Marbles, Spoons & the Whole Megillah

Have you tried to explain chronic fatigue syndrome and/or fibromyalgia to some-one who just doesn’t get it? How about to your kids?

marblesExplaining why you can’t do the things other moms and dads do is a challenge but Melinda Malott’s book How Many Marbles Do You Have? Helping Children Understand the Limitations of Those With Chronic Fatigue Syndrome & Fibromyalgia provides a simple, easy to understand way to do that. How fabulous to finally be able to say to your child, “Here’s a book about what’s happening to me.” It’s a great way to explain ME/CFS or FM without overburdening your children with things they don’t need to know and probably won’t understand.

What is your story with ME/CFS?

MMMelinda: I became symptomatic in March 2006.  At the time, my son was 18 months old and my daughter was 3 ½.  My symptoms progressively got worse until May of 2009 I was reduced to the confines of my home almost exclusively for 2 years.  I have had some improvement.  My improvement coupled with a management strategy has really helped me.  I am still unable to work or do any physical exercise to speak of, but I lead a full life as a wife and mother of two.

Why did you choose to do a children’s book?

Melinda: I remember the day my children came into my bedroom and both started crying.  They thought I was dying. I was too sick to try to explain, and as the clouds dissipated I came up with the marble and jar analogy.  I had looked online for resources and there were NO books to be found for children.

How did you approach telling children about ME/CFS?  

Melinda: I have a bachelor’s degree in nursing and a Master’s degree in community health education, but my formal education did not prepare me to explain something as complex as CFS and fibromyalgia to young children.  I decided rather than try to explain something I couldn’t understand that it was best to try to help my children understand my limitations. Using a jar and some marbles I was able to say yes and no without having to say I was in pain, or I didn’t feel good or I was tired.  I could simply say I was out of marbles.  Don’t get me wrong, they know I have bad days. I just don’t feel the need to amplify that for them.  They see it first-hand.  The marbles and the jar lessen the notion of a momma who is suffering.

You can visit Melinda at her website.

This is the book we’ve been waiting for—a story for children of parents with Fibromyalgia or Chronic Fatigue Syndrome. In fact, I plan to buy a copy for all my loved ones, so they’ll better understand what my life is like. It all depends on how many marbles are in my jar each day—the perfect metaphor for explaining the unpredictability and the ups and downs of Fibromyalgia and CFS. At the end of the book, Malott writes “… a heart full of love beats a jar full of marbles any day.” Not only is this book informative and insightful, it’s a heart full of love in itself.

Toni Bernhard, the author of How to Be Sick

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Lab Rats Wanted

Are you willing to put your body on the line? Or might you be at the end of your tether and willing to try anything?

As it is beyond me to list EVERY research study on FM, here are all the studies that are currently recruiting in the top 6 countries where my blog is being read:

*** If you live in another country, visit ClinicalTrials.gov, then enter your country and ‘fibromyalgia’ in the search box…you never know what you might find ***

Australia

NIL

Canada

A Phase 3b Multicenter Study of Pregabalin in Fibromyalgia Subjects Who Have Comorbid Depression

Conditions: Fibromyalgia

Interventions: Drug: Pregabalin; Drug: placebo

The Impact of Omega-3 Fatty Acid Supplements on Fibromyalgia Symptoms

Conditions: Fibromyalgia

Interventions: Dietary Supplement: Omega-3 (oil); Dietary Supplement: Fatty Acids (placebo)

Online Acceptance-based Behavioural Treatment for Fibromyalgia

Conditions: Fibromyalgia

Interventions: Behavioural: Acceptance-based behavioural therapy;   Other: Will vary per participant

India

Adolescent Fibromyalgia Study

Conditions: Fibromyalgia

Interventions: Drug: placebo; Drug: pregabalin (Lyrica)

