September is Pain Awareness Month—a time to shine a light on the silent journey of so many chronic pain sufferers. The unwavering type of pain that lasts for longer than six months called “chronic pain” can seem endless when you have Ehlers Danlos syndrome (EDS). It is likely the most common symptom so many of us share. This month in honor of Pain Awareness Month, we highlight a few pain-related facts related to EDS to remind you that you are not alone.

“Pain is a constant companion. It dictates daily life, from mobility to mental well-being,” participants in the cohort state in the recently published paper, A qualitative study of pain and related symptoms experienced by people with Ehlers-Danlos syndromes. They share that 90% of EDS patients endure chronic pain, often creating a relentless shadow impacting every facet of life​. “Pain was universal and often resulted in fatigue and disordered sleep, which impacted physical function. Most participants reported that their symptoms worsened over time.” (PubMed)​.

Type of Pain Varies by Individual, Most Commonly Reported

• Musculoskeletal Turmoil: Joint dislocations can turn everyday movements into a precarious balancing act​ striving for stability.
• Neuropathic Nuances: Nerves misfire, creating sensations akin to electric shocks or burning​ according to insights published on Mayo Clinic Connect (their public share resource on EDS and other disorders).
• Headaches & Migraines: Tension, fatigue, allergic or mast cell reactions, weather and cervical instability can be just a few of the reasons that lead to headaches that feel like a persistent storm cloud in your head​.
• Abdominal Aches: Gastrointestinal pain, often linked to IBS and/or gastroparesis, adds an extra layer of challenge​ to the ongoing discomfort and mounting challenges with meeting our basic needs.
• Comorbid Complications: 46% face temporomandibular joint disorder (TMD), complicating eating and speaking​ (BioMed Central).

Management and treatment are often barriers, as frequently gaslit patients search for compassionate providers through a routine of trial and error to find what works effectively for each patient. Multidisciplinary approaches to building a comprehensive pain management team and strategy can include a blend of physical therapy, medication, and lifestyle habits​.

More EDS-Related Pain Research:

Schubart, J. R., Mills, S. E., Francomano, C. A., & Stuckey-Peyrot, H. (2024). A qualitative study of pain and related symptoms experienced by people with Ehlers-Danlos syndromes. Frontiers in Medicine, 10, 1291189. https://doi.org/10.3389/fmed.2023.1291189