Free EDS Self-Assessment
Take this free 8-step assessment to find out. Get a detailed clinical report you can bring to your doctor.
Uses the official 2017 hEDS diagnostic criteria plus validated pain & fatigue scales
PDF summary including BPI pain scores & FSS fatigue scores for your doctor
Built-in flare tracker saves locally โ no account needed
Takes about 8 minutes. No credit card required.
The Beighton Score measures joint hypermobility on a 9-point scale. Check each box that applies to you.
People with EDS often have these features. Check any that sound like you.
Skin stretch test: Pinch the skin on the back of your hand. Can you pull it up more than 1-2 inches? That's hyperextensible skin.
Wrist sign: Wrap your thumb and pinky around your opposite wrist. Do they overlap? That means you have long, slender fingers.
Thumb sign: Tuck your thumb inside your fist. Does it stick out past the edge of your palm? Another sign of long fingers.
Skin feel: Does your skin feel noticeably softer, smoother, or more velvety than other people's? People might comment on it.
The Brief Pain Inventory (BPI) measures how bad your pain has been. Rate each item from 0 (no pain) to 10 (worst imaginable).
How much has pain interfered with these areas in the last 24 hours? Rate 0 (no interference) to 10 (complete interference).
For each statement, rate how much you agree: 1 = strongly disagree, 7 = strongly agree. Think about the past week.
EDS often comes with other conditions. Check any symptoms you experience.
Based on your answers, here's what we found:
A physician-formatted PDF of your results โ Beighton score, BPI pain severity, FSS fatigue score, and specialist referral recommendations. Free. No strings.
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If this sounds familiar...
You just got a diagnosis that took years and dozens of doctors to reach โ and they sent you home with nothing.
No treatment plan. No specialist list. No idea what to do next. Just a name for why you've been suffering.
Meanwhile the pain is real. The fatigue is real. The brain fog, the POTS flares, the joints that slip โ all of it is real. And you're still on your own.
The problem isn't you. It's that most doctors have never been taught how to manage hEDS.
But an interventional pain physician who treats hEDS every day has โ and he wrote everything down.
Physician-Authored Treatment Guide
By Gavin Nixon, D.O. • Interventional Pain Medicine • Regenexx-Certified
What's inside โ and what it does for you
Walk into every appointment prepared โ not dismissed
Word-for-word scripts for your PCP, pain physician, cardiologist, and rheumatologist. Know exactly what to say, what scores to cite, and how to get referrals โ not a prescription for anxiety.
Finally understand your POTS โ and what to do about it
Home testing protocol, salt and compression strategies, stellate ganglion block explained, and exactly what to ask the cardiologist who has never heard of dysautonomia.
Stop the MCAS reactions that no one explained to you
The low-histamine diet, the H1 + H2 antihistamine protocol, the foods that are quietly triggering your worst days โ and how to trial it at home before your allergist appointment.
Know which treatments to ask for โ and which ones make hEDS worse
PRP, LDN, SI joint injections, RFA, stellate ganglion block โ explained in plain language so you can have an informed conversation. Plus: fluoroquinolones, aggressive stretching, and cervical manipulation โ what to refuse and why.
Get a map of your pain โ by body region
Neck, back, shoulder, ribs, hip, knee, hands โ what's actually causing it, what imaging to ask for, and what a specialist can do. Stop hearing "nothing's wrong" when you know something is.
Break the push-crash cycle for good
Heart rate-based pacing, the energy envelope, flare kit, and a step-by-step first-24-hours protocol so your next bad day doesn't become a lost month.
Written by a physician who treats hEDS daily. Gavin Nixon, D.O. is a board-certified interventional pain physician and the only Regenexx-certified orthobiologic provider in Alaska. This is the guide he wishes every new patient arrived with.
Regular price: $97
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This guide represents physician-authored clinical content across 13 sections โ POTS protocols, MCAS management, pain by body region, the Doctor Appointment Toolkit, and more. At $67, it costs less than a single specialist copay and gives you the framework to make every appointment count.
"I wish I had this when I was first diagnosed. Would have saved me YEARS of trial and error."
- Sarah M., hEDS patient
"The circadian rhythm section alone was worth 100x the price. Finally sleeping through the night!"
- Jessica L., POTS & hEDS
"Best $67 I've ever spent. Actually has actionable advice, not just 'talk to your doctor.'"
- Mike R., hypermobility spectrum disorder
Join thousands of others managing their EDS with confidence.
Get Instant Access for $67 โThank you for your purchase. The full hEDS Treatment Guide is available below. Bookmark this page to return anytime.
A comprehensive framework for managing Hypermobile Ehlers-Danlos Syndrome
15 sections โ clinical treatment guide plus resources and appointment toolkit
There is currently no genetic test that can diagnose hEDS. This is not a gap in testing technology โ it is a reflection of the current state of the science. The gene or genes responsible for hEDS have not yet been identified. The landmark HEDGE Study, which sequenced DNA from over 1,000 hEDS patients, confirmed in 2024 that no single gene explains the condition. hEDS remains a clinical diagnosis based on the 2017 international criteria โ exactly what the MyEDSTest assessment is designed to screen for.
Even though hEDS has no genetic test, genetic testing is still critically important for people with suspected hEDS. The reason: there are other connective tissue disorders that look like hEDS but have identified genetic mutations โ and some of them are life-threatening. Testing is how you rule them out.
The most dangerous EDS subtype. Characterized by spontaneous rupture of arteries and hollow organs. Can cause sudden death. Many vEDS patients have relatively mild skin and joint findings โ making it easy to miss. If you have any family history of unexplained early death, aortic dissection, or arterial rupture, genetic testing to rule out vEDS is essential.
Affects the aorta, eyes, and skeleton. Associated with aortic aneurysm. Often presents with hypermobility, tall stature, and long limbs. Requires cardiac surveillance if confirmed. Treatable with medication to slow aortic dilation.
An aggressive aortic disorder that can look like Marfan syndrome. High risk of aortic dissection at smaller aortic sizes than Marfan syndrome. May present with joint hypermobility, easy bruising, and bifid uvula. Requires urgent cardiac management if diagnosed.
Presents with significant skin fragility, wide atrophic scars, and joint hypermobility. More severe than hEDS in terms of tissue fragility. Genetic confirmation allows for appropriate surgical precautions and family counseling.
Analyzes 15 genes associated with all known genetic EDS subtypes โ including vascular, classical, kyphoscoliotic, arthrochalasia, and others. Ordered by a physician, saliva collection kit mailed to your home. Does not test for hEDS (no gene known) but rules out all other EDS types. CAP-accredited, CLIA-certified laboratory.
invitae.com โ EDS PanelA broader panel covering 92 genes across a wide range of heritable connective tissue disorders โ including EDS subtypes, Marfan syndrome, Loeys-Dietz, skeletal dysplasias, and more. Appropriate for atypical presentations or when a broader differential needs to be worked through.
invitae.com โ Connective Tissue PanelGeneDx is one of the most established rare disease genetic testing laboratories. Their heritable connective tissue panel is widely used in academic and specialty settings. As of 2024, insurance billing is not accepted for this panel โ self-pay or institutional billing only. Often ordered through a genetics clinic or geneticist.
genedx.com โ HDCT PanelAll of these tests require a physician order. You cannot order them directly as a patient. Here is how to access them:
If your genetic panel comes back negative โ no pathogenic variants found โ this does not mean you don't have a connective tissue disorder. It means you don't have one of the known genetic forms. A negative panel in someone who clinically meets hEDS criteria is expected and normal. It supports the diagnosis of hEDS (which requires ruling out other genetic CTDs) and rules out the more dangerous subtypes. This is a good outcome.
POTS is very common in hEDS. When you stand up, your body normally tightens blood vessels quickly so blood doesn't pool in your legs. In hEDS, connective tissue is looser โ including the walls of blood vessels โ so blood pools when you stand. Your heart speeds up to try to compensate. This causes dizziness, brain fog, racing heart, and fatigue that gets worse when upright.
You can do a simple home screening test called the NASA Lean Test using a smartwatch, Fitbit, or any pulse oximeter:
Ask your primary care doctor for a referral to cardiology or neurology for a tilt-table test โ the gold standard for diagnosing POTS. When you call, mention you have hEDS or suspected hEDS and want to be evaluated for dysautonomia/POTS.
General strategies discussed in the medical literature. Not a substitute for care with a cardiologist. Discuss with your doctor before starting.
Many POTS patients benefit from 2โ3 liters of water and 3,000โ5,000mg sodium daily. Salt tablets (OTC) make this easier. Check with your doctor first โ not appropriate for everyone.
20โ30 mmHg compression stockings reduce blood pooling. Waist-high is more effective than knee-high. Put them on before getting out of bed.
Start with rowing machines, recumbent bikes, or swimming. Gradually build upright tolerance over months. One of the best long-term treatments.
The stellate ganglion is a bundle of nerves in your neck that controls part of the sympathetic ("fight-or-flight") nervous system. In POTS, the sympathetic nervous system is often overactive. A stellate ganglion block (SGB) is an injection performed by an interventional pain physician that temporarily quiets this overactive system.
Research โ including military studies on PTSD โ shows SGB can significantly reduce sympathetic hyperactivity. In POTS and hEDS patients, it may help with racing heart, anxiety, and the constant feeling of being "on edge." Results typically last several months to over a year.
An interventional pain physician or anesthesiologist who performs fluoroscopy-guided or ultrasound-guided neck injections. Mention you are interested in SGB for dysautonomia/POTS.
Mast cells are immune cells found throughout your body. In MCAS, they release histamine and other chemicals too easily โ causing flushing, hives, gut problems, brain fog, and severe reactions to foods, smells, or medications. MCAS is very common in hEDS because mast cells are embedded in connective tissue.
Histamine is found in high amounts in aged, fermented, and processed foods. Reducing these foods can significantly reduce MCAS symptoms.
Tip: Fresh is best. Histamine rises as food ages. Cook fresh and eat promptly.
A simple first step is a trial of over-the-counter antihistamines targeting both H1 and H2 receptors. Significant symptom improvement supports a histamine/mast cell component to your condition.
Or Cetirizine (Zyrtec) 10mg once daily. Xyzal is the more potent version. Take at bedtime. Blocks H1 histamine receptors responsible for flushing, itching, and allergy-type reactions.
Blocks H2 receptors in the gut and on mast cells. Combined with H1 blocker, this dual approach is standard in MCAS management. Take with food.
A natural flavonoid and mast cell stabilizer โ helps prevent mast cells from releasing histamine. Also has antioxidant and anti-inflammatory effects. Especially useful if MCAS is a component.
Typical dose: 500โ1,000mg twice daily with food. Use quercetin phytosome or combine with bromelain for better absorption.
Curcumin blocks several inflammatory pathways (including NF-kB) that drive chronic pain and inflammation. Well-studied in joint pain and inflammatory conditions.
Typical dose: 500โ1,500mg curcumin extract daily. Must be taken with black pepper (piperine) or in liposomal form to absorb properly. Standard turmeric powder absorbs poorly.
EPA and DHA reduce inflammatory signaling throughout the body. Especially useful for joint pain, brain fog, and cardiovascular health. One of the best-studied supplements in existence.
Typical dose: 2โ4g combined EPA+DHA daily. Choose triglyceride-form fish oil from a reputable brand that tests for heavy metals. Take with a fatty meal.
Raw cacao is rich in flavonoids (especially epicatechin) that support blood vessel health, reduce inflammation, and have mood-enhancing properties. Also contains magnesium โ deficient in most hEDS patients. Avoid if histamine-sensitive.
How to use: 1โ2 tablespoons of cold-pressed cacao powder in smoothies or warm drinks daily. Look for ceremonial grade or cold-pressed raw cacao.
A naturally occurring fatty acid that works on mast cells and nerve cells to reduce chronic pain and inflammation. Particularly useful for nerve pain, fibromyalgia-type symptoms, and widespread hEDS pain. Well-tolerated and non-psychoactive.
Typical dose: 600โ1,200mg daily. Use micronized or ultramicronized form (PEA-m or PEA-um). May take 4โ8 weeks to see full benefit.
