You have recently been diagnosed with CRPS (Complex Regional Pain Syndrome), formerly known as RSDS (Reflex Sympathetic Dystrophy Syndrome). No matter how old you are you are probably a little scared, confused, angry.

You may be filled with questions. Where do I go from here? What exactly does my diagnosis mean? Will I have to stop working, if I haven’t already? Can I still go to school? Will I get worse, or at least worse before I get better? Is there a cure? Is there at least some kind of a treatment? Are there things (medications, treatments, physical therapy, etc.) that I should be doing right away? What about things that I should not be doing? Why did it take so long for them to figure out what was wrong with me (or my loved one)?

We will attempt to answer some of your questions to the best of our abilities. This article is intended for those of you who have been recently diagnosed, within the last few months to 1-2 years or less; 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 this as a Beginner’s Guide to CRPS! Yes I know, some of you have been told you have RSD not CRPS. We will try to clear up that confusion as well!

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. I always say it is like a bomb went off in the middle of your home and nothing was left untouched; finances, personal space, future plans, everyone’s personal feelings, sleep patterns for everyone in the household, college education plans, it even affects the family pets! So the information in this article, and on the pages of this website for that matter, is meant for everyone in your family circle, not just you, the patient.

Patients;
I know what some of you are saying. “I can’t get anyone to read anything about my disease”, or “No one listens to what I think or say, I’m just a kid.” Well, the bottom line is you have to figure out a way to get them to read the info and listen to you! 

Parents and loved ones; 

READ AND LISTEN 😉 If you have said “If there was only something I could do to help her, I would do it in a minute!” Guess what? This is it! It won’t take very long to sit and read some information and you don’t have to read it all at once but trust me, what you will read will make a huge difference for everyone concerned. 

Patients and loved ones;
Do yourself and your loved ones a favor and don’t stop by all of those websites out there with al sorts of out-dated, unsubstantiated, useless, incorrect, false, and misleading information on CRPS; Chronic Pain; medications; treatments; etc. There are a ton of them I know. Anyone with five minutes and a debit card can set up a website. They can pull information from other websites and “look” legitimate very quickly. You cannot imagine the stuff we have heard over the years. However, what happens in most cases is that the material is simply never updated, not checked by Medical professionals, not sourced in any way. With this disease especially you need the most up-to-date information possible. You need to try and keep your research limited to such resources as American RSDHope and the RSDSA (the two national CRPS non-profit organizations), or WebMD, the Mayo Clinic, and maybe a couple of others. If you can find the link on either our site or the RSDSA’s you know you are good to go. 

You will see and hear me and others hammer this point home again and again. Why? Because we continue to get emails of horror stories from patients who didn’t heed the warnings. For instance; “I talked to Susie on this website and she said this treatment of attaching bees to her face cured her in three hours, but you know what? It made mine worse Keith?” . Seriously?  I’m shocked. 

Listen, there are a ton of fantastic FaceBook pages out there and personal websites and local CRPS support groups that have wonderful sites on the internet. They have wonderful local resources, medical people, posts from the people in your area, and some even have bulletin boards where you can post questions and answers. Take advantage of the local resources in your area. We have some of them listed on our website (see #6 below as well as our Links section for more information). 

For many of you getting your CRPS diagnosis was probably an eye-opening experience. You learned at one fell swoop;

1) A name for the pain you have been experiencing; CRPS or Complex Regional Pain Syndrome formerly known as RSD
2) That the pain is not all in your head as some may have alluded to, or maybe even have said to you directly! Others will describe what you now know as CRPS in much the same way you have been feeling it, even if you couldn’t express it all.
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 other patients 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.; these weird symptoms are all part of your CRPS!
8) How does CRPS work exactly? What is the underlying mechanism? What makes me hurt when my friend had the same injury and she is already healed and doing fine?

First of all, it is ok to go find a secluded place where you can let out a good loud scream! Go ahead, you will feel better. As long as you know it is coming it won’t bother your allodynia (look under symptom 1) as much. I guess your lessons start now. Allodynia means extreme, EXTREME sensitivity to sound, touch, vibration, temperature, clothing, barometric pressure changes, and more. Sudden, unexpected, loud noises are worse than just loud noises. A soft and light caress type of touch is much more painful than a firm-pressure type of touch.

