What to explain
Explain the joint and tissue history, then describe exactly when thinking becomes harder.
I would like to discuss whether hypermobile EDS, another EDS type, or a treatable problem linked with pain, sleep, migraine, medicines, or standing could be contributing to my brain fog. Could we review my diagnosis, joint and skin history, family history, and upright symptoms, then decide which examination, blood tests, heart checks, or referrals I actually need?
Questions to take in
Ask what diagnosis is supported and which separate cause of brain fog should be addressed first.
- Do I meet the current criteria for hEDS, HSD, another EDS type, or none of these?
- What does my Beighton score show, and which history, skin, tissue, pain, and family findings still need examination?
- Do any findings suggest classical, vascular, or another EDS type that needs genetic testing?
- Could pain, migraine, sleep, medicines, anemia, iron, B12, thyroid, or another condition explain my brain fog better?
- Do my upright symptoms justify lying-to-standing heart rate and blood pressure, a NASA Lean Test, tilt-table testing, or cardiology or neurology review?
- Do flushing, hives, swelling, wheezing, vomiting, diarrhea, or symptoms in more than one body system call for an allergy or mast-cell assessment, or is testing unnecessary?
- Do burning pain, numbness, altered sweating, or weakness justify a nerve examination or small-fiber-neuropathy testing?
- What can I safely do now for sleep, joint protection, strength, pain, work or school adjustments, hydration, and upright symptoms?
Joint, circulation, pain, and sleep checks
What the joint examination, standing measurements, blood tests, medicine review, sleep study, and genetics assessment can show.
The useful check depends on whether the appointment is about diagnosis, upright symptoms, sleep, pain, medicine effects, or signs of another EDS type. No one needs every test on this list.
Beighton Score
The Beighton score measures five joint movements for up to nine points. The clinician also needs history, tissue and musculoskeletal findings, family history, and exclusion of another diagnosis.
Read the test guideOrthostatic Vital Signs and Active Stand Test
Lying-to-standing heart rate and blood pressure can show what changes while upright. A normal brief check may not settle intermittent symptoms, and an abnormal result still needs clinical interpretation.
Read the test guideCBC + CMP Blood Test Bundle
A CBC can show anemia or another blood-cell change. A CMP includes glucose, electrolytes, kidney function, liver chemistry, and proteins. A CBC or CMP result cannot diagnose EDS.
Read the test guideTSH, B12 and Ferritin Tests
TSH, B12, and ferritin check thyroid control, vitamin B12 status, and stored iron. They are used when symptoms, diet, blood loss, medicines, or earlier results make them relevant.
Read the test guideMedication Review
A medicine review checks sedation, low blood pressure, anticholinergic effects, sleep disruption, withdrawal, interactions, and the timing of pain treatment.
Read the test guideOvernight Sleep Study (PSG)
A sleep study can identify sleep apnea, breathing changes, limb movements, or another sleep disorder when nighttime and daytime symptoms fit.
Read the test guideGenetic assessment when signs suggest another EDS type
Genetic assessment can test for several rarer EDS types and related connective-tissue disorders. It cannot confirm hEDS with a blood test.
Ask your doctorBefore the appointment
Bring the diagnosis evidence and the situations that make thinking harder. A Beighton score alone isn't enough.
Bring any hEDS, HSD, EDS, genetics, rheumatology, rehabilitation, physiotherapy, cardiology, neurology, sleep, or pain letters.
List joints that were unusually flexible in childhood, joints that partly or fully dislocate, repeated sprains, long-lasting pain, scars, bruising, hernias, prolapse, dental crowding, and wound-healing problems.
Bring a family history of diagnosed EDS, aneurysm, dissection, organ rupture, collapsed lung, sudden unexplained death, very fragile skin, repeated dislocations, or similar symptoms.
List what happens after standing, walking, heat, showers, meals, pain, poor sleep, migraine, neck movement, exercise, or a medicine dose. Include heart rate and blood pressure only if already measured safely.
Bring ECG, echocardiogram, vascular imaging, spine imaging, sleep study, CBC, ferritin, B12, thyroid, vitamin D, celiac, and autonomic results already completed.
Bring every medicine, supplement, pain treatment, brace, compression item, mobility aid, and exercise or physiotherapy plan.
Prepare two real examples of what brain fog stopped you doing, such as driving, working, studying, following instructions, cooking, or managing medicine.
Past records, safe observations, and two daily examples are enough to start. A clinician can decide which examination or test is appropriate.
How the doctor assesses this
Signs of hEDS, HSD, or another condition that may be adding to brain fog
- There is generalized joint hypermobility, repeated instability, long-lasting pain, unusual skin or tissue findings, or a matching family history.
- Thinking gets harder after standing, heat, showers, meals, pain, migraine, poor sleep, injury, or a medicine dose.
- Heart rate, blood pressure, sleep, blood count, thyroid, vitamin, nerve, or genetic results may show a condition that needs its own care.
Reasons to check sleep apnea, anemia, iron, B12, thyroid, migraine, medicines, depression, infection, or neurological illness too
- There is no generalized joint hypermobility, repeated instability, long-lasting musculoskeletal pain, skin or tissue finding, or family history that supports an EDS or HSD assessment.
- Thinking problems don't change with standing, pain, migraine, sleep, medicine timing, injury, or physical strain.
- Sleep apnea, anemia, iron or B12 deficiency, thyroid disease, migraine, medication effects, depression, infection, or another condition explains the timing better.
- A high Beighton score alone shows joint hypermobility. It does not establish hEDS or show what is causing the brain fog.
What to understand before choosing care
Decisions to make about hEDS or HSD criteria, genetics, upright testing, common blood tests, sleep, rehabilitation, and follow-up.
- Ask whether the appointment is confirming hEDS or HSD, checking for another EDS type, or investigating a separate cause of brain fog.
- No gene test currently confirms hypermobile Ehlers-Danlos syndrome (hEDS). Doctors order genetic testing when your history and exam suggest another inherited connective-tissue disorder.
- A Beighton score measures selected joint movements. The full hEDS assessment also needs tissue and musculoskeletal findings, family history, and exclusion of another diagnosis.
- POTS and mast-cell testing should be based on the symptoms. Current expert guidance does not support testing every person with hEDS or HSD for both.
- Pain, sleep, migraine, medicines, upright symptoms, anemia, thyroid, B12, and mood are separate questions that can each change care.
What the research found
What current diagnostic guidance and 2025 studies say, including what the numbers cannot prove.
As of July 2026, the 2017 hEDS criteria remain the current published criteria. The Ehlers-Danlos Society says updated EDS and HSD classification criteria are due out on December 2, 2026.
A negative connective-tissue panel does not prove hEDS, and a Beighton score alone does not establish it.
A 2025 neuropsychology study compared only 12 people with hEDS with 12 matched controls. Most objective thinking tests did not differ; delayed word recall was lower, while pain, fatigue, and self-reported cognitive difficulty were higher. The sample is too small to define an hEDS cognitive profile.
A 2025 survey study included 385 people with hEDS or joint hypermobility spectrum disorder. Sixty-five percent reported orthostatic symptoms and 73% reported cognitive changes, but the study used self-report, was cross-sectional, and found very small group effect sizes. It can't prove upright symptoms caused the thinking changes.
A 2025 specialist-center study analyzed 270 referred hEDS patients and 29 controls. It found reduced upright brain blood-flow velocity in 79%, POTS in 33%, and high rates of nerve and autonomic findings. This selected referral group does not give population rates and does not support advanced autonomic testing for every person with hEDS.
The 2025 AGA expert review says POTS and mast-cell testing should be used when the person has matching symptoms. Routine testing of every person with hEDS or HSD is not supported by current evidence.
How diagnosis and care change for children, biologically mature adults, people over 50, pregnancy, and older age.
Children and teenagers are often more flexible than adults. The 2017 adult hEDS criteria were not designed for children who have not reached biological maturity.
For children and teenagers, doctors use age-specific guidance for very flexible joints. A young person may need another check for hypermobile EDS after the body has finished maturing.
The adult Beighton cutoff falls from at least 5 to at least 4 after age 50 because joint movement often decreases with age. Past flexibility and injuries still matter.
EDS can affect any sex. The diagnostic criteria do not use separate male and female Beighton cutoffs.
Pregnancy and birth planning may need joint, pelvic, wound-healing, bleeding, heart, medicine, anesthesia, and postpartum support reviewed. Known or suspected vascular EDS needs specialist maternal care.
Older adults may have less visible hypermobility but more pain, arthritis, falls, medicines, sleep problems, or cardiovascular disease that can also affect thinking and daily safety.
If the answer is no
If your doctor will not test you for Ehlers-Danlos
There is no genetic test for hypermobile EDS, or hEDS. GeneReviews says it is diagnosed with the 2017 clinical criteria. Other EDS diagnoses can have genetic tests. A doctor needs to decide which EDS diagnosis your signs may support before ordering one.
