Chronic Fatigue Syndrome in Hypermobility Ehlers-Danlos Syndrome

Chronic fatigue syndrome (CFS) is a complex condition that causes persistent, overwhelming tiredness not relieved by rest. When combined with hypermobile Ehlers-Danlos syndrome (hEDS), a connective tissue disorder characterized by joint hypermobility and other systemic symptoms, fatigue can become even more challenging to manage. Understanding how CFS manifests in people with hEDS is essential for improving quality of life and tailoring effective care strategies.

Hypermobility Ehlers-Danlos Syndrome

Beyond joint issues, hEDS can affect the skin, blood vessels, and internal organs. Fatigue is a common complaint, but it is often misunderstood or overlooked. The fatigue experienced by individuals with hEDS can be severe and persistent, sometimes meeting the criteria for chronic fatigue syndrome. It is not uncommon to hear people with hEDS say "I'm as tired when I awaken as I am when I go to sleep."

How Chronic Fatigue Syndrome Relates to hEDS

Chronic fatigue syndrome, also known as myalgic encephalomyelitis (ME/CFS), involves extreme fatigue lasting more than six months, along with other symptoms such as cognitive difficulties, unrefreshing sleep, and post-exertional malaise (worsening symptoms after physical or mental activity).

In people with hEDS, several factors may contribute to the development or worsening of CFS symptoms:

• Autonomic Dysfunction: Many with hEDS experience dysautonomia, a malfunction of the autonomic nervous system. This can cause heart rate and blood pressure irregularities, leading to fatigue and dizziness.

• Pain and Sleep Disruption: Chronic pain from joint instability and soft tissue injury can interfere with sleep quality, increasing fatigue.

• Muscle Weakness and Deconditioning: Joint instability often leads to reduced physical activity, which can cause muscle weakness and worsen fatigue.

• Inflammation and Immune System Changes: Some research suggests immune system irregularities in both hEDS and CFS, potentially linking the two conditions.

  
  

Understanding these overlapping factors helps explain why fatigue in hEDS is often more than just feeling tired.

Recognizing Symptoms of CFS in hEDS Patients

Fatigue in hEDS can sometimes be dismissed as a normal part of living with a chronic condition. However, when fatigue becomes severe and persistent, it may indicate CFS. Key symptoms to watch for include:

• Fatigue lasting more than six months that does not improve with rest

• Post-exertional malaise, where symptoms worsen after physical or mental activity

• Difficulty concentrating or "brain fog"

• Unrefreshing or poor-quality sleep

• Muscle and joint pain beyond usual hEDS discomfort

• Headaches and sensitivity to light or sound

• Orthostatic intolerance, feeling dizzy or faint when standing

  
  

If these symptoms are present, it is important to discuss them with a healthcare provider familiar with both hEDS and CFS.

Managing Chronic Fatigue Syndrome in hEDS

Managing fatigue in hEDS requires a comprehensive approach that addresses both conditions. Here are some strategies that can help:

Pacing and Energy Management

People with hEDS and CFS benefit from pacing activities to avoid overexertion. This means balancing rest and activity to prevent symptom flare-ups. Using tools like activity diaries or wearable trackers can help monitor energy levels and identify triggers.

Physical Therapy and Gentle Exercise

Tailored physical therapy focusing on strengthening muscles around hypermobile joints can improve stability and reduce pain. Low-impact exercises such as swimming or yoga may help maintain fitness without worsening fatigue.

Sleep Hygiene

Improving sleep quality is crucial. Establishing a regular sleep schedule, creating a restful environment, and avoiding stimulants before bedtime can support better rest. It is important to have a quiet dark sleep environment without interruptions while sleeping. Also establish a "go to bed time" and a "get up time" and stick to the schedule daily.

Addressing Autonomic Symptoms

Treating dysautonomia symptoms, such as through increased fluid and salt intake or medications prescribed by a specialist, can reduce fatigue related to blood pressure and heart rate issues.

Pain Management

Effective pain control through medication, physical therapy, or alternative therapies like acupuncture can improve overall energy levels by reducing the burden of chronic pain.

Psychological Support

Living with chronic illness can affect mental health. Counseling or support groups can provide coping strategies and emotional support. Depression and anxiety are also common in hEDS if you are experiencing either or both discuss medication options with your doctor.

When to Seek Professional Help

If fatigue significantly impacts daily life or worsens despite self-care, consulting healthcare professionals is essential. Specialists in rheumatology, neurology, or chronic fatigue can offer diagnostic testing and personalized treatment plans.

Early recognition and intervention improve outcomes and help prevent further decline in function.

Living Well with hEDS and Chronic Fatigue Syndrome

While managing chronic fatigue syndrome alongside hypermobility Ehlers-Danlos syndrome can be challenging, many people find ways to improve their quality of life. Building a support network, advocating for appropriate care, and learning to listen to the body’s signals are key steps.

Understanding the connection between these conditions empowers individuals to seek the right help and make informed decisions about their health. Its important to know when you need to rest especially after you have exerted yourself. You must listen to your body and allow time to recover when needed.