When Hyperflexibility Hurts - Living with EDS, POTS, MCAS & Dysautonomia
- Monica Williams
- 9 hours ago
- 8 min read
What do Hyperflexiblity, POTS, MCAS and EDS have in common?
Hyperflexibility, POTS (Postural Orthostatic Tachycardia Syndrome), MCAS (Mast Cell Activation Syndrome), and EDS (Ehlers-Danlos Syndrome) may seem like separate conditions, but they are often deeply interconnected, especially in people with hypermobile EDS (hEDS). What they all have in common is a foundation in connective tissue dysfunction and nervous system dysregulation that can manifest if varying degrees.
Many children are naturally flexible, but when teens start experiencing unexplained joint, hip, neck, or foot pain—or frequent injuries—it could be time to look deeper. Most mainstream practitioners may not connect the dots, but persistent pain, fatigue, or “clumsiness” might signal a hyperflexibility disorder.
Hyperflexibility refers to joints, ligaments and connective tissues that are looser than normal and move beyond the normal range of motion. Often seen in people who are naturally "bendy" or "double-jointed".
While this can be harmless in some, for others it can cause a great deal of pain and discomfort, increasing risk of injuries, and upsetting a normal setpoint for the autonomic nervous system.
Ehlers-Danlos Syndrome (EDS) is a group of genetic conditions affecting the way collagen is made in the body, the protein that gives structure and strength to skin, ligaments, blood vessels, tissues and organs. In EDS, collagen can be made in such a way that makes it more fragile or improperly formed, leading to things like 'ligament laxity' manifesting in a tendency to injury and pain, joint instability, frequent sprains, dislocations, chronic pain, fatigue, soft, stretchy skin, and even issues with digestion, circulation, or nerve compression issues.
EDS commonly goes undiagnosed, leading to a situation where symptoms are dismissed as being the result of clumsiness, anxiety, being accident prone, lazy, uncoordinated, and attention seeking.
Understanding hyperflexibility in the context of connective tissue integrity is crucial for identifying the root causes of seemingly unrelated health challenges, and helping the person and their family know how to manage it.
What are the Symptoms of Hyperflexibility and
Ehlers Danlos Syndrome (EDS)?
There are 13 types of EDS ranging from mild symptoms to severe symptoms. Conditions like Marfans tend to be picked up medically if you have a good GP, but others tend to fly under the radar and not be diagnosed unless something severe manifests, and even then it can be missed.
Symptoms can vary in severity and combination depending on the type of EDS (especially hypermobile EDS, or hEDS, which is the most common and hardest to diagnose).
Mild Symptoms of Chronic Concussion
Musculoskeletal System
Joint hypermobility (double-jointedness)
Joint pain (chronic or recurring)
Frequent joint sprains, subluxations, or dislocations
Early-onset osteoarthritis
Muscle fatigue or weakness
Poor posture and spinal instability
Flat feet or high-arched feet
Tendonitis, bursitis, and repetitive strain injuries
Chronic pain
Increased risk of injuries
Skin
Soft, velvety skin
Hyperextensible (stretchy) skin
Fragile skin that bruises easily
Slow wound healing and wide, atrophic (“cigarette paper”) scars
Easy bruising without trauma
Neurological & Autonomic
Headaches and migraines (often related to cervical instability)
Nerve compression syndromes (e.g., carpal tunnel, tarsal tunnel, thoracic outlet syndrome)
Peripheral neuropathy or tingling/burning sensations
Dizziness or fainting (especially on standing – POTS)
Sensory sensitivity (to light, noise, touch, or temperature)
Brain fog and poor memory or concentration
Cardiovascular
Postural Orthostatic Tachycardia Syndrome (POTS)
Low blood pressure or blood pooling in limbs
Palpitations or heart rate irregularities
Mitral valve prolapse or mild aortic dilation (in some types)
Gastrointestinal & Bladder Symptoms
Bloating, IBS-like symptoms
Gastroesophageal reflux (GERD)
Scarring from stretching of the oesophagus from the weight of the stomach
Delayed gastric emptying
Nausea or poor appetite
Pelvic floor dysfunction
Interstitial cystitis or frequent urinary tract symptoms
Other Common Symptoms
Fatigue (often severe and unrelieved by rest)
Sleep disturbances
Anxiety (often from dysautonomia, not psychological origin)
Temperature dysregulation (cold hands/feet, overheating)
Difficulty with anesthesia or pain medications
Hormonal imbalances or menstrual irregularities
Dental crowding or palate abnormalities
Sensitivity to medications or supplements
MCAS - Mast Cell Activation Syndrome
Dysautonomia & Hyperflexibility
Dysautonomia is an umbrella term for disorders in which the autonomic nervous system (ANS)—which controls involuntary functions like heart rate, blood pressure, digestion, temperature regulation, and pupil response—doesn’t function properly.
