“In my practice I see many youngsters with fibromyalgia, often children of a parent with FM or connective tissue disease,” writes Dr. Pellegrino. But fortunately, he has found, those who are diagnosed and learn to manage their FM earlier in life tend to be among the two-thirds of fibromyalgia patients whose symptoms stabilize or improve over time.
Women do not have a monopoly on fibromyalgia. I see many children and men with FM in my practice. As a man with fibromyalgia who had various symptoms as a child, I can appreciate that the “minority” hurts too, and their lives are disrupted by fibromyalgia. As you’ve come to appreciate by now, not everyone with FM is affected the same, and there are some unique differences among children… that require some different strategies.
Children with Fibromyalgia
I see a number of children in my practice who have fibromyalgia. The youngest I have seen was a boy aged 3. I also see many teenagers, often children of a parent with fibromyalgia.
A child who has a parent or sibling with FM or connective tissue disease is at risk.(1,2)
If this child at risk is involved in a competitive sport that stresses the muscles – tennis, dancing, gymnastics – risk is increased. Children can get post-traumatic fibromyalgia, especially those who have a hereditary vulnerability. A number of young female patients in my practice have been involved with dancing, gymnastics or baton twirling for many years. Hours of practice and competition have been involved. Symptoms of pain appear, and ultimately fibromyalgia develops.
Other risk factors I’ve identified in children include the presence of scoliosis (curvature of the spine) or forward posturing (rounded shoulders). Postural changes cause more strain on the back muscles which over time can lead to traumatic changes that trigger fibromyalgia.
Girls are more likely to have scoliosis than boys (genetic risk). I see many youngsters who have intermittent back strains related to postural changes, and some have gone on to develop “full blown” fibromyalgia. There is no way to predict who will develop clinical fibromyalgia in those who are at risk, especially in those who are completely symptom-free.
In children, girls still outnumber boys, but the gap is smaller - about 60% girls and 40% boys in a survey of people younger than 18 with FM in my practice. This three to two ratio is consistent with the research reported by Dr. D Buskila.(3) In the adult population, diagnosed women outnumber men by at least six to one, but if we go out and look for FM, we will find it in men who have never gone to the doctor.
Causes of FM in children are similar to the causes in adults:
• Trauma - either a major trauma such as a fall or car accident or cumulative type trauma as with certain competitive sports. (See “Fibromyalgia as a Complication of Injuries.” )
• Infections such as mononucleosis or other viral infections or infections secondary to another condition. (See “Infection as One Possible Cause of fibromyalgia.”)
Primary fibromyalgia is more common.
Common Initial Symptoms
In children there may be generalized widespread pain, but usually there are some common initial symptoms that may be part of the “prodromal” (preceding) state that can ultimately turn into fibromyalgia. These symptoms include:
1. Leg pains (may be called growing pains). This appears to be a form of restless leg syndrome in children and is especially bothersome at night.
2. Fatigue. Episodic bouts with extreme fatigue may occur and the child will not want to do anything when this happens.
3. Sleep problems. Difficulty falling asleep and frequent awakening may occur.
4. Headaches. Frequent migraine headaches or tension headaches may occur with neck and shoulder pain or even in the absence of any other pain. allergies and dry eyes may be present and contributing to the headaches.
5. Abdominal pain. Frequent stomach aches and stomach pain, possibly accompanied by nausea. This may be early Irritable Bowel Syndrome.
6. Cognitive difficulties. This can include difficulty with concentration and attention in school, difficulty focusing on a topic, difficulty with reading and reading comprehension, and complaints about vision. School teachers will often notice these difficulties first and mention them to the parents.
Certain aggravating factors may cause fibromyalgia to flare up in children.
• I find that many children will experience increased pain or more widespread pain during growth spurts. Perhaps fibromyalgia is thrown “out of balance,” so to speak, as growth is occurring more rapidly than the fibromyalgia can adjust, hence the increased pain. The stress of growth may aggravate FM symptoms, or perhaps the nerves grow at a slower pace than the rest of the body and they signal more nerve pain.
• Girls may notice increased pain when their menstrual cycles start, and they have exaggerated premenstrual symptoms from the very beginning.
• Children are not free from stresses, at school or home, particularly if there is marital discord between the parents. All of these factors can contribute to flare-ups of FM in children.
Many times when I see these children with various symptoms or associated conditions, I find they have numerous painful tender points and ropey muscles with localized spasms. The diagnosis of fibromyalgia may be made if the criteria are met. (According to code 729.1 of the International Classification of Diseases diagnostic criteria and the American College of Rheumatology criteria.)
