Chronic pain is a prevalent condition that causes significant functional disability and reduced quality of life. In Europe alone, almost one in five individuals report having moderate or severe chronic pain.

The response to the COVID-19 pandemic means that the care of individuals with pain has been significantly impacted. Many services for patients have been cancelled or suspended including out-patient appointments, elective surgeries, and multi-professional pain management services.

While some settings have transitioned care options involving treating individuals online or over the phone (telehealth), many patients with pain have been left without care and find themselves waiting in uncertainty.

Survey evidence from Austria has reported that patients with hip and knee osteoarthritis who had their surgery deferred due to COVID-19 experienced higher pain and anxiety. Similarly, in the UK, a survey undertaken during the most restrictive part of the COVID-19 lockdown reported that individuals with chronic pain reported increased pain intensity as well as higher levels of anxiety, depression, loneliness and reduced levels of physical activity compared to individuals with no pain. Reduced opportunities for social support have also strong potential to contribute to poor psychological health and impact disability levels.

What needs to be done?

Efforts are urgently required to support individuals with chronic pain with their pain management. At the European Pain Federation EFIC we have created a COVID-19 Task Force to distribute new research to doctors, physiotherapists, psychologists and nurses looking for evidence-based information regarding pain treatment of their patients.

Further details can be found here: europeanpainfederation.eu/news/efic-covid-19-task-force

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Living with any chronic pain imposes a heavy economic and social burden. The Pelvic Pain Support Network (PPSN) is a patient and volunteer led charity. Established in 2006, the charity supports those with undiagnosed as well as diagnosed, long-term (chronic) pelvic pain, by highlighting this much neglected area and improving access to care for patients.

What is chronic pelvic pain?

Chronic pelvic pain is defined as either intermittent or constant pain in the pelvic region lasting longer than three months. It presents in primary care as frequently as migraine or low back pain.

The World Health Organization (WHO) has recognised the International Classification of Diseases 11 (ICD 11) work on chronic pain, which takes effect in 2022. This means that chronic pain is now noted as requiring special consideration and treatments; chronic pain can be tracked as a diagnosis or co-diagnosis in an underlying disease, and data such as cost information, treatments, and societal impact of pain can be made more readily available.

What are the challenges for pelvic pain patients?

Nationally, patients face difficulty in being referred for help in managing their pain, despite this being their priority. Services are designed to cater for those with straightforward pelvic pain issues that can be resolved quickly by a single specialisation.

Chronic pelvic pain encompasses gynecological, urological, gastrointestinal, neurological and musculoskeletal causes and it is not unusual for more than one of these to be involved¹. This can present a clinical challenge with regards to assessing, treating and managing symptoms as, traditionally in the UK, there has not been a multidisciplinary approach to pelvic pain.

In complex cases it may be difficult for any single speciality to decide how to progress the care of the patient necessitating referral to a regional pain management centre². NICE recognises the benefit of pain management programmes for chronic pelvic pain³.

What is PPSN doing to improve the situation?

Within the charity, we encourage a multidisciplinary approach and work to change the traditional culture. Our advocacy role involves campaigning on behalf of pelvic pain patients through representation at conferences, meetings, workshops, policy development and events for clinicians and the public. We invite and encourage patients to participate in all aspects of our work and regard developing their skills as crucial.

Chronic pelvic pain encompasses gynecological, urological, gastrointestinal, neurological and musculoskeletal causes and it is not unusual for more than one of these to be involved.

We help educate both the medical profession and the public, by raising awareness in all matters relating to pelvic pain and its treatments. Patients deliver sessions on the “patient experience” for undergraduate nurses and doctors. This forms part of the chronic pain curriculum for nurses and for fourth year trainee doctors in the obstetrics and gynaecology rotation in some UK universities.

The charity was awarded first place in the category “Professional Education” for the European Civic Prize on Chronic Pain in recognition of our work “Patients as Teachers in Health Professional Education”. Patients who deliver this have broader experience of treatment within and outside of the UK, elsewhere in Europe.

We have organised several workshops to encourage cooperation between clinicians and researchers from various disciplines and countries to foster a greater exchange of information and collaboration in the field of chronic pelvic pain.

We encourage research by appropriate institutions that aims to improve the quality of life of those with pelvic pain. PPSN continues to represent those with pelvic pain in many research trials and studies. Several of these have been published and some are ongoing. This involves patient input at all stages of the process from the pre funding application stage through to dissemination of the results. An example of such research is described in the accompanying article.

