Pediatric Fibromyalgia

Pediatric Fibromyalgia – By David D. Sherry, – Cara Hoffart – 2013

This article claims to be an overview of pediatric fibromyalgia but to me, it sounds like doctors are being told to ignore the pain because it’s just psychogenic pain, generated by a psychiatric disorder.

This is how they used to treat adults with FMS too, but adults pushed back and insisted on more research and evidence. Now it’s known that fibromyalgia is a “real” physical issue which includes brain inflammation.

That only makes this article seem crueler when it insists that children with diffuse pain are suffering from a mental, not physical, problem. This whole article conflates fibromyalgia with diffuse amplified pain, which is considered a mental disorder, not a medical issue, a classic example of gaslighting: psychologically manipulating someone so that they question their memories, perception, or sanity

Are you sure your patient has fibromyalgia (or diffuse amplified pain)?

The hallmarks of fibromyalgia are chronic pain (duration greater than 3 months) over multiple areas of the body (usually over at least three body sections – arms, legs, back, abdomen, head) along with multiple somatic complaints.

The common somatic symptoms include

  • fatigue,
  • cognitive difficulties,
  • bowel complaints,
  • poor sleep,
  • numbness,
  • dizziness,
  • visual disturbances,
  • urinary symptoms.

The severity of the pain and disability is generally out of proportion to the findings and 70% of patients have allodynia (pain to a normally non-painful stimulus such as light touch).

The quality of the pain is usually very high (usually over an 8 out of 10 – and frequently higher than a 10 out of 10) with an incongruent affect (calm or even smiling). The latter can lead to the condition being mistaken for malingering.

The criteria by Yunus and Masi for fibromyalgia in children list 4 major criteria and 10 minor criteria:

Major criteria include

  1. generalized musculoskeletal aching at three or more sites for at least 3 months,
  2. absence of a discernable underlying cause,
  3. normal screening laboratory tests,
  4. five or more typical tender points

Minor criteria include

  1. disordered sleep pattern,
  2. fatigue,
  3. chronic anxiety,
  4. headaches,
  5. irritable bowel syndrome,
  6. subjective soft tissue swelling,
  7. numbness, and
  8. pain modulation by activity,
  9. weather or
  10. stress.

Using the Yunis and Masi criteria, children with all 4 major and at least 3 minor criteria are classified as having fibromyalgia.

What are the tender (painful) points seen in fibromyalgia (or diffuse amplified pain)?

Traditionally, patients with fibromyalgia are said to have specific ‘tender points’, or more correctly ‘painful points’ that are demonstrated when the physican pushes on specific sites.

Tenderness or soreness should not be counted as a positive finding.

Then what should they be considered? It sounds like any pain is simply invalidated and skipped over.

In practice these ‘painful points’ are a subjective finding and therefore hard to reproduce due to

  • inconsistency in the examiner’s ability to push at the exact same location,
  • the variable amount of pressure used in the exam and
  • multiple host variables
  • (having a “bad day”,
  • changes in weather,
  • differences in symptoms at different times of day, and
  • the appearance of symptoms before or after physical activity).

The traditional painful sites are: at the base of the occiput, lateral cervicle spinous process, mid-trapizious muscle, medical and superoir border of the 2nd rib, medial scapual above the scapula spine, lateral epitrochlear – 1 cm distal to it, gluteal fold, greater trochanter – 1 cm posterior to it, medial knee – 1 cm proximal to the medical femoral condyle.

Pediatric fibromyalgia may be different from that reported in adults. Compared to adults with fibromyalgia, children seem to respond well to intense physical and occupation therapy, have long term remissions, and the condition is frequently associated with conversion symptoms and psychologic issues.

Here we go with “conversion disorders”, a remnant of Freud’s belief that everything is created by our subconscious. In psychology, most of his work has been found lacking or too vague to be useful.

Conversion disorders should be diagnosed by a psychiatrist who doesn’t have to make the decision to use opioids or not. If pain was treatable by any other drug besides our much-maligned opioids, no one would be talking about “conversion disorders” anymore.

Who gets childhood diffuse amplified pain?

Fibromyalgia in pediatric practice primarily affects preadolescent to early adolescent girls (average age 13 years, 80% females).

Many patients are caucasian, middle class with a characteristic personality profile characterized as

  • perfectionist,
  • self-driven,
  • high achieving,
  • empathetic and
  • mature beyond their years.

