Hypermobility and Ehlers-Danlos Syndrome Treatment
Did you know that too much flexibility can be a bad thing?
Extra-flexible joints are often celebrated and flexibility is a quality that many people strive toward. But if your joints and hip flexors are too flexible and are regularly being overstretched, it can create lasting issues and chronic tightness in your body.
Hypermobility is more common than most people think.
It’s not a trait reserved only for double-jointed people, gymnasts, and professional athletes. In fact, many people with hypermobile joints don’t even realize it because we may not really understand what a normal or healthy range of motion looks like.
So, let’s take a look at what hypermobility syndrome, now known as hypermobility spectrum syndrome, really is, who it affects the most, and what natural treatment options are available.
What is hypermobility syndrome?
Hypermobility spectrum syndrome has had many names, including “benign joint hypermobility syndrome.” Whichever name you’ve heard before, it refers to the same condition: over-flexible or extra-flexible joints.
While you may associate joint issues to an older demographic, hypermobility largely affects children and adolescents.
In fact, it is estimated that anywhere from 10-15% of healthy children will have hypermobile joints.
In hypermobility syndrome, joints easily move beyond their normal range of motion. These joints will appear “loose,” and children experiencing hypermobility may be seen as “double-jointed.” It can happen in any of your joints. But I am particularly interested in how hypermobility impacts your hip alignment and your iliopsoas muscles, which run from your pelvic bone to your thigh bone.
For many young people who have hyperflexibility, they will grow out of it as they enter adulthood.
However, if they continue to overstretch and overwork their hip muscles and joints - or are experiencing hypermobility as a result of a more severe condition, they may need to seek out professional treatment and intervention in order to prevent hip flexor pain and tightness.
Treatments for hypermobile joints are tailored to the individual. They usually revolve around strengthening joint areas and relieving painful symptoms.
So, if you read the symptoms below and suspect that you or your child has hypermobility syndrome, it’s important to consult a health professional or a physical therapist to help restore healthy joint function and support proper alignment.
Types of joint hypermobility syndromes
Three causes of joint pain and hyperflexible joints are:
1. Ehlers-Danlos syndrome
Ehlers-Danlos syndrome (EDS) is a group of inherited disorders that directly affect connective tissues, joints, skin, and blood vessels.
Ehlers-Danlos syndrome is a very rare condition with around 20,000 diagnoses or less per year and determining whether or not a child has Ehlers-Danlos syndrome requires medical testing. It is often discovered after seeing symptoms like joints that dislocate, over-flexibility, or elastic skin that bruises easily.
Since there are various classifications of Ehlers-Danlos syndrome, not everyone will experience the same symptoms. However, having an unusually large range of joint mobility is one of the most common signifiers. This mobility can be tested with the Beighton score.
Because of excess joint flexibility, dislocation, hip pain, and hip dysplasia can be more common. Infants with Ehlers-Danlos syndrome may even be born with both their hips dislocated.
Ehlers-Danlos hip pain and hip dysplasia
Depending on the severity of their medical condition, children with Ehlers-Danlos may experience frequent dislocation and hip dysplasia.
These frequent dislocations can injure or tear the labrum cartilage. If someone with Ehlers-Danlos syndrome has hip pain, it could be from such a tear. This hip pain will manifest in the front of the hip, and be more prominent when going from sitting to standing or when turning.
Hypermobility can also be exacerbated by unbalanced iliopsoas muscles. The iliopsoas (frequently referred to as the hip flexor) is the most important group of muscles when it comes to hip mobility, functionality, and day-to-day quality of life. The iliopsoas muscle - made up of the iliacus and psoas muscles - connects our hip to our thigh, and runs up into our lower back.
Because the iliopsoas stabilizes our body at the core - and directly impacts our lower back, pelvic bone, hip joint, knees, and the surrounding areas - a tight hip flexor can wreak havoc on your entire body’s alignment. Tight iliopsoas muscles can be a reaction to hypermobility, overworking themselves in an attempt to stabilize your body. They might present as knee pain, lower back pain, hip pain, or the sensation of tightness in the hips and pelvis.
