hEDS Patients Face Many Physical and Mental Challenges

Young hEDS Patients Report High Number of Physical, Mental ChallengesBY JOANA CARVALHO, MSCSept 2019

“[A]dults with EDS reported that pain, fear, stigma, and negative experiences with health care caused them to feel the most limited in their lives. We are unaware of any similar studies obtaining patient reports on what the hardest part of hEDS is for pediatric patients,” the researchers wrote.

Moreover, previous reports have shown that adult hEDS patients often experience symptoms of certain psychological disorders, including anxiety and depression, which have been found to be directly correlated with physical symptoms of the disorder (e.g., fatigue, tiredness, and pain). 

When they say “directly correlated”, they mean anxiety and depression are also symptoms of EDS. I’ve posted extensively about this connection:  

A team led by investigators from the DePaul University in Chicago, Illinois, sought to document the most prevalent symptoms and complaints of young hEDS patients, as well as to examine the impact of these symptoms on their physical and psychological well-being.

This is a meaningful measure of pain: how much your symptoms are impacting your “physical and psychological well-being”.

The study involved 34 hEDS patients 8 to 18 years old, who had been recruited at a genetics clinic at a children’s hospital in the Midwest.

All patients in the study completed a series of questionnaires to assess their physical (pain, physical symptoms, and fatigue) and psychological (anxiety, depression) concerns, as well as their degree of functional disability — that is, to what extent hEDS interfered with their normal daily life activities.

Most participants felt the most difficult thing about living with hEDS was having to cope with the physical symptoms and limitations posed by the disorder.

The majority agreed the most problematic physical symptoms were

  • pain (41.2%), and
  • fatigue (14.7%).

According to patients, pain was more severe in the

  • back,
  • neck, and
  • shoulders.

I was surprised that hips weren’t mentioned because my mother’s hips have become so painful that she’s practically crippled and mine are getting more persistently painful every year.

Then I remembered this was a cohort of young people and hips don’t usually start hurting until later life when they’ve been worn down.

Besides pain, they also reported being tired when waking in the morning, having dizziness, headaches, and muscle weakness.

Many (20.6%) also said the hardest thing for them was being unable to keep up with their friends and family because of their symptoms.

Correlation analyses revealed that physical symptoms of hEDS were the strongest predictor of functional disability, anxiety, and depression in these patients.

It’s fashionable to assume that chronic pain has psychiatric origins, that it’s a manifestation of depression and anxiety, but here is proof that physical pain leads to anxiety and depression, not the other way around.

“[H]igher pain intensity, greater number of somatic [physical] symptoms, and higher fatigue severity are all related to higher functional disability, anxiety, and depression. Number of pain locations was related to functional disability and anxiety,” the researchers wrote.

Further analyses indicated the most relevant aspect of physical symptoms having a strong effect on patients’ levels of depression and anxiety was the high number of physical hEDS manifestations.

Pinning it down even further: it’s specifically the high number/great amount of physical EDS issues, the most crippling of them being intractable pain.

The team suggested that “assessing and addressing a range of symptoms in treatment may alleviate functional disability and psychological symptoms,” and that “additional research is needed to better understand the complex needs of hEDS patients.”

Indeed: relieve the pain and many of the psychological issues will resolve themselves. I’ve always believed this because I experience it daily. High pain days are depressing and being unable to earn a living is anxiety-inducing.

Relieve the pain and most of the other misery dissipates.

Still, many pain clinics force patients off their opioids immediately and then subject them to counseling/therapy for their resulting depression and anxiety, believing this will ease the pain. But it’s actually the pain that’s causing the psychiatric symptoms.

Reference: The findings of the study, “Symptom complaints and impact on functioning in youth with hypermobile Ehlers-Danlos syndrome,” were published in the Journal of Child Health Care.
Author: Joana Carvalho, MSc is currently completing her PhD in Biomedicine and Clinical Research at Universidade de Lisboa. She also holds a BSc in Biology and an MSc in Evolutionary and Developmental Biology from Universidade de Lisboa. Her work has been focused on the impact of non-canonical Wnt signaling in the collective behavior of endothelial cells — cells that make up the lining of blood vessels — found in the umbilical cord of newborns.

Other thoughts?

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.