Young woman combats rare chronic pain disease and becomes victorious

After suffering in silence for years, a young woman found treatment for her rare chronic

pain illness and works to raise awareness for this disorder.

“I would say having Amplified Musculoskeletal Pain Syndrome has given me a purpose,”

said Chloe Beato, a chronic pain disorder fighter. “It is my goal to help other people going

through what I once did by raising awareness and creating technology that could be beneficial to

the treatment process.”

High school, for many teenagers, consists of fall football games, homecoming dances,

Spirit Weeks, basketball games, school plays or Student Council. For Beato, freshman and

sophomore year consisted of doctors’ visits, multiple tests, a total of about two months’ worth of

missed school days and a lot of frustration.

“I felt bad that there wasn’t a clear answer to the problem,” said Louie Beato, Beato’s

father. “I once had a torn shoulder rotator cuff and I had surgery to fix it, and it was all better.

This was not that simple.”

Late into her sophomore year, one visit to Children’s Hospital of Pennsylvania (CHOP)

changed Beato’s life. Dr. David Sherry, who founded the program for juvenile chronic pain,

successfully diagnosed Beato with Amplified Musculoskeletal Pain Syndrome (AMPS).

In 2014, Sherry published an article that explains AMPS and the different phases of

treatment. It usually affects a limb but has the possibility to cause pain anywhere throughout the

body. Overall, this disorder causes a higher level of discomfort due to the pain signal being

amplified, which means there is no medicinal treatment to alleviate the agony.

There are three major causes to this disorder: injury, illness and psychological stress.
 “It has been speculated that it was triggered due to a bullying situation when I was

younger that caused a lot of anxiety and made me sick,” Beato said.

Sherry mentions in his article this rare disease often takes a while to diagnose for a

number of reasons. The main reason is because simple blood tests do not detect it, and an MRI or

bone scan could possibly show signs of AMPS, but the results may come back normal. Other

reasons include: not all symptoms being present at once, fractures and infections being ruled out

first, some physicians attributing the pain to “benign irregularities” and physicians who do not

have experience with AMPS may not recognize it right away.

Once diagnosed, the doctors on her team sprang into action to develop a plan for Beato:

an at-home treatment strategy that consisted of physical therapy three times a week and

psychotherapy once a week. This was her plan for the majority of her sophomore year.

“The issue with this for me was the lack of consistency; it was very difficult to find

therapists who understood this disorder,” Beato said. “I had planned on doing CHOP’S

outpatient treatment; however, it was not covered by my insurance nor did it accommodate my

family because we would have had to stay in a hotel or at the Ronald McDonald House.”

Senior year of high school marks a long list of a student’s “lasts” – last football season,

homecoming dance, play to perform or art show to enter. For Beato, senior year marked a new

beginning for her. After searching for different treatment programs, she had finally found a

program to accommodate everything she needed at Children’s Specialized Hospital in New

Brunswick, New Jersey.

Fortunately, the process of entering Children’s Specialized Hospital’s Chronic Pain

Program did not take too long since she had been diagnosed already. After a rigorous five-hour
evaluation similar to the one CHOP performed, Beato got approved for the program, waitlisted

and eventually, received a tour of the hospital’s inpatient program.

Another important milestone during a student’s senior year of high school is turning 18.

Most students celebrate with a party surrounded by their closest friends; this was not the case for

Beato. On Jan. 21, 2019, she embarked on her month-long journey to help heal her pain, instead

of blowing out the candles on her birthday cake with her family.

From Monday to Saturday, Beato worked hard to better herself each week. During the

weekdays, she participated in six hours of physical and occupational therapy while beginning

each day with pool therapy and meditation. On Saturday, therapy shortened to four hours.

“The goal each day was to get faster and more efficient while pushing through the pain,”

Beato said as she reminisces on her time at CHS.

Less than a month later, on Feb. 14, Beato returned home to her boyfriend and family,

instead of the following week. She responded better to treatment than expected and had the

opportunity to be released early.

“Having patience was important,” said Martine Beato, Beato’s mother. “Children’s

Specialized has a great program, and I am very grateful Chloe was able to succeed there.”

