Some time ago, we attempted an alternate understanding when approaching particular treatment-resistant depressed and anxious patients frequenting our psychiatry clinic. Their symptoms extended beyond the psychological, into a seemingly peculiar but predictable somatic constellation. For example; they were unusually sensitive even to small doses of serotonergic, dopaminergic and noradrenergic agents, and often reacted paradoxically, contrary to the intended effects of these interventions.
Suffering from jaw clenching, muscle tension, autonomic instabilities typical of postural orthostatic tachycardia syndrome, gastrointestinal issues, and frequent vitamin or mineral deficiencies, among others, gave the impression of unfortunate individuals with many distinct diagnoses. Given that simple, elegant explanations are often the truth, these complex clusters of symptoms likely required a new conceptual framework.
These patients reported a lifetime of health issues and seeing many specialists, yet standard medical tests were often normal. We suspected an issue with the connective tissue infrastructure and began assessing collagen integrity and connective tissue disorders. For many patients, the missing link seemed to be a problem with structural proteins like collagen, elastin or fibrillin, leading to a diagnosis of a connective tissue disorder such as Ehlers-Danlos syndrome or collagen dysfunction. Although it may be easy to say one has a collagen disorder, keep in mind it may be a symptom of some other issue like an aboroption issue indirectly affecting things like availability of particular amino acids. By addressing the root cause of compromised connective tissue, we found these patients could experience significant improvements in mood, anxiety, pain, fatigue, and function.
Collagen disorders often go undiagnosed for long periods, especially in children and adolescents, leading to experiences of “pain gaslighting” where a person’s symptoms and suffering are frequently dismissed or minimized by others. Living with untreated chronic health issues over time results in self-doubt, anxiety, depression and physical harm. Receiving a diagnosis comes as both relief and a grief for lost time and unmet needs spanning years or even decades. Rebuilding trust in oneself and establishing healthy relationships with doctors and community supports is a long process that requires education, lifestyle changes, trauma-informed mental healthcare, and the integration of mind and body.
Proteins like collagen provide structure and support to connective tissues. When compromised, it can lead to seemingly unrelated symptoms affecting many systems. These “structural protein disorders” or “structural protein dysfunction” are hard to diagnose but may underlie chronic health conditions.
Collagen is a well-known structural protein, but issues with other proteins like elastin or fibrillin can also cause problems. Disorders of structural proteins are often called connective tissue disorders. They can include conditions like Ehlers-Danlos syndrome, Marfan syndrome, and osteogenesis imperfecta.
However, even in the absence of a defined genetic disorder, many people experience collagen or structural protein issues that contribute to health problems like joint pain, gut issues, fatigue, and skin problems. Furthermore, these structural issues cause significant issues with water and sodium handling and storage.
The symptoms of collagen disorders are diverse yet interrelated.
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Chronic pain that moves around the body. This pain is frequently dismissed by doctors and clinicians, leading to frustration, self-doubt, and distrust in your own experiences. Living with constant pain for a long time can alter your perception and reaction to pain.
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Joint hypermobility or being “double-jointed;” Joints move beyond the normal range, which increases the risk of injury and micro-traumas. This can start in childhood with activities requiring flexibility like dance, gymnastics, or cheerleading. Patients with hypermobility often report seeing many doctors and having many tests with “nothing positive.” A holistic view of a collagen disorder as the underlying issue can provide an explanation for various symptoms.
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Digestive and urinary issues like acid reflux, constipation, irritable bowel syndrome, pelvic floor dysfunction or bladder problems. Collagen supports the lining and tissues in your gut, pelvic floor, and bladder. Transglutaminase, an additive in processed foods, can interfere with gut health. When we refer to collagen, we are likely discussing structural proteins. Issues may relate to problems with “cross-linking” found in tissue transglutaminase. Normal tissue transglutaminase in our bodies can be significantly interfered with by food additives like added transglutaminase to make foods more formed, chewy, and hydrated. This may have direct or indirect effects on tissue transglutaminase and gut health.
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Fatigue and Sleep Issues: Collagen provides structural integrity to tissues including the airway. When compromised, it can lead to respiratory problems during sleep like sleep apnea or snoring as the airway collapses, resulting in unrefreshing sleep or chronic insomnia. Lack of airway support and chronic health issues also commonly lead to fatigue and sleep disturbances. Difficulty breathing or clearing waste from the brain during sleep causes non restorative rest and daytime tiredness. Pain from collagen disorders or POTS makes it difficult to fall or stay asleep, often waking those affected throughout the night.
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In those with dysautonomia like POTS, lying flat can trigger symptoms that further fragment sleep. Heart palpitations, dizziness, anxiety and adrenaline rushes are common when blood flow shifts away from the brain upon reclining. Using elevated pillows or bed wedges helps alleviate this for some by keeping the upper body slightly raised while sleeping.
