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 09-07-2016, 09:14 AM #11
Shay08 Shay08 is offline
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Location: Northeast PA
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Shay08 Shay08 is offline
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Join Date: Sep 2016
Location: Northeast PA
Posts: 86
5 yr Member
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Hi Sibsie!

So sorry for all you are going through. Others have offered a lot of good advice and sources of information. Do your research and respectfully question all medical professionals as to their experience with CRPS patients and procedures and treatments they have used with them. Try to find the most experienced person in your area or within a travel distance that you can handle. At least you now have a diagnosis and have found one medication that has helped some. Since you are limited in the number of times you can switch to a different professional, it is important that you choose wisely.

Have you visited the ******* website? This website has some good information on CRPS/RSD.

There are many drugs and treatments that have been used to treat CRPS/RSD. Not everyone responds well to all of these drugs and treatments. Everyone is different. Know what is available and just see what any doctor you choose is willing to try. If they are limited in what they can offer you, keep looking. Call the office and inquire. A good doctor should have staff willing to answer your questions if you tell them that you are looking for a doctor who is experienced with CRPS and who can offer many treatment options. Let them know that you are limited in the number of doctors you can see. Leave a message for the doctor if you must. Don't be afraid to be your own advocate. There are actually doctors out there who will refer you to the best person they know. I really appreciate and respect those doctors. It was my Primary Care Physician who pointed me in the right direction.

Also be aware that the best doctor may be a neurologist, a pain management specialist, an orthopedic specialist, a group, etc. Just be wary of the snake oil salesman who has only one treatment to offer. One shoe does not fit all when it comes to CRPS. Good luck.

I am also a new member here and it seems like they have a good support group. Keep in touch and let us know how things work out for you.

Shay
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Old 09-07-2016, 10:58 AM #12
Shay08 Shay08 is offline
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Join Date: Sep 2016
Location: Northeast PA
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Shay08 Shay08 is offline
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Join Date: Sep 2016
Location: Northeast PA
Posts: 86
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Sorry, but I am just getting used to posting on here. I found out that I must have at least 10 posts before being able to post a URL. Actually that is a good rule. The website I was referencing is for the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA). It is listed in the Sticky: Websites and Links.

Shay
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Old 09-07-2016, 02:51 PM #13
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CRPSbe CRPSbe is offline
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Quote:
Originally Posted by Shay08 View Post
Sorry, but I am just getting used to posting on here. I found out that I must have at least 10 posts before being able to post a URL. Actually that is a good rule. The website I was referencing is for the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA). It is listed in the Sticky: Websites and Links.

Shay
BTW, welcome Shay!
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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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