Why Am I So Tired? Understanding Fatigue in hEDS and HSD
Fatigue in hEDS and HSD is far more than simply feeling tired. Learn why it happens, how it affects the body, and practical, evidence-based strategies to help manage your energy and improve daily life.
Claire Feldkamp
8/4/2026
Fatigue is one of the most common yet least understood symptoms experienced by people with hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorders (HSD). Unlike ordinary tiredness, it is often persistent, unpredictable and disproportionate to activity, affecting physical function, cognitive performance and quality of life. Although frequently overshadowed by pain and joint instability, fatigue is a complex, multifactorial symptom influenced by musculoskeletal, autonomic, neurological and psychological factors. Understanding why fatigue occurs is essential for developing realistic management strategies that support long-term function and wellbeing.
Fatigue is not just being tired
Fatigue in the context of connective tissue disorders is not simply tiredness that resolves with a good night's sleep. It has been described as an overwhelming sense of physical and mental exhaustion. It can be recent, prolonged or chronic, and it is consistently reported as one of the most disabling features of hEDS and HSD (The Ehlers-Danlos Society, 2026a).
One of the main differences between fatigue and tiredness is that people who are simply tired usually feel better after a nap or a good night's sleep and are often able to "push through". In contrast, fatigue is typically unrelieved by rest and is commonly associated with feelings of heaviness and weakness. Many people with HSD and hEDS may sleep or nap during the day but still wake feeling exhausted. Like many other aspects of connective tissue disorders, fatigue exists on a spectrum. Some people experience only mild fatigue, while others are profoundly affected. It can also fluctuate over time, varying from day to day, season to season and during different stages of life. Major life events, hormonal changes and menopause can all have a significant impact on fatigue levels.
Survey data from a large cohort of adults with Ehlers-Danlos syndrome found that fatigue was clinically significant in the vast majority of respondents and closely correlated with pain severity and reduced daily function (Voermans et al., 2010). Later research in people with joint hypermobility syndrome and EDS-hypermobility type found similarly high rates, with around four out of five participants reporting significant fatigue (Krahe, Adams and Nicholson, 2018). Fatigue and pain remain two of the greatest barriers to maintaining regular movement and exercise.
No single cause
One of the greatest challenges in managing fatigue is that it rarely has a single cause. Hakim et al. (2017) highlight that chronic fatigue in hEDS overlaps considerably with chronic fatigue syndrome. Before assuming fatigue is related solely to connective tissue disorders, it is important to exclude other medical causes such as anaemia, thyroid dysfunction and infection. Once these have been ruled out, attention can turn to the factors more specific to HSD and hEDS, many of which interact and reinforce one another.
Poor sleep quality is extremely common. Pain and joint instability frequently disrupt sleep architecture, reducing the amount of restorative deep sleep. Sleep may also be disturbed by associated conditions such as dysautonomia, mast cell activation syndrome, bladder dysfunction or bowel symptoms (The Ehlers-Danlos Society, 2026b).
Postural strain and inefficient breathing patterns can further compound this cycle by disrupting sleep and contributing to the feeling of waking unrefreshed (Russek, n.d.a).
Muscle weakness also appears to play a greater role than is often appreciated. Voermans and colleagues found a clear relationship between fatigue severity and muscle weakness, independent of pain (Voermans et al., 2011). This suggests that fatigue is not simply the result of inactivity or low mood, but also reflects the increased physiological demands placed on hypermobile muscles as they work harder to stabilise lax joints and compensate for reduced proprioception. Many people describe feeling as though they are constantly having to "hold themselves together". Bracing strategies, although often necessary for stability, consume considerable energy and may further disrupt efficient breathing.
Deconditioning is another important contributor. Chronic pain and joint instability make activity more difficult and more energetically expensive, leading many people to reduce their activity levels. Unfortunately, this loss of strength and cardiovascular fitness then makes everyday tasks feel even more exhausting, creating a self-perpetuating cycle (The Ehlers-Danlos Society, 2026a). Celletti et al. (2013) also demonstrated that fear of movement (kinesiophobia) was more strongly associated with fatigue than pain intensity, suggesting that fatigue itself may be a major driver of activity avoidance.
We should also consider the impact of neurodivergence. Current evidence suggests that between 47–69% of people with hEDS or HSD may also be neurodivergent (Quadt et al., 2026). Living with heightened sensory processing, executive functioning challenges or autistic burnout can significantly increase cognitive and emotional fatigue, making day-to-day life even more demanding.
Dysautonomia
A significant proportion of people with hEDS and HSD also have autonomic dysfunction, most commonly Postural Orthostatic Tachycardia Syndrome (POTS). When the autonomic nervous system struggles to balance sympathetic and parasympathetic activity, the body may remain in a persistent low-grade fight-or-flight state. This can interfere with falling asleep, staying asleep and feeling refreshed, even after an adequate amount of sleep (The Ehlers-Danlos Society, 2026b). This is one reason why breathwork and nervous system regulation, rather than exercise prescription alone, can be valuable starting points for people whose fatigue has a significant autonomic component.
Why we need a co-ordinated plan
Given the number of body systems involved, it is unsurprising that Castori and colleagues (2012) advocate a multidisciplinary approach to managing pain and fatigue in joint hypermobility syndrome. Rather than relying on a single intervention, they recommend coordinated input from physiotherapy, pain management, psychological support and, where appropriate, sleep and autonomic specialists.
For many people, management begins with pacing. This involves identifying an individual's energy envelope and distributing activity throughout the day, rather than alternating between periods of overexertion and enforced rest, often referred to as the "boom and bust" cycle (The Ehlers-Danlos Society, 2026a). Movement remains essential because prolonged inactivity accelerates deconditioning, but exercise should be graded carefully and progressed gradually under the guidance of a therapist familiar with hypermobility. Alongside this, attention to sleep hygiene, relaxation and breathwork can all make meaningful contributions when used together.
Balancing activity and rest
Balancing activity and rest is crucial for managing fatigue. Some practical strategies include:
Prioritise tasks. Focus on the most important jobs each day and, where possible, delegate or postpone less essential tasks. Many people find that limiting themselves to just a few meaningful activities each day helps them stay within their energy envelope.
Plan ahead. Planning creates space around essential activities and helps balance the things you have to do with the things you want to do. Good planning and prioritisation go hand in hand.
Set realistic goals. It is easy to become overenthusiastic on a good day, but overdoing things often leads to several days of increased fatigue. Breaking larger jobs into manageable chunks and allowing time for recovery usually proves more sustainable.
Schedule regular rest breaks. Even a twenty-minute period of quiet rest can help restore some energy. Rest does not necessarily mean sleeping; reading, listening to music, meditation or simply lying quietly can all help.
Use relaxation techniques. Breathwork, mindfulness and guided body scans can encourage the nervous system to shift from a sympathetic "fight or flight" state towards a parasympathetic "rest and digest" response.
Listen to your body. Learn to recognise your own early warning signs, whether that is reduced Heart Rate Variability (HRV), increasing pain, worsening IBS symptoms, headaches or simply feeling overwhelmed. Pushing through fatigue often worsens symptoms rather than improving them.
Keep moving gently. Appropriate movement can actually improve energy levels. Gentle mobility exercises, breathing exercises, walking or low-level strengthening may help reduce stiffness, improve circulation and increase body awareness without overwhelming the system.
It is important to remember that fatigue associated with connective tissue disorders should never be dismissed as laziness, simple deconditioning or a psychological problem. Fatigue is a genuine, multifactorial symptom with roots in altered collagen-related muscle function, autonomic regulation, sleep physiology and the cumulative cost of managing pain and instability every day. Recognising that complexity, rather than searching for a single explanation, allows management strategies to be tailored to the individual and ultimately leads to better long-term outcomes.
References
Castori, M., Morlino, S., Celletti, C., Ghibellini, G., Bruschini, M., Grammatico, P., Blundo, C. and Camerota, F., 2012. Management of pain and fatigue in the joint hypermobility syndrome (a.k.a. Ehlers-Danlos syndrome, hypermobility type): principles and proposal for a multidisciplinary approach. American Journal of Medical Genetics Part A, 158A(8), pp.2055-2070.
Celletti, C., Castori, M., La Torre, G. and Camerota, F., 2013. Evaluation of kinesiophobia and its correlations with pain and fatigue in joint hypermobility syndrome/Ehlers-Danlos syndrome hypermobility type. BioMed Research International, 2013, 580460.
Hakim, A., De Wandele, I., O'Callaghan, C., Pocinki, A. and Rowe, P., 2017. Chronic fatigue in Ehlers–Danlos syndrome—hypermobile type. American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 175(1), pp.175-180.
Krahe, A.M., Adams, R.D. and Nicholson, L.L., 2018. Features that exacerbate fatigue severity in joint hypermobility syndrome/Ehlers–Danlos syndrome – hypermobility type. Disability and Rehabilitation, 40(17), pp.1989-1996.
Quadt L, Savage G, Bond R, Davies KA, Critchley HD, Eccles JA. Likely neurodivergence and variant connective tissue in patients with chronic pain/chronic fatigue: a case-control study. J Psychiatr Res. 2026;197:125-132. doi:10.1016/j.jpsychires.2026.02.036
Russek, L.N., n.d.a. Breathing, sleeping and posture. [Presentation]. The Ehlers-Danlos Society Virtual Symposium Collection. Available at: https://www.ehlers-danlos.com/wp-content/uploads/2021/06/VSC_Leslie-Russek_Breathing_Sleeping_and_Posture.pdf [Accessed 28 July 2026].
Russek, L.N., n.d.b. Hypermobility spectrum disorders (HSD) and hypermobile Ehlers-Danlos syndrome (hEDS). [online] Clarkson University and Canton-Potsdam Hospital. Available at: https://webspace.clarkson.edu/~lrussek/docs/hypermobility/RussekHSDoverview.pdf [Accessed 28 July 2026].
The Ehlers-Danlos Society, 2026a. Fatigue in EDS and HSD. [online] Available at: https://www.ehlers-danlos.com/fatigue/ [Accessed 28 July 2026].
The Ehlers-Danlos Society, 2026b. Sleep problems in EDS and HSD. [online] Available at: https://www.ehlers-danlos.com/sleep/ [Accessed 28 July 2026].
Voermans, N.C., Knoop, H., van de Kamp, N., Hamel, B.C., Bleijenberg, G. and van Engelen, B.G., 2010. Fatigue is a frequent and clinically relevant problem in Ehlers-Danlos syndrome. Seminars in Arthritis and Rheumatism, 40(3), pp.267-274.
Voermans, N.C., Knoop, H., Bleijenberg, G. and van Engelen, B.G., 2011. Fatigue is associated with muscle weakness in Ehlers-Danlos syndrome: an explorative study. Physiotherapy, 97(2), pp.170-174.
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