2. Marfan syndrome
Marfan syndrome is a genetic condition that directly affects the body’s connective tissue. Physically, Marfan syndrome is somewhat more recognizable because most people living with this medical condition are tall and thin, with long limbs and scoliosis symptoms. They also typically have unusually flexible joints.
Because the condition is caused by an imbalance of proteins that help develop connective tissues, Marfan syndrome most commonly impacts the heart, blood vessels, bones, joints, and eyes. Other than spinal and heart conditions occurring, Marfan syndrome can cause musculoskeletal abnormalities.
Some of the earliest signs of Marfan syndrome, though, are problems with bones and joints. These skeletal features of Marfan syndrome usually result in long bones and loose, stretchy ligaments - making the joint connections act like overused rubber bands.
The looseness of the joints combined with the body’s natural dependence on the hip joint for support in many daily activities, can lead to Marfan syndrome hip dysplasia.
3. Down syndrome
Down syndrome is one of the most common genetic disorders. The CDC has estimated that 1 in every 700 babies fall somewhere on the spectrum of having Down’s syndrome. And while it is quite common, medical problems and developmental delays vary from child to child.
Due to growth delays caused by the disorder, children with Down’s syndrome often experience issues when it comes to the development of their bones and joints. If parents and doctors can catch these musculoskeletal issues early on in a child’s development, it can drastically decrease the likelihood of joint problems later in life.
Children with joint mobility problems from Down syndrome often experience joint instability. As infants, they may struggle to support their head and neck. As they age and begin to walk, knee and hip joint instability become more of an issue. Joint dislocation in these areas may also be frequent.
6 hypermobility syndrome symptoms
With such varying degrees of joint hypermobility, and severity of medical conditions that cause hypermobility syndrome, not everyone will experience the same symptoms. Symptoms are most obvious during physical activity - but they can even occur while resting.
1. Muscle pain or weakness
Whenever there is a weakness or extra flexibility within a joint, the surrounding muscles must work harder to maintain support. For your hip joint, these muscles are the iliacus and psoas muscles. One main function of these muscles is to provide stability. So, if there is instability in the joint, the iliopsoas muscles will tighten and overcompensate to help establish equilibrium. However, that tightening in one area of your body - or just on one side - can cause your muscles to unnaturally pull on another part of your body.
For example, I often work with individuals who have a slight tipping of the pelvis, or an unnatural curvature in their lower back. Naturally, they are often complaining about back pain. But we often find that the culprit was a tight iliopsoas muscle that has refused to loosen its grip on the upper part of the pelvic bone.
It’s important to know that muscle strain can often feel like the pain is stemming from the joint or bone. However, the pain is often your iliopsoas muscles making themselves known because they are fatigued, torn, too tight, or sprained.
2. Joint pain
Joint pain usually occurs in the ankles, knees, and hips, generally after activity and at night while resting. Since most school sports, recess games, and daily activities involve being on our feet, and our pelvis and core must constantly work to stabilize us, our lower extremity joints take the brunt of the work each day. Certain movements may cause joint pain immediately, whereas other times the activities cause swelling and discomfort after the activity has ended.
3. Joint stiffness
When a joint is overstretched or experiences a small amount of damage, our body works to heal and protect the area. In many cases, inflammation and fluid collects within the joint to protect it and your muscles may work harder to protect it. In this example, inflammation is your body’s natural response to trauma and will heal over time. But when those joints haven’t fully recovered or you can’t get a proper release in your muscles, it can become a chronic issue.
4. Injured or dislocated joints
Being “double-jointed” or being able to dislocate joints easily are tell-tale signs that a person has hypermobility syndrome. With frequent joint dislocation comes a high likelihood of injury. The most common joints to be dislocated are the knees and shoulders, but it is possible for young children - and even adults - to dislocate their hips as well.
When a joint is dislocated, the connective tissues surrounding the joint can be damaged. Ligaments, tendons, and even cartilage can tear, especially if a dislocation occurs forcefully or often. If left untreated, torn cartilage, ligaments, and tendons can lead to more serious injuries or medical issues. For example, injured cartilage can lead to chronic pain in hypermobility syndrome.