Symptoms vary widely but may include
dizziness
lightheadedness
seeing white or black spots, tunnel vision, or momentary visual dimming when standing up quickly
fainting
rapid heart rate (especially upon standing)
low blood pressure
poor temperature regulation
chronic fatigue
nausea
constipation or diarrhea
anxiety-like sensations
blurred vision
exercise intolerance.
In individuals with Ehlers-Danlos Syndrome (EDS), particularly the hypermobile type (hEDS), dysautonomia is common because connective tissue weakness affects not just joints, but also blood vessels, nerves, and internal organ support.
Fragile or overly elastic vessels can’t maintain vascular tone, leading to blood pooling, while cervical instability or fascial tension may irritate the vagus nerve and sympathetic ganglia, worsening autonomic dysregulation.
This results in a dysregulated fight-or-flight response, contributing to conditions like POTS, anxiety, temperature instability, digestive dysfunction, and chronic exhaustion, all seen frequently in EDS patients.
The Triad: EDS, POTS, and MCAS
MCAS (Mast Cell Activation Syndrome), POTS (Postural Orthostatic Tachycardia Syndrome), and dysautonomia are increasingly recognized as comorbid conditions that often occur alongside hypermobility and Ehlers-Danlos Syndrome (EDS). While they may seem like separate diagnoses, they share deep physiological connections and often stem from the underlying instability in connective tissue and nervous system regulation.
Here's how they all fit together:
1. POTS (Postural Orthostatic Tachycardia Syndrome)
What it is: A form of dysautonomia where the heart rate increases abnormally upon standing, leading to dizziness, lightheadedness, fatigue, and sometimes fainting.
Link to EDS: In hypermobile individuals, lax blood vessels and poor vascular tone allow blood to pool in the lower body when standing. The body compensates by over-activating the sympathetic nervous system, triggering the rapid heart rate of POTS.
Common symptoms: Palpitations, shaking, brain fog, nausea, cold hands and feet, chronic fatigue.
2. MCAS (Mast Cell Activation Syndrome)
What it is: A condition where mast cells release histamine and other inflammatory chemicals inappropriately, leading to symptoms in multiple systems.
Link to EDS: Fragile connective tissue may destabilize mast cells, while chronic stress on the body (like frequent injuries, gut permeability, or infections) can prime the immune system for overreaction.
Common symptoms: Flushing, hives, itching, fatigue, brain fog, headaches, food sensitivities, bloating, nasal congestion, or even anaphylaxis-like reactions without a clear trigger.
3. Dysautonomia (Autonomic Nervous System Dysfunction)
What it is: A dysfunction of the autonomic nervous system, which controls involuntary functions like heart rate, blood pressure, digestion, and temperature regulation.
Link to EDS: With unstable joints (especially in the neck/spine) and poor fascial support, the vagus nerve and sympathetic pathways can be irritated, contributing to overactive fight-or-flight responses and poor regulation of vital functions.
In healthy individuals, when you stand up, the autonomic nervous system (ANS) responds instantly by tightening blood vessels and increasing heart rate just enough to keep blood (and oxygen) flowing to the brain. In dysautonomia, this reflex is delayed or inadequate, so not enough blood reaches the brain, leading to temporary symptoms of dizziness, white, black, stars, tunnel vision, greying out, feeling lighteded, dizzy and if it goes on a bit long, nausea, racing heart, and shakiness as adrenalin is released to get the blood to the head.
Other common symptoms: Heat intolerance, temperature instability, anxiety-like symptoms, digestive issues, irregular heartbeat, or extreme fatigue—especially after minor exertion.
How It All Connects
In many EDS/hypermobile individuals:
Lax connective tissue affects not only joints, but blood vessels, nerves, and internal organs.
This structural instability leads to neurological, cardiovascular, and immune dysregulation.
The result is a syndrome-like overlap: chronic pain, fatigue, dizziness, food intolerances, allergic-type symptoms, poor gut function, and brain fog—all without abnormal scans or standard test results.
This overlap is often referred to as the “trifecta” (hEDS + POTS + MCAS) and may also include autoimmune disorders, neuroinflammation, or hormonal imbalances.
