Treatment of Back Pain in Ehlers-Danlos Syndrome
For back pain in Ehlers-Danlos syndrome, prioritize physical therapy with individualized, supervised exercise programs focused on joint stabilization and strengthening, as this is the only treatment proven effective for reducing joint instability and generalized pain in hypermobile EDS. 1
Understanding the Challenge
Ehlers-Danlos syndrome (EDS) is a heterogeneous group of inherited connective tissue disorders characterized by joint hypermobility, tissue fragility, and chronic pain. 2 The hypermobile type (hEDS) is the most common subtype, where chronic pain—including back pain—constitutes one of the main symptoms. 1 Unlike typical mechanical back pain, EDS-related back pain stems from underlying collagen abnormalities affecting joint stability and connective tissue integrity. 3, 2
First-Line Treatment: Physical Therapy
Supervised, individualized exercise therapy is the cornerstone of treatment for EDS-related back pain, as it directly addresses joint instability and prevents secondary osteoarthritis. 1
Exercise programs should incorporate individual tailoring, supervision, stretching, and strengthening—these components are associated with the best outcomes in chronic back pain. 4
Physical therapy should focus specifically on joint stabilization exercises to compensate for the underlying ligamentous laxity characteristic of EDS. 1
Home exercise programs improve function in the short term, but supervised group therapy provides better patient global assessment outcomes. 4
Pharmacologic Management
NSAIDs as First-Line Medication
NSAIDs are recommended as first-line pharmacologic treatment for pain and stiffness, with proven efficacy for spinal pain and function improvement. 4
For patients with gastrointestinal risk factors, use either non-selective NSAIDs plus gastroprotective agents or selective COX-2 inhibitors. 4
Consider cardiovascular risk factors when selecting between traditional NSAIDs and COX-2 inhibitors. 4
Adjunctive Medications
Acetaminophen may be considered for pain control when NSAIDs are insufficient, contraindicated, or poorly tolerated. 4
Tricyclic antidepressants or SNRIs (such as duloxetine) can be added for chronic pain management, particularly if neuropathic pain components are present. 4
Gabapentin may provide benefit if radicular symptoms develop, though evidence is limited to small, short-term benefits. 4
Avoid systemic corticosteroids, as they have not been shown more effective than placebo for back pain. 4
Nonpharmacologic Therapies for Refractory Pain
If pain persists despite physical therapy and NSAIDs, consider adding:
Acupuncture for chronic back pain (moderate evidence of effectiveness). 4, 5
Cognitive-behavioral therapy to address pain catastrophizing and improve functional outcomes. 4
Spinal manipulation by appropriately trained providers may provide small to moderate benefits. 4, 5
Intensive interdisciplinary rehabilitation for patients not responding to initial therapies. 4
Critical Pitfalls to Avoid
Never recommend bed rest—remaining active is superior for back pain management in all contexts. 5
Avoid invasive interventional procedures (including nerve stimulation, epidural injections) for nonspecific back pain in EDS, as these lack evidence and carry additional risks given tissue fragility. 6
Exercise caution with any surgical intervention in EDS patients due to tissue fragility, abnormal wound healing, and increased surgical complications. 7, 3, 2
Arteriography is contraindicated in vascular EDS due to arterial fragility. 7
Do not overlook psychosocial factors, which are stronger predictors of back pain outcomes than physical examination findings. 5
When to Consider Imaging
Imaging is generally not indicated for nonspecific back pain in EDS unless red flags are present (cauda equina symptoms, progressive neurologic deficits, unexplained weight loss, fever). 8
If imaging becomes necessary after 4-6 weeks of failed conservative management with worsening symptoms, MRI is the preferred modality to visualize disc pathology and nerve root compression. 8
Treatment Algorithm
Initiate supervised physical therapy with joint stabilization focus immediately. 1
Start NSAIDs (with gastroprotection if indicated) for pain control. 4
Add acetaminophen if NSAIDs are insufficient or contraindicated. 4
After 4-8 weeks, if inadequate response, add cognitive-behavioral therapy, acupuncture, or massage therapy. 4, 5
Consider tricyclic antidepressants or duloxetine for persistent chronic pain. 4
For refractory cases, refer to intensive interdisciplinary rehabilitation program. 4
Avoid opioids unless absolutely necessary, and only after exhausting all other options, given the chronic nature of EDS and risks of long-term opioid therapy. 4