HEDS and Waking Daily With Flu-Like Symptoms, What Causes These Issues?

zebrathemiddleaged
Jan 27
3 min read

Updated: Apr 12

Waking up every day feeling these flu-like symptoms can be exhausting and confusing, especially when there is no clear infection or illness causing it. For people with Hypermobile Ehlers-Danlos Syndrome (HEDS), this experience is unfortunately common. We wake up and often have to fight through these symptoms to be able to function through our day. Understanding why these symptoms occur and what triggers them can help manage daily life better and improve overall well-being.

Why Do People with HEDS Wake Up Feeling Flu-Like Symptoms?

HEDS is systemic in nature, meaning it can affect many body systems simultaneously, which may explain the daily flu-like feelings.

Several factors contribute to waking up with flu-like symptoms in HEDS patients:

1. Chronic Inflammation

Even without infection, chronic low-grade inflammation is common in HEDS. The body’s immune system may be in a constant state of mild activation due to tissue damage from joint instability and micro-injuries. This ongoing inflammation can cause fatigue, muscle aches, and a general feeling of being unwell, similar to flu symptoms.

2. Autonomic Nervous System Dysfunction

Many people with HEDS experience dysautonomia, a condition where the autonomic nervous system does not regulate bodily functions properly. This can lead to symptoms like dizziness, rapid heartbeat, and fatigue. Dysautonomia can also cause poor temperature regulation and muscle weakness, contributing to the sensation of flu-like illness.

3. Sleep Disturbances

Pain and discomfort from joint instability often disrupt sleep quality. Poor sleep can weaken the immune system and increase feelings of fatigue and malaise. When the body does not rest well, waking up feeling tired and achy is common.

4. Mast Cell Activation Syndrome (MCAS)

Mast cells play a role in allergic reactions and immune responses. In some HEDS patients, mast cells become overactive, releasing chemicals that cause inflammation and symptoms like flushing, itching, and fatigue. This overactivation can mimic flu symptoms without an actual infection.

5. Muscle Fatigue and Weakness

Due to joint instability, muscles often work harder to stabilize the body. This extra effort can lead to muscle fatigue and soreness, especially after a night of rest when muscles have not been actively moving. This soreness can feel like the body is fighting off an illness.

While there is no cure for HEDS, managing symptoms can improve quality of life. Here are some practical steps:

Prioritize Good Sleep Hygiene

Create a comfortable sleep environment with supportive mattresses and pillows.
Establish a regular sleep schedule.
Avoid stimulants like caffeine close to bedtime.
Use relaxation techniques such as deep breathing or gentle stretching before sleep.

Manage Pain and Inflammation

Use prescribed pain medications or anti-inflammatory treatments as directed by a healthcare provider.
Apply heat or cold packs to sore joints and muscles.
Engage in low-impact exercises like swimming or yoga to strengthen muscles without stressing joints.

Address Autonomic Dysfunction

Stay hydrated and maintain electrolyte balance.
Avoid sudden changes in posture to reduce dizziness.
Work with a specialist to explore medications or therapies that support autonomic function.

Monitor and Treat Mast Cell Activation

Identify and avoid known triggers such as certain foods, temperature changes, or stress.
Use antihistamines or mast cell stabilizers if recommended by a doctor.

Seek Support and Education

Join support groups for people with HEDS to share experiences and coping strategies.
Work with a multidisciplinary healthcare team including rheumatologists, physical therapists, and pain specialists.

If flu-like symptoms persist daily or worsen, it is important to consult a healthcare professional. They can rule out infections or other conditions that may mimic HEDS symptoms. Regular monitoring helps adjust treatment plans and address new issues promptly.

Living with HEDS and Daily Flu-Like Symptoms

Understanding the reasons behind waking up with flu-like symptoms can empower people with HEDS to take control of their health. While these symptoms can be challenging, targeted management strategies can reduce their impact. Listening to your body, seeking appropriate care, and making lifestyle adjustments are key steps toward feeling better each day.