Magnesium deficiency worsens muscle pain, headaches, anxiety, and poor sleep โ all common in hEDS. Magnesium glycinate is the most absorbable and gentlest form on the gut. Also supports sleep when taken at night.
Typical dose: 200โ400mg elemental magnesium at bedtime. Avoid magnesium oxide โ poorly absorbed and causes diarrhea.
Critical for immune function, muscle strength, pain modulation, and mood. Deficiency is almost universal in Alaska and in patients with chronic fatigue. K2 (MK-7 form) directs calcium to bones rather than arteries.
Typical dose: 2,000โ5,000 IU D3 daily with 100mcg K2 (MK-7). Check your blood level (25-OH Vitamin D) before dosing โ aim for 50โ80 ng/mL.
All supplements recommended in this guide are available through Dr. Nixon's Fullscript dispensary โ a professional-grade supplement platform used by physicians. Products are pharmaceutical-quality, third-party tested, and dispensed through a verified practitioner account. You'll receive a discount off retail pricing.
You'll receive a discount through Dr. Nixon's dispensary. All products are shipped directly to you.
Disclosure: Dr. Nixon earns a practitioner margin on purchases made through his Fullscript dispensary. This does not affect the price you pay โ Fullscript provides a discount off retail to patients of registered practitioners. All supplement recommendations are based solely on clinical evidence and the author's professional judgment.
In hEDS, pain has patterns. The same structures fail in predictable ways. Understanding what's likely causing your pain helps you ask for the right workup. All of these require evaluation by a physician for proper diagnosis and treatment planning.
Pain that starts in the neck and radiates to the back of the head, temples, or behind the eyes. Often worse with screen use, prolonged sitting, or wrong sleep position. Caused by instability in the upper cervical (C1โC3) joints.
Sharp, shooting, or electric pain at the base of the skull radiating up and over the head. Caused by irritation of the occipital nerves where they pass through tight, lax neck muscles and connective tissue. Very treatable.
The SI joints connect your spine to your pelvis. In hEDS, these joints are hypermobile and unstable, causing pain in the lower back, buttock, and upper leg. Often misdiagnosed as disc herniation. Worsens with prolonged sitting, standing on one leg, or rolling over in bed.
Small joints on the back of the spine that bear excess load in hEDS. Deep, aching low back pain that is worse in the morning, after staying in one position, or with back extension (bending backward). Usually no leg pain.
Disc degeneration, bulges, and herniations occur at higher rates in hEDS. Lax spinal ligaments allow abnormal segmental motion that accelerates disc wear. Lumbar disc problems cause lower back pain that may radiate down the leg (sciatica). Cervical disc problems cause neck pain with arm pain or numbness. A significant disc problem will show on MRI โ but many hEDS patients have findings that look alarming and are actually manageable conservatively. Do not rush to surgery.
Loose ligaments allow the shoulder ball to shift slightly, straining the rotator cuff muscles that work overtime to stabilize it. Clicking, pain reaching overhead, or a sense the shoulder "slips." Dislocations and subluxations are common.
Rib pain is one of the most overlooked and misdiagnosed symptoms in hEDS. Ribs attach to the spine in the back (costovertebral joints) and to the sternum or cartilage in the front (costochondral joints). In hEDS, the ligaments holding these joints in place are lax, allowing ribs to shift โ called a rib subluxation. This causes sharp, catching pain with deep breathing, rolling over, sneezing, coughing, reaching overhead, or sleeping on one side. It is often mistaken for heart or lung problems, pleurisy, or intercostal neuralgia.
Patients often describe feeling or hearing a "pop" followed by intense local pain that resolves when the rib moves back. The pain is usually very localized โ you can point to exactly where it hurts โ and worsens with pressure on the affected area.
Rib pain in hEDS is usually musculoskeletal. However, always rule out cardiac, pulmonary, or aortic causes with your physician first โ especially if the pain is new, severe, accompanied by shortness of breath, radiates down the arm, or is associated with swelling or bruising without injury.
Chiropractic care in hEDS must be approached carefully. High-velocity, forceful manipulation (the classic "crack") is generally not appropriate for hypermobile patients โ it can worsen instability. However, chiropractors who specialize in low-force, instrument-assisted, or soft-tissue techniques can be very helpful for rib subluxations specifically, because gently repositioning a subluxed rib is one of the most effective treatments available.
Hypermobility causes repetitive micro-trauma that tears the hip labrum over time. Groin pain, a clicking or snapping sensation, and pain with prolonged sitting or activity. "Snapping hip" (tendons flicking over bony prominences) is also common.
The kneecap tracks off-center due to weak and lax supporting structures, causing pain around or behind the kneecap with stairs, squatting, sitting for long periods, or running. Knees may also hyperextend (bend backward), causing chronic strain.
Finger and thumb joints that hyperextend, causing pain with gripping, typing, writing, or carrying. Fingers may swell, ache, or feel clumsy. Thumbs are especially vulnerable at the CMC joint at the base.
Numbness, tingling, or "pins and needles" in the hands and arms is very common in hEDS and is often attributed to a single cause when there are actually several distinct syndromes involved. Getting the right diagnosis determines the treatment.
Carpal Tunnel Syndrome (median nerve at the wrist)
The most common cause. The median nerve is compressed at the wrist. In hEDS, lax wrist ligaments combined with repetitive activity (typing, phone use) make this especially common. Classic pattern: numbness and tingling in the thumb, index, and middle fingers. Worse at night and with prolonged wrist flexion. Confirmed by nerve conduction study (NCS/EMG).
Treatment: Night splints, activity modification, corticosteroid injection into the carpal tunnel. Surgical release is highly effective if conservative measures fail โ discuss hEDS healing considerations with your surgeon.
Cervicobrachial Syndrome (neck-to-arm nerve pain)
Numbness that originates in the cervical spine and radiates down the arm. Caused by nerve root compression from disc bulges, facet overgrowth, or cervical instability โ all of which are more common in hEDS. Each nerve root has a predictable territory: C6 โ thumb/index; C7 โ middle finger; C8 โ ring/little finger. Symptoms often also involve the arm and shoulder, and change with neck position โ distinguishing it from carpal tunnel.
