EDS and Hypermobility: A Complete Guide

Last reviewed October 31, 2026

I've treated EDS in my own family across three generations, including my son. I watched his joints, his blood pressure and his reactions get handled by different doctors who never talked to each other. That's what taught me these problems have to be treated together. If you've lived that too, this guide is for you.

Ehlers-Danlos syndrome (EDS) is a group of inherited conditions that affect connective tissue, the "glue" that holds joints, skin, blood vessels and organs together. The most common type is hypermobile EDS, and many people with loose, painful joints fit a related diagnosis called hypermobility spectrum disorder (HSD). Both are real, both deserve treatment, and the right plan can make daily life feel much more stable.

Hypermobility rarely comes alone. It usually travels with some dysautonomia, such as POTS, and some mast cell symptoms. In my medical practice focused on individuals with hypermobility, I build one plan, in four steps, that I walk through below.

In this guide:

There are 13 types of EDS,¹ and most have a known gene, but hypermobile EDS doesn't yet, so doctors diagnose it with a checklist from the 2017 international criteria.¹

That checklist has three parts:

If you have symptomatic hypermobility but do not meet every part, the diagnosis is usually HSD.² HSD is not "EDS lite." People with HSD can have the same pain, injuries and fatigue as people with EDS. In my practice, I treat them the same way.

If you were the bendy kid who could do the splits but feel stiff and sore now, this part is for you. Many of my patients are diagnosed in their 30s, 40s or later. Joints often get stiffer with age, so a low Beighton score today does not rule out a hypermobile past. The 2017 criteria allow for this. A doctor can ask simple questions about what you could do as a child, like bending your thumb to your forearm or doing the splits.¹

A good adult evaluation includes:

Bring a list of past injuries, surgeries and odd reactions to medicines. Old photos can help too.

One pattern I see often is an adult in their 30s or 40s who has been told for years that their joint pain, fatigue and dizziness are separate problems, or anxiety. They have seen several specialists. When I look at everything together, the hypermobility, the racing heart on standing and the reactions to food or heat all fit one picture. Once their care follows that one picture, many of them feel understood for the first time and start to make steady progress.

EDS affects all sexes, but women are diagnosed more often. In a national study from Wales, 70% of people with an EDS or hypermobility diagnosis were women.⁸ Many women notice symptoms change around puberty, pregnancy, their cycle and perimenopause.

Common symptoms include:

A safety note. If you have a family history of sudden artery or organ rupture, ask about testing for vascular EDS. It is a different type with different risks.¹

Conditions that often show up alongside EDS and HSD include POTS and other forms of dysautonomia, mast cell activation syndrome (MCAS), chronic fatigue, anxiety, and gut motility problems.⁴ ⁵ ⁶ In my patients, every one has some hypermobility, some dysautonomia and some mast cell symptoms, and how strong each one is varies a lot. That is my experience, not a proven rule for everyone with EDS.

Yes, EDS runs in families, and most types have a known gene.¹ For hypermobile EDS, research groups are still searching for the genes involved, but it clearly clusters in families. If you have it, a parent, sibling or child may have signs too, even if they have never been told.

It can be. Some people with EDS work and exercise fully, while others have pain, fatigue or fainting that limit daily life. Whether it counts as a disability for work, school or benefits depends on how much it affects you, not just the label. Notes from your doctor that describe what you can and cannot do safely carry more weight than a diagnosis alone.

If every workout seems to end in a new injury, the problem may be the kind of exercise, not you. Strength training is one of the most important long-term tools for EDS. Your ligaments are loose, so your muscles have to do more of the work of holding joints in place. Stronger muscles can mean fewer subluxations and less pain. Studies of physical therapy in hypermobility support this kind of training, though most studies are small.³

Exercises that tend to help:

Exercises to approach with care:

Start low and go slow. Many flares come from doing too much on a good day, so a steady plan beats a big push.

These three conditions show up together far more often than chance would predict.⁵ ⁶ Researchers are still working out why. This is the working model I use, based on what I see in patients, while research continues.

For someone with EDS, this means a joint plan alone often stalls. If dizziness keeps you off your feet, you cannot build the muscle your joints need. Here's what treating them together can look like.

