I acquired Complex Regional Pain Syndrome almost 7 years ago after a wrist surgery. I also have bi-lateral Raynaud’s, and Lyme Disease. I only recently learned about the Lyme Disease. I have been advocating for myself and others with CRPS for 6 years. I run private virtual groups, I host meet-ups, I host weekly support calls, I send out info to doctors whenever possible, I network with as many professionals as I can, I host annual Pain Treatment Education Expo’s, I make time to speak with other patients one on one (in my home, their homes, over the phone). I carry brochures and literature in my purse and keep boxes of brochures in my car. One never knows when a teaching moment may occur! I literally never stop talking about this stupid disease.
“Does anyone hear me? Why are we still so misunderstood?"
Why don’t people understand that while we may look great, it probably took us several painful hours to get that way?
Why can’t people comprehend that making a large meal wipes us out for the day? Why must we still explain to those close to us that we cannot handle the loud noises? Why do people still grab our affected limbs when told not to? Why is this “invisible illness” so much more difficult to understand than others? It isn’t really so invisible after all if you really take the time to look. Spend some time with one of us, you will see freezing purple limbs, horrible swelling, shiny tight skin, mottling, dystonia, sweating, abnormal hair and nail growth, muscle atrophy (yes, you CAN see this with the naked eye!), lesions, nausea/vomiting, extreme exhaustion.
“This is not a pain competition and you cannot understand the pain associated with CRPS unless you HAVE CRPS.”
This is just an abbreviated list of what you can see on the OUTSIDE! You likely cannot imagine what is going on inside of our bodies-the constant firing of the pain signals, the bone deterioration, and the struggle for our bodies to regulate our body temperatures. I could go on and on, and I am not a doctor.
Don’t tell us you hurt your back last year. We don’t want to hear about your sprained wrist or your broken leg. This is not a pain competition and you cannot understand the pain associated with CRPS unless you HAVE CRPS. Just listen. Don’t try to sell us your new health bar or smoothie mix. I can tell you first hand that if you have not spoken to me in several years and you reach out to me simply because you now have something “healthy” to sell, I will not receive that message well!
If you are going to proclaim to care about or treat a person with CRPS there are many things you can do to help them. Listen to them. You can join a caregiver’s support group. You can go to www.uspainfoundation.org or www.rsds.org and find plenty of information. The National Institute of Health has downloadable brochures. National Pain Report has run many articles on CRPS. Find an advocate to help guide you-we are everywhere!
PLEASE HEAR US! This is 2016. If we are not being loud enough, eloquent enough, assertive enough, bold enough, then please simply Google Complex Regional Pain Syndrome. It really is as simple as that. We deserve that respect.