My mom, Carla, has suffered from CRPS since November of 2012 when she slipped on the stairs in her home and twisted her ankle. She was told by doctors that it was just a sprained ankle but she knew something was terribly wrong when the pain kept getting worse and the swelling grew. Doctors took X-Rays, MRI’s and found nothing, they kept saying she had a sprained ankle and sent her to an orthopedic doctor who finally diagnosed her with CRPS in February of 2013. CRPS stands for complex regional pain syndrome and is brought on after a major or minor injury and even surgery. CRPS is a malfunction in the central nervous system, the injury may have healed and is no longer present, but the brain still believes the body is injured and causes the nerves to be overactive, causing severe pain. Symptoms of CRPS include but are not limited to:
• Continuous burning or throbbing pain, usually in your arm, leg, hand or foot
• Sensitivity to touch or cold
• Swelling of the painful area
• Changes in skin temperature — alternating between sweaty and cold
• Changes in skin color, ranging from white and mottled to red or blue
• Changes in skin texture, which may become tender, thin or shiny in the affected area
• Changes in hair and nail growth
• Joint stiffness, swelling and damage
• Muscle spasms, tremors, weakness and loss (atrophy)
• Decreased ability to move the affected body part
Other symptoms mom has suffered from include cyclic vomiting syndrome, loss of appetite, weight loss (from weighing 130 lbs to 92 lbs within the last year) sensitivity to sounds, lights and motion. She has made many trips to the ER over the years for extreme pain and vomiting that she could not get under control. CRPS is actually number two on the list of the most painful diseases in the world. Her life for the last 5 years has included many pharmaceutical medications and invasive surgeries and treatments. When she was first diagnosed in 2013 doctors urged her to get nerve blocks and a spinal cord stimulator that they claimed to be the cure all. She agreed to having nerve blocks done but after the first procedure the CRPS immediately spread from her ankle to her hip. She then refused nerve blocks and the stimulator at that time. Her pain management doctor at the time then encouraged her to have ketamine infusions. Ketamine is a horse tranquilizer and causes hallucinations and she had to be admitted into ICU for a week to have the infusions. While ketamine was very rough on mom it did alleviate her symptoms from CRPS. A couple years later and her CRPS became worse, she no longer was able to work and had difficulty moving around her home; eventually she was ruled as disabled. Her new pain management doctor insisted that the spinal cord stimulator was her last hope otherwise there was nothing more he could do for her. Mom hesitantly agreed to have the stimulater put in; immediately after waking up from surgery she noticed the CRPS had then moved into her other leg (her good leg). My mom now has CRPS from her waist down. She was bound to her bed and wheelchair for two years until we finally found hope. The Neurologic Relief Center in Fayetteville Arkansas is the only facility in the world that does what they do to help people with CRPS on their road to remission. We have finally gotten mom here after many years of pain, tears and worry. After her first day of treatment mom was able to walk with a walker, by the fourth week she was out of her wheelchair completely. Her pain level goes down during treatments, however it doesn’t always stay down. Since it does not stay down all the time her pain level can go up to a 6, her skin is sensitive touch and the weather in Arkansas still causes flare ups. We believe mom is right around the corner of remission, however, her treatment here is lasting longer than we expected. We have exhausted all funds due to treatment, housing and food. And Unfortunately this type of treatment is not covered by insurance and has to be paid out of pocket. We no longer have the funds to continue her treatment.
Mom has said that her motivation and main goal is to be able to play with her grandchildren. After a lot of convincing mom has finally agreed to let us start her a gofundme. We want our mom back and we want her to be able to play with her grandchildren.
We are not the type to typically ask for help but right now we are desperate to have her back to her normal self.
Anything helps and we appreciate it so much.
- Joshua Daughtrey
- Ted Dixon
- LaDonna Steinlicht
- Loretta Manchester
- Natalie Faucher
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