Wow! I can’t believe that there has been over 70,000 views of this blog! That is just… amazing. I know that many of you who follow this blog are not just following my journey with this disease, but are also, unfortunately, dealing with it on a personal level, whether through your own battle, or that of a family member. November is RSD/CRPS Awareness Month, so in honor of that, I wanted to just share a little about the disease.
Reflex Sympathetic Dystrophy (RSD) is a painful & debilitating chronic neurological disorder that occurs when the nervous system malfunctions in response to a injury or illness, in my case, it was triggered by neurologic Lyme Disease. The hallmark symptom of RSD/CRPS is burning pain... so intense that the most potent pain relievers are completely ineffective, leaving you with the feeling that your body is actually on fire.
There currently is little knowledge and understanding of RSD/CRPS, even within the medical community. Because of this, RSD often goes misdiagnosed during its early stages, which is when the disease is most easily treated and can be put into remission. If not treated promptly, aggressively and correctly, the RSD pain can spread rapidly.
I have met so many people along my journey who are also struggling with this disease. I have seen many improve, only to relapse because of limited access to effective treatments. The suffering with this disease runs so deep- it not only physically effects the patient, but the entire family suffers the emotional consequences that come along with this type of unimaginable, unrelenting. 24/7, pain.
Right now, there are certainly a lot more questions than there are answers for many RSD patients. It is a complex, mysterious and very confusing disease.
I believe that Ketamine can definitely be a big part of the answer, for so many. And for now, it is probably the best weapon we have in our battle against this horrible disease, for me, it has been a God-send, however, we need a cure.
For me, it has given me the chance to have a life again. I am re-discovering my love of music, movies, people… and food! I ate spaghetti and meatballs for dinner for the first time in years (thanks Mom- it was great!) Each day my mom helps me out of my bed into a recliner chair (thanks Betty!) I can now stay in it for almost 3 hours! I know to many, these things may not seem like a big deal, but for me, after being completely bedridden for 5 years and fed through a feeding tube for nearly 3, every step in the right direction is just amazing! As Dr. Cantu so eloquently puts it, “Small Steps= Huge Advances!”
I am so blessed and so thankful to be doing so much better. It hurts to think about all of the people who are out there suffering so greatly with this monster of a disease.
We need more awareness of this devastating disorder. We need much more research to find the underlying cause(s) of RSD and identify ways to treat and prevent it. We desperately need a definitive and long-lasting cure.
My hope and my prayer is for answers, for all of us, who are dealing with this illness and for the doctors who are working so hard on our behalves to relieve our suffering and lead us back to better, less-painful lives.
For more information on RSD: