Understanding what may be happening in your body
Your body is always communicating. Sometimes those signals are confusing — or have been dismissed by others. This page offers a starting point to explore some conditions that are frequently overlooked, especially in women. Take what resonates, research further, and bring your thoughts to a healthcare provider you trust.
Areas discussed on this page
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Hypermobility & hEDS — when flexibility comes with a connective tissue difference
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Lipedema — abnormal fat distribution that isn't a lifestyle issue
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Lipolymphedema — when lipedema and lymphoedema occur together
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Lymphoedema — swelling caused by disruption to the lymphatic system
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MCAS — when immune cells activate too easily across multiple body systems
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Venous insufficiency — when blood struggles to return from the legs to the heart
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POTS — when the nervous system struggles to regulate on standing
The following is general information only. You may find this information, and the links to credible specialists, help you create a clear health picture when you talk with your trusted health care professional about a diagnosis.
Hypermobility & hEDS
Hypermobile Ehlers-Danlos Syndrome & Hypermobility Spectrum Disorder
Being "bendy" or flexible is often seen as a positive trait — but for some people it comes with a connective tissue difference that affects joints, skin, the nervous system, and more. Pain, fatigue, and instability that seem disproportionate are real and valid.
Things that might resonate
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Joint pain or instability
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Frequent sprains or dislocations
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Soft, stretchy or easily bruised skin
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Fatigue Gut issues
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Anxiety or nervous system sensitivity
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Slow wound healing
Often occurs alongside POTS and MCAS — known as the "hypermobility triad."
Connective tissue laxity also affects vein walls, making venous insufficiency more likely in this group.
Common diagnosis steps
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Medical & Family History: Reviewing history of dislocations, chronic pain, and family history of similar symptoms.
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Genetic Testing: Blood tests are used to rule out other, rarer types of EDS (such as Vascular EDS).
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Physical Examination: A doctor checks for soft/velvety skin, skin elasticity, and joint mobility.
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Beighton Score Test: A 9-point system checking for joint hypermobility in the knees, elbows, pinky fingers, thumbs, and spine.
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Score of for children, for adults up to 50, and for over 50 generally indicates joint hypermobility.
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Learn more
Lipedema
A chronic condition of abnormal fat distribution — not a lifestyle issue and ore weight loss will not make it magically go away
Lipedema is a medical condition, not a result of diet or exercise. It causes a specific, symmetrical pattern of fat accumulation — typically in the legs, hips and sometimes arms — that is painful, tender to touch, and doesn't respond to weight loss the way regular fat does.
It is estimated to affect around 1 in 10 women and remains widely undiagnosed.
Things that might resonate
Disproportionate lower body Pain or tenderness when touched Easy bruising Heaviness or aching legs Doesn't respond to diet Worsens around hormonal changes Ankles unaffected (unlike lymphedema)
Can progress to lipolymphedema when the lymphatic system becomes involved. Abnormal fat tissue also compresses venous vessels, worsening venous return over time.
Common diagnosis steps
Lipedema requires a clinical diagnosis, meaning there is not yet a standardized test such as bloodwork or imaging that can confirm the presence of Lipedema. Diagnosis should be reached in the context of a thorough patient history and physical exam.
Learn more
Lymphoedema Assoc. of Australia
Lipedema research library
Lymphoedema
Swelling caused by disruption to the lymphatic system- this may be from surgery (secondary) or genetics (primary)
Lymphoedema occurs when the lymphatic system is unable to drain fluid effectively, leading to swelling — most often in the limbs. It can be primary (present from birth or early life) or secondary (triggered by surgery, cancer treatment, infection or injury). It is a lifelong but manageable condition.
Things that might resonate
Persistent swelling in limb(s)
Heaviness or tightness
Skin changes or thickening
Recurring infections (cellulitis)
Swelling after cancer treatment
Reduced range of movement
MLD is a primary component of Complete Decongestive Therapy — the international gold standard for lymphoedema management. When venous insufficiency is also present, the combined condition is called phlebolymphoedema.
Common diagnosis steps
Diagnosing lymphoedema (lymphedema) involves a combination of medical history, physical examination, and imaging studies to evaluate the lymphatic system's functionality and exclude other causes of swelling. Because no single blood test can diagnose it, doctors rely on clinical assessment to determine the type and severity.
1. Medical History and Symptom Review
The doctor will review your history to identify potential causes of secondary lymphoedema, such as cancer treatment (lymph node removal, radiation), surgery, trauma, or infection. They will ask about:
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Onset: When the swelling first appeared.
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Symptoms: Heaviness, tightness, reduced range of motion, or aching in the limb.
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Progression: If the swelling resolves with elevation or is constant.
2. Physical Examination
A physical exam is often sufficient for diagnosis. The healthcare provider will look for:
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Swelling Patterns: Comparison of the affected limb with the unaffected one.
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Skin Changes: Thickening, hardening, redness, or skin that is warm to the touch.
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Pitting Edema: Pressing the skin to see if an indentation remains.
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Stemmer’s Sign: A positive sign is the inability to lift the skin on the base of the second toe or finger, which is a strong indicator of lymphoedema.
3. Objective Measurements
These measurements track the severity and progression of the swelling:
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Tape Measure: Measuring the circumference of the limbs at specific intervals.
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Perometry: Using optical sensors to measure limb volume.