What changes the answer
- Ask which EDS type is being considered. hEDS has no known gene test. Other EDS types may have one when your signs fit that type.
- Ask for all three parts of the hEDS criteria. They cover joint movement, other body or family features, and checks for other conditions.
- Have your Beighton score recorded. The cutoff is 5 or more through age 50 and 4 or more after age 50. This score is only one part of the assessment.
- If you're still growing, ask when you'll need another check for hEDS. The adult criteria are used after a person reaches physical maturity. GeneReviews says to watch younger people and reassess them then.
United States, United Kingdom, and Australia
Who to contact about EDS and Brain Fog.
US United States
Book a diagnosis and symptom review. Bring joint, skin, tissue, family, upright, sleep, pain, medicine, and daily-function details plus earlier reports.
- The 2017 clinical hEDS criteria apply to adults. They include joint hypermobility, tissue and musculoskeletal findings, and ruling out another diagnosis.
- Doctors diagnose hEDS from the history and examination because no confirmatory gene test is available. Genetics is used when another inherited connective-tissue disorder is possible.
- Management is based on the person's joint, pain, autonomic, sleep, gastrointestinal, neurological, and daily-function needs.
UK United Kingdom
See a GP. Bring joint history, skin and tissue findings, family history, upright symptoms, pain, sleep, medicines, prior reports, and daily examples.
- hEDS is diagnosed from medical history and physical examination because no test currently confirms it.
- A GP may refer joint problems to rheumatology and possible rarer EDS types to clinical genetics.
- Physiotherapy, occupational therapy, pain care, and treatment for each symptom can be used as needed.
AU Australia
Book a GP or pediatric review. Bring joint, skin, tissue, family, upright, sleep, pain, medicine, and daily-function details plus earlier scans and reports.
- No genetic test is available for hEDS. A GP or pediatrician usually coordinates symptom management.
- Genetic testing may be available for rarer forms such as classical or vascular EDS.
- Skin fragility, arterial injury, organ rupture, collapsed lung, major skeletal findings, or a matching family history supports clinical-genetics referral.
Safety
Show how it affects daily life
- For one or two weeks, note when thinking gets harder, which task it affects, body position, pain, headache, sleep, meals, heat, activity, and medicine timing.
- Note how long you were upright and whether sitting helped. Skip retesting if you might faint.
- Keep sleep and wake times as regular as possible. Record snoring, gasping, morning headache, restless legs, and severe daytime sleepiness.
- Use regular meals and fluids unless a clinician gave different instructions. Before you make a high-salt plan, stop medicine, or start compression, check whether it's safe for your heart, kidneys, blood pressure, and other conditions.
- Avoid forceful joint stretching, neck manipulation, or deliberately causing partial dislocations or neurological symptoms for the appointment.
- Ask a physiotherapist who understands hypermobility about controlled strength, joint protection, pacing, braces, or mobility aids that fit your actual joints and function.
Source checked
Sources behind this handout.
- 01
Hakim A. Hypermobile Ehlers-Danlos Syndrome. GeneReviews. Updated clinical reference for diagnosis and management.
Source - 02
The Ehlers-Danlos Society. Diagnostic criteria for EDS and hypermobility spectrum disorders.
Source - 03
The Ehlers-Danlos Society. New model of care and timetable for updated EDS and HSD criteria.
Source - 04
Aziz Q et al. AGA Clinical Practice Update on gastrointestinal, autonomic, and immune symptoms in hEDS and HSD. Clinical Gastroenterology and Hepatology. 2025. PMID: 40387691.
Source - 05
Sousa A et al. Neuropsychological function and subjective cognition in hypermobile Ehlers-Danlos syndrome. Brain and Behavior. 2025. PMID: 40444676.
Source - 06
Tariq H et al. Orthostatic intolerance symptoms and cognitive complaints in hEDS and joint hypermobility spectrum disorder. Cureus. 2025. PMID: 40672035.
Source - 07
Novak P et al. Hypermobile Ehlers-Danlos syndrome: cerebrovascular, autonomic, and neuropathic features. American Journal of Medicine Open. 2025. PMID: 40843452.
Source - 08
NHS. Ehlers-Danlos syndromes: symptoms, diagnosis, referrals, and treatment.
Source - 09
Sydney Local Health District. Ehlers-Danlos syndrome and hypermobility spectrum disorder: testing, management, and genetics referral signs.
Source