Greetings…. My name is…

Hi my name is...

Hi my name is…

Hi my name is Complex Regional Pain Syndrome… some friends who have known me for a very long time call me RSD or CRPS…… I’m an invisible inflammatory disease that attacks your sympathetic nervous system.
I am now velcroed to you for life. If you have CRPS you hope for remission but there is no cure.
I’m so sneaky–I don’t show up in your blood work, in x-rays, MRI’s can’t detect me, basically there is no test to prove you have me. There are only test to rule out other things.
Others around you can’t see me or hear me, but YOUR body feels me.
I can attack you anywhere and anyway I please. And, I will. Constantly.
I can cause severe pain or, if I’m in a good mood, I can just cause you to ache all over.
Remember when you and energy ran around together and had fun?
I took energy from you, and gave you exhaustion. Try to have fun now.
I can take good sleep from you and in its place, give you brain fog and lack of concentration.
I can make you want to sleep 24/7, and I can also cause insomnia.
I can make you tremble internally or make you feel cold or hot when everyone else feels normal.
I can cause one limb to change color, look bruised, feel super sensitive randomly for seemingly no reason.
I can also give you swollen hands and feet, swollen face and eyelids, swollen everything.
OH, and just because I started off in one part of your body, don’t think I can’t travel and effect other limbs or any other part of your body I so choose to torment. I can, and likely I will.
I can make you feel very anxious with panic attacks or very depressed. I can also cause other mental health problems. You know crazy mood swings? That’s me. Crying for no reason? Angry for no reason? That’s probably me too. It is hard to not feel hopeless when you have me beating your body up constantly.
I can make you scream out loud, anytime of day or night, anywhere you are because I can create pain that makes you sure someone just stabbed you with a knife. Making you look crazy is fun for me.
I can make your hair fall out, your nails become dry and brittle, cause acne, cause dry skin, the sky’s the limit with 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 don’t discriminate.
Some of my other inflammatory disease friends often join me, giving you even more to deal with.
If you have something planned, or are looking forward to a great day, I can take that away from you. You didn’t ask for me. I chose you for various reasons: That sports injury, needle stick,, or that car accident, or maybe it was the surgery to correct a bone problem.. Whatever the cause, I’m here to stay.
I hear you’re going to see a doctor to try and get rid of me. That makes me laugh. Just try. You will have to go to many, many doctors until you find one who can even try to help you effectively. Most of them will make you feel like you are to blame, or worse, it is all in your head. I’ll convince them that you are crazy because normal people know that you can’t have all those symptoms all over your body and still walk around looking normal.
You will be put on the wrong medication for you, pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given anti-anxiety pills and antidepressants.
There are so many other ways I can make you sick and miserable, the list is endless – If your body is all of a sudden dealing with things that were never issues before…yep…. that’s probably me.
Shortness of breath or “air hunger?” Yep, probably me.
Bone density problems?
Can’t regulate body temp and poor circulation?
Constant ‘electric jolts’? Yep, probably me.
I told you the list was endless.
You may be given a TENs unit, get massaged, told if you just sleep and exercise properly I will go away.
You’ll be told to think positively, you’ll be poked, prodded, and MOST OF ALL, not taken seriously when you try to explain to the endless number of doctors you’ve seen, just how debilitating I am and how ill and exhausted you really feel. In all probability you will get a referral from these ‘understanding’ (clueless) doctors, to see a psychiatrist.
I will make you question your own sanity at times. I will make you contemplate unthinkable scenarios.
Your family, friends and co-workers will all listen to you until they just get tired of hearing about how I make you feel, and just how debilitating I can be.
Even after explaining to those you interact with regularly that I’m the most painful disease known to man, and there is no cure, they will say things like “I hope you have a speedy recovery”. 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 are just having a bad day” or “Well, remember, you can’t do the things you use to do 20 YEARS ago”, not hearing that you said 20 DAYS ago.
They’ll also say things like, “if you just get up and move, get outside and do things, you’ll feel better.” They won’t understand that I take away the ‘gas’ that powers your body and mind to ENABLE you to do those things.
Some will start talking behind your back, they’ll call you a hypochondriac, while you slowly 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 can’t remember what you were going to say next. You’ll be told things like, “Oh, my sister had that, and she’s fine on her medication” when you desperately want to explain that I don’t impose myself upon everyone in the exact same way, and just because that sister is fine on the medication SHE’S taking, doesn’t mean it will work for you.
They will not understand that having this disease impacts your body from the top of your head to the tip of your toes, and that every cell and every body system and organ can be effected.
The only place you will get the kind of support and understanding in dealing with me is with other people that have me. They are really the only ones who can truly understand.

