Peripheral neuropathy (PN) is far more common than many realise — affecting an estimated 1 in 10 Australians — yet it remains under-recognised and under-funded compared with other neurological conditions.
Philip Reed, Chairman of the Peripheral Neuropathy Support Group (PNSG), lives with PN. His story echoes what many in the community experience: a slow and often frustrating journey to diagnosis, followed by a life of trialling treatments that may or may not bring relief.
“Peripheral neuropathy comes in many different forms,” he explains. “What works for one person may not work for another — and sometimes what works for a few days suddenly stops working.”
Living with PN: Phil’s Experience
Phil was eventually diagnosed after years of pain, which he now accepts as part of his “universe”:
“Seven or eight years ago, I couldn’t stand for more than 15 minutes without excruciating pain. My neurologist told me, ‘There’s no cure. Just try to manage it.’ That was crushing. But in time, I’ve found ways to live with it.”
Medications used for epilepsy or depression sometimes help, but results vary. Devices, diets, supplements, and alternative therapies are frequently trialled.
“People will try anything, because the desperation is proportionate to the pain,” Phil says.
Like many in the support group, Phil has learned that managing PN requires both medical treatment and personal strategies for daily life.
Coping and Self-Management
Living with peripheral neuropathy involves constant adjustment, finding what helps, letting go of what doesn’t, and focusing on ways to make each day more manageable.
Phil says one of the biggest challenges is sleep. Pain often worsens at night, and the quiet hours can make it harder to distract the mind. “On a good night,” he explains, “I’ll manage three short one-to-one-and-a-half-hour sessions, often in an armchair rather than lying flat in bed.” Improving sleep is a common focus among people with PN, who often experiment with positioning, routines, and gentle relaxation to find rest.
He also highlights the importance of distraction as a coping tool. “Just thinking about or doing something that creates a strong emotion means that I’m not focusing on my PN condition,” Phil says. Activities that engage the mind, spark curiosity, or connect people with others can shift focus away from pain, even briefly. Many members use the “Act, Belong, Commit” approach — staying active, maintaining purpose, and building social connections through volunteering, creative hobbies, or music.
Phil and other group members also emphasise the mental side of coping. Small rewards, moments of humour, or simple rituals like making a good cup of tea can lift morale. Feeling some control over daily life through routines, goal-setting, or positive self-talk helps prevent frustration and hopelessness. As Phil notes, managing your mind is as important as managing your pain.
Current Management & Treatment Options
The treatment of peripheral neuropathy depends on the underlying cause. Treatment focuses on removing or addressing the trigger where possible (for example, improving diabetes control or reducing exposure to toxins) and supporting recovery. More commonly, treatment is aimed at managing symptoms such as pain and weakness and improving function and quality of life.
A major global review, led in part by Australian researchers at NeuRA and UNSW, analysed over 300 trials with nearly 50,000 participants. It updated international recommendations for treating neuropathic pain — the type of pain caused by nerve damage, including diabetic peripheral neuropathy, post-herpetic neuralgia and chemotherapy-induced nerve pain.
This review recommends:
- First-line medicines: pregabalin, gabapentin (anti-epileptic drugs); duloxetine (an SNRI); and amitriptyline (a tricyclic antidepressant). These can provide modest benefits but require careful monitoring. It’s important to note that not everyone tolerates these drugs in the same way — side effects can vary, and some people experience mood or sleep changes.
- Second-line options: capsaicin or lidocaine patches and creams. Their pain relief is small but they are safe and often useful for older adults.
- Not recommended: cannabis-based products. Lack of clear benefit demonstrated.
Pain management remains highly individual. As members of the Peripheral Neuropathy Support Group point out, the timing of medication can be as important as the type. Some people find relief by taking doses proactively at regular intervals, while others prefer a reactive approach taking medicine only when pain rises above a tolerable level. Balancing this with how long medication takes to take effect (its latency) is part of daily self-management and discussion with one’s doctor.
Other members note that small, practical measures can also make a difference. Managing swelling in the feet and ankles, using gentle topical heat rubs, and keeping skin well moisturised can help ease discomfort and improve.
