Burning Nights CRPS Support is a UK national charity dedicated to raising awareness of Complex Regional Pain Syndrome (CRPS)
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New CRPS RSD Story

NEW CRPS JOURNEY

2020-03-12

NEW CRPS JOURNEY

Our new CRPS journey for this month is from a lady called Kelli Kuhl from the USA who started her problems with CRPS/RSD 15 years ago.

This is Kelli’s CRPS journey:

I would like to share my story with everyone: It all started 15 yrs ago. I was actually mowing our lawn on a rider lawn tractor and had this gawd awful pain in the right arm to my chest. I actually thought I was having a heart attack. I ended crashing the lawn tractor into the ditch where my neighbor found me. By the time they got there I was still in pain but refused an ambulance. My husband rushed home and took me to the University hospital. I was screaming and crying from the pain….no I am not a baby, I can tolerate pain but this was truly unbearable! They ruled out a heart attack and sent me on my way.

For 3 straight days I cried in sheer pain. Back and forth to many, many, many doctors and to no avail…they kept telling me nothing was wrong. They sent me to a pain clinic where my husband and I was told that it was all in my head and that I needed to see a Psychologist. I refused that…I knew it was not in my head! Many years later and about 100 ER visits and probably 200 dr. visits I finally sat down with my regular physician and cried on her shoulder. She knew there was something wrong but couldn’t pin point it.

5 EMGs, 4 CAT scans, MRI’s and multiple other tests kept coming back fine. Meanwhile I was bed ridden half the time and couldn’t even get myself out of bed. I couldn’t hold a glass to my mouth and sadly couldn’t even use the bathroom alone. Daily I was crying in pain…no sleep..no more patience, I just couldn’t do it anymore.

As I lay in bed screaming and crying with my husband next to me I asked him to please end my life, I couldn’t do it anymore. Don’t shake your head at me right now…This was the lowest of lowest points in my life and I just couldn’t do it anymore.

As you see I am here therefore I didn’t give up but truly at that point and time I wanted to. Then one night I received a phone call from my doctor who said, “Kelli are you sitting down? I got it! I know what is wrong with you!” She searched and searched and talked with many specialists & colleagues and came to the conclusion that I had RSD (which is now CRPS) She knew the exact specialist to send me to for a second opinion. She actually called this specialist at his home and he was able to see me right away the next morning.

I arrived and you would have thought I was the Queen of England. When I got there they got me right in…and I was like an “AWWW’ to the doctor who had 5 other doctors and specialists in there to see me. Within minutes they concluded that my physician was right. I can’ tell you how that felt! To go all those years being told it’s in your heard and that you are crazy…all I could do was cry. I finally knew what was wrong with me! Someone finally listened to me. No, I wasn’t cured but I had a starting point I was overjoyed and then within minutes it was all taken away. I was told there was no cure…that I was in the advance stage of RSD/CRPS. The only thing they could do to help would be medication. If someone would have just listened to me sooner would I be where I am now? Oh well it is what it is and I can do nothing but deal with it.

I would like to share a little about what CRPS has done to me physically and emotionally. Physically, it is now in both my entire arms (shoulders to fingers) both legs (hips to toes) it has attacked my heart, liver, kidneys, and eyes. I also had problems with my mouth and jaw but they can’t connect that to RSD/CRPS…but I know my body and know that it is connected. My daily life is full of this medicine and that medicine probably close to 30 pills a day not to mention injections. Again ’tis my life I was dealt and I will deal with it.

Emotionally, this is the part that gets my heart all the time. I am sad! I am angry! I am confused! And I am lost! To have my children see me scream and cry… To have my children not understand… To have my children at such a young age help dress their mom… To have my children…get me in and out of bed.. To have my children…To have my children take me to the bathroom… To have my children help me shower.. To have my children wake in the mid of might to hear me crying.. To have my children…clean up my vomit because the meds didn’t mix well.. To have my children…sit and cry with me because they can’t make me better.

So to tell you the truth I am not sure what is worse …this disease or the tears in my children’s eyes. My whole life since I was very little, when I was asked what I wanted to be when I grew up my answer was always the same …A Mommy! I wanted to be that mom that played with her children, the mom that got down on the ground and wrestled around with her children, I wanted to be that mom that was always taking care of her children…NOT THEM TAKING CARE OF ME! CRPS is a disease of torture to the body and torture to the heart strings!

Sure there are days that I am up all by myself with no help. There are days that I see people and they look at me and say I thought you were sick….you don’t look sick. It’s amazing what a person can do when they put on their fake smile to hide everything.

