The Unseen Pain of Tourette Syndrome: Managing Chronic Pain.

When most people think of Tourette Syndrome (TS), they often picture involuntary movements or vocal outbursts. Thanks to mainstream media portrayals, the condition is frequently reduced to the stereotype of coprolalia (involuntary swearing), despite this being a symptom for only a small percentage of individuals. What is far less known—and rarely discussed—is the chronic pain and musculoskeletal issues that many individuals with TS experience.

For those living with TS, chronic joint pain and muscle strain can become a painful reality. The repetitive and forceful motor tics associated with the condition can place immense strain on the body, resulting in long-term physical damage if left untreated. Despite this, chronic pain in TS remains under-recognised by medical professionals, leaving many individuals without proper support or pain management.

In this blog, we’ll explore how TS-related motor tics can contribute to chronic pain and joint degeneration. We’ll also discuss creative and practical strategies for managing this often-unspoken aspect of Tourette Syndrome.

How Motor Tics Lead to Chronic Pain

1. Chronic Joint and Muscle Strain from Motor Tics

Motor tics in TS often involve repetitive, forceful, or jerking movements, these can include but are not limiting too:

⦁ Neck snapping or jerking

⦁ Shoulder shrugging or rolling

⦁ Eye squinting or blinking

⦁ Hand clenching or finger flicking

⦁ Leg stomping or twisting

These repetitive movements place significant stress on muscles, tendons, and joints. Over time, this can lead to:

⦁ Microtrauma: Small, repeated injuries that gradually damage joint tissue.

⦁ Cartilage wear: Frequent strain on the same joints can erode cartilage, contributing to stiffness and pain.

⦁ Early joint degeneration: The continuous overuse of specific joints may increase the risk of joint issues at an earlier age of onset.

Example: Someone with chronic neck-jerking tics may develop cervical spine issues, leading to stiffness, limited range of motion, and even nerve compression over time.

2. Increased Risk of Chronic Injuries

Years of untreated or unsupported motor tics can result in chronic injuries, including:

⦁ Tendonitis: Inflammation of the tendons from repetitive movements.

⦁ Bursitis: Inflammation of the fluid-filled sacs around the joints, causing pain and swelling.

⦁ Joint instability: Repeated tics around the same joint can loosen ligaments and reduce joint stability, increasing the risk of sprains or dislocations.

Individuals with TS often report injuries caused by their own tics, such as:

⦁ Dislocated shoulders or knees from forceful, repetitive limb movements.

⦁ Wrist sprains or strains due to frequent hand or arm tics.

Untreated injuries from chronic tics can lead to long-term musculoskeletal issues, reducing mobility and increasing the likelihood of chronic pain conditions like arthritis.

3. Pain Sensitisation and Maladaptive Pain Responses

Individuals with chronic tic-related pain may experience central sensitisation, a neurological condition where the nervous system becomes overly sensitive to pain signals. This can cause:

⦁ Heightened pain perception: Individuals feel pain more intensely than they otherwise would.

⦁ Chronic discomfort: Even minor movements or joint pressure can trigger pain.

⦁ Reduced mobility: To avoid triggering tics or pain, some people limit their physical activity, which can contribute to stiffness and muscle deconditioning.

Example: Someone with chronic shoulder tics may become hyperaware of even mild discomfort, making the pain feel more intense over time, even during normal daily activities.

4. Overlapping Conditions That Increase the Risk

TS often co-occurs with other neurodivergent conditions, which can further increase the likelihood of chronic pain or musculoskeletal issues:

⦁ ADHD: Hyperactivity or impulsivity may lead to more frequent, forceful movements, amplifying physical strain. This is often due to a hyperactive mind.

⦁ OCD: Individuals with Tourettic OCD may engage in repetitive, compulsive movements or rituals, worsening physical wear and tear.

⦁ Hypermobility disorders (e.g., Ehlers-Danlos syndrome): Individuals with both TS and hypermobility are at greater risk of early-onset osteoarthritis, as their joints are already prone to instability.

Creative and Practical Strategies for Managing TS-Related Pain

Although TS-related pain is often overlooked, there are creative ways to reduce chronic discomfort, protect joints, and improve quality of life.

Of course, you must seek medical advice if you are experiencing chronic pain or injury but these are a few tips I have picked up along my journey in managing years of pain from Tourettes.

