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Physical Therapy · Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder

Why Does Exercise Worsen hEDS or HSD Symptoms and Flares?

At a Glance

Exercise can worsen hEDS or HSD symptoms when activity exceeds your tolerance or when standing intolerance, joint instability, injury, or post-exertional malaise is involved. Use pacing and controlled movement instead of pushing through, and seek care for severe or persistent symptoms.

A sudden spike in pain and fatigue after physical therapy or exercise—often called a “flare”—can be a signal that your current exercise dose exceeds your body’s limits, but it can also reflect a new injury, an untreated overlapping condition, or post-exertional malaise (PEM) [1]. A flare does not necessarily mean you should stop moving permanently, but it does mean you should pause the provoking activity and avoid simply “pushing harder” [1]. Worsening symptoms require investigation to find the cause and adjust your approach [2].

Why Exercise Can Trigger Symptoms

For some people with hypermobile Ehlers-Danlos Syndrome (hEDS) or Hypermobility Spectrum Disorders (HSD), exercise intolerance is common and can have several underlying causes:

  • Dysautonomia and Orthostatic Intolerance: Some individuals with hEDS/HSD also have conditions like Postural Orthostatic Tachycardia Syndrome (POTS), a type of dysautonomia [3]. For these individuals, simply standing upright causes orthostatic stress (difficulty tolerating upright postures), leading the heart rate to spike and causing dizziness, palpitations, and profound fatigue [2].
  • Increased Energy Cost and Biomechanics: Joint instability and altered proprioception (your brain’s awareness of where your body is in space) mean your muscles may have to work much harder just to keep you stable. Studies suggest that some people with hypermobility use more energy and experience more pain even during basic activities like walking [4][5].
  • Central Sensitization: For some people with hEDS/HSD, the nervous system can become hypersensitive, amplifying pain signals [6]. This altered pain processing does not mean the pain is “just in your head”—it is very real—but it means that progressing exercise too quickly can overwhelm the nervous system. Structural, inflammatory, or injury-related causes of pain must still be properly assessed.
  • Post-Exertional Malaise (PEM): Some patients experience a delayed, disproportionate, and disabling worsening of symptoms (including flu-like fatigue and cognitive fog) that peaks hours or days after exertion [7][8]. This prolonged worsening is different from ordinary muscle soreness or a standard hEDS/HSD joint flare.

How to Adjust Your Therapy

If physical therapy is causing frequent flares, collaborate with a physical therapist experienced in hypermobility to modify your program:

  • Change the Position: If you experience dizziness or a racing heart, switch to horizontal or seated exercises—such as using a recumbent bike (a reclined exercise bike) or doing floor routines—to reduce orthostatic stress [9][10]. Safety Note: While swimming is a horizontal option, pool exercise must be clinician-approved, supervised, and never done alone if you have a history of fainting or severe dizziness.
  • Control the Range of Motion: Exercising forcefully into your hypermobile end-range can stress vulnerable tissues [11]. Stick to a controlled, comfortable range of motion. Research does not show any advantage to routinely pushing into hypermobile ranges [12].
  • Refine Speed and Resistance: Progressive resistance training is often highly beneficial for hEDS/HSD, but uncontrolled, fast, or excessively heavy movements can compromise joint stability [1]. Emphasize technique, slow control, and gradual loading. Reduce the resistance and volume until you find a sustainable baseline [13].
  • Practice Pacing and Monitor Timing: Activity pacing involves regulating your activity to avoid triggering flares [14]. Track your symptoms during exercise and for several days afterward to identify your recovery pattern.

When to Stop and Seek Medical Assessment

Repeated flares can be frightening and discouraging, and needing to reduce activity is not a personal failure. However, not all pain is just a normal flare.

Stop exercising and seek urgent or emergency medical care if you experience:

  • Chest pain, severe shortness of breath, sustained palpitations, blue lips, or fainting (syncope) [15][16].
  • Sudden neurological symptoms, such as new weakness, trouble speaking, numbness/tingling, saddle numbness (numbness in the groin/buttocks), or loss of bladder/bowel control [17].
  • A visibly deformed joint, an inability to bear weight, or a suspected dislocation or severe subluxation (partial dislocation) that does not resolve [18].

Discuss with your doctor if you experience:

  • Severe, prolonged post-exertional malaise (PEM) that leaves you unable to function. This should not be managed by simply trying to push through with small exercise progressions. It warrants a clinical assessment for conditions like ME/CFS, anemia, thyroid disease, sleep disorders, or medication effects [19].
  • Dizziness or a racing heart when standing. Your doctor can perform a guided orthostatic assessment (such as an active stand or tilt-table test) rather than relying on unguided home heart-rate checks [3].

Common questions in this guide

Why can exercise make my hEDS or HSD symptoms flare?
A flare may happen when the exercise dose exceeds your current tolerance, but worsening can also reflect a joint injury, standing-related autonomic problems such as POTS, increased pain sensitivity, or delayed post-exertional malaise. Pause the activity that triggered symptoms and avoid simply pushing harder while the cause is assessed.
How should physical therapy be adjusted if it repeatedly causes flares?
Work with a physical therapist who understands hypermobility to reduce resistance, repetitions, or total volume until you find a sustainable baseline. Use slow, controlled movements through a comfortable range, avoid forcing hypermobile end ranges, and progress only when recovery is consistent.
Could dizziness and a racing heart during exercise be caused by POTS?
Yes. POTS and other forms of dysautonomia can make upright exercise trigger a rapid heart rate, dizziness, palpitations, and marked fatigue. Ask your doctor whether a guided standing assessment or tilt-table test is appropriate rather than relying on unguided home heart-rate checks.
How do I know whether I am having PEM rather than a typical exercise flare?
Post-exertional malaise is a delayed, disproportionate worsening that may peak hours or days after exertion and can include disabling fatigue, flu-like symptoms, and cognitive fog. It is different from ordinary muscle soreness or a usual joint flare and should be discussed with a clinician, especially if it leaves you unable to function.
When should I stop exercising and get urgent medical help?
Stop and seek urgent or emergency care for chest pain, severe shortness of breath, sustained palpitations, blue lips, fainting, new weakness or trouble speaking, new numbness, loss of bladder or bowel control, a visibly deformed joint, inability to bear weight, or a suspected dislocation that does not resolve. These symptoms should not be treated as a routine hEDS or HSD flare.
What should I do if standing exercises make my symptoms worse?
Switch to seated or reclined activity, such as a recumbent bike or floor exercises, to reduce the strain of being upright. Track symptoms during exercise and for several days afterward, and ask your clinician or physical therapist how to set a safe baseline before increasing difficulty.
Could something besides hEDS or HSD be causing my severe exercise intolerance?
Yes. Severe or prolonged fatigue may also be related to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), anemia, thyroid disease, sleep disorders, medication effects, a recent illness, or an injury. A clinician can assess these possibilities, especially if symptoms are new, worsening, or disabling.

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References

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This page is for informational purposes only and does not constitute medical advice. Exercise changes and severe or new symptoms should be reviewed with a clinician, with urgent care for warning signs such as chest pain, fainting, or new neurological symptoms.