A Study of Duloxetine in Adolescents With Juvenile Primary Fibromyalgia Syndrome

Conditions: Fibromyalgia

Interventions: Drug: Duloxetine; Drug: Placebo

Pregabalin In Adolescent Patients With Fibromyalgia

Conditions: Fibromyalgia

Interventions: Drug: pregabalin

Israel

Prevalence of Fibromyalgia in Israel

Conditions: Fibromyalgia

Interventions:

Effect of Milnacipran in Patients With Fibromyalgia

Conditions: Fibromyalgia

Interventions: Drug: Minalcipran; Drug: Placebo

Peripheral Arterial Tonometry (PAT) Evaluation of Sleep in Fibromyalgia

Conditions: Fibromyalgia

Interventions:

Study Assessing the Efficacy of Etoricoxib in Female Patients With Fibromyalgia

Conditions: Fibromyalgia

Interventions: Drug: etoricoxib

Cognitive Dysfunction in Fibromyalgia Patients

Conditions: Fibromyalgia

Interventions:

United Kingdom

NIL

United States of America

Observational Study of Control Participants for the MAPP Research Network

Conditions: Fibromyalgia; Irritable Bowel Syndrome; Chronic Fatigue Syndrome,

Interventions:

Pain and Stress Management for Fibromyalgia

Conditions: Fibromyalgia

Interventions: Behavioural: Stress and Emotions; Behavioural: Thoughts and Behaviours; Behavioural: Brain and Body

Adolescent Fibromyalgia Study

Conditions: Fibromyalgia

Interventions: Drug: placebo; Drug: pregabalin (Lyrica)

A Phase 3b Multicenter Study of Pregabalin in Fibromyalgia Subjects Who Have Comorbid Depression

Conditions: Fibromyalgia

Interventions: Drug: Pregabalin; Drug: placebo

A Study of Duloxetine in Adolescents With Juvenile Primary Fibromyalgia Syndrome

Conditions: Fibromyalgia

Interventions: Drug: Duloxetine; Drug: Placebo

Pregabalin In Adolescent Patients With Fibromyalgia

Conditions: Fibromyalgia

Interventions: Drug: Pregabalin

Combined Behavioural and Analgesic Trial for Fibromyalgia

Conditions: Fibromyalgia

Interventions: Drug: Tramadol; Drug: Placebo; Behavioural: Cognitive Behaviour Therapy for FM; Behavioural: Health Education

Quetiapine Compared With Placebo in the Management of Fibromyalgia

Conditions: Fibromyalgia

Interventions: Drug: quetiapine; Drug: Placebo

Cyclobenzaprine Extended Release (ER) for Fibromyalgia

Conditions: Fibromyalgia; Pain; Sleep; Fatigue

Interventions: Drug: cyclobenzaprine ER (AMRIX); Drug: placebo

Tai Chi and Aerobic Exercise for Fibromyalgia (FMEx)

Conditions: Fibromyalgia

Interventions: Behavioural: Lower frequency, shorter period of Tai Chi; Behavioural: Higher frequency, shorter period of Tai Chi; Behavioural: Shorter frequency, longer period of Tai Chi; Behavioural: Higher frequency, longer period of Tai Chi; Behavioural: Aerobic Exercise Training

Effects of Direct Transcranial Current Stimulation on Central Neural Pain Processing in Fibromyalgia

Conditions: Fibromyalgia

Interventions: Procedure: Transcranial Direct Current Stimulation (tDCS)

Lifestyle Physical Activity to Reduce Pain and Fatigue in Adults With Fibromyalgia

Conditions: Fibromyalgia

Interventions: Behavioural: Lifestyle physical activity (LPA); Behavioural: Fibromyalgia education

