Stability and Resilience: Managing hEDS and HSD

Managing hypermobility is not about “fixing” a single gene or joint; it is about building a body that is more stable, resilient, and supported. Because hEDS and HSD affect so many systems, the most effective approach is multidisciplinary, meaning it involves a team—including you—working on physical, emotional, and practical strategies ^[1][2].

The goal of management is to improve your quality of life and function, rather than simply chasing a life without any pain. By focusing on stability and pacing, you can learn to navigate your symptoms with more confidence ^[3].

The Foundation: Physical Therapy (PT)

For people with hypermobility, exercise should be individualized, graded, and performed in tolerable ranges. Your PT should focus on joint stabilization and motor control—teaching your muscles how to support your joints while avoiding forced end-range loading that can aggravate symptoms ^[4][5].

• Proprioception Training: Because your “internal GPS” (proprioception) is often less accurate, you need exercises that help your brain and body communicate better ^[6]. This might involve balance work or using mirrors to ensure your joints are in a “neutral” position rather than locked or hyperextended ^[7].
• Progressive Strengthening: Building muscle is crucial to aid your joints ^[8]. This should be done gradually, and your PT should assess you for post-exertional malaise before recommending progression. If an exercise causes a “spike” in pain that lasts into the next day, it may need to be modified ^[1].
• Neutral Alignment: You should be taught to avoid “end-range” positions—like locking your knees while standing or “hanging” on your hip joints—which can further stress your connective tissue ^[7].

Occupational Therapy and Daily Support

Occupational Therapy (OT) focuses on how you navigate your world. An OT can help you find tools and techniques to save energy and protect your joints during daily tasks ^[3].

• Pacing: This is the practice of breaking tasks into smaller pieces and resting before you feel exhausted. It helps prevent the “boom and bust” cycle where you do too much on a good day and then “crash” for several days afterward ^[3][9].
• Assistive Devices: For some, using ring splints (to support finger joints), custom orthotics, or even compression garments can provide enough external stability to reduce pain and fatigue ^[10][11]. These tools should complement, not replace, your strengthening program ^[4].
• Ergonomics: Small changes to your workspace or how you hold a toothbrush can significantly reduce the “micro-stress” on your joints ^[3].

A Multimodal Approach to Pain

Pain in hEDS/HSD is complex. It often involves a mix of physical joint stress and central sensitization (an altered pain processing state) ^[12]. Because of this, medication choice depends heavily on your pain phenotype and individual risks.

• Medication Management: NSAIDs (like ibuprofen), acetaminophen, SNRIs (Serotonin-Norepinephrine Reuptake Inhibitors), and opioids each have important indications and harms ^[13]. Doses and duration must be clinician-directed.
• Mind-Body Strategies: Programs that focus on the psychological impact of chronic pain—such as Acceptance and Commitment Therapy (ACT)—can be very helpful. ACT is an adjunct for coping and function rather than evidence that pain is psychological ^[6][9].

Managing Dysautonomia and POTS

If you experience dizziness, racing heart, or “brain fog” (POTS), management usually starts with non-drug strategies to support your circulation ^[14].

• Hydration and Salt: Many patients are advised to increase fluids and salt to help keep their blood volume up, but this requires explicit clinician review. It is not safe for everyone, especially if you have hypertension, kidney or heart disease, or are pregnant ^[14].
• Compression: Wearing medical-grade compression stockings or abdominal binders can help prevent blood from pooling in your legs when you stand ^[15].
• Recumbent Exercise: If standing exercise is too difficult, start with “horizontal” activities like swimming, rowing, or using a recumbent bike. This allows you to build aerobic fitness, but keep in mind that rowing or cycling may still place mechanical stress on unstable joints ^[16][17].

By combining these strategies, you can create a personalized toolkit that helps you manage your symptoms and maintain your independence ^[2].