Reflex Sympathetic Dystrophy (RSD)

[reruho]

I have started carrying information on RSD/CRPS because it was easier to let someone read this document (that is clear and concise) than it was to explain it to them. The other information is a Hospital Protocol info sheet. These two pieces of information come from the RSD Syndrome Association's website (www.rsdsa.org). This is a good website for information.

Hospital Protocol RSD/CRPS Patient: Handle with Care
http://www.rsds.org/4/resources/pdf/hospital_protocol.pdf

This is a trifold called Recognizing, Understanding , and Treating CRPS/RSD
http://www.rsds.org/1/publications/pdf/Recognizing_Understanding_08.pdf

Reta

[puppyloverof2]

Hi again Reta,

Just wanted to quickly say that I joined www.rsdsa.org shortly after I was diagnosed. I purchased a book for the organization for $45.00 that has great information in it and that is what I take with me, but it will certainly be lighter load to carry a tri-fold pamphlet, and much easier for others to quickly get a glimpse. If I have to start explaining it goes into probably more detail than that person wants to hear, so this will be great for me. I agree, the site has a lot of great info. Thanks a million for the post.
Take care,
Terri

[dar in pa]

Hi,
That is a good idea. I had thought about doing that but, as yet, have not. When you tell people "RSD" they have no idea what you are talking about.

I try to explain, but I know they get bored as I go on and on. I think I am going to make some copies and take them with me. I also am going to put a little note along with my ID indicating that should I be injured and have to go to the hospital, I want to be treated as an RSD patient. The only thing that scares me is that so many doctors do not even know what it is.
Thanks for your good advice.
Darlene

[puppyloverof2]

Hi Darlene,

One thing that I have found when trying to explain the RDS is to also refer to it as CRPS Complex Regional Pain Syndrome. This is what most people know RSD as, recently anyway, so it is basically RSD aka CRPS. I have a few people respond to it's newer name than just the RSD.

Did you see the original post from "reruho" regarding hospital protocol? If not, go to
http://www.rsds.org/4/resources/pdf/hospital_protocol.pdf and print that directly from you computer and then go to this other site where "reruho" ordered a medical alert necklace (or she said you can get bracelet. Go to http://www.rsds.org/1/publications/pdf/Recognizing_Understanding_08.pdf
This is a trifold called Recognizing, Understanding , and Treating CRPS/RSD

Just copy & paste into your browser search bar and there they are in pdf file just waiting for you to print.
Great post from Reta. That is just what I needed for the here and the now. I will order a bracelet/necklace after I talk to my PM and see what she says but at least I will keep copies of the hospital protocol as well as the understanding RSD in my car to hand out at will!

Good luck to you and God Bless,
Terri

[dar in pa]

Thanks for the helpful info Terri.

I am going to look it up now.

God Bless,
Darlene

[puppyloverof2]

I don't think the link I gave you is for the medical alert bracelet or necklace but I believe Reta meant that you can order one through the www.rsdsa.org website. The 2 links I gave you (from Reta) are for a tri-fold information pamphlet explaining what RSD/CRPS is so you can give one to each doctor you visit and hopefully they will treat you or refer you to someone else. I know what you mean about being fearful the physician's aren't really knowledgeable regarding RSD/CRPS. BUT we can help educate them and I think because the awareness is growing due to the incline in patients suffering with this. I wish you all the best and hope this helps you as much as I believe it is going to help me in easing my fears regarding going to the hospital (ER) or new doctors/dentists. The best thing we can do for ourselves is to educate ourselves and arm ourselves with all the important records. I feel we definitely have to take control of our own health care through education. Knowledge is power when you are dealing with physicians, etc. who can be a bit arrogant at times and try to put us in a category as "drug seekers" due to their own ignorance. We can help them help us!

Take good care Darlene,
Terri

[reruho]

I will look for the link to the company I ordered my necklace from. The links are for the information sheets. If you google mdeical alert braclet, you get a wide range of prices. I like this company because of the price and the fact you can have both sides engraved. Their customer service was great.
Reta

[puppyloverof2]

I believe that link will be so helpful to so many of us, I know how much it will benefit me and ease my apprehension when I have to go to the hospital or new doctor/dentist. Thank you very much!
Terri