There are many more things you will learn over time, if you wish. 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 when I say “Welcome to our RSDHope Family!.” We do things a little differently around here as you will learn.

ITEMS OF PARTICULAR IMPORTANCE

  1. ICE AND CRPS – Never use ice on the CRPS area, unless it is absolutely necessary. There are times when you have to use ice we realize but it should not be part of your Physical Therapy regime. In the Physical Therapy section you will find information explaining why this is so very detrimental to CRPS patients. That also goes for the Warm/cold water therapy. The same principle applies as you will understand when you read the article. 
  2. In our organizations opinion, unless it is a medical necessity don’t let a Doctor cut the nerve, also called a sympathectomy, burn the nerve, or sever the nerve if possible. Research this type of procedure thoroughly first. This tends to aggravate an already aggravated nervous system. We have found that this can often lead to severe problems. In addition, when you do these types of procedures you take away the nerve that may be the best pathway to treat the disease down the road. Like other surgical procedures they are, of course, irreversible and who knows what treatments lie on the horizon. 
  3. 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. These are the websites for the two National non-profit CRPS Organizations in the United States. If you have CRPS and need information on CRPS and on treating CRPS, it only stands to reason you get it from one of the National CRPS Organization’s websites right? If you were diagnosed with MS, you would go to the MS Foundation; Arthritis? The Arthritis Foundation; Cancer? The Cancer Society. Well, same here. The two of us are the equivalent for our disease. Both organizations have been helping patients for two decades. 
  4. Understand that you need to share all of the symptoms you are experiencing, with your Doctor. Never feel something is too weird or strange to be considered. After all, who would ever have thought that the burning pain in your hand might go together with a loss of short-term memory? Or hair loss/gain? Or be connected with an increase in sweating or a change in the barometric pressure? But they are all connected! It is a bizarre disease isn’t it?
  5. Involve your family in the process of education. They need to learn about this disease along with you because they are going to be fighting it alongside you. Don’t shut them out and think you are being a brave soldier, shielding them from the worst of everything. All that does is shut them out and eliminate them from being able to help which is part of their healing process. You can’t ask them to learn about your disease, be part of just some things, and then shut them out of others. Tell them when you need help, show them how they can help you. There will be things you can no longer do, let them. It will help both of you through this ordeal. 
  6. 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, but you need to be a team. If you are having a problem with a new medication, strange side effects, etc. you must tell the Dr. Don’t suddenly stop taking any medication without talking with him. By the same token do not share your medications with anyone else, doing so can cause your physician to drop you as a patient. Don’t jeopardize your health for someone else’s game or high. YOU come first!
  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. It is also ok that it takes some time to adjust to that fact. Maybe it takes you months, maybe a couple of years, everyone is different. Allow yourself time to adjust, time to grieve for the life you had and is now gone and time to adjust to the new life you have. It can be just as rewarding and amazing if YOU decide to make it that way, but it will take more work. This disease is about building survivors. 
  8. If your Doctor wants to start you on a new medication (one you have not been on) or wants you to have a procedure; have that Dr. explain;    
  • Why he wants you on it/why he wants you to have the procedure?
  • What he expects as a result of putting you on it/having it done?
  • how many other CRPS patients he currently has on it and what their results are or have been so far?
  • how many he has had on it in the past (or how many of the procedures he has done in the past and what were the results?
  • what happens if it doesn’t work? What is the next course of action?


9. Remember, you are the boss, you pay the bills, and you are in charge. If you don’t understand something, ask! Don’t leave until someone explains it well enough that you do. If you don’t feel comfortable starting this new medication or doing that particular procedure you need to let them know. They will take the time, they need to, and they cannot read your mind. Maybe he has someone, a former patient perhaps, that he can pass your number on to and the two of you can discuss the medication or procedure. Unless you let the Dr know your concerns he won’t know you have any. Remember, this is a partnership and you are in it for a long while so work together. If he or she doesn’t want to answer your questions, you need to find a different partner to work with. I realize that in some towns that isn’t always easy but this is your life we are talking about here so make the effort, find a way.