Nociplastic pain, hypermobility, and a sensitized nervous system

Estimated reading time: 6 minutes I’ve asked Dr. Leslie Russek, scientific advisor to The Zebra Club, to collaborate to learn about nociplastic pain and how to regulate a sensitized nervous system.

Dr. Russek has joined me previously to explain that there are 3 types of pain – neuropathic, nociceptive, and nociplastic. Each type of pain requires a different approach to management. Chronic pain is a common experience for those of us with hypermobility or EDS. The good news is, there are things we can do to address each type. Here we explore some research and Dr. Russek shares her insights on how to manage nociplastic pain in hypermobility.

Nociplastic pain is due to sensitive nerves that have changed to become better at processing pain. This pain needs to be managed quite differently than neuropathic and nociceptive pain, or “Issues with the Tissues.” You can have a combination of the different types of pain, and the “mixed pain” has been used to describe conditions that might have components of all 3 types of pain (1).

A sensitive nervous system is in a constant state of alarm. Peripheral nerves are usually sensitized by inflammation, so management of inflammation can calm the nerves. The central and autonomic nervous systems may be sensitive because of current stress and anxiety, poor sleep quality, a history of trauma, or inflammation. The good news is there are strategies we can try to help regulate.

The definition of nociplastic pain

Nociplastic pain can be defined as “pain arising from the altered function of pain-related sensory pathways arising from altered functioning of the periphery and central nervous system causing increased sensitivity (1)”.

There are theories as to biologically how this may happen including hyperresponsiveness in pain perception in the brain, decreased pain inhibition in the brain, differences in pain signaling to and from the spinal cord, immune system activation of glial cells (cells around the nerves), differences in peripheral nerve signaling and more (2).

There is also no known cause, though it is thought that the biopsychosocial model of pain is important. Common predisposing factors may include a family history of pain, trauma, history of pain experiences, or a combination of these (1).

Pain research in hypermobility

There have been a few studies on the pain mechanisms involved in hEDS, and research is still very much lacking. One study found a significant increase in sensitivity to pain (induced by pressure) in a small group of woman with hEDS (n=22). hEDS subjects reported pain at lower pressure thresholds than age-matched controls. Researchers conclude this may indicate a sensitized central nervous system (3).

A similar method was used in another small study in 20 women with hEDS. They assessed pain in response to pressure, however this time they looked at temporal summation of pain or TSP. TSP occurs when a repeated and identical pain stimuli are applied, yet it is perceived as an increasing pain sensitivity (despite the stimuli remaining the same). TSP is normal, however, in chronic pain, it is often exaggerated and occurs earlier. They found TSP was significantly increased in the hEDS group compared to controls.

Another research group found altered endogenous pain inhibitory control in hEDS (4). Endogenous inhibitory pain control is a normal physiological part of the pain processing system. They found an increased responsiveness to pinprick stimuli in a small study group (n=23) of hEDS patients compared to age and sex matched controls. They concluded that this points to a deficit in the inhibitory pain control system that may lead to central sensitization. Together these studies point to a role for a sensitized nervous system in people with hEDS, yet more research needed to confirm this.

Symptoms of nociplastic pain

You should suspect nociplastic pain if:

• Pain seems disproportionate to the amount of tissue damage or exists/occurs when there is no or no new tissue damage
• If the pain distribution doesn’t make sense anatomically
  •  For example, nociceptive pain is localized and makes neuroanatomical sense – it may be exacerbated by a specific movement (ie. you sprained your ankle and the ankle hurts when it is moved). Nociplastic pain, on the other hand, is often more generalized and widespread (5).
• Other senses are also over-sensitive, such as sensitivity to smell, sound, or light
• Pain increases when you are stressed or anxious
• You have a history of physical or emotional trauma, especially in childhood.

According to the International Association for the Study of Pain, there are 4 criteria that are assessed for a clinical diagnosis of nociplastic pain (6):

1. Pain – Chronic pain, that has a more widespread distribution that cannot be attributed to neuropathic or nociceptive pain
2. Evoked pain hypersensitivity – dynamic allodynia (pain from movement across the skin), static allodynia (pain from a light touch or pressure on the skin), heat or cold allodynia (pain from hot or cold). Allodynia is pain from a stimulus that would not normally produce pain.
3. History of pain hypersensitivity in the region of pain from touch, pressure, movement, heat or cold
4. Presence of comorbidities: increased sensory sensitivity (sound, light, odor), sleep disturbances, fatigue, cognitive problems

It is considered possible nociplastic pain if you have #1 or #2, and probable if you have all 4 criteria (6).