Information and support for those with pelvic pain and those close to them is available via our website, message board and Facebook page. Patients appreciate information that helps them to understand their pain and what they can do to help manage it. This allows them time to digest information and can facilitate shared decision making.

[1] EAU Chronic Pelvic Pain Guideline https://uroweb.org/guideline/chronic-pelvic-pain/ | [2] The Royal College of Anaesthetists: Faculty of Pain Medicine (2015). Core Standards for Pain Management Services in the United Kingdom. |[3] The National Institute for Clinical Excellence (2017). Endometriosis: diagnosis and management. NICE guideline NG73.

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Among the wide-ranging presentations of chronic pain, phantom limb pain is considered to be the most curious and challenging to overcome. In the United States, about 1.7 million individuals were estimated to be living with limb loss and this number is projected to increase to 3.6 million by the year 2050.

Up to 98% of amputees experience phantom limb in the form of a sensation or pain at some stage in their lifetime. In addition to the profound physical and psychological aftermath of limb amputation, phantom limb pain can be quite debilitating, affecting health-related quality of life. Hence it is crucial for the treating clinicians to be skilled in evidence based recent management.

Over the years, researchers have brought forward different theories to explain phantom limb pain. It is now widely accepted as a form of neuropathic pain involving peripheral, spinal and supraspinal levels. Functional MRI scans have shown cortical reorganisation following amputation with strong correlation with phantom limb pain severity.

Phantom pain can vary in severity and manifest as paraesthesiae – pins and needles; dysaesthesiae – burning/stabbing; and/or allodynia – stimulus that normally does not result in pain.  

A multidisciplinary approach to enable amputees to cope better with pain and to improve their function and quality of life should be the goal.

Assessment and treatment

A thorough assessment, including history, physical examination and specific investigations, is crucial to identify treatable causative factors. Adversities in the residual limb, poorly fitting prostheses, general physical and mental health can all trigger phantom pain.

A holistic approach targeting peripheral – desensitisation techniques, transcutaneous electric nerve stimulation, sonographically-guided steroid or botulinum toxin injection, radiofrequency ablation, surgical excisions and targeted muscle reinnervation; spinal cord stimulation; and central neural mechanisms – pharmacotherapy, mirror reflection-induced feedback, virtual and augmented reality are being practiced with varying efficacy.

Perioperative and intermediate to long-term pharmacological treatment is widely used. Medications prescribed include NMDA receptor antagonists, opioids, anticonvulsants, antidepressants and local anaesthetics. Functional prosthetic feedback is known to be an effective therapeutic tool to reduce phantom limb pain.

Up to 98% of amputees experience phantom limb in the form of a sensation or pain at some stage in their lifetime.

Further studies and a multi-disciplinary approach are crucial

Considering the projected increase in global prevalence of amputation, effective management of acute and chronic phantom limb pain is of paramount importance. Further studies are needed to elucidate the peripheral and central mechanisms responsible. Effectiveness of pharmacological, surgical and virtual reality methods need robust evaluation. A multidisciplinary approach to enable amputees to cope better with pain and to improve their function and quality of life should be the goal.

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Dr Jan Willem Kallewaard

Anaesthesiologist, Amsterdam University Medical Centre and Rijnstate Hospital, Arnhem

Pain specialists call for ‘right patient, right treatment, right time’ approach to the treatment of long-term pain.

Specialists in pain management say that one of the most common problems with health systems is that patients are not referred to the correct treatment for their specific pain at the right time.

This can be due to financial restrictions within health systems, but it can also be due to clinicians’ lack of awareness of the benefits of available therapies and the health outcomes that may be achieved.

According to Dr Simon Thomson, consultant in pain medicine and neuromodulation, there are many different types of pain, and a wide range of physical components to consider for each. In addition, each patient will have psychosocial factors that may impact the outcome of treatment, including the patient’s attitude to their pain and to the available treatments – of which there are now many different types.

However, it’s rare that all these factors are taken into account when a clinician considers making a referral, Dr Thomson believes. He says: “There can be a degree of ‘old school thinking’ among pain clinicians. The challenge is to work out what are the most cost-effective ways to achieve better outcomes.”

Before treatment patients might not even have been able to walk 50 metres, and afterwards they can walk up to two hours. This can make a huge difference to people who otherwise have to live in pain.

Less risky options could help with pain management

Too often, people suffering long-term pain remain stuck, taking potentially addictive medicines such as opioids, or are fast-tracked into invasive surgeries, when less-invasive, less risky and more effective treatments are available.