5. Low blood pressure
An unlikely symptom of hypermobility syndrome is low blood pressure. Because of soft or weak muscles, blood can’t circulate properly. This can lead to other symptoms like fainting or lightheadedness, especially when going from sitting to standing.
6. Reduced fitness level
With chronic pain, muscle weakness, and joint stiffness, a reduced desire to exercise is common. A reduced fitness level is usually a result of discomfort.
This can lead to a domino effect of other issues like obesity, depression, and loss of muscle tone. With less muscle tone, posture and joint stability also decrease. As posture worsens, back pain, difficulty balancing, and headaches can become more prevalent.
This is why keeping the muscles strong and your joints stable is important if you are prone to hypermobility or are undergoing Ehlers-Danlos syndrome treatment. The muscles need to hold the joints and bones in their correct placement since the connective tissues cannot.
Hypermobility and Ehlers-Danlos syndrome treatment
Knowing how to treat hypermobility syndrome varies from case to case. Since there are many causes, treating hypermobility syndrome symptoms and pain is usually the first step. As symptoms ease, and hypermobility syndrome pain relief is discovered, more targeted treatments can then be introduced.
Physical therapy
Physical therapy is often used as a hypermobility and Ehlers-Danlos syndrome treatment. It is a successful treatment for hyper-flexibility because the muscle groups surrounding problem joints can be released, balanced, and then strengthened to better support your joints.
If a patient is using physical therapy to treat hip pain from hypermobility syndrome, a full release of the iliopsoas muscles is crucial. Of your two iliopsoas muscles, your iliacus is much more difficult to reach. It’s hidden in your abdomen and requires a special angle of applied pressure in order to release. And, because of it’s difficult location - and tendency to overcompensate when hip joint or hypermobility issues arise - it is often the cause of hip flexor pain.
The iliacus and psoas muscles can be thought of as being a rubber band holding a stack of cards together. The spine, pelvis, and hip all need to be lined up properly and held into place with some - but not too much - flexibility. When there is hypermobility present, such as with Ehlers-Danlos syndrome, it can hinder your muscles’ ability to maintain this balance in your body.
A skilled therapist will be able to locate the internal point of the iliacus muscle where it connects to the top of your pelvic bone and apply pressure at the correct angle to give you almost immediate release. And, when you are at home, you can recreate the therapist’s technique with the Hip Hook, a tool made specifically to release your iliacus muscle by applying direct prolonged pressure created by your own body weight.
Exercise and strength training
Many patients that have hypermobile joints experience joint pain, so they stop doing physical activity. However, this is counterproductive, as a lack of activity can weaken important joint supporting muscles and can also cause weight gain.
Excess weight gain often leads to unnecessary and avoidable stress on the joints themselves. As such, strength training to lose weight and increase joint stability is essential in Ehlers-Danlos syndrome treatment.
Surgery
While surgery should not be the go-to treatment, it is an increasingly common necessity in Ehlers-Danlos syndrome treatment due to damaged joints. Many patients that experience chronic pain with hypermobility syndrome end up needing surgery to reconstruct joint tissues like cartilage and tendons.
Hypermobility syndrome pain relief
Managing hypermobility syndrome will be different for everyone, and may change with age. However, finding pain relief is the most important.
If you are looking for effective hypermobility pain relief or Ehlers-Danlos syndrome treatment from home, the Hip Hook is the most targeted hip flexor release tool available. The unique and specific design provides deep pressure relief within the hip’s iliopsoas muscles. It has been developed and tested by a certified physical therapist and effectively resolves hip pain caused by a tight hip and twisted core - without needing to visit a practitioner each time for relief.
FAQs about hypermobility
Why can hypermobility be a problem?
Hypermobile joints are susceptible to frequent dislocation, which can cause injury or to the labrum cartilage, resulting in pain. The muscles surrounding hypermobile joints can become tight from overworking to stabilize the loose joint.
Should I stretch if I’m hypermobile?
If you are hypermobile, the muscles and joints in your body are already very flexible. Continuously stretching can lead to over-stretching, which makes your joints less stable. The surrounding muscles may respond by holding tension in an effort to protect the body and create stability. While some stretching can still remain a part of your routine, you may experience more benefits in how your muscles and joints feel by adding in more strengthening and muscle release.