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Post-Exertional Symptom Exacerbation and Ehlers-Danlos Syndrome

Ehlers-Danlos syndrome or EDS is a genetic connective tissue disorder that exists on a spectrum and whose main symptoms are chronic pain and long-term fatigue. In addition to those primary symptoms, people can experience involuntary body functions such as dizziness and fainting, and/or cardiovascular and digestive issues.

Post-exertional symptom exacerbation or PESE can happen to people who have EDS and it can significantly interfere with everyday tasks. A recent study published in the European Journal of Pain has established possible links between sensory signal imbalances and one of the main types of EDS, hypermobile EDS, with emerging data on PESE and the medical condition.

What Is Post-Exertional Symptom Exacerbation?

Post-exertional symptom exacerbation is a debilitating and possibly delayed reaction where someone experiences exhaustion disproportionate to an effort they have made. This can happen even with daily tasks that the person could handle without issue before. Physical efforts and workouts are the most common causes of PESE.

Activities that can trigger a PESE reaction include:

  • Hygiene tasks like taking a shower
  • Daily tasks such as preparing a meal
  • Any social activity
  • Walking, running, or other fitness activities
  • Sitting for an extended period of time including working at a desk
  • Excessive sensory input like loud sounds, music, or bright or flashing lights

For individuals who have Ehlers-Danlos syndrome, PESE can especially aggravate the following symptoms:

  • Brain fog
  • Cardiovascular issues
  • Fatigue
  • Pain
  • Respiratory challenges
  • Sleep disturbances

PESE can happen 12 to 48 hours after performing the triggering activity. An episode can last for days to weeks depending on individual circumstances and symptoms.

New Findings on PESE, Hypermobile EDS, and Sensory Signal Imbalances

In the recent study “Exploring pain mechanisms in hypermobile Ehlers-Danlos syndrome: a case-control study, ” a team of researchers in Belgium discovered a potential relationship between sensory signal imbalances and chronic pain for people who have hypermobile EDS.

Hypermobile EDS usually involves:

  • Hypermobile joints
  • Frequent joint dislocations
  • Joint aches
  • Fatigue

The new study performed pain assessments on a group of 20 women with hypermobile EDS who reported chronic pain and a control group of 20 individuals with no known health condition or pain.

Two of the assessments targeted descending pain signals:

  • Calculating conditioned pain modulation (CPM) by submerging the participants’ hands in hot water
  • Exercise-induced hypoalgesia (EIH) by performing a cycling workout

The overall study indicated a link between an imbalance in sensory signals and how the brain of those with hypermobile EDS processed pain differently. EIH numbers showed a significant difference between the EDS group and the control one. People with hypermobile EDS had lower values in their EIH, which creates questions and the need for further studies of how exercise therapy may affect chronic pain in people with hypermobile EDS.

Additional research could also help people address PESE when they have EDS, depending on their specific reactions. Future studies can also refine what types of exercise may be helpful in pain management without aggravating other symptoms depending on the EDS type someone has.

The results of the EIH evaluations also varied depending on the body area the test targeted, raising the need to perform more tests on muscles that were actively engaged versus those that were not during a specific physical activity.

The researchers find the results promising and the study opens doors for future ones, especially as a larger-scale study could confirm or challenge the new findings.

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