This CRPS journey is from Kelli Kuhl in the USA whose problems with CRPS began over 15 years ago.
I would like to share my story with everyone: It all started 15 years 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 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 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!
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!
Thank you Kelli for sharing your emotional journey with CRPS. Early diagnosis and the right intervention soon after is crucial for Complex Regional Pain Syndrome. Don’t forget to share Kelli’s CRPS journey on social media and let’s start trending CRPS on all the social media channels!
If you have been affected in any way by the personal stories or details on the Burning Nights CRPS Support website, please contact us.
November is CRPS awareness month and we are looking for more stories like Jack’s CRPS story to share with you on our website, to show that you’re not alone either living with this horrific chronic condition or that you live or love someone with CRPS.
If you’d like to share your CRPS story with us, please get in touch with your story (maximum 1000-1250 words) and a couple of photos that we can share to show how people have been affected by Complex Regional Pain Syndrome. Visit How to share your personal CRPS stories to find out more. We’re here to support you!
If you would like to read some other stories of living with CRPS, here are a few for you take a look at: