Why standing up feels harder in summer for people with HSD, hEDS and EDS… and POTS

For many people living with Hypermobile Ehlers-Danlos Syndrome (hEDS), other types of Ehlers-Danlos Syndrome (EDS), or Hypermobility Spectrum Disorders (HSD), Postural Orthostatic Tachycardia Syndrome (POTS) and other forms of dysautonomia can be just as disabling as joint pain, subluxations, or chronic fatigue.

October is Dysautonomia Awareness Month worldwide, but here in Australia, summer starts on the 1st of December. As the temperature climbs, getting prepared becomes essential. With the right tools, awareness, and support, you can head into the warmer months feeling more confident, informed, and able to manage your symptoms, instead of feeling controlled by them.

This article unpacks what dysautonomia and POTS really means, why it’s so common in people with hypermobility, how summer increases symptoms of the condition, and what management strategies can help to reclaim stability and quality of your life.

What is Dysautonomia and what is POTS?

Postural Orthostatic Tachycardia Syndrome (POTS) is a specific type of dysautonomia, and for many people living with POTS, summer or hot weather can be especially challenging. This is because heat affects the autonomic nervous system and blood circulation, making symptoms more noticeable or harder to manage [2][5].

Dysautonomia (pronounced dis-oughta-know-me-uh), also called autonomic dysfunction, is a complex and often under-recognised group of conditions that affect the autonomic nervous system (ANS). The ANS is the body’s automatic control system — it regulates vital functions you don’t have to think about, such as heart rate, blood pressure, digestion, temperature control, sweating, and bladder function.

For people with EDS, hEDS, or HSD, dysautonomia is increasingly recognised as part of the broader picture of connective-tissue fragility and neurovascular dysregulation. Getting a diagnosis can be difficult, with many people waiting years or even decades for proper recognition. Research also shows that up to 83% of individuals with POTS were previously misdiagnosed with psychological conditions before receiving an accurate diagnosis [6][7].

According to the Ehlers-Danlos Society, Dysautonomia International and The POTS FOUNDATION, common signs of dysautonomia include:

• Tachycardia (fast heart rate)
• Hypotension (low blood pressure)
• Dizziness or light-headedness or feeling like you’re going to faint
• ⁠Palpitations (a racing, fluttering or pounding heartbeat)
• Fatigue and /or Brain fog
• Gastrointestinal issues and dysmotility (such as nausea, reflux, diahorrea or constipation)
• Temperature or sweating irregularities
• Disturbed bladder function
• Sleep problems
• Headaches
• Blurred vision
• Heat intolerance
• Exercise intolerance
• Cold or discoloured hands

POTS: The Most Recognised Form of Dysautonomia

Among the various forms of dysautonomia, POTS is the most frequently seen in people with Hypermobility, hEDS and HSD [8]. POTS is diagnosed when:

• The heart rate increases by ≥ 30 beats per minute (≥ 40 bpm in adolescents) within 10 minutes of standing, without a significant drop in blood pressure; and
• Symptoms such as light-headedness, palpitations, weakness, tremor, fatigue, or blurred vision worsen on standing [5][6][9].

For some, even short periods of upright activity can trigger dizziness, nausea, and overwhelming exhaustion. For a more in-depth outline of POTS, it’s causes, diagnosis and management see out upcoming article “POTS Symptoms, Causes and Treatment: What You Need to Know.”

Why Do People with Hypermobility Develop Dysautonomia?

Research suggests multiple overlapping mechanisms contribute to dysautonomia in hypermobility disorders [2][10][11][12] :

• Connective tissue laxity in blood vessels leads may lead to excessive distensibility and to venous pooling, where blood sinks into the lower body instead of returning efficiently to the heart.
• Increased levels of autonomic nervous system dysregulation: altered sympathetic “fight- flight behaviours” at rest, dulled vascular reactivity, and impaired vasoconstriction (tightening of the veins)  all of which can lower effective circulating volume and destabilise circulation, especially when sitting and standing upright [10].
• Reduced blood pressure, blood volume and altered autonomic nerve regulation can make it harder to maintain stable circulation when upright.
• Deconditioning (loss of muscle and cardiovascular tone due to inactivity or illness) further worsens orthostatic symptoms.
• Mast cell activation (autoimmune and post-viral syndromes), inflammatory factors, and craniocervical instability (hypermobile neck joints) may also play roles in some individuals.