Ways to manage nociplastic pain

Management of nociplastic pain involves calming the nervous system to decrease the perception of danger.

• You need to feel safe for the danger alarm to quiet down. It may help to put your body into a safe, supported position, such as lying down with appropriate pillows.
• It helps to avoid negative thinking patterns, such as panicking that you will always be disabled by your pain. Every time you think or worry about your pain, a little bit of neurotransmitter is released in your brain to increase pain. Reframing how you think of pain can decrease this.
• Thinking of pain as discomfort can make it less scary.
  • Remind yourself that you have tools to manage your discomfort.
  • Realize that not all discomfort indicates something is dangerous. This doesn’t mean ignoring discomfort because there may be “issues with your tissues” that you can address.
  • Reassure yourself that you have skills to calm your nervous system and that the alarm will quiet when you do so.

Coping skills like this are part of Cognitive Behavioral Therapy (CBT), which can effectively manage nociplastic pain.

More strategies to regulate the nervous system:

• Diaphragmatic breathing
• Slow breathing Meditation or visual imagery. Some meditations focus on really becoming aware of what you hear, smell, or touch to ground the nervous system
• Small range, slow, and gentle movements in the mid-range of the joints. This can decrease sensitization by showing the brain the feeling of movement can be safe
• Heart Rate Variability (HRV) is a measure of how active the parasympathetic (rest and digest) nervous system is. HRV biofeedback helps some calm their nervous systems.

The Zebra Club includes many of these strategies to help quiet the nervous system including audio meditations, breath classes, and slow gentle movement.

Addressing the Vagus Nerve

The vagus nerve is one of the cranial nerves. It drives the parasympathetic nervous system to calm the central and autonomic nervous systems. Activating the vagus nerve also provides anti-inflammatory benefits that can decrease inflammatory pain and nerves sensitized by inflammation.

While research into ways to activate the vagus nerve is ongoing, we know that slow diaphragmatic breathing, chanting, and humming are effective. Electrical stimulation to the ear also works but isn’t available to most people; ear massage may produce some of the same benefits as electrical stimulation.

Final thoughts from Dr. Russek

Managing nociplastic pain requires us to decrease the perception of danger, calm the mind, and calm the nervous system.

In the long term, regular exercise helps protect the nervous system from becoming sensitive. The trick for people with HSD/hEDS is finding safe forms of exercise that don’t activate the danger alarm. Nutrition and sleep are also important for a resilient nervous system.

It is important to recognize if some of your pain might be nociplastic due to a sensitive nervous system. If it is, you need to address the sensitive nervous system rather than (or in addition to) hunting for musculoskeletal or visceral causes of the pain. Remember that you can’t fix a flat tire by changing the air filter!

If you can figure out what kinds of pain you have, you can pick appropriate strategies to manage them.

Here is a video where I discuss tips to address the nervous system that flares in response to movement.

September is Pain Awareness Month and I am honored to have Dr. Leslie Russek  join me to discuss pain in hypermobility. Dr. Russek PT, DPT, PhD, OCS is not only my colleague and research collaborator, but also the scientific advisor to The Zebra Club where she regularly shares her vast knowledge of hypermobility spectrum disorders.

Literature review/research by Catherine Nation, MSc, PhD

Works Cited 

1. Fitzcharles, et al. (2021) Nociplastic pain: towards an understanding of prevalent pain conditions. The Lancet.
2. Bułdys, et al. (2023) What do we know about nociplastic pain? Healthcare.
3. Rombaut, et al. (2015) Chronic pain in patients with the hypermobility type of Ehlers–Danlos syndrome: evidence for generalized hyperalgesia. Clinical Rheumatology.
4. Leone, et al. (2020) Pain due to Ehlers-Danlos Syndrome Is Associated with Deficit of the Endogenous Pain Inhibitory Control
5. Fernández-de-las-Peñas, et al. (2022). Phenotyping Post-COVID Pain as a Nociceptive, Neuropathic, or Nociplastic Pain Condition. Biomedicines.
6. Yoo & Kim (2024). Current understanding of nociplastic pain. The Korean Journal of Pain.

Originally published September 2023, updated September 2024

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.