How FSM Can Help
FSM may support individuals with this triad by:
Calming the nervous system and nerves
Turning up vagal control
Reducing mast cell-driven inflammation (9 Hz for histamine, 40 Hz for inflammation on the affected tissues)
Targeting areas of spinal or vascular compression
Supporting fascia and nerve glide, improving autonomic and circulatory function
Strengthening connective tissue
Enhancing tissue repair
Reducing systemic inflammation
Regulating the immune system
Treating pain
Improving stamina
Most people with EDS don't know they have it.
Working in my own practice and at Goodsky Mental Health Retreat I have encountered many teenagers and adults who think they are dealing with a mental health issue, when what they is unrecognised autonomic dysfunction, usually second to a vestibular injury, EDS, hyperflexibility condition, POTS or chronic concussion.
Often there are injuries in a person's story. By the time an older adult comes to see me, they usually tell a story of spinal surgeries, chronic pain, fibromyalgia, and a life of pain and difficulty. I meet more people with this condition who don't know they have it, than I do people who have been diagnosed already. General practitioners do not know about it yet, and very few specialists. If a person is lucky enough to be seen by an aware GP, the waiting list for an EDS specialist is usually a year or more.
A Client Story
Mikayla was 16 when her mum brought her to the clinic. Her intake questionnaire read:
· Mental Health: Depression, anxiety, PTSD, trauma, self-harm, self-worth, stress, and burnout. Current history of hospitalizations for depression and suicidal ideation.
· Physical Health: Persistent gastrointestinal issues (constipation, diarrhea, abdominal pain), nervous system symptoms (fainting, headaches, numbness, tremors), heart/vascular symptoms (palpitations, chest pain, leg pain), musculoskeletal issues (back, neck, joint pain), chronic pain, fatigue, and sleep disturbances.
She was raised on a farm with three brothers and they were very active, brave, rough and tumble kids growing up. There were "too many to remember" head impacts, when I asked about falls, head injuries and accidents. She had come off horses many times, fallen off a drum swing (rodeo style), bike, motor bike, diving, falls ... so many head and body injuries it was uncanny. She thought she was just clumsy!
When I assessed her it was soon clear she was hyperflexible, her Beytons Score was 9/9. All the head injuries she had sustained left her with a vestibular injury, and she was positive POTS and dysautonomia when I screened for it. No wonder she was struggling so much! Undiagnosed POTS is debilitating enough without the other things going on as well.
After six FSM sessions Mikayla could stand with NO POTS SYMTPOMS AT ALL. Her memory improved, she could process information faster, make decisions (which was a big problem before), she started sleeping better, her energy improved, she had more stamina, could get through the day without crashing out, and her pain came right down to next to nothing. She was much happier in herself, more content, and she started to read, something she found nauseating and difficult before, she often had to reread the same sentence multiple times before and still couldn't remember what she had read. She could follow a recipe and started cooking more, which everyone loved.
She will always be hyperflexible, but now she can understand it, that it wasn't all out of nowhere, she feels better, and now she knows now how to better care for herself.
Invisible Illness
This is an invisible illness that deeply impacts the ability of a child / teen / adult to achieve in their lives. They often feel clumsy, and struggle to sit long enough to study, also struggling to retain information and learn.
There is commonly a picture of anxiety, depression, chronic pain, chronic fatigue and bullying, because the people around them think they are lazy and clumsy, they don't know what they are dealing with. Some kids will need special compensations for exams if their heteroflexibility leads to hypotonicity. Just sitting long enough to do an exam can be hard when your neck is too weak to hold up your head!
This is one of the many cases I have seen, and there is always a theme of confusion and struggle, until the person and the family understand what it is. It is much easier to manage when you know you have this syndrome, diagnosis - as difficult as it can be to get - is important, whether formal or not.
Book a Free 15 Minute Consultation with Monica Williams
If you or a family member might be dealing with hyperflexiblity, EDS, Dysautomonia, MCAS or POTS, contact Monica to discuss whether Frequency Specific Microcurrent (FSM) therapy could support your recovery.
Based in Maroochydore on the Sunshine Coast, Monica treats clients in-clinic from across Australia, with many travelling from Sydney, Melbourne, and regional areas to access her highly specialised care. An FSM specialist with 25 years clinical experience as a Naturopath, Monica brings deep clinical insight and passion to every treatment.
Book in for a free 15-minute consultation by following the link below.