This complex mix helps explain why hypermobile individuals often describe feeling “lightheaded for no reason,” “faint on hot days,” or “wiped out after a shower.”

POTS in Hypermobility-Management Strategies

While there is no single cure, symptom management is highly effective when personalised.

 1. Lifestyle and Non-Medication based measures

• Hydration and salt: Aim for 2–3 L of fluid per day and increase salt or use electrolyte replacements (if safe, and as medically advised). Electrolytes like sodium, potassium, and chloride help regulate the body’s fluid balance. Sodium plays the biggest role because it allows the body to hold on to water,  water naturally follows sodium. When sodium intake increases, the body retains more fluid, helping to expand blood volume.
• Use compression garments (waist-high preferred) to reduce venous pooling.
• Prioritise regular sleep and paced activity.
• Monitor your heart rate with a smart watch and in-phone HR app- to review the strenuousness of your activities and how well you are sleeping.
• Compression garments: Waist-high or abdominal compression helps reduce veinous pooling, in the lower limbs and compression wear aids this blood return to the heart and brain. There are many different types of compression clothing and brands, including compressive shorts, stockings, leggings, abdominal binders, socks and full body suits.
• Smaller, more frequent meals: Large, high-carbohydrate meals can worsen symptoms as after we eat blood is sent to the stomach for digestion.
• Temperature management: Avoid overheating; use cooling aids when necessary.
• Sitting down to do long tasks and especially whilst showering.
• Head-of-bed elevation: Raising the head slightly overnight helps regulate blood volume.

2. Find and Avoid Triggers

• In summer the main triggers are they additional heat, humidity and not being well-hydrated.
• TRIGGERS CAN INCLUDE :
  • Prolonged standing, heat/hot environments (hot showers-steam rooms), alcohol, caffeine, stress, illness or infection, your menstrual cycle, surgery, physical labour or exercise, medication side effects, prolonged rest from illness, pain or dehydration.

3. Safe, Supervised Exercising for POTS and HSD/hEDS

• Exercise at any time can be challenging with POTS, and it’s often harder in summer. Work under the guidance of a health professional who understands POTS and hypermobility. You may find it easier to start with reclined or seated exercise (such as recumbent strengthening, swimming, or cycling).
• The pool is your friend. Hydrotherapy and swimming help return blood to your core and heart, and the cool water can support better blood flow to the brain. Being in water is a great support for joints, ligaments and muscles that are under more pressure with hypermobility. Though be aware of how hot the pool is you are exercising in as overly warm environs are also a trigger for POTS.
• Include strength work for your legs and core to support venous return (blood return) and improve overall stability.
• Avoid overexertion. Listen to your body and stop before symptoms escalate.
• Keeping up your fitness and muscle strength is important, as deconditioning can make POTS and dysautonomia symptoms worse over time.

4. Pacing and Energy Management

Pacing helps individuals balance activity and rest, avoiding symptom “crashes.”
Using an activity planning diary, heart-rate monitoring, rest breaks, and planned recovery time allows gradual gains.

5. Medications (Prescribed by Specialists)

If lifestyle strategies aren’t enough, medications may help, these may include Fludrocortisone to expand blood volume; Midodrine to improve vascular tone; or Beta blockers or ivabradine for heart-rate control in selected cases.

A clinician (usually a cardiologist or specialist GP) experienced in autonomic disorders should tailor these to individual needs and monitor responses. Medication should complement, not replace, physical and behavioural management.

