What symptoms are described in hypermobile EDS: pain, fatigue and associated features?
Pain, instability and fatigue are often described; the features present and their severity vary widely from one person to another.
- 8 sources
- 4 min read
- Clinical review
- Verified 9 November 2026
Key points
- The core musculoskeletal features described in hEDS and HSD include hypermobility, joint or muscle pain, instability, subluxations or dislocations, and repeated injuries [1, 2].
- Fatigue and reduced quality of life are frequently reported, but how often they occur varies between studies; they are not specific to hEDS [3, 5, 7].
- In a French cohort of 37 patients with hEDS followed at a national reference center (a French hospital center designated for a rare disease), 97% had severe chronic pain; this proportion cannot be extended to all hypermobile people [4].
- Digestive symptoms, headaches, orthostatic intolerance or sleep problems are reported in some cohorts, but their presence is neither required nor sufficient to diagnose hEDS [3, 6, 7].
- There is no universal course: the prognosis varies widely and remains difficult to predict for any given person [3].
Musculoskeletal features
Fatigue and functional impact
Reported features outside the joints
Symptoms, comorbidities and causation
Natural history: avoiding overly simple trajectories
What we do not know
References and level of evidence
- Tinkle B, Castori M, Berglund B, Cohen H, Grahame R, Kazkaz H, Levy H. Hypermobile Ehlers-Danlos syndrome (a.k.a. Ehlers-Danlos syndrome Type III and Ehlers-Danlos syndrome hypermobility type): Clinical description and natural history. American Journal of Medical Genetics Part C, 175(1):48–69 2017. DOI: 10.1002/ajmg.c.31538. PMID: 28145611.(evidence synthesis)Limitations: Narrative review based on the literature available in 2017. Read: abstract.Declared conflicts of interest: Not reviewed in the part of the source that was read
- Carroll MB. Hypermobility spectrum disorders: A review. Rheumatology and Immunology Research, 4(2):60–68 2023. DOI: 10.2478/rir-2023-0010. PMID: 37637226.(evidence synthesis)Limitations: Narrative, non-systematic review. Read: full text (PMC10457547).Declared conflicts of interest: The author declares no conflict of interest
- Yew KS, Kamps-Schmitt KA, Borge R. Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders. American Family Physician, 103(8):481–492 2021. PMID: 33856167.(evidence synthesis)Limitations: Clinical review for US primary care; recommendations rated C (consensus, expert opinion). Read: abstract and publisher text (aafp.org).Declared conflicts of interest: The authors declare no relevant financial relationships
- Bénistan K, Martinez V. Pain in hypermobile Ehlers-Danlos syndrome: New insights using new criteria. American Journal of Medical Genetics Part A, 179(7):1226–1234 2019. DOI: 10.1002/ajmg.a.61175. PMID: 31075184.(observational study)Limitations: 37 patients from the French national reference center; small sample, specialist recruitment. Read: abstract.Declared conflicts of interest: Not reviewed in the part of the source that was read
- Ladell AJM, Golden DW, Oliemans JP, Walls KD, Manocha RHK, Fletcher JR. Perceived quality of life, fatigue and the metabolic cost of walking in generalized hypermobility spectrum disorder and hypermobile Ehlers-Danlos syndrome. Frontiers in Rehabilitation Sciences, 6:1706912 2025. DOI: 10.3389/fresc.2025.1706912. PMID: 41394316.(observational study)Limitations: 11 HSD/hEDS participants and 11 matched controls; secondary data analysis; very small sample. Read: full text (PMC12698607).Declared conflicts of interest: The authors declare no commercial or financial relationships that could constitute a conflict of interest
- Darakjian AA, Bhutani M, Fairweather D et al. Similarities and differences in self-reported symptoms and comorbidities between hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders. Rheumatology Advances in Practice, 8(4):rkae134 2024. DOI: 10.1093/rap/rkae134. PMID: 39660107.(observational study)Limitations: 2,088 adult patients from a specialist EDS clinic (Mayo Clinic, Florida); self-reported intake questionnaire; recruitment bias. Read: full text (PMC11630848).Declared conflicts of interest: One author (F.A.F.) declares consulting work for industry, considered unrelated to the article; the other authors declare none
- Kulin D, Holtmann G, Fairlie T, Staller K, Nurko S, Keefer L, Drossman DA, Jones MP, Aziz Q, Shah A. Meta-Analysis: Chronic Gastrointestinal Symptoms and Comorbidities in Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders. Alimentary Pharmacology & Therapeutics, 64(5):574–589 2026. DOI: 10.1111/apt.70856. PMID: 42437376.(evidence synthesis)Limitations: 19 studies; substantial clinical heterogeneity, quality of evidence rated low by the authors; some estimates rest on a small number of studies. Read: abstract and full text (PMC13466160).Declared conflicts of interest: Several authors declare consulting work or industry funding (including Bayer, AbbVie, Ardelyx, Takeda, Pfizer)
- Tofts LJ, Simmonds J, Schwartz SB et al. Pediatric joint hypermobility: a diagnostic framework and narrative review. Orphanet Journal of Rare Diseases, 18(1):104 2023. DOI: 10.1186/s13023-023-02717-2. PMID: 37143135.(guideline or consensus)Limitations: Pediatric consensus framework; heterogeneous literature, framework still to be tested prospectively. Read: full text (PMC10157984).Declared conflicts of interest: The authors declare no conflict of interest