Fibromyalgia and Juvenile Fibromyalgia

By Shari Ferbert

www.juvenileFMS.affter.org

 

©copyright, AFFTER, 2007- all rights reserved

 

Background information:

What is fibromyalgia and what are the symptoms?

 

In 1990, the American College of Rheumatology (ACR) defined fibromyalgia as a clinically diagnosable condition.  The diagnostic criterion is as follows:  Chronic (three months or more), widespread musculoskeletal pain (all four quadrants of the body); with the presence of 11 of the 18 tender points (spots at designated muscle/tendon junctions throughout the body that are very tender when pressed on with light pressure). [1]

 

The pain affects muscles and joints as well as the ligaments, tendons and skin.  It is widespread pain, experienced in all four limbs as well as the neck, chest wall and back.  It is a syndrome, meaning it is a combination of symptoms including pain and fatigue. Because FMS requires a clinical diagnosis and lacks a laboratory test to confirm the existence, FMS has historically been a controversial diagnosis.  In recent years however, FMS is gaining credibility as researchers learn more about it and advocacy groups educate the medical community and the general population about this painful condition that is often misdiagnosed or goes undiagnosed for many years. [2]

 

In addition to musculoskeletal pain, many other symptoms are part fibromyalgia:  sleep disorders, chronic fatigue, irritable bowel syndrome, migraine, tension headaches, TMJ, bladder problems, concentration difficulties/cognitive impairment (know as fibro fog), allergies, chemical sensitivities, myofascial pain syndrome, restless legs syndrome. and numbness and tingling of the extremities. These symptoms connect to FMS through the central nervous system (CNS).  We now know more about the biochemistry and the CNS involvement in FMS; there is a problem with the CNS and the way FMS patients are processing pain or other sensory information.  Central Sensitivity Syndrome, a process where the central nervous system has an exaggerated response to noise, smell, pain and other stimuli, causing an amplification of pain, can link these multiple conditions. [3]

 

Everyone is different and has varying degrees of severity and number of symptoms.  The symptoms tend to vary day to day and from person to person. AFFTER conducted a survey to compare various symptoms between FMS patient and normal controls.  The symptoms with the most significant difference (twice as many incidences with FMS patients than controls) include: sensitivity to light, sun sensitivity, dizziness, irregular heat beat, balance problems, chronic sore throat, sensitivity to medication, hives and skin sensitivity, dry mouth, frequent runny nose, night sweats, disc problems, memory problems, anxiety, trouble swallowing, vision problems, heartburn and restless legs. [4]

 

Chronic Fatigue Syndrome (CFS) versus FMS

 

Fibromyalgia (FMS) and chronic fatigue syndrome (CFS) tend to be overlapping conditions.  It is estimated that 70% of people with CFS also meet ACR criteria for FM and 70% of people with FM meet Center of Disease control (CDC) criteria for CFS.  CFS is also one of common co-existing conditions of FMS and research is ongoing to determine if the two are cousins variations of the same illness. We know that neuroendocrine and immunological abnormalities have been described in both FMS and CFS.  It is suspected that a combination of endocrine abnormalities, CNS dysfunction and abnormal neurotransmitter activity may all be involved in both syndromes. [5, 6].

 

Who gets fibromyalgia?

 

Approximately 8-10 million Americans have fibromyalgia, with over half of them being female.  This equates to about 1 in 50 adults and 1 in 100 children suffering with this debilitating illness.  The average age of diagnosis in adults is around 40-50 years old and 13-15 for children.  Typically FMS goes undiagnosed (or misdiagnosed) for years before accurately identified and treated and patients see an average of 3-5 doctors prior to diagnosis.

 

If the ACR criterion established in 1990 is used, 92% of the people identified by the ACR are female.  That diagnostic criterion is being re-evaluated by researchers and a more contemporary view will eventually take its place. If this updated view of FMS is applied, only 1-1/2 times more women then men have FMS. [7]

 

Most adults with FMS can trace symptoms to their childhood and there tends to be a predisposition to develop it; one is more likely to develop FMS if they have a family member who has it.  Research is ongoing regarding the heredity issues, but it does appear to be genetic. Adults with FMS who were asked to recall symptoms during childhood reported the following:  growing pains (49%), unusual illnesses (24%), chronic infections (39%), stomach aches (38%), headaches (47%), and sleep disturbances (33%).  These numbers are at least double those reported by the control group. [4]

 

Juvenile fibromyalgia

 

Official recognition of fibromyalgia in adults has been slow and unfortunately, the recognition and acceptance of juvenile fibromyalgia (JFMS) is even slower.  The incidence of FMS in children may be as high as 6.2% of the general pediatric population, although it was not a separate entity until Dr. Muhammad Yunus introduced it into the medical literature in 1985.  He found that it is a common diagnosis in a pediatric clinic if you know what to look for.  Juvenile fibromyalgia accounts for 7.5% of new diagnoses made among children and adolescents by pediatric rheumatologists.  Musculoskeletal pain syndromes, such as JFMS account for approximately 25% of new referrals to pediatric rheumatologists.  [8]