Neurotropin to Treat Fibromyalgia

Conditions: Fibromyalgia

Interventions: Neurotropin

Effect of Milnacipran on Pain in Fibromyalgia

Conditions: Fibromyalgia

Interventions: Drug: Neurotropin

Investigation of Avacen Thermal Exchange System for Fibromyalgia Pain

Conditions: Fibromyalgia

Interventions: Device: AVACEN Thermal Exchange System

Phase 2 Study of TD-9855 to Treat Fibromyalgia

Conditions: Fibromyalgia

Interventions: Drug: TD-9855 Group 1; Drug: TD-9855 Group 2; Drug: Placebo

Cymbalta for Fibromyalgia Pain

Conditions: Fibromyalgia

Interventions: Drug: Duloxetine

Effects of Milnacipran on Widespread Mechanical and Thermal Hyperalgesia of Fibromyalgia Patients

Conditions: Fibromyalgia

Interventions: Drug: Milnacipran

Qigong Exercise May Benefit Patients With Fibromyalgia

Conditions: Fibromyalgia

Interventions: Behavioural: Intervention Group; Behavioural: Placebo Comparator: Control Group

Effect of Temperature on Pain and Brown Adipose Activity in Fibromyalgia

Conditions: Fibromyalgia, Pain

Interventions:

Effect of Milnacipran in Patients With Fibromyalgia

Conditions: Fibromyalgia

Interventions: Drug: Minalcipran; Drug: Placebo

The Pathogenesis of Idiopathic Dry Eyes

Conditions: Dry Eye, Fibromyalgia

Interventions:

Evaluation and Diagnosis of People With Pain and Fatigue Syndromes

Conditions: Fatigue; Fibromyalgia; Pain; Complex Regional Pain Syndrome; Reflex Sympathetic Dystrophy

Interventions:

The Functional Neuroanatomy of Catastrophizing: an fMRI Study

Conditions: Fibromyalgia

Interventions: Behavioural: Cognitive Behavioural Therapy; Behavioural: Education

A Placebo-Controlled Trial of Pregabalin (Lyrica) for Irritable Bowel Syndrome

Conditions: Irritable Bowel Syndrome

Interventions: Drug: Pregabalin (Lyrica); Drug: Placebo

 

 

(Not) Just Kidding!

Medical evidence reports that juvenile FM affects 2% to 7% of school age children. Similar to adult cases, the juvenile form of the disorder primarily strikes females. Previous studies have shown that juvenile fibromyalgia patients are burdened with substantial physical, school, social and emotional impairments. However, studies for the treatment of the juvenile form have been limited.

A recent trial shows cognitive-behavioral therapy (CBT) reduces functional disability and depressive symptoms in adolescents with FM. The psychological intervention was found to be safe and effective, and proved to be superior to disease management education.

CBT is a form of talk therapy that helps people identify and develop skills to change negative thoughts and behaviours. CBT says that individuals — not outside situations and events — create their own experiences, pain included. And by changing their negative thoughts and behaviours, people can change their awareness of pain and develop better coping skills, even if the actual level of pain stays the same.

This trial, led by Dr. Susmita Kashikar-Zuck from the Division of Behavioral Medicine and Clinical Psychology at Cincinnati Children’s Hospital Medical Center in Ohio, investigators recruited 114 adolescents between 11 – 18 years of age who were diagnosed with juvenile FM. The trial was conducted at four paediatric rheumatology centres, with participants randomized to cognitive-behavioral therapy or fibromyalgia education, receiving eight weekly individual therapy sessions and two additional sessions in the six months following the end of active therapy.

Both groups displayed significant reduction in functional disability, pain, and depressive symptoms at the end of the trial; however, participants in the cognitive-behavioural therapy group reported a significantly greater reduction in functional disability compared to those receiving fibromyalgia education.

“Our trial confirms that cognitive-behavioural therapy is a safe and effective treatment for reducing functional disability and depression in patients with juvenile fibromyalgia,” concludes Dr. Kashikar-Zuck. “When added to standard medical care, cognitive-behavioural therapy helps to improve daily functioning and overall wellbeing for adolescents with fibromyalgia.”