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CRPS/RSD information

What is CRPS/RSD?!

It is Complex Regional Pain Syndrome and is also known as Reflex Sympathetic Dystrophy.It is a chronic pain condition that usually starts in a limb after an innocuous injury causing pain beyond what is expected. It can spread along the limb, mirror to another limb or spread whole body; including internal organs and eyes/face.
There is no known cure but through this blog I hope to share more on what it is.

Tiffanys story

Tiffanys story Posted on Sep 06, 2013 19:30

My name is Tiffany and I am 24 years old. For the past 11 years, I have been fighting a battle of chronic pain called Reflex Sympathetic Dystrophy (RSD) and Complex Regional Pain Syndrome (CRPS), or shortened to RSD/CRPS. Reflex sympathetic dystrophy is a clinical syndrome of variable course and unknown cause characterized by pain, swelling, and vasomotor dysfunction of an extremity. Complex Regional Pain Syndrome is an uncommon form of chronic pain that usually affects an arm or leg.

Many people have no idea what this condition is and it’s my goal to change this by bringing awareness to the pain and suffering that my RSD/CRPS friends and I live each day. People judge me all the time and say, “how can someone so young have RSD or your pain is in your head.†RSD/CRPS doesn’t care how old or young you are, male or female , rich or poor. It is a life changing rare disorder and there is no cure.

I first developed this rare disorder after having surgery at the age of 13 or 14 years old. I fell in gym class playing volleyball i had a tibial tubercle plasty where the drs break the leg on dec 31 2003. I will never forget the look on my drs face as he told me im sorry i cut the wrong nerve and you now have rsd/crps i had numerous surgeries on my leg which led to developing this chronic pain disorder. I also developed RSD/CRPS in my right arm from flipping and rolling my Mom’s jeep back in 2006. I only broke my wrist and everyone was fine, however, the RSD spread to my arm.

In 2008, I re-broke my wrist trying to stop an elevator from crushing my friend. I was being treated with medicine and spinal blocks but from all the surgeries and the nurses poking my veins, I developed RSD in my left arm too. Then they tried to put an IV in my foot to give me a spinal block yeah well what a joke they poked me about 10 times giving me RSD/CRPS in my foot which spread from my foot to hip. So now I have RSD in both arms from shoulder to fingers and both legs from hip to toes. I have pain everyday. Every minute. Every second. At all times. I take pain killers. And no, I don’t just take medicine to get “high.†I actually need my medicine! I wake up to every day to body changes – hot, other times cold and the pressure on my body from pants and blankets is so painful at times I wanna cry. Imagine having to sleep with your legs elevated above your heart and all night you wake up because a blanket is causing you so much pain. Imagine your body feeling like its on fire with your hands and feet burning, swollen, stabbed pain and tingling so badly you can’t go on the computer or text someone because the pain is so intense causing major panic attacks to the point I think I was going to have to go to the hospital.

My goal is to bring awareness and help people with issues like mine. I hope you will learn about RSD/CRPS and have some compassion for people with this condition.

I bake and cook usually more around holidays than I raffle off cakes cookies cupcakes etc to raise money for charity’s I have rsd/crps I have been asking everyone if they donate or help out with charity’s.. This year was hard because I lost my grandma a year ago, than my house to sandy was literally flipped upside down, than on Christmas my mom had a gallbladder attack so she had to have it removed that’s how we spent our Christmas , than a couple days later she fell down the stairs she tripped over the dog broke her wrist in two places and to top off it all I got the flu very bad. My RSD is out of control due to the weather I cry myself to sleep. My mom wakes me up because we are still not home so we are sharing a bed my grandmas bed in my grandmas who passed away house. My aunt is living here but the bank owns the house. We have no idea when we can move home but I still want to do charity work and help others like me.

The treatment they want is ketamine or Ketamine coma in Mexico or Germany. Oh also a spinal cord stimulator. Or I can live on pills for the rest of my life while waiting for a total knee replacement too. I can’t find a dr that doesn’t want to experiment on me. Thank you Tiffany

Also lost :

I got hit bad by sandy i lost 2 cars, my back yard ,first floor of my house,, crawl space, sheds, garage,furniture , appliances like oven stove microwave, walls floor , money medicine etc,, I watched my life get destroyed in a matter of one night.


Tiffanys story Posted on Sep 06, 2013 19:30

Show that you care

Make yourself aware

Of what you might ask?

I don’t care what race you are

I don’t care if your gay or straight

Pretty or ugly

Rich or poor

Young or old

Love to go out or stay home

Have hobbies that you love or

that make you stand up for hours

Have great family and friends

I really don’t care if your Caring or selfish

Oh you say you have A job ill fix that

Because I’m the most selfish uncaring thing in the world. If you think you have friends and family think again once you tell them you have a chronic pain syndrome called rsd/crps you will find out who is a loyal friend and loyal family member

They say blood is thicker than water yeah right

Ill make sure they think its all in your head

Make you mad

Make you sad

Make you not focus

Make you feel like a zombie from lack of sleep

Make you not want to leave the house because of what I’m doing to your skin

I will emotionally physically and mentally drain you

I won’t stop until I take everything from you

Your money

Your saneness

Ill make you think your going crazy

Ill make you think your a druggie

So people call you hot and beautiful

I will make you feel physically hot by making your skin feel like its on fire

Fine fine ill tell you who I am

My name is RSD/CRPS get use to me ill be here forever!!

I can go away for a little with the right amount of drugs and treatment

Your skin burns you say well

Someone who can put out the fire

Good luck finding someone who can put up with me.

Yours truly