I will approach children (say under 16 years of age) with fibromyalgia a little differently than adults. I want to make sure there is no underlying problem other than FM that could be causing symptoms.
Usually I will obtain some lab work including blood counts, sedimentation rate, and possible thyroid studies. If cognitive difficulties are a problem I will consider neuropsychological testing to specifically test memory, auditory comprehension, reading comprehension, and other integrative skills of the brain.
My treatment philosophy with children is mainly “let kids be kids.” Children are active, they tend to sleep more, and they can be moody. Sometimes parents’ concerns are based more on the parents’ experience with fibromyalgia – and fear that the child may be going through the same thing.
I address these concerns and try to offer encouragement. I believe that minimal invasiveness is required. The main treatment may simply be a matter of reassuring the child and parent that there is no serious medical condition, but rather there is some evidence of fibromyalgia which can be handled with education, and tailoring an activity program to include stretches and specific exercises, nutritional approaches, and long-term monitoring.
When More Is Needed
If there is a functional impairment as a result of FM, such as the child is missing school or important school activities, or is unable to participate in sports because of pain and fatigue, I will treat more aggressively.
Treatments could include specific, prescribed medicines such as klonopin [a sleep inducing, relaxing drug], nortriptyline [an antidepressant], or a mild pain medication. I may prescribe a therapy program to try to find out what works and to develop a successful home program. Nutritional strategies, education, manual therapy and stress management are other treatments to consider.
School modifications such as the following may be necessary on a temporary or ongoing basis.
1. Rescheduling student classes so the student may be able to arrive later and leave earlier, and have a study hall/rest time in the middle of the day.
2. Physical adaptation, such as using a back pack or luggage cart, avoiding steps and using the elevator, and having another locker on another floor to decrease the need to carry a lot of books at any given time.
3. Excuse time from school gym for the time being.
Sometimes it is necessary to temporarily remove the child from school and use a home tutor. If the process of getting to and from school is extremely difficult because of pain and fatigue, this may be a reluctant but necessary option.
When a Certain Activity is the Aggravating Factor
I review the physical risks with each individual. If we determine that a certain athletic activity or a competition is the culprit in causing and aggravating FM, I advise the child athlete on ways to modify or avoid the offending activity altogether.
Several of my female patients were interested in a dancing major in college, but they developed FM along the way that was made worse by repetitive dancing. I advised them about changing their major to one that was more realistic and did not involve activities that aggravate the fibromyalgia. Dancing could still be pursued as recreation, but FM would probably not allow it as a career.
If gymnastics, tennis, or any other competitive sport activity appears to be a major factor in the cause of fibromyalgia and of flare-ups, I will tell the young athlete to think about a different competitive sport.
• First, they will back off from the activity, get the FM under the best control possible, and then see what happens when the activity is resumed.
• If the fibro flares up quickly, it is a good indicator that the continued activity will not be tolerated well. We need to look at his honestly and realistically.
Good Chance of Control
I find that kids are more resilient and adaptable to change than adults. Their youth gives them a better chance at controlling the fibromyalgia and maintaining a stable baseline or remission. I remind the parents not to project their fears onto their child, because each child is unique and the fibromyalgia has a unique identity as well.
Even if the mother is having a difficult time with her fibromyalgia, the child can reach a stage where the FM is hardly a bother. Most of the children I’ve seen have done better over time, and I am hopeful that they will continue to do well.
1. “Familial occurrence of primary fibromyalgia,” Pellegrino MJ, et al. Archives of Physical Medicine and Rehabilitation 1990.
2. “Genetic linkage analysis of multicase families with fibromyalgia syndrome,” Yunus MB, et al, Journal of Rheumatology 1998.
3. “Assessment of nonarticular tenderness and prevalence of fibromyalgia in children,” Buskila D, et al., Journal of Rheumatology 1993.
* Dr. Mark J Pellegrino, MD, specializes in physical medicine and rehabilitation, and has seen more than 20,000 fibromyalgia patients in his clinical practice at the Ohio Rehab Center. This article is excerpted with kind permission from his highly regarded book, Fibromyalgia, Up Close and Personal. © Anadem Publishing, Inc. and Mark Pellegrino, MD, 2005, all rights reserved. This book may now be ordered in the ProHealth.com store.
Note: This information has not been evaluated by the FDA. It is not meant to diagnose, prevent, treat or cure any illness, condition, or disease, and should not replace the attention of your personal healthcare professional. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.