Beato’s tremendous progress coincides with a study released in 2016. After studying 899

AMPS cases in one treatment program for six years, the researchers concluded that a strong

understanding of AMPS and early use of intense physical and occupational therapy along with

psychotherapy allow for a quicker recovery and lessens the need for using medicine and surgical

procedures as treatment.

Despite her time at Children’s Specialized being shortened, Beato formed a strong bond

with the other young women in her program.

 “I am still close with all the girls from my program, and honestly, the friendships I’ve

made have stuck with me the most,” Beato said, smiling proudly about how her new friends that

made the hospital feel a little more like home. “I am so inspired by my friends I’ve made in the

program, and it was such a great feeling to know that I am not alone in this.”

Now, almost two years later, Beato has been able to inspire everyone around her with her

story. Her boyfriend of almost three years, Coby O’Brien, and her best friend, Nigel Gross, have

been by her side, cheering her on while learning in the process.

“It has taught me to not take the little things for granted and to cherish how good I have

it,” O’Brien said. “Most importantly, it has taught me how tough the people in the chronic pain

community have it on a day-to-day basis and how strong they are. [From Chloe,] I have learned

love, passion, care and unconditional support.”

Amplified Musculoskeletal Pain Syndrome is rare and often misdiagnosed, which leads

to many people being unaware that this disorder even exists. O’Brien stated that he never heard

of AMPS prior to dating Beato.

“I think if chronic pain were acknowledged more in the medical community that would

be a start,” Beato said. “There have been so many times I’ve gone to doctors and they’ve never

even heard of AMPS before. I think that if more medical professionals were educated on AMPS

it would benefit the community greatly.”

Whenever possible, Beato takes the chance to educate others about her illness. She has

written multiple papers about it for school, posts about it on social media and simply, speaks to

others when she can about her journey.

 “My overall experience at CSH was great. It was a hard chapter of my life, but I am so

thankful for the memories, people and treatment I have received,” Beato said. “I have

recommended it to others suffering from chronic pain and will continue to do so.”

O’Brien, Gross, and both of Beato’s parents take pride in having the chance to know

about this rare disease and they all do their fair share of spreading the word about AMPS.

“I raise awareness by wearing orange on Nov. 4 for chronic pain awareness and posting

on social media,” O’Brien said. “I have also written and made many presentations in my classes

to inform and raise awareness.”

Beato pointed out that after being discharged from the hospital, the patient is expected to

return back to their life prior to having chronic pain. For her, she was able to enjoy senior prom,

cheering O’Brien on at his volleyball games, graduating high school and attending her older

sister’s wedding.

“While AMPS shouldn’t stop me from living a normal life there are times where I feel

like an outsider,” Beato said. “There are times where I feel like I am less capable of doing things

because of the pain, but overall, I know that I am just as capable as anyone else.”

Today, Beato is attending college, has a part-time job, a steady relationship and one

accomplishment that leaves an impression on anyone who meets her. She has a strong support

group that pushes her every day and stands by her side through the ups and the downs; she

knows there are many things in her life to be grateful for.

“Living with AMPS has taught me to be stronger and to appreciate what I have,” Beato

said. “I know other people have it worse out there and I count myself lucky because I was able to

be treated.”
 Prior to treatment, Beato had been struggling with intense pain and stiffness in all of her

joints that at one point impaired her ability to walk. Today, three years after her diagnosis, she

exceeded her own expectations of being able to return back to a “normal” life. While there is not

a permanent cure for AMPS and she still has her bad days, knowing that she has people going

through what she does and others willing to stand by her through her good and bad days keeps

her motivated to not let this chronic pain disorder prevent her from living her own life.

Pictures:

(Left) This picture is Chloe being discharged from the hospital

and it would be inserted by paragraph 17 (where it starts with

“Less than a month later…).

This is Chloe and O’Brien at prom where she had me take pictures at our photo gathering. This

would be inserted near paragraph 28 (where it starts with “Beato pointed out that after being

discharged…”).
Target Audience:

- Young adults

- Ages 18 to 30

- Struggling with chronic pain disorders