6. Multidisciplinary and Supportive Care

Because dysautonomia affects multiple systems, coordinated care often includes:

• Primary care from your GP for overall management and monitoring.
• Cardiology or Autonomic specialists for diagnostic confirmation.
• Physiotherapists and Exercise Physiologists for tailored reconditioning programs.
• Dietitians and Psychologists for holistic symptom support.

Looking Ahead: Beat the Heat, Not Your Body

• Living with POTS and dysautonomia can be challenging year-round, but summer often amplifies symptoms especially for people with HSD, hEDS, and EDS. Understanding why this happens empowers individuals to take proactive steps that protect their health, conserve energy, and improve day-to-day function.
• While dysautonomia is complex, it is also manageable. With personalised strategies from hydration and salt to compression, pacing, temperature control, and guided reconditioning many people experience meaningful improvements in stability and quality of life. Support from knowledgeable clinicians, physiotherapists, and specialists can make this journey clearer and less overwhelming.
• You’re not alone in navigating POTS. With the right network of health professionals, a holistic plan, progress is not only possible, but achievable.

References

[1] Daylor, V., et al., Defining the Clinical Complexity of hEDS and HSD: A Global Survey of Diagnostic Challenge, Comorbidities, and Unmet Needs. 2025.
[2] Ruiz Maya, T., et al., Dysautonomia in hypermobile Ehlers–Danlos syndrome and hypermobility spectrum disorders is associated with exercise intolerance and cardiac atrophy. American journal of medical genetics. Part A, 2021. 185(12): p. 3754-3761.
[3] Darakjian, A.A., et al., Similarities and differences in self-reported symptoms and comorbidities between hypermobile Ehlers–Danlos syndrome and hypermobility spectrum disorders. Rheumatology advances in practice, 2024. 8(4): p. rkae134.
[4] Fairweather, D., et al., High overlap in patients diagnosed with hypermobile Ehlers-Danlos syndrome or hypermobile spectrum disorders with fibromyalgia and 40 self-reported symptoms and comorbidities. Frontiers in medicine, 2023. 10: p. 1096180.
[5] Sheldon, R.S., et al., 2015 Heart Rhythm Society Expert Consensus Statement on the Diagnosis and Treatment of Postural Tachycardia Syndrome, Inappropriate Sinus Tachycardia, and Vasovagal Syncope. Heart rhythm, 2015. 12(6): p. e41-e63.
[6] George, A. and B. Winters, Postural Orthostatic Tachycardia Syndrome (POTS): A Frequently Missed Diagnosis. Journal for nurse practitioners, 2023. 19(2): p. 104439.
[7] Seeley, M.C., et al., Symptom burden, quality of life, and diagnostic journey of people with postural orthostatic tachycardia syndrome, Australia, 2021–24: a descriptive patient registry data study. Medical Journal of Australia, 2025. 223(3): p. 159-160.
[8] Blitshteyn, S., Dysautonomia: a common comorbidity of systemic disease. Immunologic research, 2025. 73(1): p. 105-105.
[9] Medicine, J.H. Postural orthostatic tachycardia syndrome (POTS). 2025 [cited 2025 September 28]; Available from: https://www.hopkinsmedicine.org/health/conditions-and-diseases/postural-orthostatic-tachycardia-syndrome-pots?
[10] Christopher, M., et al., Variant connective tissue (joint hypermobility) and dysautonomia are associated with multimorbidity at the intersection between physical and psychological health. American journal of medical genetics. Part C, Seminars in medical genetics, 2021. 187(4).
[11] Novak, P., et al., Hypermobile Ehlers-Danlos Syndrome: Cerebrovascular, Autonomic and Neuropathic Features. American journal of medicine open, 2025. 14: p. 100111-100111.
[12] The Ehlers-Danlos Society. Dysautonomia. 2025 [cited 2024 January 15]; Available from: https://www.ehlers-danlos.com/dysautonomia/#1695801375597-030d9c21-1584.