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Bioimpedance Spectroscopy: Using a small, painless electric charge to measure fluid levels in tissues.
4. Specialized Imaging Tests
If the diagnosis is uncertain or to identify the site of obstruction, specialized imaging may be used:
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Lymphoscintigraphy (Gold Standard): A nuclear medicine test where a radioactive dye is injected to visualize the flow of lymph and detect blockages.
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Ultrasound (Doppler): Used to check for blood clots (DVT) or venous issues as the cause of swelling.
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MRI or CT Scans: These provide high-resolution images of tissues to identify blockages or structural changes caused by fibrosis.
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Indocyanine Green (ICG) Lymphography: A functional imaging test used to visualize superficial lymphatic vessels.
Differential Diagnosis
It is essential to rule out other causes of swelling (edema), such as congestive heart failure, liver disease, kidney failure, or deep vein thrombosis (DVT), particularly in the early stages of swelling.
Learn more
Lymphoedema Assoc. of Australia
National Lymphedema Network (US)
Mast Cell Activation Syndrome
Mast cells are immune cells found throughout the body.
In MCAS, they activate too easily or too intensely — releasing chemicals that cause symptoms across multiple body systems seemingly at random. This can make it extremely difficult to identify and is frequently dismissed as anxiety, allergy, or hypochondria.
Symptoms often fluctuate and may be triggered by food, heat, stress, hormones, or environmental factors.
Things that might resonate
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Flushing or hives Itching without obvious cause
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Gut symptoms (nausea, cramps, diarrhoea)
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Brain fog
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Fatigue
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Reactions to many foods or medications
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Anxiety or racing heart Unpredictable or multi-system symptoms
Part of the hypermobility triad alongside hEDS and POTS.
Mast cells are also found in lymphatic tissue — gentle lymphatic support is generally well tolerated and may assist with overall symptom load.
Common diagnosis steps
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dermatologic symptoms: such as flushing/redness, hives or wheals, itching with or without a rash, swelling
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gastrointestinal symptoms: such as bloating, stomach pain/cramps, reflux, nausea, feeling or being sick, diarrhoea, constipation, dumping syndrome
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respiratory symptoms: such as sore throat, hoarseness, wheezing, shortness of breath, throat swelling, stridor
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cardiovascular symptoms: such as chest pain, low blood pressure, fast heart rate, fainting or light headedness
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naso-ocular symptoms: such as nose congestion, eye watering and itching
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neurological problems: such as headache, brain fog (memory or concentration difficulties), numbness, pain or tingling skin, anxiety, behavioural issues, rages
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musculoskeletal issues: such as joint and muscle pain, osteoporosis (brittle bones), loss of bone mass
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genital and urinary issues: such as genital pain or swelling, pain when urinating, vaginal pain, discharge or itching, bladder urgency or loss of control
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extreme tiredness
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food allergies or intolerances
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anaphylaxis
Source: https://www.mastcellaction.org/diagnosing-mcas
Learn more
Dysautonomia International — MCAS
Venous insufficiency
When blood struggles to return from the legs to the heart
Healthy veins rely on valves and vessel walls to push blood back up toward the heart. When those valves weaken or vein walls lose their tone, blood can pool — particularly in the lower legs. This is venous insufficiency, and it sits on a spectrum from mild (spider veins, mild swelling) to significant (chronic pain, skin changes, ulceration).
It is common, frequently under-investigated, and often entangled with other conditions your doctor may not be connecting the dots on.
Things that might resonate
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Aching or heavy legs
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Visible varicose or spider veins
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Swelling that worsens through the day
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Skin discolouration around ankles Itching or burning on lower legs
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Swelling that improves overnight
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Cramping Slow-healing wounds on lower legs
Closely linked to lymphoedema — when veins are congested, the lymphatic system compensates until it can't. Also connected to hEDS (lax vein walls), POTS (blood pooling on standing), and lipedema (fat tissue compressing venous return). When venous and lymphatic insufficiency combine, it is called phlebolymphoedema.
Common diagnosis steps
Diagnosed primarily by physical examination. Your doctor might recommend Doppler ultrasound imaging to detect improper vein functioning and any blockage of veins by blood clots. CT scan and MRI may be used to rule out any complications of swelling in the leg. Venogram may be recommended to get a clear picture of the blood vessels.
Learn more
POTS
Postural Orthostatic Tachycardia Syndrome
POTS is a form of dysautonomia — a disruption to the autonomic nervous system that regulates heart rate, blood pressure, digestion, and more. In POTS, heart rate increases dramatically upon standing, triggering a cascade of symptoms. It is significantly more common in women and is often dismissed as anxiety or deconditioning.
Things that might resonate
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Rapid heartbeat on standing
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Lightheadedness or fainting
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Brain fog Extreme fatigue
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Nausea Worse after meals or in heat
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Exercise intolerance
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Visible vein changes on standing
Strongly associated with hEDS and MCAS. In some presentations, blood pooling in lax lower-limb vessels is a key driver — overlapping with venous insufficiency. Compression garments help both conditions for this reason.
Common diagnosis steps
Before diagnosing POTS, it is essential to assess for other conditions that can cause orthostatic symptoms. While some of these conditions may coexist with POTS, identifying and treating them is crucial to ensure accurate diagnosis and optimal management.
Source: https://potsfoundation.org.au/diagnosing-pots/
Learn more
Dysautonomia International PoTS UK