 

Juvenile fibromyalgia diagnosis

 

A diagnosis for JFMS requires three months of widespread musculoskeletal pain in absence of other underlying causes for the symptoms, and the presence of 5-11 of the 18 tender points.  All standard laboratory tests would be normal, and 3-10 of the following minor criteria are present:  chronic anxiety or tension; fatigue; poor sleep; chronic headaches; irritable bowel syndrome; subjective swelling; numbness; and pain made worse by physical activities, weather conditions or anxiety and stress. [9]

 

Other symptoms that may be present include: debilitating fatigue, depression, stiffness, aching, difficulty concentrating in school and abnormal sleep patterns (difficulty falling asleep, frequent awakening, feeling unrested in morning, frequent movement during sleep). [8]

 

Most cases of JFMS are go undiagnosed or are initially misdiagnosed.  In one study of patients in a pediatric rheumatology clinic where 45% had JFMS, before their FMS diagnosis: 67% of them had seen three or more doctors before their rheumatologic evaluation, 60% were told they had juvenile chronic arthritis, and other diagnosis included “growing pains”, hysteria and psychological problems. The study concluded that juvenile fibromyalgia is a very common pediatric rheumatologic problem and is confused with other disorders. [10]

 

Treatment

 

The goal of treatment is to control the symptoms using a multifaceted approach; reassurance, medication, moderate exercise and proper sleep are mainstays of therapy. Other types of treatments include physical therapy, massage, myofascial release, support groups, psychological counseling, etc.  As the child gets older, there are more alternative therapies that would be appropriate, such as acupuncture, biofeedback and supplements.

 

Validation is important.  Believe in your child; as age appropriate, explain the diagnosis and what affects it will have on her.  Help your child learn what needs to be done to feel better.  You are your child’s advocate so you will need to help him talk to teachers, guidance counselors and the school nurse about this illness so they know to take this condition seriously.  Find a physical therapist who will work with your child to learn how to increase muscle flexibility, strength, balance and minimize pain.

 

Is Juvenile FMS different from the adult version?

 

As in the adult version of fibromyalgia, predominant symptoms in children include:  Diffuse musculoskeletal aches and pains accompanied by tender points at typical sites.  In JFMS there is more variable presentation along with dependence on an adult to make the diagnosis.  Children tend to have more sleep disturbances and fewer tender points. There seems to be an increased frequency of pain that results from over activity, anxiety and weather in JFMS.  There also seems to be less back pain, more ankle pain and more subjective swelling. [9]

 

Chronic fatigue syndrome (CFS) and FMS in youth, appear to be overlapping entities just as they are in adults.  The common symptoms include:  fatigue, headache, sore throat, abdominal pain, depression, lymph node pain, concentration difficulty, eye pain and joint pain. [11]

 

One study in particular concluded that parents of children with CFS or FMS are much more likely to have the same disorder as their child than are members of the general population.  The tendency is for both CFS and FMS to run in families, and it is common for children with each disorder to describe similar symptoms as their parent with the illness. [12]

 

The prognosis in JFMS is more favorable than in adults.  One theory is that FMS may go dormant, then reappear later in life.  Other theories are that early intervention and treatment may result in a less severe form of the illness.

 

Juvenile fibromyalgia and school

 

The cognitive symptoms of fibromyalgia create problems for students to concentrate in school and may cause grades to drop.  The concentration difficulties of the illness may affect the child’s ability to learn and have an impact on his academic achievement.  The child may be thought of as being lazy, emotionally disturbed, school phobic, unmotivated or a slacker, when they are actually suffering from debilitating fatigue or are in pain.  JFMS can cause the student to be absent from school a lot.  The ongoing battle with fatigue makes it difficult to catch up with missing assignments, which is another reason cause of falling grades. 

 

Recent research suggests that adolescents with FMS are more likely than their peers to experience social problems like isolation and peer rejection. This may perhaps be due in part to academic failure, which in some cases leads to increased anxiety, social withdrawal and mood difficulties.  The research indicated that adolescents with JFMS were rated by teachers, peers and themselves as being more sensitive, isolated; and, having fewer popularity and leadership qualities. The inability to carry on daily activities can have a negative impact on self-esteem and lead to a downward spiral of social isolation, emotional distress and depression.  [13]

 

A child with FMS needs help and understanding in the school environment, and may even need special provisions in the form of a 504 plan.  See www.wrightslaw.com for more information about child’s rights and ways to level the playing field of those without this disability. 