Author Heather Gilmore… But kindly shared with the RCDOM community by Gaylynne Gale

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14 Responses to Greetings…. My name is…

  1. Tim Alexander says:

    My wife lives this and these words all come from her the only thing more cruel than this disease is the lack of awareness/ compassion for such a painful and debilitating condition. Thanks for the great work your doing.

  2. b. Jones says:

    This article sums up the things I can not say. The daily thing I suffer. And true the only thing worse is trying to explain to others and get alot of medical professionals to accept it is real

    • Naanad says:

      It is a daily struggle. But you are the driver of the car of a body you exist in. Don’t give up, one of these days you will be able to take it off autopilot.

  3. Franci Greenberg says:

    VERY good description of a day in the life of RSD. BUT I refuse to give in or give up. I will find what helps and what works for me and share. We all need to share and help one another, because we understand it the best.

  4. Trisha Bullock says:

    I could cry. Not in sorrow, but because after all these years, someone truly understands. If this was written by a man, I’m in love. If this was written by a woman, I want to adopt you as my fifth sister. I still wonder if amputation isn’t still an option, but I suspect the damage is already done. To the person(s) responsible for posting this, may whatever higher power you acknowledge bless you the rest of your life.

  5. Nancy Gardner says:

    My son died from complications from CRPS/RSD. He had Stage 3. This article explains in minute detail what Ken experienced. Rest In Peace my son. We are working to make others aware especially the medical profession what CRPS is and what it does to those suffering with it.

    • Jerie says:

      Thank you for sharing the truth. CRPS can be life threatening! Most certainly shorting my life span as I have it systemically.

  6. Mike Karnyski says:

    The article was very good relating to what we go through.I suffer with the Monster for 22 years.It started in my right hand and arm after having my hand crushed by over 1500 pounds of steel.Mine then spread to my shoulders,back,and then both legs and feet.I would love a copy of this so that I could share it with my Support Group.

  7. claie says:

    This is my life every day x

  8. Todd Hoeft says:

    I develop CRPS after breaking both ankles, one required surgery. 4 months after surely I woke with burning pain in both feet. I’ve tried PT, nerve blocks, meds,hypnotherapy and blood flow restriction therapy and spent about 20,000 out of pocket. Because I’m no longer working I have no health insurance. It stole my career, hobbies and strained my marriage. Worst part is friends and family have no clue the torment your dealing with every single minute of every day. If not for my kids I’d have already eaten a bullet by now. For now I keep trying for them. My heart goes out to all my burning brothers and sisters.

  9. This is my life summed up with CRPS after having a Shoulder Operation Having tried many Tablets Morphine etc I feel so awkward to keep saying to friends I am still in terrible pain as they keep saying you must be getting better now it has been ages since your operation it’s not from the Operation it is this dreadful CRPS even Doctors just don’t underststand

  10. Kaiitrina says:

    GREAT DESCRIPTION Of What We Go Threw Day In And Day Out In The Life Of RSD/CRPS I’m Going To Fight And Stay Positive I’m Looking And I Try Some Way’s To Get Relief We All Need To Share Any Information That We Find That Works Or Something That Might Benefit Other’s

  11. Cathleen says:

    Definitely describes what I live with on a daily basis. It is do helpful to know that there are others that understand and believe us.

    I would love a copy of this to Gand out.

    Thank you

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