My prognosis: Future wheel chair (I refuse one now), dialysis, possible pace maker, liver failure and loss of sight. Yep, my future looks bright 😉

One thing for sure though, is I am not a quitter and I refuse to go down without a fight! A cure needs to be found! Early detection is key! Know the facts! Share the facts…it may save someone from being in my position.

Thank you for allowing me to share my story!

Kelli

 

Thank you very much Kelli for sharing your emotional journey with CRPS. You are right a cure does need to be found and early detection has been proven to be the key to this condition. If you want to share your story whether you are a sufferer, family member, friend or carer of a CRPS sufferer, please do get in touch as we are always looking for another new CRPS journey like Kelli’s. Don’t forget to share Kelli’s CRPS journey on social media and let’s start trending CRPS/RSD on all the social media channels!

 

Last Updated: 22/11/2015

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About the Author
As the Founder of Burning Nights CRPS Support, I want to help all those affected by this devastating condition which includes those living with CRPS, their relatives, partners, carers and friends. I'm also barrister, advocate & have lived with Complex Regional Pain Syndrome (CRPS) since 2003. I am also a bilateral (double) above knee amputee due to aggressive symptoms of CRPS. Please help spread awareness of this debilitating and life-changing condition - CRPS. We need your support!
  1. Kerry Moore Thornton

    Every journey I read makes my heart rebreak! I have suffered from CRPS for the last 3 years due to a foot surgery & it is a horrible, horrible illness! To all my CRPS Warriors, friends & suffering families I send put nothing but good vibes in your long journeys of HOPE. I would love to share my painful journey even if it only helped 1 person suffering from CRPS.

    • Victoria Abbott-Fleming

      Hi Kerry
      Thank you for your comments. If you’re interested in sharing your CRPS journey please send us an email or contact us via our contact page 🙂
      Best Wishes
      Victoria

  2. Christine Fleming

    Once again I am amazed as to how CRPS sufferers try and cope with this condition. I pray that through the strength ands courage you all show plus the work being done by this site will help enlighten the medical profession and researchers to find a cure. Donate now to help this cause so that the valuable work can carry on.
    My prayers and love to you all

  3. CINDY ROBINSON

    THIS STORY IS SO SIMILAR TO MINE WITH EXCEPTION THAT I ONLY HAVE IT FROM THE WAIST DOWN. I ALSO HAD BACK SURGERY OF WHICH WAS THE CAUSE. IMMEDIATELY AFTER COMING OUT OF SURGERY I STARTED FREAKING OUT ABOUT THE PAIN I FELT IN MY LEGS AND ESPECIALLY MY FEET, THE DOCTORS SAID IT WOULD GO AWAY BUT IT JUST SEEMED TO GET WORSE. ALSO LIKE YOU I WENT FROM DOCTOR TO DOCTOR AND EMERGENCY ROOMS TO NO AVAIL, BUT IT TOOK OVER FOUR YEARS TO GET A DOCTOR EVEN TO TAKE A LOOK AT ME WITH ALMOST ALL THE OTHER DOCTORS ACCUSING ME OF JUST WANTING DRUGS OR IT BEING IN MY HEAD! AFTER THREE PAIN CLINICS TWO INDEPENDENT MEDICAL STUDIES THEY FINALLY CONCLUDED I HAD RSD/CRPS. AT THIS POINT ALL THAT COULD BE DONE IS DRUGS. I HAVE ALSO BEGGED FOR MY HUSBAND TO KILL ME AND I THOUGHT OF TAKING MY LIFE SINCE HE SAID NO, HOWEVER, MY CHILDREN MADE ME PROMISE TO NEVER THINK OR DO ANY THING TO MYSELF AND OF COURSE I DID…I AM NOT AS BAD AS KELLI AND I WILL PRAY FOR YOU, BUT THIS DISEASE NEEDS TO BE RESEARCHED TO FIND A CURE. SO I AM BEGGING EVERYONE WHO READS KELLI’S STORY AND MINE THAT THEY DONATE TO THE CAUSE. PLEASE SEND KELLI’S STORY OUT, PLEASE!!!

  4. tigger1

    thank you Kelli for being able to share your story. I know that an awareness of C.R.P.S. is beginning to raise its head and the more we can show and tell the world then more [people will become aware of this dreadful illness. But we want more we want research and hopefully a cure. Burning Nights is about that. take care and thank you for telling your story

  5. Kelli

    Thank you for sharing my story!

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