Low Dose Naltrexone (LDN)
Low‑dose naltrexone (LDN) is a low dose of naltrexone that is thought to briefly block opioid receptors to boost natural endorphins and support immune balance.
Hypermobile Ehlers-Danlos syndrome (hEDS) is a heritable connective tissue disorder marked by joint hypermobility and instability in addition to chronic musculoskeletal and neuropathic pain. The disease is diagnosed when strict clinical criteria are met, due to the lack of a definitive genetic test. Symptoms are widespread and fluctuating, making diagnosis difficult and medication management a challenge. hEDS patients frequently experience shared symptoms with mast cell activation syndrome (MCAS) and postural orthostatic tachycardia syndrome (POTS) because these conditions each affect systems that are unavoidably intertwined throughout the body. Lifetime management requires adaptability and dedication to lifestyle changes that limit physical injury and promote emotional wellbeing. Medications for hEDS may vary based on individual symptom presentation, which is known to shift over time. Low dose naltrexone (LDN) as supportive care can combat persisting pain, inflammation, and fatigue.
Our hEDS Medication Offerings
About Hypermobile Ehlers-Danlos Syndrome (hEDS)
Symptoms
Hypermobile Ehlers-Danlos Syndrome (hEDS) symptoms are often misdiagnosed or attributed to other conditions such as fibromyalgia or chronic fatigue syndrome. These multisystem symptoms are thought to severely impair activities of daily life:
Chronic pain
Multiple pain presentations are possible with hEDS. Muscular pain around or in between joints can feel like a deep ache and stiffness and may also include osteoarthritic discomfort. Neuropathic pain characterized by burning or tingling sensations is often localized around certain joints. Visceral pain can also be present from the GI tract or urogynecological areas.
Proprioception problems
Patients with hEDS struggle with sensing their bodies’ position and joint location in space, increasing balance issues. This problem can make patients more clumsy and prone to injury due to challenges with precise movement.
Joint instability and hypermobility
Joints demonstrate a range of motion beyond expected limits. Acute soft tissue injuries are common and can last for days. Chronic soft tissue damage can lead to joint degeneration over time. Movement changes to accommodate for instability can further inhibit physical functioning.
Soft skin
Stretchy skin that is more susceptible to bruising and scarring.
GI symptoms
Reflux and stomach lining inflammation are common, with delayed gastric emptying. Patients at risk for developing irritable bowel syndrome.
Autonomic dysfunction
Autonomic functions are unconscious processes the body is in charge of, like blood pressure, heart rate, digestion, and respiration. When these autonomic functions malfunction it causes dysautonomia (postural orthostatic tachycardia syndrome or POTS). This can look like heart palpitation and orthostatic intolerance.
Mental health challenges
Anxiety and depression are prevalent in chronic, debilitating pain conditions where patients experience diminished quality of life.
Other symptoms
Bleeding problems, headache, fatigue, oral issues, pulmonary difficulty, sexual dysfunction, and pelvic floor issues may also be present. Other more extreme cardiovascular complications can arise as well.
Management
A huge component of living with a chronic condition like hEDS is committing to non-pharmacologic measures. Since off-label medications may provide mixed improvement, these tools are critical for improving quality of life.
Exercises that involve joint stabilization training are beneficial, assuming patients do not overexert or overstretch during their activities. Guided physical therapy or occupational therapy can provide patient specific guardrails adapted for joint instability. The most important aspects of hEDS related physical activity are that joints are protected, balance is emphasized, and the build is gradual. Controlled strengthening via low-impact, closed chain exercises like biking are often recommended and may improve exercise intolerance and fatigue.
While the physical toll of hEDS may take the spotlight, the emotional weight of living with chronic pain and disability cannot be ignored. The journey to a hEDS diagnosis can be extremely difficult, as patients are commonly misdiagnosed, or worse, dismissed. Once a diagnosis is established, the relief of finding an answer is unmistakable. Living with an unpredictable disease known for affecting multiple systems without warning requires a great deal of adaptability and resilience. Many patients seek cognitive behavioral therapy (CBT) to overcome psychological barriers to successful hEDS management and find it offers a deeper level of support than exercise alone.
Therapies
Depending on the complexities of hEDS related pain, many standard analgesics fall short of alleviating patient discomfort and providing meaningful relief. Due to the unique nature of the syndrome, knowledgeable providers are extremely important for coordinating care.
There are no FDA-approved pharmacotherapy options for hEDS, meaning all drugs used to support patients are considered off-label therapies. Belmar Pharmacy compounds low dose naltrexone (LDN), a prominent medication for chronic conditions involving pain, autoimmunity, and autonomic dysfunction.
For hEDS, low dose naltrexone (LDN) is a therapeutic option prescribed to complement patients’ existing individualized care plan. Typically compounded at doses between 1 mg and 5 mg daily, LDN serves as an immune modulator and anti-inflammatory agent. LDN therapy can upregulate endorphins and improve quality of life.
Patients with chronic diseases like hEDS can start LDN therapy for symptom management. LDN can diminish day-to-day neuropathic and widespread pain, limit fatigue, improve sleep, and positively influence cognition. Its transient opioid receptor blockade and antagonistic effect on toll-like receptor 4 (TLR4) has been shown to impact the immune system and downstream inflammation.
Hemodynamic medications like beta blockers can be used for hEDS if autonomic dysfunction is present because they affect heart rate and blood pressure. Additional pain management therapy is necessary in most patient cases, as well as motility agents to help improve gastrointestinal problems.
Commonly Asked Questions About hEDS
Hypermobile Ehlers-Danlos syndrome (hEDS) is a heritable connective tissue disorder marked by joint hypermobility and instability, Most patients also experience chronic musculoskeletal and neuropathic pain. Because it affects many body systems and lacks a single diagnostic test, hEDS is often misdiagnosed or overlooked. Symptoms are widespread and fluctuating, making medication management a challenge for patients and providers.
A hEDS diagnosis involves lax connective tissue, which affects blood vessels. In neuropathic POTS, nerve damage causes blood supply issues to the core and legs, making it hard for patients to maintain proper blood pressure against the pull of gravity. When patients stand their blood vessels don’t constrict the way they should and blood pools in their lower extremities and abdomen. This venous pooling can be exacerbated by weak blood vessel support common in hEDS.
Mast Cell Activation Syndrome (MCAS) is a disease where mast cells become hyper-reactive and unstable. hEDS is a connective tissue disease, and mast cells reside in connective tissue. It is possible for hEDS patients to experience overlapping symptoms with MCAS such as GI problems, flushing, and dermatologic sensitivities. But one condition does not cause another, nor are MCAS related symptoms always present in hEDS.
