For patients with Ehlers-Danlos Syndromes (EDS), lifestyle modifications focus primarily on managing symptoms related to joint hypermobility, pain, fatigue, and autonomic dysfunction. Encourage regular, gentle physical activity tailored to individual tolerance to maintain joint mobility, muscle strength, and cardiovascular health without provoking symptom exacerbation or joint injury. This includes low-impact exercises and physiotherapy guided by professionals with expertise in hypermobility and EDS NICE CKS.
Advise patients to avoid activities that cause repetitive strain or joint subluxation/dislocation, and to use assistive devices or orthotics as needed to support joint stability and reduce injury risk NICE CKS.
Energy management strategies are important, especially for those experiencing fatigue or autonomic symptoms such as orthostatic intolerance or postural orthostatic tachycardia syndrome (POTS), which are common in hypermobile EDS. Patients should learn to balance activity and rest, pacing themselves to avoid post-exertional symptom exacerbation, and incorporate rest periods and relaxation techniques into their daily routine NICE CKS,NICE NG206 Aziz et al. 2025.
Skin care and injury prevention are also crucial due to skin fragility; patients should maintain good skin hygiene, use emollients to prevent dryness, and protect skin from trauma NICE CKS.
Dietary advice to maintain a balanced diet and adequate hydration supports overall health and may help manage symptoms, particularly in those with gastrointestinal manifestations associated with EDS Aziz et al. 2025.
Smoking cessation and weight management should be encouraged to improve vascular health and reduce mechanical stress on joints NICE CKS.
Referral to specialist physiotherapists, occupational therapists, or other allied health professionals with experience in EDS is recommended for tailored rehabilitation and symptom management plans NICE CKS.
Overall, lifestyle modifications for EDS patients should be individualized, focusing on symptom control, prevention of complications, and improving quality of life through multidisciplinary support NICE CKS Aziz et al. 2025.
Key References
- CKS - Common musculoskeletal presentations in children
- CKS - Tiredness/fatigue in adults
- CKS - Leg ulcer - venous
- NG206 - Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management
- NG210 - Pelvic floor dysfunction: prevention and non-surgical management
- (Aziz et al., 2025): AGA Clinical Practice Update on GI Manifestations and Autonomic or Immune Dysfunction in Hypermobile Ehlers-Danlos Syndrome: Expert Review.