Navigating Pain Flares with EDS or Hypermobility: A Practical Guide

Hypermobility
June 05, 2025•3 min read

Navigating Pain Flares with EDS or Hypermobility: A Practical Guide

Living with Ehlers-Danlos Syndrome (EDS) or hypermobility can bring challenging days when pain flares feel overwhelming. If you’re in the midst of a tough flare, know this: you’re not alone. Many experience cycles of pain that can last days or even months. Here’s a practical roadmap to help you navigate these difficult times and move forward.

Step 1: Rule Out Common Medical Contributors

Before diving into management, consult a knowledgeable provider to check for conditions that might amplify pain or destabilize your nervous system. Common culprits linked to EDS/hypermobility include:

  • Mast Cell Activation Syndrome (MCAS)

  • Postural Orthostatic Tachycardia Syndrome (POTS)

  • Tethered Cord Syndrome

  • Chiari Malformation

  • Craniocervical Instability (CCI)
    These can significantly worsen pain and need proper evaluation.

Step 2: Reflect on the Last 48–72 Hours

If your flare is new or intensifying, consider recent changes:

  • Tried a new exercise?

  • Traveled more than usual?

  • Faced extra stress at work or home?

  • Struggled with sleep?

  • Encountered triggers like food, sounds, or smells?
    Keep a judgment-free “Unusual Responses Journal” to track patterns. This empowers you and your providers to spot triggers and make smart adjustments.

Step 3: Talk to Your PT Before Stopping Exercise

If you’ve been active and hit a flare, don’t go silent! Many halt movement out of fear or hesitation to “bother” their physical therapist. You’re never a bother. Pausing entirely can fuel “boom or bust” cycles. Instead, send a quick message to your PT—they can tweak your plan to keep progress alive without pushing too hard.

pain maganement box

Step 4: Build a Multimodal Pain Management Toolkit

Physical therapy boosts joint stability and function long-term, but flares often need extra help. Try these tools:

  • Prescribed pain medications (as tolerated): Short-term use can break pain-distress cycles.

  • Low Dose Naltrexone (LDN): Emerging evidence suggests it eases chronic pain and inflammation.

  • Better sleep quality: Use CBT-I, modular pillows, or calming routines for a game-changing rest.

  • Slow breathing practices: Diaphragmatic breathing soothes the nervous system, aiding pain and sleep.

  • Gentle movement: Pelvic tilts or cat-camel exercises support without overloading.

  • Vagus nerve stimulation: Humming, singing, or ear massages shift you to a restful state.

  • Nervous system soothing: Visualize loved ones or happy memories to spark healing brain states.

  • Laughter and uplifting videos: Healthy distraction cuts the brain’s pain focus.

  • Grounding techniques: Name colors, count, tap, or try box breathing.

  • TENS unit: Electrical stimulation can briefly override pain signals.

  • Acupuncture or dry needling: May ease pain and regulate the nervous system.

  • Gentle massage: Relaxation-based (not deep tissue) techniques soothe without joint stress.

  • Compression garments/taping: Research shows benefits for pain, balance, and proprioception.

  • Grounding (earthing): Early studies hint at reduced pain and better sleep.
    When you can, cut exposure to “Signals of Danger”—overbooking, long travel, or packed appointment days that spike stress.

signals of danger

Avoid Mental Traps

Don’t spiral into guilt or regret (“If only I hadn’t…”). Shame and self-blame ramp up nervous system distress. Shift focus to small, doable steps that reclaim control.

You Are Not Too Far Gone

You’ve got this. Take one step—reach out, book that appointment you’ve delayed. You deserve care and healing, and support is here when you’re ready.

References

  1. Eccleston C, et al. Cochrane Database Syst Rev. 2017;2017(2):CD012536.

  2. Patten DK, et al. J Pain Res. 2018;11:2589-2597.

  3. Edinger JD, Carney CE. Overcoming Insomnia. Oxford Univ Press; 2014.

  4. Jerath R, et al. Med Hypotheses. 2006;67(3):566-571.

  5. Breit S, et al. Front Psychiatry. 2018;9:44.

  6. Johnson MI, Walsh DM. Nat Rev Rheumatol. 2010;6(6):314-316.

  7. Tough EA, et al. Eur J Pain. 2009;13(1):3-10.

  8. Celletti C, et al. Biomed Res Int. 2013;2013:580460.

  9. Chevalier G, et al. J Environ Public Health. 2012;2012:291541.

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