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 04-11-2009, 11:49 AM #11
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I keep a small laminated card in my wallet. It's the size of a business or bank card. It has a colorful red wheelchair logo on it and it says "CRPS" in big lettering. I have a handicap due to RSD, so the logo immediately makes clear they should be careful with me. Next on the card, I have all my medication listed. In case something happens, they will know at least something about me.

Maybe this is another good idea.
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Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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Old 04-11-2009, 12:16 PM #12
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That is a good info list, might even be good to take for any type of drs appts or testing.
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Old 04-11-2009, 12:28 PM #13
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You can also ask your Dr to load a flash drive with your medical records. This can kept in your wallet or attached to keychain.

I wonder if you could do that with the PDF file...Jo...?
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Old 04-11-2009, 12:30 PM #14
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Or you can search for "medical alert bracelets". There are some sellers on Etsy who sell some beautiful ones.
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All the best, Marleen
=====================
Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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Old 04-11-2009, 11:00 PM #15
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DianaA, I wish I had this last summer when I went to the ER in California. My male nurse knew nothing about RSD & treated me horribly. He wa so bad that I ended up not having to pay my portion of the hospital bill & the hospital is lucky I am not suing them. If I had this maybe my treatment would have been better. He tried to put my IV in my RSD arm after I told him I had RSD in my right side. He tried to take my blood pressure on my right side. He did not understand why I was so cold. That was before the RSD had spread to my left. And the list goes on. I had an extreme flu & had not had my meds & was very flared up. I couldnt keep anything down including my meds. I lost ten punds in 5 days with that flu. And was in the ER twice. I will do what you say & keep one of these in my purse with my meds list. Thank you so much.
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Old 04-11-2009, 11:29 PM #16
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Denny,
I have found with my twenty years of this, that having something in print always seems to get so much more attention. It seemed to carry more weight, than when I would tell them. Now instead of the person drawing the blood or the ER doc...looking at me like I am crazy, they seem to take extra care and ask questions. Sorry to hear you had such a bad experience. Hopefully that will never happen again! Di
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Old 04-12-2009, 04:39 AM #17
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Diana, I am a member and it came through with my alerts and I have copies it. It really sounds like anyone with RSD needs to have this protocal with them. It is good advice
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Old 04-12-2009, 04:53 AM #18
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CRPSbe, I really am in a delima about carrying my medication list with me, especially since I still have to drive at leat until December (if I can make it until then). I thought about putting the pain dr's number, and put something like; Must call Dr. Multiple Medications with RSD on one of those medical alert tags. Can I get some imput on this issue please as a lot of you have been dealing with this issue a lot longer than me and I do respect your feedback.
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Old 04-12-2009, 11:23 AM #19
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tjbird,

Maybe make a card that says "CRPS type 1" or "CRPS type 2" depending on your CRPS, and then list a few important phone numbers. I'd include at least one family member and your doctor. This will probably fit on a medical alert bracelet or tag.

My cell phone contains ICE numbers (In Case of Emergency). These are numbers that were programmed as follows:

"ICE 1 Name Surname"
"ICE 2 Name Surnmae"
Etc. ...

I have 5 people listed, in case there's no answer from the previous numbers.
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All the best, Marleen
=====================
Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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Old 04-12-2009, 11:57 PM #20
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Default Just my opinion

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Originally Posted by tjbird View Post
CRPSbe, I really am in a delima about carrying my medication list with me, especially since I still have to drive at leat until December (if I can make it until then). I thought about putting the pain dr's number, and put something like; Must call Dr. Multiple Medications with RSD on one of those medical alert tags. Can I get some imput on this issue please as a lot of you have been dealing with this issue a lot longer than me and I do respect your feedback.
tjbird
tjbird
I understand your concerns, about driving with the medicines and medicine lists. There were times I chose to drive when I just dont know how I made it home. But, my thought on this is...that if something should happen, it may be more important to have the list of medicines, than not. If you must drive, then I think you may only compromise the situation more should something happen, by NOT have the list of medicines for the emergency and treating physicans. The combination of medicines and the lack of information, with emergency medical treatment, could lead to a very dangerous or even life threatening situation for you. We don't want that to happen! Just my thoughts maybe others will jump in here.Hugs Di
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