A story typical of what we see

Picture a woman in her mid 30s who comes to us with sore shoulders and hips most days, frequent small subluxations, and dizziness when she stands up. She has stopped exercising because every attempt seems to cause a new injury. We work on how she positions her trunk and pelvis, add sensory input and compression, coordinate with her physical therapist, and treat her dizziness and mast cell symptoms in the same plan. About eight months later, she is strength training twice a week, having fewer subluxations, and walking without planning her day around pain. She still has flares, but she knows what to do when they come.

This is a composite of patients we see, not one real patient, and details have been changed. Everyone's progress is different.

Here are the four steps I mentioned at the top, and how they play out for EDS:

These steps rest on a few beliefs, built from what I see in my own patients.

Muscles have to do what ligaments can't. Loose ligaments don't hold joints well, so the muscles around them need to take over.

Movement quality matters as much as strength. Hypermobile people often lean on big muscles away from the trunk and compensate without knowing it. We train trunk control and clean movement patterns.

Strength is not the same as leverage. How you stand and hold your body decides which muscles you can actually use. We work on position so the right muscles can do their job.

Hypermobile bodies need more sensory input. We look at how your feet sense the ground, your vision, and whether your bite is even. Joint compression exercises and compression garments help too.

Physical therapy is essential, and it is not the whole picture. PT builds strength and good movement. We cover the pieces PT often misses and work closely with your therapist.

If you're wondering what working with me actually looks like, here are the questions I hear most often.

How is treatment at the Hypermobility Medicine practice different? I treat hypermobility as part of a bigger picture, in a practice built around four things that are hard to find together. First, we understand it from the inside, because hypermobile EDS runs through three generations of my own family, including my son and my granddaughter. Second, everything is under one roof. I look at your joints, dysautonomia and mast cell symptoms in one plan, and I also address sleep problems and GI dysfunction, since an MCAS or dysautonomia component is typically driving them. For patients whose issues stem from the cervical spine, our team reviews eye imaging to look for signs of raised pressure in the head. And most importantly, strength and rehab coaching is built into the practice. That brings me to the third point: I am trained in the principles of biomechanics and rehabilitation along with medicine, so the way you build joint stability is part of your medical care, and we share that guidance with your physical therapist. Fourth, our care is longitudinal: we start with a two-hour diagnostic visit, and members are then seen about every 60 days, with electronic check-ins about every two weeks so we can adjust your plan as your symptoms change.

How much does it cost, and do you take insurance? We are out of network and self-pay, so we do not bill insurance for visits. The diagnostic visit is two hours long and $1,500. Ongoing care in membership is optional and costs $425 a month, or $385 a month on the annual plan, and if you join, the diagnostic fee covers your first month. You can still use your insurance for the medicines I prescribe and the imaging and labs we order, and you will find full details of how our model works on our Services page.

What happens at the first visit? Your first visit is a two-hour diagnostic visit where I look at your joints, nervous system and mast cell symptoms together. I take a careful history of your joint, skin, gut, heart rate, allergy-type and sleep symptoms along with your family history, and the exam includes the Beighton score and a skin and scar check. I personally believe the Beighton score is rather incomplete, and I rely heavily on my own hands-on exam assessing your joint laxity. We also review your past labs and imaging ourselves, and afterward you receive a written care summary with a phased plan that you can share with your other doctors and your physical therapist.

Do you offer telehealth, and can you see me if I'm not in New York? Yes, we offer telehealth for patients who are physically in New York State at the time of each visit, and we see patients in person near Albany, New York. If you live in another state, you can still travel to New York to be seen in person. Because we are licensed in New York, we cannot yet see you while you are in another state, but more states are coming soon, and if you join our waitlist we will let you know when we can see you.

How do I get started? You start by booking a 20-minute complimentary intake call through our contact form. Our office follows up to set up the call, which is not the diagnostic visit, so we can learn about your joints and your history and see if there's a mutual fit.

If this sounds like you, you don't have to sort out your joints, your heart rate and your reactions one specialist at a time, because we look at all three together.

What happens next: this button opens a short contact form, and our office follows up with you. You'll find pricing on our Services page.

Not ready for a visit? Get Beyond the Joint: one short weekly email of doctor-written articles on hypermobility, POTS and MCAS and how they connect, plus a heads-up when we add new states.

This guide is for education and is not medical advice for your situation.