Frequently a parent is enmeshed with the child and the pain has inordinate control over the family (e.g., parents quitting their job to care for the child).

This is a psychological/psychiatric description, not a medical diagnosis.

What other disease/condition shares some of these symptoms?

  • Unrecognized arthritis, especially spondyloarthropathy
  • Hypothyroidism or hyperthyroidism
  • Leukemia or lymphoma
  • Depression
  • Somatization

If you are able to confirm that the patient has diffuse amplified pain, what treatment should be initiated?

Laboratory and radiologic investigations should cease and medications for pain withdrawn.

So, just because one doctor believes you are not suffering “real pain”, no one is further concerned with your pain nor will it be treated.

Intense physical and occupational therapy needs to focus on reestablishing function, aerobic training and strengthening. If there is allodynia, then desensitization is a major part of this therapy. The therapist needs to ignore the pain complaint and not even ask about pain.

This is NOT the practice of medicine.

It advises to basically ignore the reported symptoms entirely and focus on the patient’s state of mind.

Once diagnosed with conversion disorder, no one will ever take this patient’s pain seriously and they will be accused of having a mental disorder instead of a medical problem for the rest of their lives (or medical record, whichever lasts longer).

Counseling is paramount. Initially cognitive behavioral therapy can help with coping strategies and skills but most patients should also have individual or family therapy or both. The goal is to address the underlying psychodynamics.

This is a pure Freudian approach to a medical problem.

What are the adverse effects associated with each treatment option?

More overt psychopathology may emerge when the child is confronted with getting better and can be manifest with conversion symptoms, suicidality, or oppositional behavior. Rarely, sexual abuse is revealed which is always met with psychological repercussions.

Any protest or disagreement is thus written off as more display of conversion disorder, so no patient feedback is considered.

Even as an adult, a psychotherapist believed my chronic pain was such a disorder. She told me I was creating my own pain so that I’d feel justified taking opioids. From personal experience, I can say that such a diagnosis can destroy whatever is left of a person’s sanity.

Over several sessions, she manipulated me to believe the various pains I’d been suffering for most of my life weren’t “real”, but psychogenic and only generated in my own mind. This led me to doubt my own thoughts and beliefs, doubt my ability to see or sense “real” reality, and sent me into a bottomless suicidal depression. (This is why I’ve posted so much about the dangers of Cognitive Behavioural Therapy, which sets out to change a patient’s thinking to be “more healthy” according to the therapist.)

I give her a lot of credit for finally realizing she was in over her head and referring me to a different therapist, an addiction specialist who quickly determined that my problem was NOT addiction, just pain.

What are the possible outcomes of diffuse amplified pain?

The vast majority of children become fully functional and pain will resolve in most over time.

What causes this disease and how frequent is it?

Diffuse amplified pain is becoming much more frequent and probably affects tens of thousands of American children but the prevalence is unknown.

New diagnoses of amplified pain in pediatric rheumatology clinics equals or exceeds that of all the forms of childhood arthritis (there are estimated to be 90,000 to 300,000 children in the US with arthritis).

It is rare in young children and caution should be exercised in making this diagnosis under the age of 8 years. It can follow injury, illness or be associated with stress.

Conversion symptoms frequently accompany diffuse amplified pain as do other stress related conditions.

Especially in children that cannot defend themselves, it seems the easy way out to diagnose their pain as a psychiatric issue.

The genius of such a diagnosis is that it can never be disproven.

These include such things as

  • anorexia nervosa,
  • cutting,
  • suicide attempts or gestures,
  • pseudoseizures,
  • conversion blindness,
  • orthostatic faintness and tachycardia [could this be an early sign of EDS?]
  • irritable bowel (it is not associated with an increased incidence of celiac disease).

Ongoing controversies regarding etiology, diagnosis, treatment

A controversial approach to the treatment of these children is focusing predominantly on drug treatment for pain (often using medications used in adults that are not approved for use in children) with minimal, if any, physical therapy.

Another unproven approach is to focus on the condition as a primary sleep disorder with the expectation that improving sleep will minimize the pain. Although most children with fibromyalgia have an abnormal sleep pattern there is usually not a true sleep disorder and the sleep complaints are generally not amenable to pharmacologic therapy.

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