGHT, TOUCH, SOUND. DO NOT TOUCH UNLESS ABSOLOUTLY NECESSARY.
Hoist dependent. Fixed joints.

Contact Pain management clinic before any procedures are done as preventative measures are needed to prevent worsening of the condition.

etc etc etc

What do you think?

Love ya

Froggsy xxxxxxxx
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Old 07-27-2007, 04:33 AM #20
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I got mine a few days ago, here's what it says:

AIDS,CRPS
ASTHMA,
EPILEPSY,
IMMUNOSUP-
PRESSED

Then has the ID# below. No name, addy, or personal info at all. That idea bothered me.

They will NOT put "DNR" (do not resuscitate) on it... I asked.

As far as anyone ignoring the bracelet.... oh well! The main reason I wanted it was to protect any would-be rescuers. I wanted them to know I have aids before they do anything they might regret. If their own ignorance keeps them from figuring that out, then I at least am blameless.

My big issue is with the clasp on the bracelet. I guess you are supposed to put it on and leave it permanently, but I only leave the house twice a month,
so wearing it every day seems ridiculous. But that clasp is a huge pain in the you-know-where.

I guess the answer is to make my own bracelet, using the clasps I want that are easier to open/close. But will anyone recognize it as a Medic Alert bracelet if I make changes to it? Hmmm.

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