Many people find that simple aids and tools make daily life easier. Footbaths or gel packs can provide short-term relief for burning or tingling pain, while using medication organisers, phone reminders, or health-monitoring apps helps keep routines on track. Practical aids such as soft, well-fitting shoes, bedclothes risers, or walking supports can also improve comfort and confidence. Regular gentle movement and stretching help maintain circulation and mobility, even on difficult days.
While diet alone cannot reverse nerve damage, eating balanced meals, staying hydrated and limiting alcohol can help the body function at its best and support recovery alongside medical care.
Importantly, treatment must be individualised.
Navigating the System and Accessing Support
For many people with peripheral neuropathy, one of the biggest challenges is funding the therapies, devices, and supports that may help manage their symptoms. Treatments often involve trial and error, from medications and physical therapies to specialist equipment. Costs can quickly mount up.
This is where the Neurological Council’s NeuroCare Community Neurological Nurses play a vital role. They support people living with PN (and their families) with:
- Navigating the health system: interpreting medical advice, coordinating care between GPs, neurologists and allied health providers.
- Exploring funding options: supporting clients to access programs like the NDIS, My Aged Care, or other financial assistance.
- Advocating on their behalf: strengthening applications and ensuring people are not lost in the system.
- Providing emotional support: walking alongside clients when the pain and paperwork feel overwhelming.
As Kym Heine, Neurological Council of WA’s Clinical Nurse Manager explains:
“Many clients don’t know where to start when it comes to applying for support. We walk alongside them whether that’s pulling together paperwork for funding, linking them to a local physio, or just being there when it all feels too much.”
Research: Hope for the Future
Despite limited investment compared with other neurological conditions, there are important research initiatives underway in Australia. These projects focus on early detection, new treatments, and ways to improve quality of life for people living with peripheral neuropathy:
Diabetic Neuropathy
- Diabetes Victoria and the Royal Melbourne Hospital are trialling a daily combination of over-the-counter supplements over 16 weeks to test their effectiveness in reducing painful diabetic peripheral neuropathy.
- University of Melbourne is studying whether therapies targeting mitochondria, the energy centres of cells, can help reduce diabetic neuropathy symptoms.
- Western Sydney University (NICM Health Research Institute, Dr Orit Holtzman) is leading a clinical study on the safety and effectiveness of medicinal cannabis for adults with diabetic peripheral neuropathy.
Chemotherapy-Induced Peripheral Neuropathy (CIPN)
- The University of Sydney researchers are working to better predict and prevent CIPN, one of the most common and debilitating long-term side effects of chemotherapy.
- University of Adelaide (Professor Joanne Bowen) is leading the TMaC study, funded by The Hospital Research Foundation Group, which is exploring the use of repetitive Transcranial Magnetic Stimulation (TMS) — a non-invasive technique that stimulates targeted brain regions — as a potential treatment for CIPN pain.
- This approach was also highlighted in a major international review (The Lancet Neurology, 2024), which for the first time recommended rTMS for selected patients with neuropathic pain.
From diet-based therapies to advanced screening tools, Australian scientists are working on multiple fronts to improve diagnosis, treatment and quality of life for people living with PN.
While promising work is underway, it’s still a field that receives limited attention. As Phil puts it:
“PN is one of the most common neurological conditions, but hardly any money is being spent on it. Unless people raise their voices, it stays overlooked.”
The Role of Support Groups
The Peripheral Neuropathy Support Group provides a lifeline. Meetings are held monthly at The Niche, Nedlands, where members share experiences, hear from guest speakers, and simply enjoy the company of people who “get it.”
For many, joining the group provides psychological relief as much as practical advice. As Phil says, “The human mind and body can put up with so much more when you’re not alone.”
👉 Find out more or become a member.
Monthly Meetings: 2nd Monday of each month (except January)
Location: The Niche Building, cnr Aberdare Rd & Hospital Ave, Nedlands, WA.
Looking Ahead
Peripheral neuropathy may not yet have a cure, but awareness, research, and community support can make a world of difference. With groups like PNSG, dedicated Community Neurological Nurses, and Australian researchers driving innovation, there is hope that Peripheral Neuropathy will no longer remain in the shadows.
There is also growing interest in holistic approaches that complement medical treatment — focusing on good sleep, diet (especially paleo), stress reduction and overall wellbeing. While scientific evidence for some of these methods is still emerging, many people find that caring for the body and mind together helps them stay resilient and engaged in their own recovery.
