Top 5 Ehlers-Danlos Hypermobility Considerations: Stress & Anxiety

Does your management of hypermobility consider the following areas of influence?

Ehlers-Danlos Hypermobility Syndrome (hEDS) and Hypermobility Spectrum Disorders (HSD) are a relatively new area of medicine despite having been first discovered in the early 1900s. While current research is focused on expediting the diagnosis process for hEDS (it typically takes 10+ years for an accurate diagnosis, leaving individuals exposed to a decade of additional ramifications), management of symptoms is currently the key focus for doctors, therapists, and patients alike.

Hypermobility Spectrum Disorders (also described as Joint Hypermobility Syndrome) are similar to hEDS with regards to the systemic impact beyond joint instability and, as such, both can be positively impacted by daily behaviours as well.

In this blog series we will discuss the Top-5 considerations for Ehlers-Danlos Hypermobility Syndrome, starting today with Stress & Anxiety.

Stress & Anxiety Awareness

Chronic stress & anxiety will run down any human being; most people can relate to catching a cold or flu following a stressful life-event. In those with hypermobility, such events can have far-reaching effects with amplified symptoms thereby creating a frustrating cycle of pain, fatigue, anxiety, POTs, insomnia, and digestive upset (to unfortunately name just a few).

While external (environmental) stressors play a key role in symptom management, there is also an internal (hormonal) cause at play: A known correlation has been found between hypermobility and higher levels of adrenaline. Greater adrenaline production predisposes people to anxiety and enhances overall sensitivity to stress thereby perpetuating this cycle of symptoms. Whether emotional, physical, or environmental, the impact of stress is felt more intensely in people with hEDS & HSD: This internal, and very real effect, is akin to feeling deafened by music that others can barely hear.

“Sickness, pain, emotional stress, and even fatigue itself can raise adrenaline levels, and acute stresses can trigger adrenaline surges, leaving you jittery, anxious, and even more exhausted. Even sensory stimuli, such as bright lights or loud noises, can trigger an exaggerated or over-response, causing sensitivity to light and sound.”
- Dr Alan Pocinki MD, PLLC 2010 from “Anxiety and EDS-H/JHS

To further cloud the issue, there are also arguments to be made for direct musculoskeletal sources of stress and anxiety based on how and where a hypermobile person seeks structural stability. This further drives the aforementioned adrenaline production and ensuing over-sensitivity which will be touched on further within this 5-part series.

Does this higher surge of adrenaline and over-sensitivity mean you're doomed to a persistent onslaught of pain, anxiety, and fatigue? Not at all. We are all in control of our environments to varying degrees and genetic predispositions are quite simply that: something we are predisposed to but can better manage through awareness, understanding, and choices.

By targeting the root causes of our anxiety – too much adrenalin – we can change the environment inside the brain. When we optimize our genes, we optimize our life…and when we do that, anything is possible.
- Dr. Rostenberg

Summary & Questions to Consider

While there is a genetic reason for higher adrenaline, it is something that can be positively influenced by changing environmental stressors in the same manner as how someone with Type 1 diabetes requires a certain lifestyle to thrive.

Objectively evaluate your stressors around symptom peaks and flares (when you're not in an anxious state) by asking the following questions:

  • Can you identify any patterns- timing, environment, people, etc-  regarding any of your repeated bodily manifestations?
  • Are your symptoms heightened with temperature changes?
  • Do certain environments or situations increase HR/breathing/temperature or make you dizzy?
  • Does muscular tension or an increase in pain occur when wearing certain clothes or shoes?
  • What habits or life events tend to take place in the days prior to symptom onset?
  • Are symptoms markedly worse when you haven't slept?

Half the battle with stress is knowing where it is coming from and whether it is something you can influence directly. Practicing objective observation can help you gather information on factors to adjust that are within your control (ex: people, places, food, clothing, habits), and to develop management strategies for those that are not (ex: temperature).

If "Everything-is-stressful-all-the-time" is your answer, tracking these factors more carefully for a few weeks or asking a loved one for feedback can help identify peaks and valleys. Symptoms are not character flaws and being able to pinpoint the stressors that are affecting your body the most can empower you to create an environment for success. Key suggestion: Do so when not in fight-or-flight mode as adrenaline makes for a wonky filter, as depicted nicely by Awkward Yeti.

It gave a tremendous level of self-confidence, that through exploration and learning one could understand seemingly very complex things in one's environment. - Steve Jobs

Keep reading the Top-5 Ehlers-Danlos Hypermobility considerations with Part 2: Hormonal Cycles.