Understanding neck hypermobility and craniocervical instability (CCI)

Estimated reading time: 7 minutesI get asked about neck pain so often in the hypermobility community, and it’s not hard to see why.

A large-scale international survey found neck pain to be the most frequently reported chronic pain site for people with hEDS and HSD (1).

Proprioception and muscle endurance of the neck are essential for functional stability (2). We often have issues with this in hypermobility due to joint instability, muscle strain, poor posture, and ligament laxity. Neck pain is also commonly accompanied by headaches (3).

In a recent study of people diagnosed with a hypermobility condition, two-thirds reported headache, neck pain, neck instability or clicking, facial pain, or a combination of these (4). While it is hard to talk about one without the other, we will focus on the neck in this post.

This is a complex topic as the neck doesn’t exist in isolation and can be impacted by the muscles and joints both above and below.

What factors contribute to neck pain in hypermobility?

The neck doesn’t exist in isolation, so several factors often contribute to neck pain in hypermobility at the same time. Some of these include:

How does the TMJ affect neck pain in hypermobility?

Temporomandibular joint (TMJ) hypermobility is associated with neck myofascial pain (5). Headache and neck pain were the most frequently reported co-occurring conditions reported by a group of people with EDS and TMJ pain (6).

TMJ disorders are also associated with craniocervical instability (7). While it can be hard, finding a hypermobility-aware jaw pain specialist can be beneficial. Anecdotally, orofacial myofunctional therapy may also help.

How does proprioception affect neck pain in hypermobility?

Proprioception is the ability to tell where we are in space.

In a group of people diagnosed with generalized joint hypermobility (based on a Beighton score of >4/9), those with neck pain had a difficult time returning the neck to a previously held position due to poor proprioception of the neck. Those without neck pain were able to do this much more easily (2).

Forward head posture

With every inch the head is positioned forward, it is estimated that an extra ten pounds is added that the upper back and neck must support (8).

The deep and rear muscles of the neck work together to protect the cervical spine (first seven vertebrae) from the forces of gravity. This allows the neck to maintain stability during daily activities.

It is thought that when the muscle function is impaired, there is a disruption in the balance between the muscles in the front and back of the neck, which will result in the loss of the natural curve of the neck (cervical lordosis). This could contribute to neck issues (2)

Is neck hyperextension the same as neck hypermobility?

These two terms come up together often, but they describe different things.

Hyperextension is a movement: the neck bending backward past its typical range.

Hypermobility is a trait: joints that move further than expected because the ligaments and connective tissue are more lax.

For people with neck hypermobility, hyperextension tends to happen more easily and with less of a natural stopping point. The ligaments that would usually limit how far back the neck bends are not providing the same resistance.

You can hyperextend without being hypermobile. The difference in hypermobility is that the usual structural limits on that movement are less reliable, which is why building whole-body stability matters more than trying to avoid specific movements.

Craniocervical/Upper Cervical instability is common in hypermobility

Craniocervical instability (CCI) — also called upper cervical instability (UCI) — is excessive movement in the joint where the skull meets the top of the spine. This is something I get asked about frequently.

This is what people often describe as the neck feeling like it can’t hold the head up, or a ‘bobble-head’ sensation.

Upper cervical spine hypermobility can cause headaches directly in response to certain neck movements like lateral rotation and flexion (5).

Upper cervical instability (UCI) is instability in the joint between the atlas (C1) and occiput (C0, base of skull). This is called Atlanto-occipital/craniocervical instability (AOI or CCI).

It may also involve the joint between the atlas (C1) and the axis (C2). This is called atlantoaxial instability (AAI).

Mild UCI is relatively common, affecting 52-66% of people with hEDS/HSD. Severe UCI is uncommon, affecting only 5% of people with hEDS/HSD. UCI is also likely underdiagnosed (9).

Symptoms of UCI include headaches, neck or facial pain, dizziness, vertigo, nausea, numbness/tingling, shortness of breath, difficulty speaking, vision changes (blurred, tunnel vision, auras), hearing changes, difficulty swallowing, choking, sleep apnea, memory deficits, pre-syncopal episodes (feeling like you’re going to faint) (9).

The Zebra Club’s Scientific Advisor, Dr. Leslie Russek, and an international team of physical/physiotherapy clinicians, researchers, and a hypermobility specialist rheumatologist recently published guidelines for physical therapy treatment and assessment of UCI.

For a diagnosis of UCI or Craniocervical Instability, three criteria must be met:

• Symptoms are consistent with musculoskeletal and/or neurological UCI.
• Symptoms are altered by neck movement or position. For example:
  • Symptoms increase with leaning forward or looking down
  • Symptoms increase with neck motions like flexing, extending, or rotating
• Mechanical irritability with a physical exam

Patients are classified as having low, moderate, or high “irritability.” This means how irritable the neck is with motion and manual therapy, or “mechanical irritability”.

This is based on how severe the condition is, how easily it flares, and how long it takes for symptoms to calm down after flaring. The authors also state that high irritability is likely uncommon.

Importantly, they point out that symptoms may change from day to day and progress towards lower irritability as patients improve. They stratified their recommendations based on the level of irritability.

Managing hypermobility and CCI/UCI in the neck

Here are some of the recommended interventions that were deemed safe for all levels of irritability (9), all of which I find helpful in my clinical practice and in The Zebra Club.