Treatment: Cervical spine MRI to identify the level. Cervical epidural steroid injections or selective nerve root blocks are very effective for relief. Cervical stabilization PT addresses the underlying instability long-term.
Thoracic Outlet Syndrome (brachial plexus compression)
Less recognized but frequently missed. The brachial plexus is compressed between the collarbone and first rib. In hEDS, postural changes, drooping shoulders, and hypermobile ribs make this more common. Symptoms: diffuse arm heaviness, fatigue, and whole-hand or forearm numbness โ worse with overhead activity or carrying loads.
Treatment: Provocative exam tests (Adson's, EAST test) can suggest diagnosis. PT focused on posture, rib mobility, and scalene muscle lengthening is first-line. Refer to vascular or thoracic specialist for confirmation.
Not all physical therapists understand hypermobility. A PT who doesn't know hEDS may hurt you by pushing you to stretch more (you're already too flexible) or loading you too aggressively. You need a PT who understands stability over flexibility.
A structured, progressive exercise program developed specifically for hEDS and hypermobility spectrum disorder. Available as a book and through certified PTs. Search "Muldowney Protocol hEDS" โ widely regarded as one of the best-structured approaches to hypermobility rehab.
EDS Society Directory: Visit ehlers-danlos.com/healthcare-professionals-directory to find EDS-knowledgeable PTs and physicians near you.
Telehealth PT: Several hypermobility-specialist PTs offer online programs. Search "hypermobility PT telehealth." Jeannie Di Bon (Zebra Club) is commonly referenced in the hEDS community for online programs.
Naltrexone is FDA-approved at high doses (50mg) for opioid and alcohol use disorder. At very low doses (1.5โ4.5mg), it has a completely different effect โ it briefly blocks opioid receptors, which causes the body to increase its own endorphin production and reduce neuroinflammation. This is Low Dose Naltrexone, or LDN.
LDN has been studied in fibromyalgia, Crohn's disease, MS, and other chronic inflammatory conditions with promising results. Many hEDS patients and physicians report significant improvement in pain, fatigue, and brain fog.
Search ldnresearchtrust.org for a prescriber directory. You can also ask your primary care doctor or pain physician โ LDN is increasingly prescribed for chronic pain. Telehealth physicians are often willing to prescribe for established chronic pain conditions.
Morning sunlight activates POMC (pro-opiomelanocortin) โ a master hormone precursor that breaks down into alpha-MSH, ACTH, and beta-endorphin, your body's natural pain-killing and mood-regulating molecules. This is one reason sunlight has such a profound effect on pain, mood, and energy.
Red light (630โ670nm) and near-infrared (810โ850nm) penetrate tissue and are absorbed by mitochondria, stimulating ATP production, reducing inflammation, and promoting tissue repair.
Apply to painful joints for 10โ15 minutes. Look for panels with both 660nm (red) and 850nm (NIR) wavelengths. Consistent use shows significant pain reduction in many patients.
Red light does not suppress melatonin like blue light does. Use a red light panel for 10โ15 minutes in the evening in place of bright overhead lights after sunset.
Device note: Joovv, Mito Red Light, and similar brands. Look for at least 50 mW/cmยฒ irradiance at 6 inches. Avoid cheap panels that don't specify wavelength output.
BPC-157 is a synthetic peptide derived from a protein found in gastric juice. Extensively studied in animal models for accelerating healing of tendons, ligaments, muscles, and gut lining. Also appears to reduce pain sensitization and support dopamine and serotonin pathways.
Of the three peptides listed here, BPC-157 is most relevant to hEDS due to its specific effects on connective tissue healing. Most human experience comes from clinical observation and case reports rather than large randomized trials.
A tripeptide (Glu-Asp-Arg) derived from the pineal gland. Research suggests it may support neuroregeneration, improve cognitive function, regulate sleep-wake cycles, and have antioxidant effects in brain tissue. Works partly by modulating circadian rhythm gene expression.
Typical use: 5โ10mg in cycles of 10โ20 days, as a nasal spray or sublingual drop. Most research is from Russian biogerontology literature โ limited English-language RCT data.
A tetrapeptide (Ala-Glu-Asp-Gly) developed by Professor Vladimir Khavinson. Research suggests it activates telomerase (which protects chromosome ends), regulates circadian rhythm through the melatonin pathway, and has antioxidant and immune-regulating effects.
Most useful for hEDS patients where sleep disruption and fatigue are primary concerns, under physician supervision as part of a broader recovery protocol.
On good days, hEDS patients often overdo it โ catching up on everything they couldn't do during the last flare. This leads to a crash: severe fatigue, increased pain, and reduced function that wipes out the progress made. The cycle repeats, often getting worse over time.
Pacing breaks this cycle by staying within your "energy envelope" โ the amount of activity your body can handle without triggering a crash. It's not about doing less forever. It's about doing the right amount consistently so your capacity can gradually grow.
For POTS patients especially, heart rate is a direct measure of how hard your autonomic nervous system is working. Exceeding your aerobic threshold triggers sympathetic overdrive โ fatigue, brain fog, and crashes. Heart rate monitoring gives you objective feedback in real time.
The most commonly used formula for POTS patients: Threshold โ 0.6 ร (220 โ your age)
Example: Age 35 โ 220 โ 35 = 185 โ 0.6 ร 185 = 111 bpm. Try to keep your heart rate below this during all activity.
Think of your daily energy as a battery with a fixed capacity. The goal is to consistently operate at 70โ80% โ never fully depleting, but never fully resting either. This keeps the envelope stable and allows it to slowly grow over time.
Schedule rest before you need it. Build 10โ15 minute horizontal rest breaks into your day proactively โ not after a crash. Pre-activity rest is as important as post-activity rest.
Break tasks into smaller pieces. Instead of cooking a full meal, prep for 10 minutes, sit for 5, cook for 10. The total activity is the same but the HR spike is smaller and recovery is faster.
Keep a simple daily log. Rate your energy (1โ10) morning and evening and note what you did. Patterns emerge over 2โ4 weeks showing which activities most reliably drain you.
