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CRPS is a rare condition, so it is not likely that you will know others with the disease. It is also quite possible the medical professionals in your area know little about it and will be unable to give you answers to your questions. I highly recommend connecting with a support group online. Facebook has several groups dedicated to CRPS including Complex Regional Pain Syndrome Awareness, CRPS/RSD Positive group, CRPS A Patients Perspective, CURE CRPS, Midwest RSD/CRPS Support, and the group I facilitate: Iowa CRPS Support. Virtual groups are great for people dealing with chronic illness. If you life in a metropolitan area, you might find a live support group through your local pain management clinic or hospital or the RSDS.org website. If there isn't one, start one! I did! There is nothing better than having people commiserate with you who really get what you are going through. You can ask questions like "Does anyone else..." and get useful and supportive answers. Make sure you're part of a community that does not tolerate harassment or bullying. I would also be careful of joining a group sponsored by someone who has a treatment modality to sell. Support groups should have a list of rules of conduct and require that any information shared be documented, researched and verified. We are healthcare consumers and need to be wise. Learning what has worked for others living with this disease is the most helpful thing you can do for yourself.