Collin Sellers is not the stereotypical fibromyalgia patient. The 16-year-old was diagnosed with the chronic pain disorder when he was just 8 years old. While his experience has been somewhat unusual because of his gender and age, he and his family have experienced many of the same challenges as others affected by the condition: unrelenting pain, multiple tests and doctor visits, and lots of adaptation. Collin’s mother Donna reflects on her family’s journey, including the challenges associated with parenting a child affected by FM, and offers tips to other families on a similar path.
Q. When did you first start having concerns about Collin?
A. I started having concerns about Collin when he was in the first grade. He was in a great deal of pain that just didn’t relent at all. The pain started out specifically in his jaw, so he reduced the amount he was eating and lost one-third of his body weight. That pain actually turned out to be juvenile rheumatoid arthritis, but even with treatment, the pain still didn’t go away, became more intense and started affecting other areas of his body. That’s when he received the diagnosis of fibromyalgia.
Q. What was your experience in getting a diagnosis?
A. It was very difficult. We just couldn’t figure out what was wrong. He could tell me what hurt and that he didn’t feel well but it’s very hard to pinpoint, especially when it continues day after day. We encountered all the normal fibromyalgia frustrations: going through tests and visiting doctors. Finally, about two years later, he was diagnosed with fibromyalgia.
Q. Did Collin’s healthcare provider have any explanations of what may have caused his pain?
A. No. He did have an injury, but at that time, and even subsequently, they don’t believe that is what triggered the fibro. So we don’t really know. He has had quite a medical history, including severe allergies.
Q. What are some of the unique challenges for youth with FM?
A. It is hard for children to verbalize when they are so young. And it’s hard as a mom to know the boundaries. I had to learn how to be a different kind of mom. I couldn’t be the mom who always rescued Collin and put the Band-Aid on every hurt. You can’t do that with fibro or your child will just sit and won’t become engaged or push themselves to the extent that’s healthy for them. It’s very difficult for kids because they can’t go out on the playground and do all those things they want to do because they will end up in bed for three days. We learned to do things a little bit differently. Even at this point, Collin is doing school at home. It’s just easier; it keeps him healthier, but it was a long, hard road to get to that decision.
Q. What kind of lifestyle changes has Collin had to make?
A. I think the biggest thing is learning how to pace. It’s very difficult to not be able to go out and run around and do all those normal activities that children do. When we first started Collin in a chronic pain program at St. Jude Medical Center in Fullerton, he could participate for five minutes at a time without getting exhausted and having his pain elevate. He went through that program for 10 weeks and was on 15-minute increments. He could do moderate activities for 15 minutes then he would take the same amount of time and sit down. So it’s very hard for a child growing up. Being a boy, being stubborn, being young, it’s very, very difficult to learn.
Q. Has FM impacted your family life?
A. It’s a different family lifestyle. We vacation very close to home. We don’t take long trips or spend the day at places like Disneyland as many families do. We plan activities and trips that will bring success instead of pain and frustration. We all had to learn to s-l-o-w down and do things that would be successful for Collin; making for a good day/trip for the whole family.
Q. How has FM impacted your relationship with Collin?
A. It has kept us extremely close; it has been a blessing. At times, it has kept us too close, so now we’re learning to do the dance of him being independent and doing what he wants.
Q. How do you find a balance between what Collin wants to do and what’s good for him?
A. We both kind of know what he should do; and he just gets a gentle reminder. He’s pretty attuned to it now. Instead of fighting it, he’ll go, ”Yeah, OK.” Some times, he’ll tell me it’s worth the elevated pain and I say, “OK.” If he overdoes it and has a day when he’s down, he’s still expected to do his chores. But it’s taken years to get there.
Q. As a parent, what are a couple of the main challenges you’ve encountered?
A. The hardest thing for me was learning to be a different mom than I thought I would be. You have to teach children at a young age what they have to deal with or they won’t learn how to adapt and get by. It’s difficult because as a mom your first God-given instinct is to help; you want to solve it; you want your child out of pain. I think constant pain is the hardest thing on the planet, no matter what type of pain you are dealing with. It’s very difficult when it goes on and on and on. Not being able to help, for me, that is the hardest lesson as a mom.
Q. How have you addressed those challenges?
A. First and foremost was prayer and then seeking guidance and wisdom through various people—the people at St. Jude Chronic Pain Program, we still interface with them.
Q. What advice do you have for parents of children with FM?
A. Be an advocate for your child; get wise counsel for your child and seek more than one opinion. Try to find someone in your area who specializes in pediatrics, and follow your gut. Parents know when their child isn’t right. I would also encourage people to try to find another parent who has this same circumstance even if ages are different.