Tell the people around you. Energy limitation is invisible. Explaining the push-crash cycle to family, friends, or employers prevents the misunderstanding that you're fine one day and "giving up" the next.
In hEDS, the collagen your body produces is structurally abnormal โ but the quality of collagen you make is still influenced by what you eat. Several nutrients are essential cofactors in collagen synthesis and cross-linking. Being deficient in any of them limits your body's ability to build the best connective tissue it can. Combined with an anti-inflammatory eating pattern, nutrition is one of the highest-leverage lifestyle changes in hEDS.
Vitamin C is required for hydroxylation of proline and lysine โ the step that stabilizes and cross-links collagen fibers. Without adequate Vitamin C, collagen cannot form properly. hEDS patients often need higher amounts due to ongoing tissue repair demands.
Food sources: Bell peppers (highest), kiwi, broccoli, guava. Avoid citrus and strawberries if histamine-sensitive. Supplement: 500โ1,000mg buffered Vitamin C daily in divided doses.
Collagen is made primarily of glycine, proline, and hydroxyproline. Getting adequate protein โ especially from collagen-rich sources โ provides the raw materials your body needs.
Food sources: Bone broth (highest in glycine and proline), skin-on poultry, fish with skin, egg whites, gelatin. Supplement: Hydrolyzed collagen peptides 10โ15g daily combined with Vitamin C โ the combination is synergistic.
Copper activates lysyl oxidase, the enzyme that cross-links collagen and elastin fibers, giving them tensile strength. Copper deficiency directly weakens connective tissue and is frequently overlooked.
Food sources: Beef liver (richest source), oysters, dark chocolate, cashews, lentils. Note: If supplementing zinc, balance with 1โ2mg copper for every 15โ30mg zinc.
Zinc is required for over 300 enzymatic reactions including collagen synthesis and wound healing. Deficiency is common in hEDS and worsens tissue fragility and slow recovery from injury.
Food sources: Beef, oysters, pumpkin seeds, chickpeas. Supplement: 15โ30mg zinc bisglycinate daily with food. Balance with copper (see above).
Gut issues are extremely common in hEDS โ the same lax connective tissue that affects joints also affects the gut lining, increasing intestinal permeability ("leaky gut"), worsening MCAS, and driving IBS-type symptoms. Supporting gut integrity is high-leverage.
A flare is a period of significantly worsened symptoms โ increased pain, fatigue, joint instability, brain fog, MCAS reactions, or POTS symptoms โ that goes beyond your usual baseline. Flares can last hours to weeks. Common triggers include illness, stress, hormonal changes, overexertion, weather changes, and disrupted sleep.
Stop and rest immediately. Do not push through. The sooner you rest, the shorter the flare. Going horizontal takes load off your joints and reduces POTS-mediated stress on your system.
Hydrate with electrolytes. Dehydration worsens every hEDS symptom. Add salt and electrolytes โ not just plain water.
Take your antihistamines if MCAS is involved. Don't wait to see if it passes. Early antihistamine use blunts the mast cell cascade before it escalates.
Eat low-histamine, easy foods. Keep safe, simple options stocked for flares: rice, fresh eggs, cooked fresh chicken, plain crackers, bone broth.
Contact your care team if the flare is prolonged or significantly worse than usual. A flare lasting more than 5โ7 days, or a flare with new or different symptoms, warrants a call to your physician.
"I have hEDS and I'm in a flare. My baseline pain is [X]/10 and it's currently [X]/10. The flare started [X days ago]. My main symptoms are [joint pain / POTS / MCAS reactions]. I've tried rest, hydration, and antihistamines with limited improvement. I don't think this is an emergency but I need guidance on next steps."
Fluoroquinolones carry an FDA Black Box Warning for tendon rupture and peripheral neuropathy. In patients with connective tissue disorders like hEDS, the risk is significantly elevated. These antibiotics inhibit collagen synthesis and can cause tendon damage โ sometimes weeks after the course finishes. If a doctor prescribes a fluoroquinolone for a routine infection, ask whether an alternative (amoxicillin, doxycycline, azithromycin) can be used. In life-threatening infections where fluoroquinolones are the only option, benefit may outweigh risk โ have that conversation with your physician.
NSAIDs can trigger or worsen MCAS reactions by shifting arachidonic acid metabolism toward leukotrienes โ potent mast cell activators. Acetaminophen (Tylenol) is generally better tolerated for pain in MCAS patients. If you need anti-inflammatory effects and NSAIDs worsen your symptoms, ask your physician about COX-2 selective options.
Opioids do not address the underlying instability driving hEDS pain and carry significant long-term risks including opioid-induced hyperalgesia (making pain worse over time) and hormonal disruption. Low dose naltrexone, nerve blocks, RFA, PRP, and stabilization PT address the mechanisms of hEDS pain more directly. If currently on opioids for hEDS, work with your pain physician on a comprehensive plan.
Many hEDS-POTS patients are prescribed benzodiazepines for "anxiety" when the underlying driver is sympathetic overdrive from dysautonomia. Benzos cause muscle relaxation that can worsen joint instability, and create dependence quickly. Treating the POTS addresses the anxiety more effectively.
Forceful "cracking" of the neck is contraindicated in hEDS due to cervical instability and the risk of vertebral artery injury. Always tell any manual therapist you have hEDS before any neck treatment. Low-force techniques are safe; high-velocity thrust is not.
You do not need more flexibility. Stretching hypermobile joints further damages already-lax ligaments and worsens instability. Yoga classes designed for flexibility are generally not appropriate. Restorative yoga is acceptable if you stay within a comfortable range โ never push into end range.
Running, jumping, HIIT, and heavy plyometrics load hypermobile joints without adequate stabilization. These are not permanently off limits โ but they should only be introduced gradually after a period of stabilization work with a qualified PT.
These can be dangerous in hEDS due to cervical instability. Do not use without clearance from a physician who knows your imaging and understands hEDS.
