CRPS Medical Alert Bracelet
 

Hi there,

It's been awhile, hopefully some of you will remember me. :)

My surgery didn't go as well as we'd hoped. Well, it did and it didn't. I have gotten some function back but unfortunately the pain is so bad that I cannot use that function due to the pain.

At any rate, I have a medical alert bracelet but I'm thinking that I need to go ahead & update it to reflect my CRPS. I've recently developed a latex allergy anyway, so need to have it updated regardless. I just realized today when a doctor unfamiliar with my case went to *grab* my leg that I could be in for some serious hurts if someone did something similar if I were unconscious or otherwise unable to communicate.

So, do any of you have this on a medical bracelet? Do you just have your condition's name? I worry since so many people seem so unfamiliar with it. Just the initials? The whole name? See wallet card? What else?

Thanks.

Patty,

So sorry that your surgery was not a success, hopefully over time things will improve....

Where did you get your bracelet from? I have an orange "RSD Awareness" bracelet that I wear. But I think I should be wearing one that is the medical alert slyle that you are describing.

Thanks, and I sincerely hope you start to feel better soon.

XOXOX Sandy

Hi Sandy,

So nice to hear from you! I remember you! :hug:

The awareness bracelets are nice for sure. The problem with them is that if you're find unconscious or otherwise unable to communicate, emergency personnel have no way of knowing whether you personally have CRPS/RSD or whether you are just supporting a friend or loved one who does, know what I mean?

This is the kind of bracelet I currently have:

Medic Alert bracelet

but then I recently found this gal's online shop:

HillCountryIDeology

and have really fallen in love with her work.

And you know, having an excuse to buy jewelry and all :D I will take full advantage of it! I figure I deserve it after the past few months. But given the serious nature of these pieces, I do want to make sure that I go beyond the beauty to the actual utility and get the wording correct as well, you know?

I've often wondered wether I should be wearing one. My crps is my left hand/arm. I can't imagine what woud happen if I couldn't tell someone not to touch it.

Gratuitous self promotion..........

Can't help you on the medical alert bracelet, but some members here make RSD awareness bracelets. Feel free to pm me for info on bracelets like in my sig.

There is another poster here, Cindi1965, who makes european style RSD awareness bracelets (Pandora, Troll, Biagi style)

Welcome back PP,

I'm sorry the surgery didn't work out for you......a familiar problem for many RSD'ers. I'm thinking instead of just writing RSD or CRPS on the bracelet tag, you should make it RSD (L)leg to alert medical personal where the problem is.

StressedOut, I definitely would. You never know what punches our meds will knock us (which is why I landed in ER on Friday).

Finz, your awareness bracelets are beautiful. I will have to check them out!

Hi Pep! And everyone else!

I have been away for a while, too. But I remember you!

I have a medic-alert bracelet. It has RSD/CRPS on one line, My name and DOB. Third line says "Meds - see wallet list" and the fourth line has my husbands name and cell on it.

I didn't like the ones you can buy at the pharmacy, so I researched it and bought one from a really cool website called "Lauren's Hope". You can choose over one hundred designs or custom build your bracelet.

I had the same concerns as you about being unconsious, etc. Since I bought mine, that's one less worry (and we all need less worries).

Hope it helps! Glad to talk with you again!

Kim

Hi Kim, I remember you too! I had one of the Medic Alert bracelets from the (I think?) original company way back in the day, then I'd just reorder whenever I needed a new one.

This time around, I got tired of it and boy, I'm glad I did because I love this new one! I went ahead & ordered from HillCountryIDealogy (where I was talking about before) and I am sooo excited to get it). She is customizing it exactly how I wanted it. I cannot wait to see it.

I do not want to take away from the RSD bracelets, but an RSD friend gave me the coolest Christmas present. It is an emergency bracelet that is a computer chip and can be plugged into any USB port. It is THE COOLEST. The program is easy to use and easy to update after DR. visits ,Med changes etc. It is also water proof and can be taken on/ of much easier that my old traditional bracelet. They are not expensive and I highly recommend it. Fondly-Carol

Oh now, that IS cool. Do you happen to have a link to it by chance??