• General education about hEDS/HSD and UCI
• Education in posture and body mechanics
  • Sitting, standing, and sleep posture, positioning, and body support
  • Body awareness and mindfulness in various positions (sitting, standing, lying down)
  • Functional training for posture and joint protection for essential daily activities (like bathing, brushing hair, washing hair, etc)
• Relaxation and autonomic nervous system balancing (not requiring neck movement)
• Breathing (diaphragmatic or slow breathing)
• Education in pain neuroscience 
• Self-care “toolbox”
  • Pain management strategies like TENS, topicals, heating pads, relaxation, etc.

I would add:

• Avoid stretching the neck – this can cause instability and pain
• Listen to your body – if an exercise causes pain, discontinue it.
• Little and often – consistency is key to building stability.

How does neck hypermobility affect daily life?

Neck instability can pose challenges to daily activities and overall quality of life in the hEDS/HSD community.

• Pain and discomfort can limit activities, and routine tasks can become difficult. Many patients report that things like visiting the hairdresser or the dentist are challenging.
• The use of ergonomic tools and furniture can help. Be mindful of how you use your phone or read a book. Some find glasses like these can be helpful when the neck is flaring.
• You’ve probably heard of text neck, this can be a major contributor to neck pain, and something we can address with practice.
• Driving the car and needing to rotate the head can mean that driving is avoided. If you are a passenger in a car, it is worth looking into a cervical neck brace to support the neck over bumps and turns.
• Fatigue – Overcompensating for instability can lead to increased fatigue.
• Pacing – prioritize rest and pacing
• Sleep disturbances – neck pain can disrupt sleep and lead to a vicious cycle of pain and fatigue. Consider your pillows and the type of mattress or support you might need.
• For activities like cleaning, cooking, and carrying groceries, try to use tools that minimize strain. You can get long-handled dusters, for example. An occupational therapist may be able to work with you to find adaptations for your situation. And definitely, ask for help.
• Clothing choices – when your neck pain is in a flare, choose clothing items that are easy to take on and off. Maybe a shirt over a pullover or sweatshirt.

Essential exercises for neck hypermobility

Exercises for a hypermobile neck need to start from the whole body upward, with caution around common prescriptions like chin tucks and neck isometrics.

• Proprioception exercises are key. As mentioned above, the ability to position the cervical joint and maintain muscle endurance (flexor and extensor holding capacities) was impaired in hypermobile patients with neck pain (1). Many therapists recommend the use of a laser light to give biofeedback on this positioning.
• A common mistake often made with the hypermobile neck is to jump in with neck exercises. When I work with neck instability, including CCI and AAI, I never start with the neck.  The head and neck need to be supported from below, all the way down to the feet.
• Chin tucks are often prescribed, but I would heed caution with these with irritable necks. If not performed correctly, they can lead to shearing of the cervical vertebrae and can cause neurological issues. These are not recommended for people with high levels of UCI irritability (9).
• Mindfulness and deep breathing exercises can help calm the nervous system and reduce stress and worry about neck pain. It can also be helpful to speak to a trained therapist about anxiety management.
• Neck isometrics also need to be approached with caution – they are not suitable for everyone and can cause neurological symptoms.
• Exercise can be beneficial, but working with someone who is aware of EDS is essential. Whole-body integration is key for neck instability.

Living with neck instability requires a multifaceted approach that includes physical, emotional, and lifestyle adjustments.

Working with an EDS-aware therapist, like movement specialists, physical therapists, or occupational therapists, can be helpful in minimizing the impact it has on daily life.

Watch: The Hypermobile Neck — CCI, Pain and Stability Exercises

This class goes deeper into the themes covered in this post, exploring neck hypermobility and upper cervical instability with movement classes that reflect a whole-body approach.

As always with neck instability, work within your comfortable range and stop if you experience increased pain or neurological symptoms. If you are highly irritable in the neck, please work one-on-one with a physical therapist first.

FAQ

What are the symptoms of a hypermobile neck?

Symptoms of hypermobility in the neck can present as neck pain, headache, instability, and facial pain. More severe hypermobility linked to upper cervical instability can include symptoms like dizziness, vision changes, nausea, difficulty swallowing, hearing issues, numbness and tingling, and memory deficits.

How can I regain my neck flexibility?

With a hypermobile neck, the goal is stability rather than flexibility. Neck tension is often the body’s attempt to stabilize the area, so stretching can make things worse. I always look at joints above and below, not just the neck itself.

How do you treat neck hypermobility?

Treating neck hypermobility requires a whole-body approach. This means addressing posture and body mechanics, rebuilding proprioception, and increasing strength safely — always starting from below the neck upward. Working with a hypermobility-aware physical therapist is strongly recommended.

What does hypermobility in the neck feel like?

People often describe it as the neck feeling unstable, clicky, or like it can’t fully support the head, sometimes alongside dizziness or headaches. It’s a subjective, whole-body experience rather than a single clinical sign.

Is neck hyperextension a sign of hypermobility?

Neck hyperextension, where the neck moves further back than expected, can be a sign of underlying joint hypermobility, though it can also happen for other reasons. It’s worth discussing with a hypermobility-aware clinician if it’s new or painful.

What are the red flags of craniocervical instability?

Red flags include severe headaches, visual changes, difficulty swallowing, and neurological symptoms like numbness or limb weakness. These need prompt medical evaluation rather than home management.

Jeannie Di Bon

Jeannie Di Bon is a movement therapist, educator and author specializing in hypermobility, Ehlers-Danlos Syndrome and chronic pain. She is the founder of The Zebra Club app and the creator of the Integral Movement Method.