Family copes with CRPS illness despite difficult times
Sixteen-year-old Abbi Ulmer has complex regional pain syndrome (CRPS), a chronic pain condition she's had for four years.
“I'm in pain 24-7. It's always a risk that when I'm doing things it will make it worse. I have decreased mobility, so I have to get around with a walker, crutches or a wheelchair. I constantly feel like I'm on fire, or someone is breaking my bones or stabbing it.”
Mom Rachelle explained it started in the right leg and has spread, now affecting her right arm and hand, her heart and digestion.
“The undigested food comes up multiple times a day,” explained Rachelle.
Abbi is constantly at doctor's appointments, getting blood work or heart scans, and malnourishment is a constant concern. Abbi's had several hospital admissions, one lasting six months and this past summer she was in for more than two months. She was in hospital in November when her dad Tyler suddenly passed away from a heart attack at the age of 42.
Now, on top of everything else, the family is dealing with this loss. CRPS causes discolouration and for Abbi her leg will either be black or red hot and swollen. She is unable to have anything touch her leg, not even pants in the winter. Even without anything touching the leg or foot, blisters will form as the leg gets so hot, although the blistering is much worse if she wears clothing.
“The way to combat it, you do really intense physio. You need to retrain your brain there is no injury. You have to walk and push, do all those things that cause the pain to go through the roof, while balancing a higher heart rate. Unfortunately, when she lands in hospital or malnutrition, she's light-headed, her blood pressure isn't great and is bed bound, going 100 steps backward in rehab,” said Rachelle.
Medically speaking, it is the most painful disease known in humans and is nicknamed the suicide disease. While they've had lots of help from the Children's Hospital, things have been at a standstill for about a year with nobody having any answers.
Abbi is booked in for her first session at Spero clinic in Fayetteville, Ark. on Feb. 20. The clinic specializes in CRPS and offers a holistic approach. They will create a plan that is best for Abbi, but it requires her to be there for a minimum 14 weeks. There will be intense rehab along with neurologic re-education. Abbi is the eldest of three, with a younger sister and brother. As the family is now single-income, Rachelle won't be able to stay with her daughter and both sets of grandparents will help.
The deposit was made last summer for Abbi to attend the clinic and they don't want to put if off despite everything as getting Abbi's life back on track is what is most important.
A Grade 11 student at Monsignor McCoy High School, Abbi has worked hard to keep up with her education. Last year she missed about 75% of the year but managed to catch up on all her Grade 10 work over the summer. This year she's missed about 50% of her schooling but is hoping to do at least once class while she is in Arkansas. Facebook and Instagram groups have been created called Abbi's CRPS Journey where she will post regular updates. A GoFundMe page called Abbi's Recovery from CPRS has also been created to assist the family financially.