1. Gentle Exercise and Stretching

Regular low-impact exercise can help strengthen muscles, improve joint stability, and reduce stiffness without overexerting the body. Do what you can manage. Anything is better than nothing! Try:

⦁ Yoga or pilates: Improves flexibility, posture, and joint support.

⦁ Swimming: Provides resistance without joint strain, making it ideal for individuals with chronic pain.

⦁ Tai Chi or qigong: Gentle, flowing movements can reduce stiffness and improve coordination.

⦁ Even a 5 min walk if thats all you can cope with that day

2. Heat and Cold Therapy

Alternating between heat and cold therapy can reduce inflammation and soothe sore muscles:

⦁ Heat packs: Relieve muscle stiffness and promote blood flow.

⦁ Cold packs: Reduce inflammation and numb sharp joint pain.

Example: After a day of frequent tics, applying a heat pack to stiff shoulder muscles can ease tension and promote relaxation.

3. Splints, Braces, and Joint Supports

For individuals with repetitive or forceful tics, using splints, braces, or supports can help stabilise vulnerable joints and reduce the risk of injury:

⦁ Compression sleeves: Provide gentle support for frequently affected areas, such as wrists or knees.

⦁ Kinesiology tape: Can support joints and reduce strain during movement.

Tip: Consult with an occupational or physiotherapist to find the right supports for your individual needs.

4. Physiotherapy and Pain Management Programmes

Working with a physiotherapist or pain management specialist familiar with TS can help:

⦁ Improve posture and body mechanics to reduce strain from tics.

⦁ Strengthen muscles around vulnerable joints for better stability.

⦁ Teach desensitisation techniques to reduce pain hypersensitivity.

Example: Physiotherapists can design tic-friendly exercise plans to strengthen stabilising muscles and improve mobility, although this may need to be funded privately. It is difficult to find professionals skilled in understanding and managing Tourettes Syndrome.

5. Mindfulness and Relaxation Techniques

Since stress can amplify tics, incorporating relaxation techniques into daily life can help reduce their frequency and intensity:

⦁ Progressive muscle relaxation: Gradually tensing and relaxing different muscle groups to relieve tension.

⦁ Deep breathing exercises: To promote calmness and reduce tic triggers.

⦁ Guided meditation or yoga nidra: To lower overall stress levels and improve pain tolerance.

⦁ Relaxation can look like anything including colouring, doing a wordsearch book or anything low impact you enjoy

6. Sensory Regulation and Adaptations

For individuals with sensory sensitivities, managing sensory input can reduce discomfort and lower the frequency of tics:

⦁ Compression clothing: Provides gentle, consistent sensory feedback, which may reduce tics.

⦁ Weighted blankets or lap pads: Can create a calming sensory experience, lowering tic intensity.

⦁ Toe-spreader socks or compression socks: Can reduce foot-related tics and improve circulation.

Example: 5-toed compression socks can reduce toe-scrunching tics by providing even sensory input across the foot.

6. Other areas to consider?

⦁ Holistic therapies – Therapies such as Reiki, acupuncture and regular massage can be highly useful for pain management.

⦁ Epsom Salt baths can provide some relief from sore and tight muscles.

⦁ Cooling eye masks for eye strain

⦁ Consider your workstation at work – does it need adapting, could a sit/stand desk be a consideration? Or a wireless headset to encourage movement?

⦁ Knowing your triggers for Tourettes is also highly important to reduce tic frequency

⦁ Habit Reversal Therapy can be an option for troublesome painful tics.

Final Thoughts: Recognising the Physical Impact of TS

While Tourette Syndrome is primarily recognised as a neurological condition, its physical impact is often underestimated. Chronic pain, joint strain, and musculoskeletal issues are real and valid aspects of the condition, yet they remain frequently overlooked by medical professionals.

If you or someone you know experiences chronic pain from TS, it’s important to:

⦁ Advocate for pain management support and referrals to physiotherapy or occupational therapy.

⦁ Incorporate joint-protective strategies into daily life.

⦁ Seek out specialists familiar with TS who can offer tailored support.

By acknowledging and addressing the pain associated with TS, individuals can find greater comfort, support, and quality of life.

Connect with me at Flourish With Neurodiversity – Neurodiversity Coaching

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