by Melissa Swanson, NFMCPA Leader Against Pain
(This article originally appeared on August 1, 2015 on ProHealth website and is republished with permission by the author.)
In 2015 The National Fibromyalgia and Chronic Pain Association (NFMCPA) announced their campaign theme “Make Fibromyalgia Visible” to promote awareness, and this is exactly what New England Patriot Dominique Easley is doing.
In 2014, Dominique Easley, at the young age of 23, was a first-round draft pick out of the University of Florida by the New England Patriots. His sixteen-year-old sister, Destinee, was diagnosed with fibromyalgia at the age of 11.
Destinee looks like a typical 16 year old. She loves to joke with her family and laugh. She is an honor roll student, loves Edgar Allen Poe, playing with her Yorkie, hanging with her best friend and wants to attend college in California. She is surrounded by people who support and love her. She also suffers from the pain, exhaustion and depression that comes with fibromyalgia.
No one ever wants to see their family member in pain. Fibromyalgia and its evil sidekicks affect the everyday lives of not just the patient but their family and friends.
As a loving big brother, Dominque developed a new fan base when he began to use his football fame and popularity to help spread awareness about fibromyalgia, hoping one day a cure will be found for his sister and others living with this terrible disease.
On July 25, 2015, this defensive lineman and his fellow Super Bowl champions – Chandler Jones, Jerod Mayo, Aaron Dobson and Zach Moore – held an NFL kid skills camp at Hormel Stadium.
Champs Camp, taught by Easley, was his first football camp for children ages six through 17 – but definitely not his last. The kids were taught offensive and defensive skills using NFL combine-style drills designed to increase speed, agility and stamina.
The kids were not the only ones to benefit from Champs Camp. Easley took every opportunity during interviews about the camp to talk about his sister Destinee and her battle with fibromyalgia, and he donated a portion of each entry fee to fibromyalgia research.
One family (the Reitanos) attended the camp so that their 16-year-old daughter, Kiley, would have the opportunity to meet Destinee and to thank the Easleys for their efforts to spread awareness. Kiley has been diagnosed with fibromyalgia, Hashimoto’s disease and pain amplification syndrome. Easley has created a website (www.easleysawareness.com) to share Destinee’s story and help to raise awareness about fibromyalgia.
Melissa: Everyone looked like they were having a great time. Was the camp the success you were hoping for? How many kids did you have attend the camp? Will this be an annual event?
Dominique: The goal was for everyone to have a good time. So far the feedback has been 100% positive which makes me very happy. With this being my first camp, I didn't know what to expect, but it was better than I could have imagined. We had about 70 kids registered this year and we are excited and proud to do this again next year.
Melissa: How has Destinee changed since developing fibro?
Dominique: One thing about Destinee is that she hasn’t lost her spirit. She still has a great attitude about life, and is growing to be the teenage sister I could only imagine her to be. What has changed more than anything are her “bad days.” She is always ready and up for anything, but sometimes I’ll run to go joke with her or ask her to come do something with me and she laying down in bed. I can see in her face how much pain she’s in even though she is trying to mask it.
Melissa: As a father do you worry that one of your sons or future children may be predisposed to fibromyalgia?
Dominique: I try not to worry about the “what if” in life. But now that I have kids of my own, I empathize with my parents and what they're going through. It's hard enough to see my sister in pain. I can’t imagine having to see my kids in that kind of pain and deal with life on top of that.
Fibromyalgia in children is called juvenile primary fibromyaliga syndrome (JPFS). It is a musculoskeletal pain syndrome that causes pain in the muscles and soft tissues surrounding the joints.
Fibromyalgia is often overlooked in children because it is much more common in adults. So many of those diagnosed with fibromyaliga later in life can recall having the symptoms of fatigue, achiness, difficulty sleeping, stomachaches, headaches and more when they were children. They were sometimes diagnosed with something else, but often told that there was nothing wrong.
According to an October 15, 2013 article published by emedicine.medcape, approximately 1-7% of children are thought to have fibromyalgia or similar conditions.
I attended Champs Camp at Hormel Stadium in Medford, Massachusetts and sat down with Destinee and her mom, Erica, during the camp to talk.
Melissa: It is believed that someone can be genetically predisposed to fibromyalgia. Research shows that fibromyalgia is usually triggered by a physical trauma, surgery, infection or psychological stress. In some cases, symptoms gradually accumulate over time, with no single triggering event. Can you remember when Destinee began experiencing her first symptoms?
Erica: It started when Dominique was playing for the Florida Gators against Tennessee and it was a very, very hot day. The announcer kept announcing for people to stay hydrated. Destinee kept saying, ”Mommy, I am not feeling well, I am feeling dizzy.” We tried sitting in the shade by the concession stands to cool off and then returned to the game. The dizziness continued during the five-hour drive to home in South Carolina and did not go away. The doctor diagnosed her with a sinus infection, gave her a prescription, but the dizziness never stopped. The dizziness turned to headaches, which then turned into pain all over her body. September will be five years since it all started.
