Our therapists can guide you through safe, effective exercises and movements to improve your joint awareness, muscle strength, and to build your confidence in doing the activities you love.

Learn more about Ehlers-Danlos Syndrome / Hypermobility Spectrum Disorders

EDS & HSD

Ehlers-Danlos Syndrome

What is EDS? How do I know if I have it?

EDS is a group of inherited conditions which affects the body’s connective tissue, including your joints, skin, and blood vessels. The most common type of EDS is hypermobile type (hEDS), which we treat at SetPT. Although many types of EDS can be confirmed through genetic testing, there is no genetic test to confirm hEDS. A physician with a strong understanding of EDS will assess your skin, joints, and personal history to determine if you have hEDS. See our tabs below for more information about hEDS.

Hypermobility Spectrum Disorders

Is HSD the same as EDS?

HSD presents similarly to hEDS and is often diagnosed when EDS can be excluded. It can be just as severe as hEDS and must be treated with the same level of care. Whether you are diagnosed with EDS or HSD, we have the tools and experience to take care of you. See our tabs below for more information about HSD.

Ehlers-Danlos Syndrome

What is EDS? How do I know if I have it?

EDS is a group of inherited conditions which affects the body’s connective tissue, including your joints, skin, and blood vessels. The most common type of EDS is hypermobile type (hEDS), which we treat at SetPT. Although many types of EDS can be confirmed through genetic testing, there is no genetic test to confirm hEDS. A physician with a strong understanding of EDS will assess your skin, joints, and personal history to determine if you have hEDS. See our tabs below for more information about hEDS.

Hypermobility Spectrum Disorders

Is HSD the same as EDS?

HSD presents similarly to hEDS and is often diagnosed when EDS can be excluded. It can be just as severe as hEDS and must be treated with the same level of care. Whether you are diagnosed with EDS or HSD, we have the tools and experience to take care of you. See our tabs below for more information about HSD.

What is joint hypermobility and how do we care for it? Learn how a physical therapist can help you manage your condition.

Do your joints often “pop” out of place, or feel like they want to?

In hEDS and HSD, the body’s connective tissue that usually helps support the joints is very stretchy, leading to increased mobility and potential for painful joint subluxations and dislocations. Your joints may feel like they move around more than they should or like they want to give out in certain positions. It is important that you seek out a therapist experienced with joint hypermobility to help you with strategies to stabilize and strengthen your joints and muscles in a safe and effective way. Such methods include taping, bracing, splinting, strengthening exercises, and more.

Why do I get these muscle knots and spasms all the time?

Due to joint hypermobility, patients with hEDS and HSD often experience debilitating muscle spasms. These muscle spasms occur as your body attempts to stabilize an unstable joint, because the ligaments are too stretchy to do so. A knowledgeable therapist is able to help relieve these spasms and give you the advice and tools you need on how to manage your painful spasms at home.

Is it safe for me to exercise if I have HSD or hEDS?

Movement and exercise can be scary, especially if you have a history of joint dislocations or pain with activity. But exercise and activity is one of the best ways to manage joint pain and instability! Our therapists can guide you through safe, effective exercises and movements to improve your joint awareness, muscle strength, and to build your confidence in doing the activities you love.

You shouldn’t have to live in fear.

Injuries can still happen, but our dedicated therapists will work with you to develop ways to prevent and manage your pain and dysfunction. Our goal is to help you move safely and confidently in your everyday tasks and know how to recognize when you’ve overdone it. Fabricating and recommending splints and braces, as well as a comprehensive, holistic plan for addressing your pain is critical in managing HSD/hEDS symptoms and preventing injury.

There are many conditions that are frequently associated with HSD and hEDS.

POTS, dysautonomia, cardiovascular conditions, skin extensibility and irritation, GI issues, headaches, pelvic dysfunction (plug for pelvic PT), anxiety & depression, fatigue, to name a few! At SetPT, our therapists are knowledgeable of the many associated conditions and diagnoses associated with HSD and hEDS and can help you manage your symptoms. 

Teamwork makes the dream work!

At SetPT, we strongly believe in a multidisciplinary approach and will collaborate with your care team to ensure everyone is on the same page. Often, patients with EDS see multiple specialists and providers, which can make care coordination difficult. We have established relationships with many EDS-knowledgeable providers in the area and communicate directly with your team to ensure quality care across the board.

FAQs

Frequently Asked Questions from our EDS/HSD Patients:

When your ligaments are too loose, your joints can move out of place more easily and more often. Because of this, your body employs other structures to provide that much-needed stability. Muscles are very adaptable structures and often tighten in spasm around hypermobile joints to provide as much stability as they can. Unfortunately, this creates that familiar feeling of tightness.

Even though your muscles feel tight, they’re not necessarily too short. Stretching is really only useful when muscles are in a shortened state and limit your joints from moving enough. This often causes other areas to move more to compensate for that lack of motion. In EDS/HSD, joints move plenty, and that tightness feeling isn’t because the muscles are short but rather because they’re knotted and in spasm. I typically recommend avoiding stretching because it won’t actually relieve the tightness created by the knots or trigger points. Instead, you’re stretching already overly lengthened and overly mobile joints, which can make your hypermobility even worse, leading to more pain and spasm. To relieve the feeling of tightness, we instead need to focus on releasing spasms.

There are many hypotheses about how and why trigger points form. Generally, researchers agree that muscle overuse or direct trauma can lead to their development. Much of the muscle is caused by sustained, low-level muscle contractions. Basically, certain muscles are on constantly and never have periods of quiet, which means their chemical balance gets thrown off. Without getting into too much detail, these changes in chemicals lead to muscle pain and tiny contractures which are deprived of oxygen. These little contractures, the trigger points, soon start to send pain signals due to even more chemical imbalances. And the cycle continues. 

Other theories suggest that nerves, which supply muscles so that they can function, play a role. These researchers theorize that, if a nerve signal is restricted for whatever reason, the structures they supply (the muscles) become weak and highly irritable. 

In EDS/HSD, trigger points often form due to muscles being too weak for what we demand from them. Overuse occurs in this case because they just can’t handle the load. Because muscles have even more responsibilities in a hypermobile person, like stabilizing hypermobile joints, it’s really easy for them to constantly be activated and thus overused.

One of the main reasons it takes longer to get stronger with EDS/HSD is proprioception. Proprioception is your ability to feel how your limbs are moving in space, where joints are positioned, and how to control them. If we strengthen joints that we are unable to properly feel or control, we can’t efficiently strengthen them. We must spend sufficient time improving your body’s proprioception before we can start to load muscles effectively to really increase your strength. With that in mind, your muscles are also working hard to stabilize a lot of hypermobility, so they fatigue more quickly and require more rest after fewer repetitions of exercise.