  

 

In Summary:

 

Research clearly suggests that predisposition and genetic factors are involved with fibromyalgia.  The research done on JFMS demonstrates that the illness can be present in children.  If you are a parent with FMS, odds are one or more of your children may develop it – or would be predisposed to develop it.  You should be aware - watch for similar symptoms in your children and seek a diagnosis if symptoms persist.  Why?  For the same reasons that adults should pursue a diagnosis…. One copes better after the pain is validated and given a name; treatment and healing can begin. 

Children who suffer from pain, fatigue, heat and exercise intolerance, dizziness, nausea, cognitive fog, and other symptoms of fibromyalgia and related syndromes, need to feel free to communicate what they are feeling. 

 

These children are often times considered to be lazy, depressed, irresponsible or lacking ambition… just trying to get out of going to school or other functions.  Their complaints may be dismissed as stress, growing pains, school phobia or emotional problems.  If they have FMS or CFS, they probably do not have any of these other problems and their self-esteem is sure to suffer if they are made to feel as if they do.

 

When a child complains of symptoms typical of fibromyalgia, a pediatrician often wont get it… they think fibromyalgia is an adult disease.  A pediatric rheumatologist would recognize fibromyalgia, but generally the child is misdiagnosed before seeing a rheumatologist.

 

So what do you do?  Starting medications not necessarily the answer.  On the website www.CFIDS.org there is a section called “talking to (and understanding) Doctors”.  It explains how you can go about working with your child’s doctor when exploring the diagnosis of fibromyalgia or other similar chronic conditions.

 

Besides talking to your child’s doctor, you should also talk to teachers and other school personnel.  The child may have trouble participating in gym class, or ask to go to the nurse for a headache or stomach ache, or need excessive trips to the bathroom or drinking fountain.  Teachers see their share of children who fabricate symptoms to get out of schoolwork and may not believe your child when they make these complaints.  [14]

 

You are your child’s voice… there are things that you can do for a child with fibromyalgia that starts with recognition.  If you have a child with fibromyalgia who would like to participate in a support group (either on-line or in person), please contact AFFTER at info@affter.org or call 847-362-7807.  AFFTER also offers additional support, services and educational materials at no cost.  Visit our website www.AFFTER.org for additional information.

 

  

 

References:

 

AFFTER is a non-profit, 501(c)(3) organization, dedicated to helping those with fibromyalgia and related conditions.  Visit our website www.AFFTER.org for more information, or to learn how to make a tax-deductible contribution. 

 

[1]  http://www.rheumatology.org/publications/classification/fibromyalgia/1990_Criteria_for_Classification_Fibro.asp

       http://www.rheumatology.org/publications/classification/fibromyalgia/fibro.asp?aud=mem

       M. Yunus, et al - Arthritis and Rheumatism 1990 (vol.33 pgs 160-72). The American College of Rheumatology criteria for    

      FMS

[2]  S. Ferbert, AFFTER:  “What is Fibromyalgia an informational document”, ver 3, 2007

[3] Muhammad Yunus - Seminars in Arthritis and Rheumatism, June 2007, Vol.36:6 “Fibromyalgia and Overlapping Disorders; the      

       Underlying Concept of Central Sensitivity Syndromes”.

[4]  AFFTER Symptom Study, Arthritis and Rheumatism, Oct 2007

[5]  Muhammad Yunus - Seminars in Arthritis and Rheumatism, June 2007, Vol.36:6 “Fibromyalgia and Overlapping Disorders; the  

      Underlying Concept of Central Sensitivity Syndromes”

[6] AFFTER Fibromyalgia Focus, Spring/Summer 2007 v.10 FM; “Diagnoises: How, Why and What”

[7]  D. Clauw: Journal of Clinical Rheumatology, 13(2):102-109, 2007

[8]  http://www.emedicine.com/ped/topic777.htm

[9]  M. Yunus and A. Masi - Arthritis and Rheumatism 1985 Feb;28(2):138-45

[10] Romano TJ – “Fibromyalgia in children; diagnosis and treatment” - Med J 1991 Mar;87(3):112-4

[11] Bell, DS, et al:  Clin Infect Dis 1994 Jan;18 Suppl 1:s21-3 - “Primary Juvenile Fibromyalgia Syndrome and Chronic Fatigue  

       Syndrome in Adolescents”

[12] Breau, LM – J of Behav Pediatr 1999 Aug;20(4):278-88 “Review of juvenile primary fibromyalgia & chronic fatigue syndrome”

[13] Kashikar-Zuck S, et al. “Social functioning and peer relationships of adolescents with juvenile fibromyalgia syndrome”. Arthritis  

      &  Rheumatism 2007;57:474-480.

      http://www.niams.nih.gov/News_And_Events/Spotlight_on_Research/2007/juvenile_fibro.asp

[14] AFFTER Fibromyalgia Focus; Summer/Fall, 2000 V.3