Ii haven't posted in a while either but think this is a great idea! Please post more information, if available.

medic alert bracelet
 

frank has a medical alert bracelet....he found one in a jewelry shop...it is a larger one, for men...it says spinal cord stimulator, NO MRIs...complex regional pain syndrome............

I never thought of that. I definitely need to purchase one. Only thing is I can't have anything metal that will get cold touching my skin.

I just got my bracelet from HillCountryIDealogy in the mail today. Oh my gosh, it is just gorgeous! Finally I'm not embarrassed to wear a medical bracelet. :D

I still love the idea of the chip. I wonder if paramedics & such would have the equipment to read them?

Wow! That is just awesome! I want one!~Tell us everythig! Please~ Please!

Potential unintended backlash...?
 

Hey everyone!

While reading all your posts, I started thinking that adding something to the effect of "CRPS L Leg" to my existing medical bracelet (penicillin allergy) was a great idea. However, I realized that by adding a reference to CRPS on my medical bracelet, it may do more harm than good- I thought I'd share, and see what opinions you all have...

First of all, due to the unfortunate fact that RSD/CRPS (abbreviated, or written-out) is understood by so few doctors, it's likely that there are even less first-responders who do. So, (using myself as an example), if I were to add something like "CRPS in L Leg" to my medical bracelet, and were in an emergency... I don't suspect the EMT, etc, would know what that message meant, nor therefore, to act appropriately.

Furthermore, what frightens me about it all, and what I meant by "it may do more harm than good" is that the previously mentioned EMT is going to see my "L Leg" referenced on medical bracelet, and prompt them to "investigate" (i.e. touch, etc) to ensure that my "Left Leg" isn't hurt by the accident (thinking it must be "special" - an artificial limb, for instance)... Thus prompting the action we were intending to prevent.

I guess I'm just afraid that until more people (especially the medical community and first-responders) become familiar with RSD/CRPS, that there may not be much we can do to help in those first moments of emergency situations- but at least having the info "on your person" (wallet card, etc.) at all times will alert an ER Doc who hopefully is well-versed on the topic.

There's certainly an arguement for both sides- I'm just sharing my worries, and "playing devil's advocate" I guess.

I think that by doing this- communicating- we are at least getting a bit closer with every post- to more widespread understanding of the "beast" we live with...and once more widely understood, or at least recognized, then we can all check one more concern of our very long list. :grouphug:

Are you asking me or the other poster re: the USB bracelet? Sorry, I'm not sure. :o

Another Idea for Emergency Situations...
 

I saw a small clip on tv a few years back featuring a policeman that suggested people program "I.C.E." (In Case of Emergency) into their cell phone's contacts list with the phone number of their emergency contact. It said that most first-responders know to look for this information in an accident victim's cell phone in order to contact their family/next of kin, etc. So what I've done is added a few "ICE" numbers into my phone, so that if nothing else, my family will be able to "clue them in" as to my condition.

Now, to take it one step further... With the huge leap in technology, there are options that are even better- Apps for cell phones such as the iPhone (which I have, and therefore know are available) or Android, etc. These apps can let you organize all of your essential medical info, such as condition(s), meds, allergies, etc. Now, I haven't looked into them enough yet to have chosen one- because like most apps, there are free ones and some you pay for, but as far as this goes, the little bit of money it may cost for the best one is more than worth it...not only for potential emergencies, but will make medical appointments and forms easier and faster to fill out/explain with all relevant info right at your fingertips.

I'm going to research them to see which apps are rated the highest, have the best features, and are the easiest to use. I'll let you all know what I discover. :D (As I said earlier, I have an iPhone, so obviously I'll be searching iTunes' apps, but many apps that are available for the iPhone are also available for other types of cell phones...or at least I'm sure there are plenty of similar options for other cell phone models).

Just an idea- I'll post again with my findings :winky: