Hypermobile EDS (hEDS): What You Need to Know
Hypermobile EDS (hEDS) is a genetic connective tissue condition. It causes joints to move beyond the normal range. It leads to widespread pain, fatigue and joint instability. The connective tissue is stretchy all through the body, so problems often show up far from their root cause. This is why it is important to assess alignment across the whole body.
Key points
- hEDS is the most common type of Ehlers-Danlos syndrome. It is inherited genetically.
- Symptoms go well beyond "being flexible". They often include chronic pain, fatigue and frequent joint subluxations.
- Diagnosis follows specific clinical criteria. There is no single blood test for hEDS.
- Loose connective tissue affects alignment from head to toe. So a problem in one joint can cause pain somewhere else.
- Standing, weight-bearing imaging can show alignment problems that lying-down scans miss.
You may have been told you are "just hypermobile", yet you still have pain, instability or fatigue. If so, you may have hypermobile Ehlers-Danlos syndrome. This page explains what hEDS is and how it is diagnosed. It also explains how whole-body standing imaging can help you and your clinicians understand what is happening in your body.
If you have sudden weakness, numbness, or loss of bladder or bowel control, get urgent medical help from your doctor or your nearest emergency department. Do not book a scan instead.
What are the main symptoms of hypermobile EDS?
The main symptoms of hEDS are joint hypermobility, chronic widespread pain, and repeated joint dislocations or subluxations (partial dislocations). But the condition affects far more than your joints alone.
Widespread, persistent pain in the joints and muscles, often with no obvious injury.
Joints that slip, pop or partly dislocate during everyday activities.
Deep, persistent tiredness that rest does not fully relieve.
Soft, stretchy skin that bruises easily and heals slowly.
Bloating, reflux and other stomach and bowel symptoms are common alongside hEDS.
Lightheadedness or a racing heart when you stand up. This is sometimes linked to dysautonomia.
Many people with hEDS are told their pain is "unexplained". This is because scans of a single joint often come back normal. The real picture only becomes clear when the whole body is assessed together, in the position where symptoms actually occur: standing up.
Is hypermobile EDS genetic?
Yes, hEDS is a genetic condition. It runs in families and follows an autosomal dominant pattern. This means you only need to inherit one copy of the affected gene from one parent to develop it. However, the exact gene behind hEDS has not yet been found. That is one reason there is no genetic blood test for this type.
The underlying problem is in your connective tissue, the "scaffolding" that holds your joints, skin, blood vessels and organs together. In hEDS, this connective tissue is stretchier and less supportive than usual. That is why the condition affects so many different body systems at once.
Connective tissue is everywhere, so hEDS is truly a whole-body condition. A problem in the spine can shift load to the hips and knees. Loose ligaments in the ankle can change how your pelvis sits. Your body makes up for it in a chain reaction. The place you feel pain may not be the place where the problem starts.
How is hypermobile Ehlers-Danlos syndrome diagnosed?
hEDS is diagnosed using a set of clinical criteria published in 2017. There is no single blood test for it. The criteria have three parts:
- Generalised joint hypermobility, usually assessed with the Beighton score, a simple set of physical tests your clinician carries out.
- Two or more additional features from a list that includes skin involvement, family history, and musculoskeletal complications such as chronic pain or repeated dislocations.
- Ruling out other conditions that could explain the symptoms, including other types of Ehlers-Danlos syndrome and autoimmune or inflammatory conditions.
Getting a diagnosis can take a long time. Many people see several specialists over many years before they get answers. One reason is that standard imaging, such as an X-ray or MRI of a single joint, often looks normal. It does not show how your body behaves as a whole when you are upright and bearing weight.
What is the difference between hEDS and hypermobility spectrum disorder?
Hypermobility spectrum disorder (HSD) is diagnosed when you have symptomatic joint hypermobility but do not meet the full 2017 criteria for hEDS. It is not a lesser diagnosis. HSD can be just as painful and disabling as hEDS.
- Meets all three 2017 diagnostic criteria
- Systemic connective tissue features present
- Often includes skin, heart or digestive involvement
- A positive family history is common
- Symptomatic hypermobility present
- Does not meet the full hEDS criteria
- Can be just as painful and limiting
- Managed with the same approaches as hEDS
Whether you have hEDS or HSD, the key point is the same. Your connective tissue does not support your joints the way it should. This affects your whole-body alignment. And the best way to see that alignment is while you are standing.
How does standing imaging help with hypermobile EDS?
Standing, weight-bearing imaging captures your skeleton the way it actually works: upright and under the load of gravity. For someone with hEDS, this is especially important. When you lie down for a standard X-ray, CT or MRI, your muscles relax. Your loose joints settle into a position that may look fine. As soon as you stand up, your alignment can shift a lot, because your connective tissue is not holding everything in place the way it should.
An EOS scan takes a full-length, standing image of your body from head to toe in one pass. It uses about 90% less radiation than a standard X-ray, around ten times less. The result is a complete picture of how your spine, pelvis, hips, knees and ankles line up when you are bearing weight. This helps clinicians see the compensation patterns that hEDS creates, where your body overloads one joint to protect another.
ScanAlign offers this type of whole-body standing EOS assessment at 19 Harley Street, London. You do not need a referral from your doctor to book. Many people with hEDS find that a full alignment picture gives their treatment team the information they need to plan more targeted support. That team may be a physiotherapist, a rheumatologist or an orthopaedic surgeon.
When is MRI the better choice? EOS shows bones, joints and alignment very clearly. For soft tissue problems such as disc herniations, nerve compression or ligament tears, MRI is usually the better tool. Many people with hEDS benefit from both types of imaging for a complete picture.
What helps when you are living with hypermobile EDS?
There is no cure for hEDS, but understanding how your body is aligned is a powerful first step. Most ways of managing it focus on supporting the joints, reducing pain and building strength in a controlled way. Common approaches include specialist physiotherapy, pacing your daily activities, and working with clinicians who understand connective tissue conditions.
Imaging plays a diagnostic role in this process. ScanAlign does not provide treatment. But the detailed alignment information from a standing EOS scan gives your clinical team a clear, whole-body map to work from. That can mean more precise physiotherapy targets and better-informed decisions about bracing, or about planning surgery if it is needed.
Before you start treatment, or change the one you are on, it is worth getting a detailed diagnosis. Knowing whether the cause sits in your pelvis, your legs or your spine changes what will actually help.
Want to know how to prepare, or what to expect on the day? Visit the frequently asked questions page for details. The price for patients travelling from abroad is confirmed during the free video consultation.
Frequently asked questions about hypermobile EDS
Hypermobile EDS (hEDS) is a genetic connective tissue condition that causes joints to move beyond the normal range. It leads to chronic pain, fatigue, joint instability and a range of other symptoms throughout the body.
No. Being flexible or "double-jointed" is common and usually harmless. hEDS involves hypermobility plus chronic pain, fragile tissue, fatigue, and often other systemic features. It is a medical condition, not simply being bendy.
Diagnosis follows the 2017 international criteria. A clinician assesses how far your joints move, checks for systemic features such as skin involvement and family history, and rules out other conditions. It is a clinical diagnosis based on examination and history.
HSD is diagnosed when you have symptomatic hypermobility but do not meet all the criteria for hEDS. Both conditions can be just as painful and limiting, and both benefit from the same management approaches.
No. hEDS is diagnosed clinically, not by imaging. However, a standing EOS scan shows how hEDS affects your alignment when you bear weight. It reveals compensation patterns that help guide treatment planning.
When you lie down, your muscles relax and gravity is removed. In someone with loose connective tissue, this means the joints settle into a position that can look normal. Standing imaging captures your skeleton as it actually works, under load and gravity.
Yes. The scan uses about 90% less radiation than a standard X-ray, around ten times less. You simply stand still for a few seconds. It is safe and non-invasive. Visit the FAQs page for more on safety and what to expect.
No. ScanAlign accepts self-referrals. You can book a free video consultation directly to discuss whether a scan is right for you.
The price for patients travelling from abroad is confirmed during the free video consultation. You can find more details on the FAQs and cost page. ScanAlign is a private, self-pay clinic.
Yes. Loose connective tissue affects the ligaments that support your spine. This can lead to changes in posture, increased spinal curves and instability. A full standing image from head to toe shows exactly how your spine alignment is affected.
See your whole-body alignment, standing up
If you have hEDS or think you might, a standing EOS scan can show your clinicians the full picture. No referral needed.
Book a free video consultationWritten by Abbas Dhami (Specialist Diagnostic Radiographer)
Sources
- Malfait F, Francomano C, Byers P, et al. The 2017 international classification of the Ehlers-Danlos syndromes. American Journal of Medical Genetics Part C: Seminars in Medical Genetics. 2017;175(1):8-26.
- The Ehlers-Danlos Society. What is hEDS? ehlers-danlos.com
- NHS. Joint hypermobility. nhs.uk
This page is general information and not a diagnosis.
ScanAlign is the trading name of CoreMed Solutions Ltd and operates under The Harley Street Hospital's CQC licence.