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The combination of pain, discomfort from an unstable airway, and dysautonomia during sleep frequently leads to chronic fatigue, brain fog, and impaired daytime functioning. Optimizing sleep quality and duration is essential to wellbeing and health in those with collagen disorders, yet often challenging to achieve without proper diagnosis and treatment. Correcting sleep positioning, improving respiratory health, reducing pain, and addressing any underlying sleep disorders or health conditions can all help reestablish restorative rest over time with the support of medical professionals.
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Mental health issues. Living with chronic pain and health problems can contribute to anxiety, depression, PTSD, and other conditions. The brain processes emotional and physical pain similarly.
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Skin and wound problems. Easy bruising, slow wound healing, skin hyperextensibility or rashes are common. Collagen gives skin elasticity, firmness, and helps with cell regeneration.
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Often heavy menstrual periods and iron absorption issues leading to iron deficiency anemia
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Higher risk of endometriosis and pelvic pain
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Easy bruising, poor wound healing, and trouble with scarring.
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Postural Orthostatic Tachycardia Syndrome (POTS) which causes lightheadedness, dizziness, rapid heartbeat, shortness of breath, chest pain, fatigue and other symptoms upon standing. This is due to decreased blood flow and dysregulation of the autonomic nervous system.
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Anxiety and depression which frequently develop from living with constant pain, health issues that lack explanation and impaired physical functioning.
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bladder and pelvic organ prolapse. Collagen and connective tissue support pelvic structure and stability.
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Early onset varicose veins and hemorrhoids. Collagen and elastin provide integrity to blood vessels.
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Ruptured tendons or ligaments. Tendons and ligaments attach muscles to bones and require collagen to provide strength and flexibility.
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Skin issues like sensitivities and unexplained rashes. Collagen gives skin its structure, thickness and durability.
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Scoliosis or joint contractures. Collagen is needed for proper growth, development and mobility of the spine and joints.
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Dental issues like tooth decay. Saliva requires collagen and proper pH to prevent cavities. Collagen disorders may lead to dry mouth or low saliva production.
Hydration!
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Drink at least half your body weight in ounces of water per day to stay properly hydrated. For example, if you weigh 150 lbs, aim for 75 ounces or 9-10 eight ounce glasses of water. Increase to 0.75 to 1 ounce of your body weight in ounces if very active or symptomatic. (Some EDS patients need more than this).
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For every 60 ounces of water, consume one electrolyte packet (one serving equals roughly 500mg sodium. Try someting like Liquid IV or dripdrop). The body does not interact with non-electrically active water.
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Manage symptoms related to dysautonomia through increased salt and water intake, compression garments, medication as needed and physical therapy or exercise with position changes.
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For those with low blood pressure or POTS, you may need more water or sodium, consult your physician. Start slowly and monitor your blood pressure and symptoms with any changes.
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Keep water and your choice of electrolyte powder, tablets or rehydration solution with you for convenience and to avoid dehydration/electrolyte depletion throughout the day.
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Keep an eye out for excess sweating, heat exposure, caffeine or alcohol which can worsen dehydration and electrolyte imbalance.
Follow an anti-inflammatory diet low in inflammatory foods. Eat a balanced and nutritious diet with enough protein, Vitamin D, B vitamins and nutrients which help support collagen health. Consider iron supplementation as low iron levels are often correlated.
Consider collagen supplements to provide building blocks for connective tissue repair. Look for a reputable hydrolyzed collagen peptide brand.
Get adequate sleep nightly using inclined cushions, mattress, bed risers, or wedge pillows to elevate the head of your bed. This can enhance circulation and ease breathing issues. This can be a life saver!
Find knowledgeable doctors, especially those experienced diagnosing and treating dysautonomia or connective tissue disorders. Get second opinions if needed while advocating for yourself.
Connect with others who share similar chronic health issues. Support groups provide validation, guidance, empathy and help combat feeling alone in facing health challenges.
Practice self-care focusing on restorative activities that mitigate stress. Make time for hobbies and relationships that bring you joy. Your health and wellbeing depend on maintaining balance during stressful
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Gentle movement boosts collagen while avoiding injury. Adequate sleep, stress management and addressing mental health issues are also key.
While more research is needed, recognizing collagen health as an underlying cause of chronic health issues may help identify previously undiagnosed collagen disorders and provide relief. Be your own health advocate by finding practitioners to explore your symptoms with an open and curious mind. Collagen disorders may explain various functional health conditions. With proper management, people living with collagen dysfunction can go on to live full and meaningful lives by preventing symptom flare-ups.
