After more than twenty-seven years of dealing with the medical community, Lee and I have learned more than we thought we would ever have to know about the human body, various illnesses and their treatments. We have also learned a great deal, mostly through trial and error, about dealing with medical providers, good and bad. Doctors (and nurses) are no different than people in any other profession- there are good ones and others who are not as good. The biggest difference is that when you encounter a medical provider who is not so good, it can jeopardize the patient’s health and safety. What we have learned, more than anything, is that nobody else will ever be as much of an advocate for your patient or loved one as you and them. Your patient typically knows his or her body better than anyone else, and you are next as the person most responsible for their care. I am not suggesting that you should not believe what doctors tell you, but I am saying that you should do your research on CRPS, or any other illness, to understand the causes, symptoms, treatment options and expectations. Too many people suffering with CRPS have been misdiagnosed, delaying their treatment or resulting in the wrong treatment. To mitigate that risk, you and your patient must educate yourselves using all the information available to ensure you can ask the right questions, find the right providers, understand the risks and expected results from different types of treatments and put your patient in the best place to get the most appropriate care possible. You both should look at this as part of your life-saving efforts.
In the Caregiver Resources and Research pages on this site, you will find a variety of resources-research, trials, treatment options, events, providers, etc., to help you and your patient understand CRPS and related illnesses. Our hope is that you will find content that helps you to be better informed and prepared to deal with CRPS and those responsible for helping you.