Ehlers-Danlos Syndrome and Sacroiliac Joint Dysfunction

Your sacroiliac (SI) joints are the meeting point of your spine and pelvis. These joints can become unstable and painful for several reasons—and one cause is a rare genetic condition called Ehlers-Danlos syndrome (EDS).

What Is Ehlers-Danlos Syndrome?

EDS is a group of 13 connective tissue disorders that can affect different areas of your body. It’s estimated that 1 in 2,500 to 1 in 5,000 people have EDS worldwide, according to The Ehlers-Danlos Society.

All types of EDS are inherited disorders thought to be caused by gene mutations, so people of all ages may have EDS. Scientists have found that at least 19 genes are connected to the disorder.

The most common type of EDS is called the hypermobile type. This type is marked by hypermobile (ie, loose, overly flexible) joints that cause joint instability and pain.

Hypermobile Ehlers-Danlos and the SI Joints

Hypermobile EDS can affect any joint in your body, including your SI joints. You have two SI joints—one on the left side of your pelvis, and another on the right. The SI joints connect your sacrum (the bottom of your spine) to your pelvis (hips).

These joints are small yet mighty, and they can cause a great deal of pain if they become unstable—which is what hypermobile EDS can do.

Hypermobile EDS may contribute to SI joint dysfunction, low back pain, and hip pain by affecting the SI joints’ ligaments and cartilage. The ligaments in your SI joints are among the strongest in your body, and the cartilage around the SI joints acts as a shock absorber between your bones. Healthy cartilage allows for some movement, but hypermobile EDS changes the cartilage and ligaments in a way that allows the surrounding joints to move too much. When joints move too much, it causes pain.

Ehlers-Danlos Syndrome Signs and Symptoms

Signs and symptoms of EDS range greatly based on the type of syndrome you have—different types impact different areas of the body. For example, some people with EDS are most affected in their eyes or teeth, but the hypermobile type causes musculoskeletal problems.

While hypermobile EDS is the most common type, it is also the least severe. Symptoms can vary greatly: Some people with hypermobile EDS have mildly loose joints, but others experience chronic pain from joint dislocation. Infants and toddlers who have hypermobile EDS have weaker muscles, which means motor milestones like sitting, standing, or walking may occur later than babies without EDS.

When hypermobile EDS causes SI joint dysfunction, the main symptom is low back pain. Other common symptoms include radiating pain through the hips, groin, buttocks, and back of the thighs.

In addition, a common sign of SI joint dysfunction associated with EDS is called an upslip. Upslips occur when one or both pelvic bones moves up, resulting in a feeling of a “squished” spine

Diagnosing Ehlers-Danlos Syndrome

A first step toward a hypermobile EDS diagnosis is a Beighton test, which your doctor or physical therapist uses to measure hypermobility. If you score a five or greater, that indicates hypermobility. If you receive a positive Beighton test, your health care provider may refer you to a geneticist who will confirm the presence of EDS.

Your doctor has exams and tests to determine if you have SI joint dysfunction associated with EDS, but it can be challenging because the primary symptom of SI joint dysfunction—low back pain—is so common with other spinal disorders.

Nevertheless, your doctor may use several tests to identify whether the source of your pain originates in your SI joints, including diagnostic injections and physical tests.

Ehlers-Danlos Syndrome Treatments

EDS has no cure, so no treatment can completely rid you of the disorder. However, if you have SI joint dysfunction associated with your EDS, you have several treatment options that can help stabilize the SI joints and minimize symptoms.

In most cases, the following non-surgical therapies for SI joint dysfunction can provide sustained relief.

• Bracing with a trochanteric belt: People with SI joint dysfunction and EDS may find relief wearing a brace called a trochanteric belt. This supportive device eases pain and reduces inflammation by stabilizing the pelvis and preventing excessive SI joint movement.

• Physical therapy and gentle exercise: A physical therapist can teach you exercises designed to strengthen and improve flexibility in your SI joints. Low-impact exercises, like aquatics or hydrotherapy, can also help ward off pain and improve total spine health.

• Medications and therapeutic injections: Your doctor may prescribe an anti-inflammatory drug or other medication to reduce pain in your SI joints. Additionally, you may be a candidate for an SI joint injection. You may have received an injection during the diagnostic process, but injections can also provide pain relief. These injections may also be administered prior to SI joint surgery.

If your conservative therapy plan hasn’t provided relief, your doctor may discuss the option of SI joint fusion surgery. The procedure involves fusing one or both SI joints to prevent the joints from moving. The overall goal is to permanently stabilize the joints and relieve pain.

There is no cure for Ehlers-Danlos syndrome, but that doesn’t mean that you can’t enjoy a full and happy life. If you have sacroiliac joint dysfunction associated with your EDS, talk to your medical team about pain prevention strategies and therapies that may help stabilize your joints, reduce pain, and restore your quality of life.