Hello. My name is Complex Regional Pain Syndrome… you were surprised by the pain today, right? Let me introduce myself, some friends who have known me for a long time call me RSD or CRPS …… I am an invisible inflammatory disease that attacks the sympathetic nervous system.
Now I'm stuck with you for life. If you have CRPS, wait and pray for remission, but there is no cure. I'm very crafty, I don't show up on your blood tests, X-rays, MRIs can't detect me, basically there's no proof that you have me. There is only evidence to rule out other things. Others around you cannot see or hear me, but YOUR body feels me, I make sure of that. I can attack you anywhere and however I please. And I'll do it. Steadfast, relentless, and intensely. I can cause severe pain or, if I'm in a good mood, I can cause pain all over your body.
Remember when you and your energy would run together and have fun? Well, I took care of taking your energy and I gave you exhaustion. Try to have fun now! I can take away your good sleep and instead give you brain fog and lack of concentration. I can make you want to sleep 24/7, and I can also cause painsomnia, a special form of insomnia.
I can make you shiver internally or make you feel hot or cold when everyone else feels normal. I can make a limb change color, look bruised, feel super sensitive at random for no apparent reason. I can also give you swollen hands and feet, swollen face and eyelids, swelling of everything.
OH, and just because I started in one part of your body, don't think that I can't travel and affect other limbs or any other part of your body that I choose to torment. I can, and probably will.
I can make you feel very anxious with panic attacks or very depressed. I can also cause other mental health problems. Do you know the crazy mood swings? That's me. Crying for no reason? Angry for no reason? it's probably me too. It's hard not to feel desperate when you have me constantly hitting your body.
Many of those I visit are literally dying to escape and will do whatever they can to end our entire inseparable bond.
I can literally make you scream out loud, at any time of day or night, wherever you are, because I can create pain that assures you that someone stabbed you with a knife. Making you look crazy is fun to me. I can make your hair fall out, your nails become dry and brittle, your teeth become brittle and cracked, give you acne, give you dry skin, the sky is the limit for me. I can make you gain weight and no matter what you eat or how much you exercise, I can keep that weight on you. I can also make you lose weight. I do not discriminate.
Some of my other friends from inflammatory diseases often join me, giving you even more to deal with. If you have something planned or are looking forward to a great day, that is sure not to happen. You didn't ask me. I chose you for several reasons:
That sports injury, needle stick, sprained ankle, or that car accident, or maybe it was surgery to correct a bone problem. Whatever the cause, I'm here to stay. Heard you're going to see a doctor to try to get rid of me. That makes me laugh. Just try it! You will have to go to many, many doctors until you find one who can try to help you effectively. Most of them will make you feel like you're at fault, or worse, it's all in your head. I will convince them that you are crazy because normal people know that you can't have all these symptoms all over your body and still walk around looking normal. They will give you the wrong medication for you, painkillers, sleeping pills, energy, they will tell you that you suffer from anxiety or depression, and they will give anxiolytics and antidepressants.
There are so many other ways that I can make you sick and miserable, the list is endless - if your body is suddenly dealing with things that were never problems before ... yeah ... that's probably me.
Shortness of breath or "shortness of breath"? Yes, probably me. Bone density problems? Can't regulate body temperature and poor circulation? Constant "electric shocks" and "burning sensation" Yes, probably me. I told you the list was endless.
They may give you electrostimulation, a massage, tell you that if you sleep and exercise properly, I will go.
They will tell you to think positively, they will tell you over and over again and, ABOVE ALL, they will not take you seriously when you try to explain to the countless doctors you have seen how debilitating I am and how sick and exhausted you feel from truth. In all likelihood you will get a referral from these "understanding" (clueless) doctors, to see a psychiatrist.
I'll make you question your own sanity sometimes. I will make you contemplate unthinkable scenarios. Your family, friends, and coworkers will listen to you until they get tired of hearing how I make you feel and how debilitating I can be. Even after explaining to the people you interact with regularly that I am the MOST painful disease known to man and that there is NO cure, they will say things like "I hope you recover soon", "You look better today" or "You do not see yourself sick. ”Those who don't know me well have no idea how cruel and unusual my punishment can be.
Some of them will say things like "Oh, you're just having a bad day" or "Well remember, you can't do the things you used to do 20 YEARS ago", they will hear you say 20 DAYS or 20 MINUTES ago. They will also say things like "if you get up and move, go out and do things, you will feel better." They won't understand that I take away the 'gas' that energizes your body and mind to ALLOW ME to do those things. Some will start talking behind your back, they will call you a hypochondriac, while little by little you feel that you are losing your dignity trying to make them understand, especially if you are in the middle of a conversation with a "normal" person, and I cannot make you remember what you were going to say next. They'll say things like, "Oh my sister had that,
They will not understand that having this disease affects your body from the top of the head to the tips of the toes, and that every cell and every system and organ in the body can be affected.
The only place where you will get the kind of support and understanding in dealing with me is with other people who have me. They are really the only ones who can truly understand you.
Always yours, Complex Regional Pain Syndrome
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