Physicians typically have 15โ20 minutes per appointment. When a patient walks in with 12 symptoms across 6 body systems, a doctor's brain does not have time to form a coherent clinical picture. The appointment ends with a prescription for the loudest symptom and a follow-up in three months. The underlying condition is never addressed.
hEDS is uniquely difficult because it is a multi-system disorder โ but that doesn't mean you have to present it that way. The most effective hEDS patients have learned to do one thing very well: organize their information so the doctor can see the pattern, not just the symptoms.
Your MyEDSTest clinical summary does this for you. It takes your validated screening results โ Beighton score, pain severity, fatigue index, POTS screen, MCAS screen โ and presents them in the clinical language physicians already understand. Hand it to the doctor at the start of the appointment. It immediately signals that you are a prepared, organized patient and frames the conversation before it begins.
Walk into every appointment with exactly three things prepared. Not ten. Three.
Print it or have it on your phone. It presents your Beighton score, BPI pain severity and interference scores, FSS fatigue score, POTS symptom count, and MCAS symptom count in one page. Physicians recognize these instruments. Instead of saying "I have a lot of pain," you can say "my BPI severity mean is 7.2 and interference mean is 6.8" โ that's a clinical statement they can act on.
Write this out before you go. Example: "I'm here today to discuss my hypermobile EDS and get a referral to [specialist] because of [specific symptom]." One goal per visit. If you go in asking about your neck, your knee, your POTS, and your gut on the same day, you'll leave with nothing addressed properly.
A referral. A specific test order. A prescription. A documentation of a finding. Know what you need before you walk in and ask for it directly at the start: "The main thing I need from today is [X]." This prevents the appointment from ending without your actual need being met.
Physicians are trained to think in body systems. When you organize your complaints by system rather than presenting them as a random list, you trigger the pattern-recognition part of a physician's clinical training. You become easier to understand and more credible.
Use this framework when summarizing your history to any new provider:
What to report: Joint hypermobility (Beighton score), subluxations/dislocations by joint, chronic pain locations and character, functional limitations.
"My Beighton score is [X]/9. I have chronic pain in [list regions] rated [X]/10 average severity. I have recurring subluxations in [joints]. My pain significantly interferes with [sleep/work/activity] โ my BPI interference mean is [X]/10."
What to report: POTS symptoms, heart rate on standing (if measured), fainting or near-fainting history, temperature dysregulation.
"I have [X]/8 POTS screening criteria. On home NASA lean testing my heart rate increased [X] bpm on standing. I experience [dizziness / brain fog / palpitations] when upright, relieved by lying down."
What to report: MCAS symptoms, food and chemical triggers, response to antihistamines, any prior allergy testing.
"I have [X]/7 MCAS screening criteria including [flushing / hives / gut reactions / chemical sensitivity]. I had [partial / significant] response to combined H1 and H2 antihistamines over a 6-week trial."
What to report: Brain fog severity and triggers, headache patterns, peripheral neuropathy symptoms, fatigue (FSS score), sleep quality.
"My FSS mean score is [X]/7, which is [above/below] the clinical significance threshold of 4.0. I experience [brain fog / headaches / numbness and tingling] that significantly impacts [daily function / work / driving]."
What to report: IBS-type symptoms, gut motility problems, nausea, food intolerances, reflux.
"I have significant gastrointestinal symptoms including [list]. These are consistent with the gut connective tissue involvement and MCAS component of hEDS. I'd like to understand whether a gastroenterology referral is appropriate."
"I've done a structured self-assessment using the 2017 international hEDS diagnostic criteria and validated instruments. My Beighton Score is [X]/9, my BPI pain severity mean is [X]/10, my FSS fatigue score is [X]/7, and I have [X]/8 POTS screening criteria. I'd like referrals to a rheumatologist or geneticist for formal hEDS evaluation, and a cardiologist for POTS workup. I've prepared a one-page clinical summary if that would be helpful."
"I have suspected or confirmed hEDS โ POTS is present in approximately 40% of hEDS patients. I have [X]/8 POTS symptoms on a validated screening tool, including [dizziness on standing / racing heart / brain fog]. My home NASA lean test showed a heart rate increase of [X] bpm on standing. I'm requesting a formal tilt-table test to evaluate for POTS and guidance on treatment options."
"I have hypermobile EDS with chronic pain primarily in [neck / back / joints โ be specific]. My BPI pain severity average is [X]/10 and interference average is [X]/10. I'm not seeking opioid medications. I'm here to understand my options for injection-based treatments โ specifically [SI joint injections / facet blocks / occipital nerve blocks / RFA]. I'd also like to discuss low dose naltrexone and whether I'm a candidate for orthobiologic treatments like PRP."
"I have [X]/7 MCAS screening criteria, including [flushing / reactions to foods or chemicals / gut symptoms / urticaria]. Over a 6-week trial of combined levocetirizine 5mg and famotidine 20mg twice daily, I had [partial / significant] symptom improvement. I'd like a formal MCAS evaluation including serum tryptase baseline and 24-hour urine N-methylhistamine."
"I'm being evaluated for hypermobile EDS using the 2017 international diagnostic criteria. I have a Beighton score of [X]/9, [X] connective tissue systemic features on Criterion 2, and I've been told I meet Criterion 3 with a family history of hypermobility. I'm not expecting a genetic test โ I understand hEDS doesn't have one yet. I'd like a clinical evaluation to confirm or refine the diagnosis and discuss management."
"I've researched [treatment/test] in the context of hEDS and I believe it may be relevant to my presentation. I understand it may not be your standard protocol, but I'd value your clinical opinion on whether it's appropriate for my specific case. If you feel it's not indicated, can you help me understand the reasoning so I can make the most informed decision possible?"
Hand over your MyEDSTest summary immediately. Before the doctor asks "so what brings you in today" โ hand them the summary and say: "I've prepared a clinical summary to help organize my history. The main thing I need today is [X]." You've just used the first 30 seconds to set the agenda.
Stick to one system per visit whenever possible. If you're at a pain visit, stay on pain. If you're at a cardiology visit, stay on POTS. Trying to address every system in a 15-minute visit guarantees nothing is fully addressed. Book separate follow-ups for separate systems.
Before the doctor leaves, confirm the plan. "Before we finish โ can I confirm what we decided today? You're ordering [test], sending a referral to [specialist], and I should follow up in [timeframe]. Is that correct?" This prevents the common situation where the visit felt productive but nothing actually got ordered.
