A 19 year old’s battle with Complex Regional Pain Syndrome and the help she received from our Pain Management Clinic
“I absolutely hated my life. I wanted to die. I wanted God to take all the pain away. I prayed to God to let me die.”
How had it come to this for Madisyn Metaxas?
Only a few years earlier she was a happy kid. She was a fangirl at a Maroon 5 concert. She stressed over decorating her room a certain blue-green, mint color that was her favorite. She played volleyball. Her biggest fear in life was clowns.
But then, in only a few seconds, everything changed. Madisyn’s life spiraled into a living hell of excruciating pain and uncertainty that seemed would never end.
On Thanksgiving Day, 2014, Madisyn was home for the evening, decorating her bedroom. She stood on her bed, hung something on the wall and then jumped to the floor.
“The moment I landed, I felt this excruciating pain that went all through my left leg,” Madisyn said. “It was horrific pain. My knee swelled up and it got really, really ugly.”
Madisyn had felt pain for a week prior to jumping off the bed. She thought she had overdone it in volleyball and decided the pain would go away after a couple of days.
Over the next few days, Madisyn, who was 16 at the time, was now living a new normal – in constant pain. She thought a warm shower would make her feel better.
“It was then that something that had never happened to my body before popped up,” Madisyn wrote in her blog. “It was terrifying and I started screaming [for] my mom. The shower water not only felt like acid on my skin, but my left knee also started to feel like it had been set on fire.”
Madisyn’s leg changed colors, going from her normal skin tone to a dark red, purple and white. The red was prominent, but the other colors were blotchy. The areas that felt like fire were hot to the touch.
That evening, Madisyn went to the local emergency room where she received X-rays of her knee. The doctor came out and to everyone’s surprise he was smiling. He told Madisyn and her family he knew what was wrong because his daughter had the exact same thing. He diagnosed her with patellar tendinitis and prescribed Aleve®, ice on her knee and the purchase of a good patella band.
Two weeks later, Madisyn was still in pain and still unable to walk.
Madisyn admits to being stubborn and she thought she could wait out the pain without seeing a doctor. Finally, after a month she went to see her pediatrician.
Her doctor was at a loss, but told Madisyn it was definitely not patellar tendinitis. He thought it was possibly a torn anterior cruciate ligament (ACL). She was sent to an orthopedic surgeon where she received an MRI of her left knee.
The tests came back negative and this time she was sent to a rheumatologist in the area. She went through a gauntlet of testing for: rheumatoid arthritis, auto-immune disease and even allergies.
At this point, five months had gone by. Madisyn was sinking deep into depression. She had lost “a ton of weight.” She couldn’t even shave her legs or shower because of the intolerable pain she experienced, and she was now relying on a wheelchair 24/7.
“I was 16 years old and could not shave my legs,” Madisyn says now incredulously. “I wanted to feel feminine again. I wanted to feel pretty. All of that had been taken away from me.”
And more than anything, she wanted her pain to go away and to know why she was hurting.
Then one day, she received a call from the rheumatologist’s office with a new diagnosis – Complex Regional Pain Syndrome (CRPS).
The National Institute of Neurological Disorders and Stroke describes complex regional pain syndrome (CRPS) is a chronic (lasting greater than six months) pain condition that most often affects one limb (arm, leg, hand, or foot) usually after an injury. CRPS is believed to be caused by damage to, or malfunction of, the peripheral and central nervous systems. The central nervous system is composed of the brain and spinal cord; the peripheral nervous system involves nerve signaling from the brain and spinal cord to the rest of the body. CRPS is characterized by prolonged or excessive pain and changes in skin color, temperature, and/or swelling in the affected area.
CRPS is divided into two types: CRPS-I and CRPS-II. Individuals without a confirmed nerve injury are classified as having CRPS-I (previously known as reflex sympathetic dystrophy syndrome). CRPS-II (previously known as causalgia) is when there is an associated, confirmed nerve injury. As some research has identified evidence of nerve injury in CRPS-I, it is unclear if this disorder will always be divided into two types. Nonetheless, the treatment is similar.
CRPS symptoms vary in severity and duration, although some cases are mild and eventually go away. In more severe cases, individuals may not recover and may have long-term disability.
Madisyn was given a packet with facts such as “it’s three times more likely to affect women than men.” Because this was the extent of the information given and the doctor didn’t meet with her, Madisyn actually became optimistic. Maybe, this wasn’t such a big deal after all.
“Little did I know that the diagnosis of CRPS would change my life forever,” Madisyn writes. “Little did I know that this demon would attack me in every way possible, and completely take control of my life. Little did I know that I wouldn’t be able to walk for 8 months. Little did I know that I would lose friends from not being able to get out and do things. Little did I know that I would soon find myself lying in bed all day and night refusing to eat or drink anything. Little did I know that I would end up screaming at and questioning our ever so faithful Father God. Little did I know that it would test, break and change me in ways I never could have imagined.”
With her new diagnosis, Madisyn began to receive pain medication and see a physical therapist on a regular basis.
She looks back at that time period remembering it like a nightmare. She said her meetings with her rheumatologist at the time were horrible. He grabbed her leg, squeezed it and forcibly straightened it. Madisyn cried during her visits and dreaded going each time.
Several months into the therapy, the swelling in Madisyn’s leg had gone down. The doctor said her CRPS was in the past.
Everything that Madisyn and her parents had read contradicted that statement – CRPS is a chronic disease that doesn’t go away, but can only be treated.
