EDS Symptoms: What to Notice and When to Get Checked

EDS symptoms are a group of signs that can show up in the joints, skin, energy levels and other body systems, and they differ a lot from one person to the next. If you keep noticing loose joints, pain, tiredness and bruises, it makes sense to ask what is behind them. This page helps you sort what you notice and decide what to bring to a clinician. It is information, not a diagnosis.

Ehlers Danlos syndrome (EDS) is a group of inherited conditions that affect connective tissue. Connective tissue is the material that holds the body together, in joints, skin and blood vessels. The NHS says there are 13 types of EDS, most of them rare (NHS, 2022). Hypermobile EDS, called hEDS, is the most common type.

Joint EDS symptoms

Joints are where most people first notice something. You might see these:

• Joints that bend further than other people's, such as thumbs, fingers, elbows or knees.
• Joints that click, pop or feel unsteady.
• A shoulder, kneecap or finger that slips partly or fully out of place.
• Sprains that happen easily or take a long time to settle.

Many people are bendy and have no condition at all. Being bendy alone is not EDS. It is the pattern, together with pain and the other signs below, that a specialist looks at.

Skin and bruising signs

Skin can be softer, thinner or more stretchy than usual. Some people bruise after a small bump, or find that cuts leave wide, thin scars. Bruising is very common for many other reasons, including medicines and simple knocks. One bruise tells you very little. A long run of easy bruises, with the other signs, is worth writing down.

Pain and tiredness

Joint and muscle pain is a core part of the picture for many people with hEDS. So is deep tiredness, the kind that rest does not fully clear. Pain may move around the body and change from day to day. The NHS also lists joint pain, clicking joints and extreme tiredness among the signs of hEDS.

For a wider look at how hypermobility and pain connect, see our guide to hypermobility and pain.

Other body systems

Connective tissue is everywhere, so signs can appear in many places. Some people have heartburn, constipation or other stomach and bowel problems. Others feel dizzy or have a racing heart on standing. Our page on POTS and Ehlers Danlos syndrome looks at that link. Some people also have trouble with bladder control.

None of these is proof of EDS. Each has common causes that have nothing to do with it. The value lies in seeing which signs gather together.

Symptoms vary between people and types

Two people with the same type can feel very different. One has mostly sore joints, another mostly tiredness. The types differ too. Classical EDS tends to bring very stretchy, fragile skin. Hypermobile EDS leans towards joints, pain and fatigue.

Diagnosis belongs to a clinician. For hEDS they use the 2017 criteria, which combine your history, a physical examination and family history. There is no confirmed genetic test for hEDS. Some of the rarer types can be confirmed with a genetic test. For how EDS differs from simple hypermobility, read EDS versus hypermobility.

Vascular EDS symptoms: a separate, serious section

Vascular EDS is rare, and it is different from the others. It affects the walls of blood vessels and some organs, which can tear. Most people with bendy joints do not have it. But it matters because it can be life threatening, so it is worth knowing the signs.

• Thin, see through skin, with veins easy to spot, especially on the chest and legs.
• Very easy bruising, often without a clear knock.
• Problems with arteries or with organs such as the bowel.
• A family history of sudden artery rupture, or of a relative who died young from a blood vessel problem.

Sudden severe pain in the chest, belly, back, head or neck is an emergency. So are new or unusual fainting and a sudden change in vision or speech. Phone emergency services now, or get to an emergency department. Please do not wait to see whether it eases. If you think vascular EDS could run in your family, ask your doctor about a referral to a genetics team.

Notice your own joints with curiosity

Alongside your care, you can simply notice. Sit comfortably and let your attention rest on one hand. Does it feel the same size as the other? Where do your fingers feel steady, and where do they feel loose? Do your knees feel easier when you stand with a little give in them?

Nothing here needs to change, and no answer is the right one. As a Feldenkrais® teacher, I find that slow attention can show a person things that a test of how far a joint can bend does not. Many people find that this kind of attention helps them describe their body more clearly to others. Feldy offers gentle lessons in this spirit. Movement does not change the condition itself, and EDS has no cure. You can read more in the Feldypedia article on hypermobility and joint instability or see our hub of exercises for hypermobility.

One thing to do this week

Write down your symptoms by body system: joints, skin, pain and tiredness, then anything else. Add dates, what makes each better or worse, and any family history, especially joint problems, easy bruising or a sudden artery event in a relative. Bring the page to your doctor and ask whether a genetics or rheumatology referral makes sense.

Common Questions about eds symptoms (FAQ)

What are the most common EDS symptoms?

The most common are joints that move further than usual or slip out of place, joint pain, ongoing tiredness and skin that bruises easily. Many people also have stomach and bowel problems or dizziness on standing. Symptoms vary a lot from person to person and between types.

Does having loose joints and bruises mean I have EDS?

No. Loose joints are common, and bruising has many ordinary causes. A diagnosis needs a clinician to look at your history, your family and your body together. Having some of the signs on this page does not mean you have EDS.

Are the symptoms different for hypermobile and classical EDS?

Yes, to a degree. Hypermobile EDS centres on joints, pain and fatigue. Classical EDS often adds very stretchy, fragile skin that scars easily. Only a specialist can tell the types apart, and some types need a genetic test.

What are the signs of vascular EDS?

Vascular EDS is rare. Signs include thin, see through skin, very easy bruising and problems with arteries or organs. A family history of sudden artery rupture is another clue. Sudden severe pain in the chest, belly, back, head or neck is an emergency.

When should I see a doctor about possible EDS symptoms?

See your doctor if several symptoms bother you, if joints slip out often, or if a close relative has EDS or had a sudden artery problem. Ask for a referral to genetics or rheumatology. For sudden severe pain in the chest, belly, back, head or neck, for new or unusual fainting, or for a sudden change in vision or speech, call emergency services.

How is EDS diagnosed?

A clinician uses your medical history, a physical examination and the 2017 criteria for hypermobile EDS. There is no confirmed genetic test for hEDS. Genetic testing can help confirm some of the rarer types.

Can gentle movement change EDS?

No. EDS is an inherited condition and there is no cure. Gentle, slow movement can be a way to get to know how your joints feel, alongside your care team. It does not change the condition itself.