Check your patient portal within 48 hours. Confirm that referrals were actually sent, lab orders are in the system, and notes accurately reflect what was discussed. Errors in medical records happen frequently โ you are your own best advocate for catching them.
If a doctor dismisses your symptoms, tells you it's anxiety, or says "you look fine" โ you have options. Your response depends on how much you want to preserve the relationship with this provider.
"I appreciate that anxiety can cause some of these symptoms. I want to make sure we've ruled out a connective tissue disorder first โ the pattern of my symptoms across multiple systems is consistent with hEDS. Can we document in my chart that hEDS was considered and your clinical reasoning for ruling it out? I want to be a good partner in my own care."
Asking for documentation creates accountability. Physicians are less likely to dismiss documented concerns without a clear rationale.
"I understand you may not think this is EDS. I respect your clinical judgment. I'd still like a referral to rheumatology for a second opinion โ I want to hear a specialist's perspective before we close the door on this. Is that something you can arrange?"
Seeking a second opinion or finding a new provider is not "doctor shopping" โ it is your right as a patient. Providers who understand complex connective tissue disorders exist. Use the EDS Society healthcare directory at ehlers-danlos.com/healthcare-professionals-directory. Telehealth has made it possible to access EDS-knowledgeable physicians across the country without leaving your home.
hEDS requires a team, not a single physician. The goal is to build a group of providers who each own one piece of your care and communicate with each other. This takes time to assemble โ but once in place, it transforms your experience with the medical system.
Coordinates your care, orders labs, manages referrals, and serves as the central hub. Find one who understands or is willing to learn about hEDS.
Manages pain with injections, nerve blocks, RFA, and orthobiologics. The most impactful specialist for day-to-day hEDS pain management.
Evaluates and manages POTS. Ask specifically for someone who sees dysautonomia patients โ not all cardiologists are familiar with POTS in hEDS.
Manages joint stabilization, strength, and pacing. The most important ongoing provider for functional improvement. See Section 5 for how to find one.
Evaluates and manages MCAS. Not all allergists see MCAS โ ask specifically when booking whether they have experience with mast cell activation.
Provides formal diagnosis and rules out other connective tissue disorders (Marfan syndrome, vEDS). Important for documentation, especially for disability or insurance purposes.
You don't need all of these at once. Start with a primary care physician willing to coordinate, one referral to the specialist most relevant to your dominant symptoms, and one hypermobility-aware PT. Build from there.
This section is your permanent reference. Bookmark it, return to it, and use it to prepare for every specialist visit. All links and resources below have been vetted and curated by the author. This guide is a living document โ resources will be updated as new leaders emerge and new research changes practice.
The hEDS field moves fast and most leading clinicians share education directly on social media โ often before it reaches published literature. These five accounts are vetted, credentialed, and consistently produce high-quality clinical content. Follow all of them.
Board-certified anesthesiologist and integrative pain medicine specialist. Mayo Clinic trained. Host of the Bendy Bodies Podcast โ the world's most listened-to medical podcast about hEDS. 58K+ Instagram followers. She has lived experience with hypermobility and treats patients with hEDS, HSD, and MCAS in her private practice. Her content is physician-level but explained in plain language.
Best for: hEDS diagnosis, MCAS, POTS, treatment options, navigating the medical system
International movement therapist with lived experience of hEDS, MCAS, POTS, and CFS. Creator of the Integral Movement Method (IMM) โ the only peer-reviewed movement therapy system designed specifically for hypermobility. Founder of The Zebra Club app. Author of Hypermobility Without Tears. Endorsed by leading hEDS specialists including Dr. Leslie Russek. 24K+ Instagram followers.
Best for: Safe exercise, movement therapy, daily function with hEDS, stability-first approach
Doctor of Physical Therapy with over 27 years of experience specializing in hypermobility spectrum disorders and hEDS. Based in the Chicago area. Offers online physical therapy and health coaching for hypermobile patients across the country. Her content focuses on the biomechanics of hypermobility โ specifically, why standard PT advice often backfires and what to do instead. 35K+ Instagram followers.
Best for: Physical therapy for hypermobility, why common PT advice fails in hEDS, online PT consultations
The leading nonprofit organization for autonomic nervous system disorders including POTS. Their Instagram and content arm shares physician-reviewed, current information on POTS treatment, new research, and how to find autonomic specialists. Run by a medical advisory board of leading dysautonomia physicians. 50K+ Instagram followers. Their website has the most comprehensive POTS physician directory available.
Best for: POTS education, research updates, finding autonomic specialists, understanding test results
The global governing body for EDS and HSD research, advocacy, and education. Their social media and website are the authoritative source for diagnostic criteria, research updates, and provider directories. Recommended resources on their website are vetted by a medical advisory board of international EDS specialists. When in doubt about any hEDS information you find online, check if the EDS Society has addressed it.
Best for: Official diagnostic criteria, finding EDS-trained providers, research updates, advocacy
Board-certified neurogastroenterologist, Duke-trained, co-founder of EverBetter Medicine. Specializes in the GI complications of hEDS โ gut dysmotility, SIBO, visceral hypersensitivity, IBS, MCAS-related GI symptoms, and the gut-brain connection in dysautonomia. One of the most accessible and prolific physicians in the hEDS space on social media. 201K+ Instagram followers. Featured guest on Bendy Bodies Podcast Episode 153: "Why Do Some GI Problems Hide from Every Test?"
Best for: GI symptoms in hEDS, MCAS gut involvement, SIBO, gut dysmotility, brain-gut connection, digestive health with POTS
Harvard-trained, double board-certified in Pain Medicine and Anesthesiology. Assistant Clinical Professor at Brown University. Director of the Center for Complex Conditions in Pawtucket, RI. One of the most respected hEDS specialists in the world โ Dr. Linda Bluestein's mentor and the physician credited with helping shape modern approaches to EDS pain management. Has appeared on Bendy Bodies Podcast multiple times covering diagnosis, GI pain, and the real-world management of complex hEDS cases. Former Chairman of the EDS International Pain Consortium. Lifetime Achievement Award from the Dysautonomia Support Network. Dr. Chopra does not maintain a large personal social media presence โ his influence is best accessed through his Bendy Bodies episodes and his clinic website.
