Welcome back to SetPT’s EDS blog series, Part II! In case you missed Part I, click here to review what the Ehlers-Danlos Syndromes (EDS) are and how they’re diagnosed.

As a reminder, this four-part series will discuss:

I. What EDS is and how it’s diagnosed

II. How we treat EDS in physical therapy and frequently asked questions

III. Tips, tricks, and recommended products to help manage EDS at home

IV. Insight on pelvic health concerns in EDS from our pelvic floor PT, Aimee Schuh

In Part II of this series, I share some of my treatment approaches for EDS and Hypermobility Spectrum Disorders (HSD) and answer a few frequently asked questions (FAQ) I receive in sessions with my patients. Let’s get started!

So what can physical therapy do for EDS? 

Fortunately, there’s a whole lot! I keep a large toolbox of techniques for treating EDS/HSD, which has been invaluable because each individual presents so differently. With that in mind, it’s also important to understand that while one treatment may work well for one patient, it may actually cause a flare in symptoms for the next. No two zebras are identical, after all!

Since everybody is so different, how does a therapist go about assessing what each patient needs?

We start conservatively. I spend the first few visits really getting to know my patient, how their EDS/HSD presents, and how their body responds to different approaches. We typically tackle the most troublesome joints first to get some pain relief so they can live life more comfortably. Then, we get to work to find the source of the problems.

With EDS/HSD, I find it important to only introduce one new treatment technique at a time. This helps me better pinpoint which approaches work best and which aren’t tolerated well. For example, each patient has a different level of tolerance to hands-on pressure, dry needling, tape, joint mobility work, etc. Similarly, I try to avoid changing or adding too many exercises at one time to better track how each exercise is being tolerated. 

What are some of the treatment techniques you like to use?

Manual Therapy

Manual therapy is a broad term that describes the use of specialized, hands-on treatment to manipulate joints and soft tissue. These techniques help to improve range of motion and tissue mobility, control pain, reduce soft tissue swelling, inflammation, and restriction, and facilitate relaxation. There are a few techniques I’ve found helpful for the EDS/HSD population:

  • Soft Tissue Mobilization introduces varying pressures to muscles, fascia, tendons, and ligaments to improve blood flow, induce relaxation, decrease inflammation, break up scar tissue and rigid muscle tissue, and induce healing. Muscles in EDS/HSD often tighten up and spasm to provide stability to overly loose joints. Sometimes, certain muscles are tighter than others. Much like a tug-of-war battle, the tighter muscles “win” and pull joints into painful positions that are not ideal for proper function. By using soft tissue mobilization techniques to relax tense muscles, joints can more easily settle into a proper position. This can significantly improve pain symptoms and muscle function.
  • Trigger Point Release uses deeper pressure on trigger points (taut bands of muscles often referred to as “knots” or spasms) to help them relax. Trigger points often refer pain to other areas of the body, known as referral patterns. Trigger points are deprived of oxygen, which leads to a buildup of metabolic waste and pain. By adding pressure and input to the areas, the body directs blood flow to these “knots” and helps to oxygenate the area. This can help decrease pain in local and referred pain areas as well as decrease the intensity of these spasms. Want to learn more about trigger points and referral patterns? Check out this interactive website or ask your PT to learn more.
  • Joint Mobilizations use passive, gentle pressure on joints to assist in decreasing pain and improving joint positioning and mobility. In EDS/HSD, joints are particularly mobile and often move partially out of place (aka a subluxation). Ensuring that joints are in a proper position prior to adding strengthening and stability exercises is key to proper recovery. We want to strengthen joints while they’re in the proper position to help them function to the best of their ability.

Dry Needling

Dry needling is a technique used to decrease pain and improve muscle function. In my practice, I use a thin acupuncture needle and insert it into trigger points and connective tissues (think scar tissue, tendons, fascial adhesions, and more) based on what my patient may benefit from most. Typically, the needle is inserted to elicit a twitch response, which is a brisk contraction of the muscle fibers, usually around a trigger point. This has been shown to decrease pain and improve a muscle’s ability to function properly, though the mechanism behind it isn’t fully understood.

Dry needling can be uncomfortable, but if it’s the right treatment technique for you, it can make a huge difference in your pain and function. Typical side effects of dry needling can include soreness of the needled area, bruising, and redness. At SetPT, we use sterile techniques to avoid any risk of infection and are trained thoroughly to needle safely.

Dry Cupping

Cupping involves creating suction on the skin using a glass, plastic, or ceramic cup. At SetPT, we use suction devices to remove air from the cup to create the intended effect, known as dry cupping. We do not perform wet cupping, which involves piercing the skin to induce blood flow into the cup. 

Cupping can help to reduce pain and inflammation, improve blood flow to the treatment area, promote relaxation, improve nervous system function, and facilitate healing. It is considered a safe and non-invasive treatment technique and can be helpful for fascial restrictions or those who are too sensitive to tolerate dry needling or trigger point release therapy. Side effects are temporary and can include bruising or skin discoloration, increased sensitivity of the treatment area, and lightheadedness, dizziness, or nausea.

Splinting and Bracing

Because individuals with EDS/HSD have hypermobile joints, the use of splints or braces can be helpful to provide stability and decrease pain. Strengthening hypermobile joints to the point that they’re stable and controllable requires months of dedicated exercise, so we often seek assistance from stability devices to help prevent injury during this process.

To determine if a joint may benefit from a splint or brace, I perform a:

  • subjective assessment, including a patient’s history of pain, joint subluxations or dislocations, and everyday activities that may require assistance
  • hands-on assessment of the joint’s level of hypermobility and strength 
  • visual assessment of how the joint functions with activities such as walking, navigating stairs, gripping objects, changing positions, and more. 

