Chronic Fatigue Syndrome in Hypermobile Ehlers-Danlos Syndrome
Having hypermobile Ehlers-Danlos Syndrome (hEDS) does not mean you automatically have fibromyalgia or Chronic Fatigue Syndrome (CFS), though there are significant overlaps between these conditions. While fatigue is extremely common in hEDS, the presence of additional conditions like sleep apnea and inappropriate sinus tachycardia further complicates your clinical picture.
Relationship Between hEDS and Fatigue
- Fatigue is a frequent and clinically significant problem in hEDS, with more than three-quarters of patients suffering from severe fatigue 1
- Chronic fatigue significantly contributes to impaired health-related quality of life in hEDS patients 2
- However, having hEDS does not automatically mean you have fibromyalgia - they are distinct conditions with overlapping symptoms 3
Autonomic Dysfunction and hEDS
- Dysautonomia, particularly POTS (postural orthostatic tachycardia syndrome), is commonly comorbid with both hEDS and CFS 3
- Your inappropriate sinus tachycardia is a form of autonomic dysfunction that frequently co-occurs with hEDS 3
- Orthostatic intolerance and chronic fatigue syndrome have been documented to occur together with EDS, particularly due to abnormal connective tissue in blood vessels 4
Sleep Apnea's Role
- Sleep apnea is a significant contributor to fatigue in hEDS patients 2
- Cartilaginous defects in the head and neck region associated with EDS increase the risk of obstructive sleep apnea 5
- Treating your sleep apnea is crucial as it can improve left ventricular ejection fraction and functional status 3
Multiple Contributing Factors
- Other problems commonly contributing to fatigue in hEDS include chronic pain, deconditioning, cardiovascular autonomic dysfunction, bowel and bladder dysfunction, psychological issues, and nutritional deficiencies 2
- Prediabetes can further complicate the clinical picture, as metabolic issues can exacerbate fatigue symptoms 2
- The evaluation of chronic fatigue in EDS requires careful clinical examination to exclude common causes including anemia, hypothyroidism, and chronic infection 2
Diagnostic Considerations
- The diagnosis of CFS in patients with hEDS should consider the significant overlap in symptoms between the conditions 2
- Testing for mast cell disorders may be considered if you present with episodic symptoms involving multiple physiological systems 3
- Autonomic testing should be considered in patients with hEDS and refractory GI symptoms who report orthostatic intolerance 3
Management Approach
- Treatment of fatigue in hEDS typically involves managing specific symptoms and addressing comorbid conditions 2
- Physical therapy and methods to prevent deconditioning are crucial components of fatigue management in hEDS 2
- Comprehensive treatment should focus on maintaining function and providing social, physical, and nutritional support 2
While there is significant overlap between hEDS, autonomic dysfunction, and chronic fatigue, having hEDS does not automatically mean you have fibromyalgia or CFS. Your constellation of symptoms (hEDS, sleep apnea, inappropriate sinus tachycardia, and prediabetes) creates a complex clinical picture that requires comprehensive evaluation to determine if you meet the specific diagnostic criteria for CFS.