The swelling soon returned, as did the excruciating pain. It seemed every time things were beginning to look up, they quickly took a turn for the worse. Before long, Madisyn was bedridden and in a wheelchair. Her depression increased and it was then that she prayed to God to end her life.
“I realize how horrible that sounds now,” Madisyn, who is now 19, said. “I’m more mature and deeper in my relationship with the Lord. But I just wanted it to be gone. All I wanted was not to feel pain.”
Desperate for answers, Madisyn and her parents felt it was time to find a new specialist. They asked for a referral to a doctor who was more acquainted with diseases like CRPS. She went to see Artee Gandhi, M.D., the medical director of the Pain Management Clinic at Cook Children’s.
“I was so anxious to meet Dr. Gandhi because my previous experience had not been very helpful,” Madisyn said. “My first appointment with Dr. Gandhi, I was terrified. But the moment she walked in through that door at Cook Children’s, I knew she was different. She approached me with kindness and gentleness. That in itself was a blessing that I had been waiting a year and a half to receive. That day was a very emotional one for me. I told her everything I had gone through and she was so compassionate. She was extra gentle with me. It was something I desperately needed.”
Dr. Gandhi put Madisyn through a new series of tests and talked to her about the different options for treatment. They began rehab and Dr. Gandhi worked to get the right dosage of Gabapentin, a medication originally developed to treat seizures and is now used to treat many varieties of neuropathic pain including CRPS.
As Madisyn made progress, the next move was to discuss a nerve block shot, which required a local anesthetic into the sympathetic nerves causing the pain.
“Blocks and medication are only meant to help disrupt those messages of pain sent from your brain to the rest of your body, long enough to facilitate physical therapy,” Dr. Gandhi said. “Physical therapy is truly the only treatment. But we need to provide enough symptomatic relief to actually do physical therapy. We then incorporate biofeedback and counseling because we want to keep in mind that each child has his or her pain psychology and their own coping mechanisms. Most children don’t tend to have a lot of experiences with pain. So they get their cues from their environment. How do their friends react to pain? What do their parents do? How do they support them? We want to incorporate the most productive ways to help the children cope with pain as possible. Biofeedback can also help with things like temperature regulation, breathing and circulation.”
By the second injection, Madisyn felt better than she had in nearly two years.
“I woke up and thought my legs were numb,” she recalls. “But because my body was so used to such a high amount of pain, I realized I wasn’t numb. I just wasn’t feeling any pain.”
With a new lease on life, Madisyn tried to make up for lost time. Against doctors’ orders, she returned to her old ways as an athlete and fitness freak. She worked out five days a week for as much as two hours at a time.
“It bit me on the back side,” Madisyn said. “The pain came back and it was even worse this time. I had been out of pain and had gotten my life back. To have it taken away a second time, it was so much worse.”
Dr. Gandhi told Madisyn she couldn’t give up. They had to get back to work and attack the disease again.
Madisyn began to research more about CRPS. She joined a Facebook group and heard other people’s stories of triumphs and tragedy. Suddenly, she didn’t feel alone.
In doing her research, Madisyn heard of a man who received an epidural to relieve his pain from CRPS. She took the idea to Dr. Gandhi.
Dr. Gandhi thought the option over and decided they would give it a try, but that would only be the beginning of her treatment. Madisyn spent 10 days at Cook Children’s Medical Center.
“We bring the children here to our inpatient rehabilitation unit,” Dr. Gandhi said. “They have 6 hours of occupational therapy a day. It’s not just regimented therapy either. We help them get their lives back. We take them to the mall or bowling. We create group activities and group exercise. They participate in cognitive behavioral therapy and learn coping mechanisms. We teach deep breathing and relaxation as a way to reset the pain system. All patients undergo neuropsychological testing to evaluate for underlying anxiety, depression, and learning disabilities. We work not only with the child, but also with the parents to prepare them for life at home.”
Dr. Gandhi said often times children with CRPS feel helpless because they can’t make their pain go away and they feel like no one understands them or can treat their illness. That becomes a feeling of despair. Eventually they aren’t able to go to school any longer or interact with friends and their functional disability starts to occur.
“Those are signs of chronic pain becoming a problem,” Dr. Gandhi said. “They are afraid because they believe something is seriously wrong with them. Chronic pain is serious. But then they are so relieved when they finally have the answer. Finally, someone has told us what’s going and now there’s a plan in place.”
Madisyn had slipped into that despair. As she lost her mobility, she lost friends too. She eventually dropped out of school because of her pain and she stayed in bed.
But as she has recovered, Madisyn has gotten back on track. She has received her high school diploma and wants to become a veterinarian technician. She loves animals and as her condition has improved, she’s been able to start her own business – as a dog walker. That’s a long way for a girl who wondered if she would walk without assistance from a cane.
Madisyn actually jogged for the first time in two years at the end of her stay at Cook Children’s. She recalled Dr. Gandhi walking in on her, while crying tears of joy. “That’s something I never thought I would do again,” Madisyn said.
Dr. Gandhi helped plan how they would continue to care for Madisyn when she returned to San Angelo. She continues to see a rehab therapist and a counselor, as well as visit with Dr. Gandhi via telemedicine.
“It’s still hard. I still suffer on some days and don’t want to get out of bed. But it’s so much better than it was at the beginning,” Madisyn said. “Now I know I’m not alone. Thank God I went to see Dr. Gandhi. She completely turned my life around. I definitely went to hell and back.”
But at least now Madisyn is back.