Juvenile Fibro Leading to Adult Symptoms

Studies have found that four out of five teens who have juvenile fibromyalgia continue to have pains and other fibro symptoms well into adulthood.  The symptoms continually get worse over years, to the point where about half of these kids become practically disabled by mid to late 20’s.

The study author, Susmita Kashikar-Zuck is the research director in clinical psychology and behavioral medicine based out of Cincinnati Children’s Hospital.  Dr. Kashikar-Zuck reported that, “Half of the former teens we studied met the full criteria for adult fibromyalgia, and another 35 percent of them continued to have symptoms of fatigue, pain and sleep difficulty, but did not meet all the criteria for fibromyalgia syndrome.”

These kids’ hormonal and chemical imbalances just continue to get worse as they age, and even when they don’t meet fibro criteria, they still have similar symptoms.  This is a primary reason I do not generally follow these criteria guidelines.  They are far too vague and wide-ranged.

This study, published in Pediatrics in March 2015, came from previous research on juvenile fibromyalgia.  This difficult to treat disorder is widespread and can be ultimately destructive in anyone, but especially in kids and teens, who should be busy being young, not fighting immeasurable fatigue and excruciating pain.

Sadly, it is more often than not that kids and teens with juvenile fibro are told that it is “in their head,” or that they are fishing for attention.  This means they will go years without treatment and the disease will progress. 

Many scientists believe that fibromyalgia is hypersensitivity in the central nervous system.  While I would love nothing more than to pinpoint an exact cause or system that is responsible for fibromyalgia, I have been working far too long in this field to buy into it.  There are so many levels of symptoms and debilitation that it is very difficult to determine what system is more responsible.  It does, however, make sense that the central nervous system is a primary player because the pain is amplified, and pain response comes from the CNS.

It is interesting to note, too, that most of the kids with juvenile fibro in this study had parents with adult fibro, so there could be a genetic factor as well. 

While adult fibro is more common in women, it is nondiscriminatory and can attack anyone at any age.  Juvenile fibromyalgia severely impacts a teen’s life not only distracting them from school work and tasks, but forcing them to withdrawal from social life and isolate themselves.  This leads to even greater hormonal imbalance and depression, especially if people aren’t listening to them.

or this particular study mentioned above, researchers were interested to see if the juvenile fibromyalgia patients ever “grew out” of their symptoms.  They followed a group of 94 teens for six years.  The teens received the diagnosis of juvenile fibro between 2002 and 2010.  The average age at diagnosis was 15, a crucial age.

In this review at the six-year followup, 51% of the patients (young adults at this time with an average age of 21) still had fibromyalgia symptoms that met the criteria outlined by the American College of Rheumatology.  Greater than 1/3 of the patients did not meet the criteria for a full diagnosis; however, as mentioned previously, they still complained of some symptoms like fatigue, widespread pain, and problems with sleep.

The young adults with the fibro diagnosis had significantly poorer physical functioning, more anxiety, and higher levels of pain when compared to young adults their age.  Stress plays a pivotal role in fibromyalgia and is a culprit at the foundation of most symptoms, so the added stress in these kids’ lives could be a contributing factor.

I will note here that these findings may seem daunting to teens and parents, but nearly half of the patients who were diagnosed with juvenile fibro improved over time and no longer fulfilled the fibro diagnosis criteria.

Additionally, the patients in the above study were still able to lead normal adult lives with many of them attending college, getting married, and starting families.  This is an encouraging outlook when considering what lies ahead.  As these patients get older, they will likely continue to have symptoms worsening, so they will need support and guidance for treatment regimens.

Parents should always use caution when trying to determine if their child has fibromyalgia, or if they have something more like growing pains or moodiness as a result of being a hormonal teenager.  Know the symptoms of fibromyalgia, and if your child continues to complain of chronic diffuse pain and struggles with persistent poor sleep, then it may be time to see the doctor.