Hi Friend

If you're living with hypermobile Ehlers-Danlos Syndrome (hEDS), you may have noticed that it rarely comes alone. Many of us experience a constellation of other conditions that can feel overwhelming and confusing. This newsletter aims to shed light on why these associated conditions matter and how understanding them can improve your care and quality of life.

I will be doing a free live webinar tomorrow on this topic, link is below.

hEDS is a connective tissue disorder characterised by joint hypermobility, skin that may be unusually soft or stretchy, and a range of other symptoms. Connective tissue is found throughout the body, which explains why hEDS can affect multiple organ systems. The genetic changes that cause hEDS haven't yet been identified, but the condition clearly runs in families and affects how collagen and other proteins are structured or function.

1. They can significantly impact your quality of life

While joint hypermobility might be the most visible aspect of hEDS, associated conditions like dysautonomia, mast cell disorders, or gastrointestinal issues can be equally or more debilitating. Recognising and treating these conditions can dramatically improve how you feel day to day.

2. Early recognition leads to better management

Many associated conditions are treatable or manageable when identified early. For example, recognising Postural Orthostatic Tachycardia Syndrome (POTS) early means you can start management strategies like increased fluid and salt intake, compression garments, and appropriate medications before symptoms become severe.

3. They help explain your symptoms

Have you been told your symptoms are "all in your head" or struggled to get doctors to take you seriously? Understanding the full spectrum of hEDS-associated conditions validates your experience and provides a framework for your healthcare team to offer appropriate care.

4. They inform your overall treatment approach

Treatment for one condition may affect another. For instance, certain physiotherapy approaches for joint hypermobility might need to be modified if you also have POTS. A comprehensive understanding helps your medical team coordinate care effectively.

What it is: A form of dysautonomia where your heart rate increases excessively when moving from lying down to standing up.

Common symptoms: Dizziness, lightheadedness, fainting, rapid heartbeat, fatigue, brain fog, nausea, shakiness.

Why it happens with hEDS: The laxity in blood vessel walls (they're made of connective tissue too) can cause blood to pool in the legs when standing, leading to inadequate blood flow to the brain and compensatory increases in heart rate.

Management: Increased fluid and salt intake, compression garments, specific exercises, medications like beta-blockers or fludrocortisone, avoiding triggers.

What it is: A condition where mast cells (immune cells that release histamine and other chemicals) become overactive and release their contents inappropriately.

Common symptoms: Flushing, itching, hives, gastrointestinal symptoms (nausea, diarrhea, abdominal pain), headaches, brain fog, anxiety, anaphylaxis-like reactions.

Why it happens with hEDS: The link isn't fully understood, but research suggests that structural abnormalities in connective tissue may trigger mast cell activation. Additionally, mast cells produce substances that can affect connective tissue.

Management: Antihistamines (H1 and H2 blockers), mast cell stabilisers like cromolyn sodium, avoiding triggers, low-histamine diet for some patients.

What it includes: Irritable bowel syndrome (IBS), gastroparesis (delayed stomach emptying), dysmotility, reflux, chronic constipation or diarrhea.

Common symptoms: Abdominal pain, bloating, nausea, early satiety (feeling full quickly), constipation, diarrhea, reflux.

Why it happens with hEDS: The gastrointestinal tract contains connective tissue in its walls, and dysfunction of the autonomic nervous system (which controls gut motility) is common in hEDS.

Management: Dietary modifications, medications to manage symptoms (prokinetics, antispasmodics), treating underlying MCAS if present, probiotics, physiotherapy for pelvic floor dysfunction.

What it includes: Widespread musculoskeletal pain, fibromyalgia, neuropathic pain, headaches and migraines.

Why it happens with hEDS: Joint instability leads to overworking muscles and frequent minor injuries. Central sensitisation (where the nervous system becomes hypersensitive to pain signals) is also common.

Management: Physiotherapy focused on stability and strengthening, pain management programs, medications (when appropriate), pacing and energy conservation, psychological approaches like CBT for pain.

Why they're associated: While living with a chronic condition can understandably affect mental health, research suggests there may also be biological links. Dysautonomia can cause physical symptoms that mimic anxiety, and chronic inflammation may contribute to depression.

Management: It's crucial to treat both the physical and psychological aspects. This might include therapy, medication when appropriate, treating underlying dysautonomia, peer support, and mindfulness-based approaches.

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Stay Well

Dr Ahmed