The RSD/CRPS Awareness Quilt is an ongoing project and will be until there is a cure, If you have RSD or someone you love has it, please take the time to participate and send in your square for the quilt. Its growing fast and is already attracting some media attention. This project will do more than anything yet to finally get the problem of RSD/CRPS the attention it desperately needs.(from youtube channel RSDResearchFunding)
My Brother wrote this piece last year and I thought I would repost it here. In the future I will be posting more about having an “Invisible Illness” and the price these people pay for “not looking ill”. It’s important to remember for everyone that just because we can’t see the pain DOES NOT mean it’s not there.
Ask your family and friends, Do You Understand What Is Wrong With Me? If they cannot answer that question, here is a small message you can use to help them understand. I know this disease is hard to explain, believe me I know. I just hope that this helps you as it did me .
I have Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy Syndrome (RSD) Although doctors don’t know why someone develops CRPS, it’s a neurological syndrome that occurs after a traumatic injury, surgery, sprain, fracture, or a period of immobilization. More than 500,000-and perhaps as many as 1.2 million-Americans suffer from CRPS/RSD. I may look “healthy,” but I often suffer unbearable, unbelievable, and unrelenting pain. My skin may swell, sweat, change colors, change temperature, or hurt to the slightest touch. It’s difficult for me to sleep. Sometimes I have difficulty in moving or my body may shake or spasm. People like me who suffer chronic pain, like that caused by CRPS/RSD, often experience depression because we experience significant, and often negative, life changes. Presently, there is no cure for CRPS/RSD, but there are several successful temporary treatments.
I always have hope because of the support of my friends and my family. Here’s how you can help me. Believe that my pain is real, and I am doing the best I can. Just because you cannot see it doesn’t mean it isn’t there, so many cannot believe what they cannot see. I have good and bad days, even hours. Understand that I cannot predict how I will feel each day. I take full advantage of my good days to the fullest in an effort to defeat the depression this disease causes. Be patient with me. Encourage me. Ask before touching me. It is OK to ask me about CRPS/RSD, and learn all you can.
Copy and print this small message off it can help with the family and friends who don’t understand, trying to make people understand can be stressful in itself too. Although it may be hard for them to see your pain everyday,(it is courageous of you to protect them from it) they do know it is there even when you smile, laugh, and are over all nice. They will understand if you just communicate to them that you are having an exceptionally bad pain day or days and if you just tell them when you can’t be around people right now then it won’t hurt their feelings and they can give you some needed space. Just be careful not to fall into a dark hole that you don’t want to come out of and limit your alone time. Your family and friends are your support and they will help you through it all if you keep the communications open and be honest.
Don’t put so many expectations on yourself and think that you have to always put on a happy face. You are a human in pain and there are many emotions that go along with this awful dystrophy. It is OK to have a bad day just don’t give into it everyday.
I hope your pain eases up. You might also talk to your pain doctor about increasing or changing your meds. I know it is hard to ask for more pain meds as some Doctors think you are only there for the high. Explain your symptoms fully leaving nothing out and you will find the Doctors are more willing to help you if the understand EXACTLY how you are feeling..