Introduction to CRPS
You have been diagnosed with CRPS (Complex Regional Pain Syndrome), also known as RSDS (Reflex Sympathetic Dystrophy Syndrome). What exactly does that mean? This article is intended for those of you who have been recently diagnosed, within the last 1-2 years, as well as those of you who have never really been exposed to information on CRPS or any type of emotional support information. Think of it as a Beginner's Guide to CRPS!
Let's face it, any chronic pain disease is life-altering. But CRPS is chronic pain squared! It affects the entire family and it needs to be treated that way right from the start, everyone needs to be involved. So the information in this article and on the pages of this website is meant for the entire families eyes, not just the patients.
For many of you it is probably an eye-opening experience. You learn at one fell swoop;
1) A name for the pain you have been experiencing.
2) That the pain is not all in your head as some may have alluded to, or maybe even said directly!
3) You are not alone, there are millions of others like you suffering from the same disease.
4) CRPS is ranked as the most painful form of Chronic Pain that exists today!
5) A diagnosis of CRPS is NOT the end of the world and life does go on.
6) There are many others with this disease who are more than willing to help you through your struggle.
7) That some of the strange things you have been experiencing; short-term memory loss, lack of concentration, insomnia, inability to find the right word when talking, noise/vibration causing you pain, the simple touch of a loved one causing pain, being more irritable, etc.; are all part of your CRPS!
And so many more things you will learn over time, if you wish. Or maybe you just want to be on the outskirts and pick and choose which information interests you. That's fine too. This is family, make yourself at home. I know I speak for our entire Board of Directors, which is made up entirely of family members, when I say Welcome to our RSDHope Family! We do things a little differently around here as you will learn.
ITEMS OF PARTICULAR IMPORTANCE
Let's face it, any chronic pain disease is life-altering. But CRPS is chronic pain squared! It affects the entire family and it needs to be treated that way right from the start, everyone needs to be involved. So the information in this article and on the pages of this website is meant for the entire families eyes, not just the patients.
For many of you it is probably an eye-opening experience. You learn at one fell swoop;
1) A name for the pain you have been experiencing.
2) That the pain is not all in your head as some may have alluded to, or maybe even said directly!
3) You are not alone, there are millions of others like you suffering from the same disease.
4) CRPS is ranked as the most painful form of Chronic Pain that exists today!
5) A diagnosis of CRPS is NOT the end of the world and life does go on.
6) There are many others with this disease who are more than willing to help you through your struggle.
7) That some of the strange things you have been experiencing; short-term memory loss, lack of concentration, insomnia, inability to find the right word when talking, noise/vibration causing you pain, the simple touch of a loved one causing pain, being more irritable, etc.; are all part of your CRPS!
And so many more things you will learn over time, if you wish. Or maybe you just want to be on the outskirts and pick and choose which information interests you. That's fine too. This is family, make yourself at home. I know I speak for our entire Board of Directors, which is made up entirely of family members, when I say Welcome to our RSDHope Family! We do things a little differently around here as you will learn.
ITEMS OF PARTICULAR IMPORTANCE
- Never use ice on the CRPS area. In the Physical Therapy section you will find information explaining why this is so very detrimental to CRPS patients.
- In our organizations opinion, never let a Doctor cut the nerve, also called a sympathectomy, burn the nerve, or sever the nerve in any way. This will only aggravate an already aggravated nervous system, without researching this thoroughly. We have found that this can often lead to severe problems. In addition, when you do this you take away the nerve that may be the best pathway to treat the disease. Like other surgical procedures, these are of course, irriversible and who knows what treatments lie on the horizon.
- Educate yourself concerning the disease. Read all the information you can find about the disease from reputable sources. Of course we recommend our website, American RSDHope, and also the RSDSA.
- Understand that you need to share all of the symptoms you encounter with your Doctor. Never to feel it is too weird or strange to be considered. After all, who would ever have thought that burning pain in your hand might go together with a loss of short-term memory?
- Involve your family in the process of education.
- Be a partner with your physician(s) in the healing process and remember, the physician(s) works for you, not the other way around. You are paying the bill.
- 7. Always remember that you are never alone, there are millions of us out here; you aren't crazy; the pain isn't in your head; and that your life is not over it is simply going to go in a different direction than you had anticipated.
Sections of the website that you should be sure to read!
Description - Gives a quick description of both types of CRPS
CRPS Overview - Answers the question "What is CRPS" in much more detail as well as many of the more popular CRPS questions.
Symptoms - Self-explanatory but you might be surprised to find some things here you did not realize were part of the disease.
RSDS or CRPS - For those confused by the old and new terminology.
How is CRPS Diagnosed? - If you have questions about how a Dr might go about diagnosing the disease, what he looks for, etc.
Treatment
Drug Therapies - Explains the basic types of medications used to treat the disease.
Nerve Blocks- Explains the various types of nerve blocks used on CRPS patients; don't forget to read the article on IMP and SMP, very important to understanding why the blocks may not work!
Physical Therapy - This is an important section. Move it or lose it is key to this disease!
And of course there are some other wonderful areas on the website so poke around all you like. Let us know if there are things you have questions on or are looking for but cannot find. These areas are a good place to start. Don't try to do it all at once or you will be overwhelmed! If you need others to talk to, go to the CRPS Support Organizations Links section and check out some of those wonderful groups!
Welcome ;-D
Description - Gives a quick description of both types of CRPS
CRPS Overview - Answers the question "What is CRPS" in much more detail as well as many of the more popular CRPS questions.
Symptoms - Self-explanatory but you might be surprised to find some things here you did not realize were part of the disease.
RSDS or CRPS - For those confused by the old and new terminology.
How is CRPS Diagnosed? - If you have questions about how a Dr might go about diagnosing the disease, what he looks for, etc.
Treatment
Drug Therapies - Explains the basic types of medications used to treat the disease.
Nerve Blocks- Explains the various types of nerve blocks used on CRPS patients; don't forget to read the article on IMP and SMP, very important to understanding why the blocks may not work!
Physical Therapy - This is an important section. Move it or lose it is key to this disease!
And of course there are some other wonderful areas on the website so poke around all you like. Let us know if there are things you have questions on or are looking for but cannot find. These areas are a good place to start. Don't try to do it all at once or you will be overwhelmed! If you need others to talk to, go to the CRPS Support Organizations Links section and check out some of those wonderful groups!
Welcome ;-D
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