One day, you are just like everyone else, happy and free. You are no more at risk to chronic illness than the people around you and you have no idea how easily you can become affected by it. You live day to day without a worry in the world until some small injury, surgery, or even something as small as a spider bite, turns your world upside down. The pain leaves you baffled for days, weeks, months, more likely than not, years, as you are thrown between different doctors and specialists with no answers. As the days go by, the pain worsens, leaving you on crutches, in a wheelchair, completely disabled, and often bed ridden. Still no answers; and now a lot more is on your plate than pain alone. You begin to notice that wearing clothes is painful, your affected limbs are swelling and are purple in color as well as ice cold, you are constantly fatigued and most days can’t lift your head up due to a pounding headache. This is just the beginning…
Finally, one day after searching long and hard, you find a doctor who can give you answers. A feeling of relief floods your body just for frustration and anger to flood it minutes later.
“You have Complex Regional Pain Syndrome (CRPS), otherwise known as Reflex Sympathetic Dystrophy (RSD).” Your doctor enlightens you.
First you’re thinking, What the heck is that?, then, after being told that it’s chronic and there is no cure, chances are you are bursting into tears. Once again, this is just the beginning. Just when you thought this doctor would be your saving grace, you’re thrown into a life of undergoing treatments…many with risks, that are not covered by insurance, and don’t guarantee you your life back. Since you’re hopeless and feel that the quality of your life with chronic pain will not be a good one, you do whatever it takes.
Complex Regional Pain Syndrome (CRPS) and Reflex Sympathetic Dystrophy (RSD) is when your nervous system never stops sending pain signals. Your nervous system works by pain signals being sent from your brain, down your spinal cord, and out to the source of pain. With CRPS/RSD that injury, spider bite, surgery, or whatever the case may be is healed, yet due to an abnormal reflex developed in your spinal cord, the signals get caught up and never stop sending, leaving your nervous system hyperactive. Overall, CRPS/RSD is a malfunction of ones Autonomic Nervous System.
Many may hear that I’m in pain every day, hour, minute, second, but I feel that the constant burning, cutting, stabbing, and throbbing sensation that I feel doesn’t completely sink in for many. Please allow me to enlighten you. Below is the McGill pain scale which is a rigorously tested pain scale by scientists. Notice that CRPS is rated as the worst pain known to man. Now try your very best to imagine that level of pain not for a split second but constantly, meaning every second of your life. On top of pain, we are faced with several side effects that can consist but are not limited to: temperature and color changes of the affected limb, headaches, fatigue, nausea, sensitivity to touch, involuntary muscle movements, depression, stiffness, etc.
I know an outsider may look at those affected and think they can’t possibly be in that much pain and go about their life and appear as well as they do. I’m here to inform you that, yes, we can, and myself along with others are living proof of this. We are fighters, we are warriors. It’s our reality and our norm, so we figure, why sit around and mope about it? That would do us no good and leave us more depressed than we already are. Having CRPS/RSD really proves to you that sometimes the best thing you can do for yourself is make the best out of the life you were given to live. It’s not an easy task so next time instead of not believing someone affected, tell them how much you look up to them because they are one hell of a person to fight this fight everyday.
One of the worst parts about having this illness is the lack of understanding and support many get from the people around them. The being called names such as “attention seeker” and “faker”. This all comes with having an invisible illness. While at times our illness becomes visible, it is not often enough for people to believe us. Below, I have attached some visible aspects of CRPS.
Although I’m showing you the ugly side to this illness, not everyone exhibits visible signs of pain and suffering. However, we all suffer from similar hardships due to the many side effects that come as “baggage” with CRPS. Let me highlight a few of the ways this beast affects us in our daily life. In the morning, we wake up to a body of aches and pains and fatigue so bad we feel like a bobble head. We rally up our strength to get out of bed and make our way downstairs to eat breakfast, but, as effortless as breakfast should be, it leaves many of us extremely weak. Then, as we are headed up the stairs to go get cleaned up, we fall down the stairs due to our body giving out on us. No worries, that is just more pain and some possible injuries, but we are tough, after all. We go to take a shower and the water hitting our skin feels like a mixture of boiling water and needles being thrown at our skin. We get dressed, and in the process turn our room upside down in hopes of finding an outfit that is bearable to wear and doesn’t feel like razor blades cutting our skin. On the way out the door, we go to take a sip of water but due to the involuntary muscle movements end up wearing it. We take on the rest of our day in a similar fashion. At the end of the day, we crawl into bed, our only wish to get a good night sleep, but end up with our limbs hanging off the side of out bed in hopes of escaping the excruciating pain from our bed sheets touching them. We are left up for hours on end, most likely crying for the pain to stop so we can get some rest, and many are praying that they won’t wake up in the morning to avoid doing it all over again.
Just as you can imagine, a life like this is depressing. Therefore, many of those affected suffer from moderate to severe depression, yet you rarely see them without a smile on their face. The complications and problems associated with CRPS/RSD go beyond depression, though. Many sufferers have been diagnosed with other illnesses after their diagnosis of CRPS/RSD. Several of those illnesses being associated with the Autonomic Nervous System as well, such as Postural Orthostatic Tachycardia Syndrome (POTS) to name one.
Nothing is proven and guaranteed to help this excruciating pain. The pain does not respond to medications, even things as strong as morphine. As earlier mentioned, there are treatments available but many are not covered by insurance and have several serious side effects. Several doctors are not even aware and educated on what CRPS/RSD is. This leaves sufferers with close to no hope and no options. CRPS/RSD has been nicknamed the suicide disease due to the intensity of the pain leading many to death.
Please utilize this article as a way to educate others and get the word out there that CRPS/RSD is very real and debilitating. Nobody deserves to suffer from it and I wouldn’t wish it on my worst enemy. If you would like to help those affected, donate, or learn more about CRPS/RSD please visit the RSDSA’s homepage.