Unlike so many fibromites, Destinee did not have any problems with her family believing that something was wrong with her. She has a very supportive family.
Melissa: Do you have other family members with fibromyalgia or any other chronic pain illnesses?
Erica: No one in family has anything like this and that is why it was so hard to diagnose.
The symptoms that most people associate with fibromyalgia are pain, fatigue and fibro fog but the number exceeds 60 possible symptoms. In addition, there are many disorders that often co-exist with and aggravate FM. For a complete list of conditions commonly associated with fibromyalgia go to: Overlapping Conditions Directory
Melissa: What other conditions has Destinee been diagnosed with?
Erica: She was first diagnosed with migraine headaches in fourth grade. Next fibromyalgia, tension and migraine headaches. Destinee was diagnosed with the chemical imbalance in her hormones. Also, the doctors said she was not producing enough aldosterone.
Melissa: What treatments have been successful?
Destinee: Staying active even though it hurts really bad, vitamins, monthly massages (economically, that is very expensive), heating pads, meditating and prayers.
Melissa: Destinee, how would you describe a day when you are in a flare?
Destinee: Aching pain all over my body, it hurts everywhere. I have a lot of pain in my feet. Recently, I could not even turn over in bed it hurt so bad. I was just laying there flat on my back and could not move. The pain is just Indescribable.
Erica: Also, Destinee has been in and out of a wheelchair for four and a half years. Her legs were like jelly, wobbly, could not stand on her own or move from one place to another by herself.
Melissa: What do you love to do on the days when you are feeling good?
Destinee: I love shopping with my Mom, going to movies with my Dad and hanging with my dog.
Melissa: Have you run into the situation where you have lost friends?
Destinee: We haven't stopped talking; we are just not as close as we used to be since I got diagnosed. They won't come over to the house to hang out.
However, Destinee and her family are very lucky to have met McKayla (her best friend) and her family through their church. McKayla's entire family have been very supportive.
Destinee smiles and says, “If I am in pain in bed all day, McKayla will come and just lay down with me. She is always there for me. She is my best friend.”
Melissa: I know you have missed a lot of school; has it affected your grades?
Destinee: I am a stickler on my grades, I don't slack, I love getting my A's and B's: I try really really hard to get through it.
Erica: She still is an A-B Honor roll student; she has been placed on homebound. Homebound is where a teacher comes to your house for one hour a day every day to give you instructional information. You are in school eight hours a day. One hour is not going to give you what you need. She is basically in a position where she has to teach herself and I do what I can to implement what I can.
Melissa: What are your current symptoms?
Destinee: Chronic pain, fatigue, headaches, dizziness, depression and my feet hurt.
Melissa: What doctors do you currently see?
Destinee: I was doing acupuncture, while I was visiting my brother. Now that I’m back in South Carolina I’ll be doing regular checks with my primary care doctor and he’s looking into me doing a FIT [Food Intolerance Test] test to evaluate my food sensitivities.
As the interview was coming to an end, Erica turned the tables on me. She looked at my daughter Ravyn, who was videotaping the interview and said, ”As a mother I know how it feels to want to help your child and with nothing in the world to do. How does it feel to have a mother going through this pain?”
Ravyn: It is really, really tough to see her going through what she is going through constantly, cause you know there is nothing that you can do besides support her through it. You just watch the pain. On her good days, it's great; you need to embrace those cause they are not often. On her bad days, I just never know what to do to help her. She will be crying cause she is in so much pain and you just watch because you don't know what to do.
Erica: A question for both of you ladies because each household deals with things differently and you know the affect it has had on your life. Do you feel that fibromyalgia has stolen a piece of her life?
Ravyn: I think that it is great for her. It is an awful situation to be in, but she is writing, which is something she has always wanted to do. She is helping so many people, which is the type of person that she is, so she is giving herself to a greater cause.
Erica: Destinee and I talk about it often. Even though this has altered our lives, at the same time so many blessings have come out of it that may not have ever been opened without fibro. She has met amazing people and is blessed to be able to help others learn about fibromyalgia.
Fibromyalgia is an invisible illness. Thanks to Destinee and Dominque for doing their part to “Make Fibromyalgia Visible.”
Melissa Swanson is a chronic pain patient, advocate, and author. Through her Facebook page, she offers positive encouragement, medical information, resources, and support to 10,000+ fibromyalgia and chronic pain patients. In addition to her own blog, Melissa has been published in "Living Well with Fibromyalgia" and the NFMCPA "Advocate Voice."
She is a graduate of the 2014 Class of Leaders Against Pain Scholarship Training sponsored by the National Fibromyalgia & Chronic Pain Association and is a member of the Leaders Against Pain Action Network.