EDS: Severe GI Symptoms, Reduced Quality of Life

Hypermobile EDS Linked to Severe GI Symptoms, Reduced Quality of Life – by Jose Marques Lopes, PhD – September 12, 2018

I’m glad to read this and see that “it’s not only me” who has constant upsets in my guts. I was having these problems even when I was still in college, long before (30 years) I found out I had EDS.

Patients with hypermobile Ehlers-Danlos syndrome (hEDS) have an increased prevalence and severity of gastrointestinal (GI) symptoms, and use more potentially damaging medications than healthy people without the disorder, according to a new study.

Studies have reported frequent occurrence of GI symptoms in patients with connective tissue hypermobility, especially in patients with hEDS.

These findings were reported in the study, “Gastrointestinal Symptoms in Marfan Syndrome and Hypermobile Ehlers-Danlos Syndrome,” published in the journal Gastroenterology Research and Practice.

The study took place at St. George’s Hospital in London, and included a total of 45 patients with Marfan syndrome (33 women, mean age 28, age range 19-41), and 45 patients with hEDS (39 women, mean age 24, age range 18-32), with no previous GI diagnosis. Age- and gender-matched controls without hEDS or Marfan syndrome were also recruited from an outpatient clinic at St. George’s Hospital.

Patients with hEDS or Marfan syndrome reported significantly more GI symptoms than controls.

Specifically,

• abdominal pain;
• bowel symptoms (including constipation);
• heartburn (a burning sensation in the chest or throat);
• dysphagia (swallowing problems); and
• dyspepsia (indigestion)

were all significantly more common in patients than in controls.

Patients with hEDS had a significantly higher prevalence of all assessed GI symptoms; and these were more frequent and severe.

It just makes sense that if the long “tube” of our intestines is flabby, it will be harder to “push” food through.

Instead of pressure pushing the contents further down the tube as happens with stiff-walled tubes like pipes, if there’s even a little “clumping” in our intestine the material behind it can push the overly flexible walls outward without budging the blockage.

Then everything backs up more and more until the pressure is eventually high enough to burst through the blockage or the blockage slowly liquefies over time. I believe this pressure is what causes localized and fierce abdominal pains.

I’ve found that if I push my fists as hard as I can into the painful spot in my abdomen, I often feel a lump. When I work on breaking it up by grinding my fists deeply around the area, my guts squeal and burble until they eventually settle down.

They had more frequent functional GI disorders (FGIDs), including heartburn, dysphagia, dyspepsia, irritable bowel syndrome, constipation, diarrhea, abdominal bloating, and unspecified bowel disorder, compared to controls.

Hypermobile EDS patients also used significantly more potentially GI-impacting medications.

SF-36 questionnaire, hEDS patients appeared to have a significantly worse quality of life (lower scores) than controls in all assessed domains, namely in

• physical functioning,
• limitations due to physical health or emotional problems,
• level of energy or fatigue,
• emotional well-being,
• social functioning, pain, and
• general health.

According to the team, additional studies are needed “to understand the impact of connective tissue disorders on gastrointestinal symptoms.”

Author Details

Jose Marques Lopes, PhD

José is a science news writer with a PhD in Neuroscience from Universidade of Porto, in Portugal. He has also studied Biochemistry at Universidade do Porto and was a postdoctoral associate at Weill Cornell Medicine, in New York, and at The University of Western Ontario in London, Ontario, Canada. His work has ranged from the association of central cardiovascular and pain control to the neurobiological basis of hypertension, and the molecular pathways driving Alzheimer’s disease.