I have recommended splints and braces for the sacroiliac joint (SIJ), low back, knees, ankles, shoulders, neck, elbows, wrists, and more. In some cases, I will measure joints for custom-made splints that fit your needs. At this time, I am measuring individuals with HSD/EDS for ring splints, which provide stability to hypermobile finger and thumb joints. 

Some individuals with EDS/HSD may benefit from bracing beyond my abilities, and I will often recommend they see an experienced practitioner for custom foot orthoses or body compression suits, such as DMO suits.

Keep an eye out for Part III of this series for specific bracing and splinting product recommendations!

Taping

Taping is an invaluable technique used to relieve pain, improve joint stability, improve proprioception (the ability to feel where your limbs and joints are in space), facilitate or inhibit the activation of particular muscles, correct poor biomechanics, and prevent injury. 

In the EDS/HSD population, I often tape to inhibit overactive, painful muscles such as those pesky neck and shoulder muscles called the upper trapezius and levator scapulae. I also use tape on back muscles to “cue” the body to improve posture. One of the most helpful taping techniques I use, however, is to help provide stability and security to particularly hypermobile joints such as the shoulders and knees. 

The only drawback to taping is the risk of skin irritation. Those with EDS/HSD often deal with increased skin sensitivity due to Mast Cell Activation Disease (MCAD) or Syndrome (MCAS), which causes heightened allergic reactions to different stimuli. The adhesive on different types of tape can cause reactions such as redness, irritation, itching, blisters, or skin tearing. In my treatments, I will often use a skin prep wipe to create a skin barrier which can help decrease or eliminate this reaction. It often takes some trial and error, and ultimately, taping may not be the appropriate treatment technique for you if repeated irritation occurs.

Exercise, exercise, exercise

Exercise is the gold standard for treating EDS/HSD in physical therapy. Ligaments and other connective tissues are typically responsible for preventing joints from moving beyond their normal position. In EDS/HSD, these tissues are too stretchy, leaving the joints to move excessively. Unfortunately, we can’t fix these things in physical therapy, so we focus instead on what we can control: muscles. Muscles are the body’s secondary form of joint control. They allow us to move, lift, lower, pull, push, jump, sit, breathe, bend, and more. They also provide much-needed stability to joints when strengthened and trained appropriately.

An Important Message to Those with EDS/HSD

In EDS/HSD, I’ve found that it’s imperative to know how to properly control, feel, or understand muscles before we add complex exercises.  If my patients are experiencing joint dislocations just from sitting or lying around, why would I start them out doing squats, lunges, and other advanced movements? Unfortunately, many individuals with EDS/HSD have had poor experiences in physical therapy because they were prescribed exercises that required too many joints moving at one time without understanding how to properly control any of those joints first. They often felt like failures in therapy because every exercise they did created more pain and dysfunction. This may have even created a disdain or fear of physical therapy or that physical therapy doesn’t work for them, period. If this feels familiar to you, know that this is not your fault and not necessarily your previous physical therapist’s fault, either. You just need a specialized approach, and exercise can still help you immensely! I promise you that. We just need to approach it in a way that works for you.

So how should we approach exercise if everything seems to hurt?

We often start simple and boring! Woohoo! I start with isometric exercises in my sessions, which means we’re activating and strengthening muscles without actually moving body parts or joints around. The muscles aren’t lengthening or shortening; they stay in the same place. We  also must ensure that the joints are properly positioned while we strengthen in this way to help build awareness of how the joint should feel and to then build strength around this proper sensation and position. It’s also an incredibly safe position and reduces the risk of a joint subluxation or dislocation. 

If you’re completing these exercises properly, you should think, “Wow, this looks so easy but feels so difficult.” Just keep in mind that strengthening takes a long time to take effect. It can take months of dedicated, frequent strengthening (multiple times per week!) to notice a difference in strength and pain. So keep it up and know that the investment is worth it.

Strengthening Thrives Off of Proprioception

Strengthening isn’t the only important exercise piece. We also focus on proprioceptive exercises to help teach patients where their joints are in space. This can be helpful for the patient who needs to watch their feet when going down stairs, has poor coordination or balance, or who can’t reach their arm up without their shoulder popping in and out of place. It’s also really helpful for teaching proper posture as well as proper joint alignment with more complex activities like going up and down stairs, squatting or bending down, and more.

Lifestyle Modifications and Education  

With EDS/HSD, modifying activities are sometimes necessary. One of the main components of physical therapy care is helping you to physically thrive and function to the best of your ability every day. Some of the lifestyle modifications I consider with patients include:

  • Adjusting sleep setup, including which pillows to use, the ideal mattress, how to regulate temperature, and positioning using pillows and wedges
  • Modifying home and in-office setup, including adjusting chairs, desks, monitors, mouse and keyboard, and lighting
  • Choosing and using mobility aids such as walkers, canes, and wheelchairs
  • Proper preparation for long car rides or flights, including the use of seat cushions, neck cushions, compression socks, and more
  • Modifications to classroom setups and classes, including seating arrangements and modifications to physical education routines
  • Activity and energy management for daily activities, including how to space out chores and outings and product recommendations for showering, cooking, cleaning, and more
  • Choosing appropriate footwear for different activities

Finally, education is so important to understanding EDS and HSD. I spend a large portion of my sessions teaching patients about each muscle and joint and how they function, nerves and their pathways and how they can impact symptoms, the importance of posture, and why their pain presents the way it does. I use visual aids, such as anatomy apps on tablets, and have started using Musculoskeletal Ultrasound technology to help patients see their anatomy, how it moves, and how it can improve. We also spend time troubleshooting together because, ultimately, my patients know their body best, and I’m here to guide them as their teammate. 

Frequently Asked Questions

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.