Healthy Living

Is Obsessive Compulsive Disorder Common Among Muscular Dystrophy Patients?

There might be a link between obsessive compulsive disorder and Duchenne muscular dystrophy. Learn what researchers have found.

Is Obsessive Compulsive Disorder Common Among Muscular Dystrophy Patients?

Researchers have discovered that, compared to the general public, there is a higher than average rate of obsessive-compulsive disorder (OCD) in those with Duchenne Muscular Dystrophy (DMD). Researchers from the University of Iowa conducted and published research in the May 2018 issue of The Journal of Child Neurology, stating OCD is not technically an anxiety disorder, but it is not unusual for those with muscular dystrophy to be diagnosed with OCD.

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The team went over the medical charts of 107 male patients between the ages five and 34 who had been treated for DMD at the University of Iowa Hospital and Clinics from 2012 to 2017. A final group of 39  patients exhibited high levels of anxiety and depression, and researchers took 15 participants ranging from five to 23 out of this group. The group of 15 showed definite signs and symptoms of OCD, even the DMD patient who was just 5 years old.

Researchers concluded, “Common initial symptoms included difficulty with changes in routine, repetitive behaviors, and organizational compulsions. Many patients required a very specific bedtime routine."

The researchers studied the clinical signs of OCD in those with DMD and its impact on their families and the patients themselves and found that  the lives of families and DMD patients are negatively affected by OCD. Families need to keep DMD patients in their comfort zones and routines.

Those who suffer from DMD and OCD are often distressed and irritable when family routines are disturbed; they become unmanageable. As patients grow older, and symptoms of DMD increase, the propensity of OCD also increases. Treatments with serotonin reuptake inhibitors (SSRIs) have resulted in improvement of OCD over time in these patients, but medication does not entirely take away OCD symptoms. The medication has shown to ease some anxieties and improved some quality of life issues which is great, but OCD symptoms are still a problem in some patients.

Most of the 15 (14 out of the 15) received SSRIs for their OCD issues, but only five had mental treatment. The other ten did not have therapy due to accessibility and cost. The results  of the study? Medication does not completely resolve OCD issues. It does help in easing anxiety and improving quality of life, but when combined with therapy and psychiatry, OCD issues have proven a higher chance of being resolved.

Researchers additionally concluded, “Our data affirm that internalizing disorders are prevalent in the Duchenne muscular dystrophy population, warranting clinical attention and screening, as generally early diagnosis and treatment are associated with greater symptom improvement.”

OCD is a disorder that causes you to have repetitive behavior

Obsessive-compulsive disorder or OCD is characterized by a barrage of irrational thoughts and obsessions or fears that cause you to engage in repetitive behavior or compulsions. Repeated behaviors cause distress and anxiety, and you try and rid yourself of your obsessions by performing compulsive rituals or acts.

You try and ignore or stop your obsessions, but it only increases your distress and anxiety. You feel driven to perform compulsive acts to ease your stress. Despite your best efforts to ignore or lose thoughts or urges, they keep coming back.

You may not realize your compulsions are excessive, but they do take up a great deal of time and interfere with daily living, social or work functioning. Others notice your compulsive behavior but are often reluctant to point it out to you.

OCD generally centers around specific themes. You may fear getting contaminated by germs, so you compulsively wash your hands so often they become chapped and sore. You may clean your personal space or room to the point that you cannot stand other people in your area; they might your area dirty and unorganized.

Other OCD themes might include:

  • Fear of contamination or dirt
  • Things must be symmetrical and orderly
  • Horrible thoughts about harming yourself or others
  • Unwanted thoughts of aggression, sexual acts, or religious topics
  • Thoughts about using obscenities or acting up in a crowd
  • Avoidance of situations that trigger obsessions. For instance, you refuse to shake hands
  • Doubts and fears that you’ve locked the door, turned off the stove, or finished a project

In other words, OCD is repetitive behaviors that you are driven to perform. If you are not able to perform these behaviors, you will grow anxious and almost manic.

DMD patients' difficulties with emotional control may lead to OCD

Duchenne muscular dystrophy involves muscle weakness that generally begins around the age of four, and mostly in boys. It worsens as time progresses. Muscle loss occurs first in the upper legs and pelvis followed by muscles loss in the upper arms. You may have trouble standing up, and most of those affected with DMD are unable to walk by the age of 12. Affected muscles look more massive due to increased fat content, scoliosis is common, and there might be intellectual difficulties.

Compulsive actions are common in preschool children, and those boys with DMD are no exception. Boys with DMD have extreme difficulties with impulsive actions and emotional control. These difficulties can lead to OCD.

Boys with DMD become rigid and inflexible in thinking and to soothe their discomfort, and they engage in compulsive behaviors. They have trouble making transitions or changing routines.

As an example, they may need to wash their hands to get rid of imaginary dirt continually. Changing desks can cause them to be overly concerned with the dirt and germs on a desk used by someone else. They often are continuously arranging things in their area, re-doing tasks until the task feels just right, and they have trouble with transitioning. Experts think that OCD may be due to sensory sensitivities or deficits in mental flexibility or adaptability.

These interventions can help children with OCD and DMD

Cognitive-behavioral psychotherapy has been known to be effective in treating the symptoms of OCD. Medications can also help. Some general strategies for coping with DMD and OCD behaviors include:

  • Being calm and supportive
  • Providing the school with a written summary of your child’s OCD challenges and needs
  • Keeping routines predictable
  • Anticipating triggers
  • Easing transitions,
  • Allowing the child to take breaks or give them space,
  • Creating a classroom setting that is free from teasing and stigmas.

It’s easy to see how muscular dystrophy and obsessive-compulsive disorder go hand-in-hand. Suffering from a life-long and challenging disease is very difficult without having to adjust to changes in your everyday life. If things change, it makes you feel anxious and afraid, which can lead to disorder.