Those who have lived with RSD for a while and who have worked hard to cope with its symptoms, find that they eventually accept RSD as a part of their lives. I know from your e-mails that many of you have found ways to live successfully with RSD; that despite the great difficulties associated with pain and disability, you have been able to adapt and forge different but still meaningful and fulfilling lives.

Like many of you who are new to the disease, I know that in the beginning years I didn't think that any of this was possible. I didn't think I would ever be able to get used to living with constant pain, adjust to not being able to walk without a walker or deal with all of the other nasty symptoms of RSD. Then one day I realized I was no longer sitting around waiting for a cure. I was too busy living my life the way it is. I do not consider myself special or to have any more abilities than anyone else living with RSD. So what happened to change my attitude?

Just as there is no one treatment that is successful for everyone who has RSD, I believe there is no universal recipe for learning to adjust to a chronic illness. But there are certain guidelines that we can share and use so that we are not each re-creating the wheel in our struggle. The most important thing of course is to take care of yourself, to follow the treatment plan that you and your doctors have established. The next is to keep busy. If you can no longer work, this may mean finding new things that give you pleasure and a sense of accomplishment. We all need to feel useful. Do not isolate yourself from friends and family. Although you may be in pain, being with others can often provide a distraction from it. Be honest about your feelings to yourself and to others. Hiding your pain takes a great deal of energy and you need to conserve it for more important things.

Feeling sorry for yourself is only normal. Give in to it, but give it a structure. Allow yourself to have a pity party for a specified amount of time and have a plan ready for when that time is over. For example, decide that in half an hour you will start a new book, go to a movie, or do whatever else will give you pleasure. Try to live one day at a time, as trite as that sounds. If you spend all your time waiting for a cure you will have wasted precious time.

These are just a few ideas. To provide many more, Peter Moskovitz, MD and I have written a book called Living With RSDS. Published by New Harbinger Publications, it will be in bookstores this June. We have tried to answer many of the questions that you have asked in your e-mails. The book contains practical guidelines for living successfully with RSD, current medical information, and many resources for dealing with specific aspects of life with a chronic disease. We hope that you will find it useful. As Dr. Moskovitz and I are both on the RSDSA board of directors, all proceeds will be donated to the organization.

There are many other avenues of help available and you should take advantage of them. Sharing information with others who have RSD (and there are many millions of us) can help you to feel less alone. Learning as much as you can about the syndrome and educating others about it can help give you a sense of direction and power.

Moreover, I believe that time and the perspective that it gives may be the greatest help of all in living with RSD. Over time you realize that your pain does not always stay at a 10. Over time you realize that you have resources and abilities you didn't know were there, allowing you to face many of the challenges of RSD. And I believe that time becomes its own healer, that despite yourself there are moments when you forget you have RSD. You slowly learn to accept the way things are and go about your life. We also have each other. By sharing what we have learned we can really help each other. Please take the time to e-mail me with your ideas so that we can all benefit from them.

RSDSA Review. Spring 2003.