Best for: EDS pain management, CRPS, complex multi-system cases, surgical risk in hEDS, central sensitization, LDN for chronic pain
The world's #1 medical podcast for hypermobility. Ranked top 2% globally. Weekly episodes with leading specialists covering every aspect of hEDS, POTS, and MCAS. Both patients and clinicians listen. If you are going to listen to one podcast, this is it.
Biweekly episodes featuring leading POTS physicians and patient stories. The first Tuesday of every month covers MCAS. Run by Standing Up to POTS, a patient advocacy organization with a medical advisory board. Excellent complement to Bendy Bodies for those with significant dysautonomia.
Patient-focused podcast with a community feel. Co-hosted by Cassandra Campbell, an EDS advocate and coach. Covers the lived experience of hEDS โ managing relationships, work, daily life, and the emotional journey of chronic illness alongside the clinical side.
Edited by Diana Jovin. Written by 27 specialist physicians across every discipline that touches hEDS. The most comprehensive clinical and patient resource on hEDS available. Both patients and physicians read this. The gold standard reference book for hEDS.
Best for: Comprehensive overview, understanding your diagnosis, educating your doctors. Available on Amazon.
By Kevin Muldowney, PT. The book version of the Muldowney Protocol โ the most widely cited, evidence-based PT program developed specifically for hEDS. Written by a physical therapist who has specialized in EDS since 2005. If you are doing PT for hEDS, this book is the foundation.
Best for: Physical therapy guidance, exercise progression, understanding the Muldowney Protocol. Available on Amazon.
By Jeannie Di Bon. A step-by-step movement guide for hEDS written by a movement therapist with lived experience. Practical, compassionate, and focused on day-to-day function. Companion to The Zebra Club app.
Best for: Learning to move safely, reducing daily pain, accessible home exercise guide. Available on Amazon and at jeanniedibon.com.
Specifically addresses the overlap of all three conditions that commonly present together. A practical workbook-style resource for managing the trifecta. Useful for those dealing with complex multi-system presentations.
Best for: Managing MCAS + POTS + hEDS overlap. Available on Amazon.
By Dr. Lawrence Afrin, MD โ one of the world's leading MCAS researchers and physicians. Written for both patients and physicians. The most detailed and clinically accurate book available on MCAS. Dense reading but invaluable for those with significant mast cell involvement.
Best for: Deep understanding of MCAS, educating physicians who are unfamiliar, complex cases. Available on Amazon.
Official EDS Society site. Provider directory, diagnostic criteria, research updates, patient resources. Start here for everything official.
Gold standard POTS and dysautonomia information. Physician directory. Research updates. Use their POTS info pages to educate cardiologists unfamiliar with the condition.
Patient advocacy organization for POTS. Physician finding tool, treatment guides, community support. Also produces The POTScast podcast.
Jeannie Di Bon's online movement therapy app. Hundreds of hypermobility-safe exercise videos, community support, live events with EDS specialists. Monthly subscription.
Low Dose Naltrexone research trust. Prescriber directory, research library, patient resources. Use the prescriber finder to locate an LDN-prescribing physician near you.
Directory of Regenexx-certified orthobiologic physicians. For PRP and stem cell treatment for joint instability and ligament laxity โ one of the most relevant interventions for hEDS joint pain.
The most important step is finding the right physician team โ a pain physician familiar with hEDS, a cardiologist for POTS evaluation, and a hypermobility-aware PT. Use this guide as your preparation for those conversations.
Written by Gavin Nixon, D.O. • Interventional Pain Medicine • Regenexx Certified Provider
This guide is for educational purposes only and does not establish a physician-patient relationship.
Physician-curated supplements for inflammation, connective tissue, and MCAS support
By Gavin Nixon, D.O. โ Interventional Pain Medicine
The supplement industry is largely unregulated. What's on the label often doesn't match what's in the bottle. The products in this protocol are sourced from brands that undergo third-party testing for potency, purity, and contaminants โ the same brands used in physician practices.
These are available through Dr. Nixon's Fullscript dispensary โ a professional supplement platform. You'll receive a discount off retail pricing automatically applied at checkout.
Quercetin Phytosome
Natural mast cell stabilizer โ blocks histamine release at the source
Curcumin (Liposomal)
Blocks NF-kB inflammatory pathways โ chronic pain and joint inflammation
Fish Oil EPA+DHA
Triglyceride-form omega-3s โ systemic inflammation, joint pain, brain fog
Magnesium Glycinate
Muscle spasm, headaches, sleep, anxiety โ deficiency nearly universal in hEDS
Vitamin D3 + K2
Immune function, muscle strength, pain modulation โ critical in Alaska
PEA (Micronized)
Nerve pain, widespread hEDS pain โ works on mast cells and pain nerves
Collagen Peptides + Vitamin C
Raw materials for connective tissue repair โ synergistic combination
Zinc Bisglycinate
Tissue repair, wound healing, collagen synthesis โ commonly deficient
L-Glutamine
Gut lining integrity โ leaky gut is common in hEDS, worsens MCAS
Zinc Carnosine (PepZin GI)
Clinically studied for gut lining repair โ specific to intestinal epithelium
Electrolytes (POTS Support)
Salt loading support for POTS and dysautonomia โ works with compression and fluid intake
Free to access โ no account required to browse. Discount applied automatically at checkout.
Disclosure: Dr. Nixon earns a practitioner margin on purchases made through his Fullscript dispensary. This does not increase your cost โ Fullscript provides a discount off retail to patients of registered practitioners. All supplement recommendations are based solely on clinical evidence and professional judgment. These statements have not been evaluated by the FDA. These products are not intended to diagnose, treat, cure, or prevent any disease.
Want the full clinical guide explaining why each of these supplements works, what doses to use, and how to combine them with injection therapy, LDN, and the Doctor Appointment Toolkit?
Get the Full hEDS Treatment Guide โ $67 โLog daily symptoms to show your doctor patterns over time. Saved locally on this device.