Connect with your body: don’t suffer in silence! - Forward Ability Support

Connect with your body: don’t suffer in silence!

By Martin Heng

National Pain Week’s themes this year couldn’t be more relevant to the SCI community

In the film The Intouchables there’s a memorable and hilarious scene when the new support worker, Omar, pours boiling water over quadriplegic François’s legs and is amazed there is no reaction. It’s an understandably common misconception that paralysed people don’t feel pain. How wrong this is! Not only do we suffer from musculoskeletal pain, but we are also more susceptible to visceral (internal organ) pain and, worst of all, neuropathic (neurogenic) pain. And, to top it all off, the pain we experience is more often than not chronic. So it’s hardly surprising that 80% of people living with SCI report pain as a problem.

This is why National Pain Week – an annual awareness event coordinated by Chronic Pain Australia – is particularly relevant for the SCI community. This year’s themes are also particularly relevant: to encourage people to connect with their bodies, acknowledge their pain, and seek support and advice from others rather than ignore it and suffer in silence. You can learn more about chronic pain in general and events this year from the National Pain Week website. In this article, we’ll explore pain in the context of SCI, which might help you understand and contextualise the pain you are experiencing, and we also offer some advice.

Everyone experiences musculoskeletal pain at some point in their lives. Still, after a spinal cord injury, this pain is limited to areas above the level of your injury or below if your injury is incomplete. It’s more prevalent in people living with SCI who are over 60 or who have been injured for less than five or more than 20 years. Most commonly, pain is felt in the shoulders, wrists, neck or back and as muscle spasms. Things that can worsen it are lifting to transfer, pushing a wheelchair, driving, poor posture and exercise (done incorrectly or to excess). While analgesics may give some short-term relief, people often move onto stronger medications, such as opioids, and/or higher doses to manage pain – all of which can have serious side-effects and long-term health implications.

By far, the most common form of musculoskeletal pain experienced by manual wheelchair users is shoulder pain, reported by at least two-thirds of them. When your shoulders are working as hard as they do to push you around day in and day out for years on end – not to mention transfers, weight shifting and constant reaching, often overhead – it’s vital to take care of them. The importance of good posture and pushing technique cannot be overstated, which is something most people learn in rehab, but also something you should be constantly aware of. If you notice new pain, or if you’re unable to do something you previously could, treat it as a red flag and see your OT or physio for a seating assessment. The solution may be as simple as changing your seat back angle or wheel position, or you may need to adjust your pushing technique. A home/gym exercise programme is also a great idea. Stretching reduces muscle tightness and soreness; it maintains good shoulder range and helps correct postural issues; strengthening increases endurance, helps joint stabilise and reduces the risk of a shoulder injury. You can watch a great presentation on the subject here.

Power wheelchair users aren’t immune from musculoskeletal pain, of course, but it more often stems from inactivity, spasticity and hypertonicity (when muscles are overactive) or incorrect posture. Again, it’s important to notice changes, discuss them with your OT or physio, and arrange regular seating assessments. And again, the benefits of stretching – either active or inactive – as well as strengthening and exercise are enormous.

Visceral pain is less often chronic but is more likely to indicate something is wrong that needs immediate attention. If you experience a new pain with different characteristics or a pain that suddenly gets worse without apparent cause, ask yourself whether there have been any changes in your bowel or bladder function. You may need to adjust your bowel routine or have treatment for a UTI. If you are experiencing abdominal cramps or dull aching in your kidney area or bladder, it’s worth investigating. And, of course, any pain associated with autonomic dysreflexia should be treated as an emergency.

For most people with SCI, neuropathic pain is the most challenging to manage and, for some, the most difficult to bear. It is by its very nature chronic – for those of us who suffer from it, which is most of us, it is a constant companion with whom you have to learn to live. It has been described as hot, burning, shooting, stabbing, electric shocks, icy, squeezing, constricting, crawling, tingling or pins and needles. Someone told me it’s like having their hands in a deep-fat fryer. For me, it’s like the intense burning feeling you get as your hands begin to warm after playing in the snow for too long. For added spice, UTIs, constipation, fatigue, and stress can all make it worse.

Neuropathic pain is certainly the most problematic to treat. Current pharmaceutical treatments include opioids, antiepileptic agents such as gabapentin, pregabalin (sold under the brand name Lyrica), antispastic agents such as baclofen or tizanidine, and tricyclic acid. There are side-effects to all of these drugs, especially in the long term, which is how most of us take them; in some cases, dependency is inevitable and addiction is not uncommon. But for many, none of these “heavy” drugs even works, which is why I have stopped taking most of them.

Traditionally, other suggested remedies for neuropathic pain include meditation, mindfulness, being distracted or gentle exercise. I find that neuropathic pain is most severe after waking (either in the morning or after a nap) and diminishes as time goes by, becoming “background noise” rather than at the forefront of my consciousness, which is confirmation that, in my case, distraction does work.

A more recent and equally or, in some cases, more effective treatment for neuropathic pain (among other benefits) is the use of medicinal cannabis or cannabinoids (CBDs). CBDs can reduce the abnormal neural activity that causes neuropathic pain and help people disassociate. At the moment, it’s not necessarily straightforward to get a prescription for CBDs. Your GP can prescribe them but may need to go through a Special Access Scheme (SAS) or become an Authorised Prescriber. In Victoria, at least, any medical practitioner can prescribe medicinal cannabis if they believe it is clinically appropriate. You can also go through Australian Access Clinics. Additionally, the Lambert Initiative for Cannabinoid Therapeutics, funded by NSW Health and run by the University of Sydney, is currently running clinical trials of cannabidiol for treating chronic pain. Visit the link to find out how you can get involved.

Chronic pain can cause or worsen psychological problems such as depression, anxiety and stress. Apart from the risk of developing a prescription drug dependency, there is also a well-documented risk of self-medication with alcohol or illicit drugs. Rather than fall into that trap, speak to a medical professional or check out the NSW Health Department SCI pain navigator, a decision support tool. You can also see a spinal rehabilitation specialist or a pain management specialist with a referral from your GP, or access in-person pain clinics. You might also consider the free online pain management course for SCI offered by the eCentreClinic, a specialist research clinic and a not-for-profit initiative of Macquarie University.