As an example, in the Netherlands, an outpatient therapy called radio frequency (p) RF ablation is commonly used ahead of surgery for patients with chronic pain in the cervical and lumbar regions, and in the knee and hip.

Performed under local anaesthetic, RF ablation involves the use of electricity to create lesions on a target nerve to reduce pain. According to Dr Jan Willem Kallewaard, anaesthesiologist at the Amsterdam University Medical Centre and Rijnstate hospital in Arnhem, the great advantage of this treatment is that it can target very specific nerves reducing the impact on surrounding tissue and can offer significant improvements in a patient’s quality of life.

Dr Kallewaard explains: “Before treatment patients might not even have been able to walk 50 metres, and afterwards they can walk up to two hours. This can make a huge difference to people who otherwise have to live in pain.”

Pain referral e-tool can help clinicians with diagnoses

To support clinicians through the maze of pain indications, patient attitudes and treatments, an international panel of experts have devised a pain referral e-tool. This aims to improve the way patients are selected for referral to specialist pain therapies, for example, spinal cord stimulation (SCS).

Dr Thomson believes that giving patients the right treatments quicker and more easily can have cost savings for health systems, which otherwise will fund the long-term costs of drug therapy. For patients, the results of a successful treatment can be life changing.

He says: “People talk about getting their lives back, or finally seeing their partner free of pain. Often, by the time they receive SCS, people have spent six years in chronic pain. After all they’ve been through, it’s amazing if, right at the end, we can make a difference.

“Part of what we are trying to do is to gently push for earlier recognition of suitable cases, and to create a referral pathway that is quicker and easier for everyone to access.”

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Endometriosis and interstitial cystitis affect millions worldwide. The causes of both diseases remain unknown, there is no cure and pain frequently persists and can worsen.

Status of the conditions

The recently updated International Classification of Diseases, ICD 11 includes the category “chronic visceral pain from persistent inflammation in the pelvic region”, hence recognising the pain associated with Endometriosis and Interstitial Cystitis/Bladder Pain Syndrome (IC/BPS) [1]. The public-private partnership Innovative Medicines Initiative, IMI-PainCare, aims to improve the management of chronic pain. Specifically, Chronic Pelvic Pain is the focus of their subproject TRiPP (Translational Research in Pelvic Pain) which is committed to improving the translation of laboratory and clinical findings into treatment for Endometriosis Associated Pain (EAP) and IC/BPS.

Click here to learn about the consortium “improving the care of patients suffering from acute or chronic pain”.

Diagnosis and treatment of endometriosis and IC/BPS

Endometriosis and IC/BPS are difficult to diagnose, with laparoscopic surgery and histology required for endometriosis diagnosis and IC/BPS being diagnosed when all other possible diseases causing bladder pain and increased urinary urgency and/or frequency are excluded. Whilst there are guidelines for treatments to improve pain symptoms, any symptom improvement is generally short-term and treatments have associated side-effects. Preclinical research in animal models for EAP and IC/BPS are at different developmental stages with a lack of consensus, which hinders the development of new medicines.

Disease understanding is essential

Currently, improving patient management is challenging because of the complexity of the disorders and our limited understanding of them. The TRiPP strategy is based on obtaining information, including biomarkers, directly from patients in order to identify the relevant biological pathways affected in these disorders. This information will be used to refine the existing preclinical models, with a particular focus on translational aspects so that they better reflect the symptoms seen in EAP and IC/BPS. One of TRiPP’s hypotheses is that the pain symptoms in EAP and IC/BPS are generated and maintained by mechanisms which are similar to those seen in other chronic pain conditions and that they occur alongside specific pathological lesions and symptoms. The project also aims to establish whether women with EAP and BPS can be stratified into subgroups and to explore whether these subgroups relate to treatment response.  

[1] Aziz, Q., et al., The IASP classification of chronic pain for ICD-11: chronic secondary visceral pain. Pain, 2019. 160(1): p. 69-76.

Disclaimer: This work has received support from the EU/EFPIA/Innovative Medicines Initiative [2] Joint Undertaking (IMI-PAINCARE) grant No 777500 www.imi.europa.eu

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More needs to be done to understand phantom limb pain and the management strategies that help people cope with it, says David Rose, Chair of Trustees at The Limbless Association.

What is phantom limb pain?

It’s a phenomenon where the nervous system refuses to accept the loss of a limb, resulting in a nervous response being sent to a part of the body that no longer exists. Symptoms can include mild pins and needles to feelings of extreme cold. At its most injurious, it causes high levels of severe neuropathic pain which, tragically, has led to suicide in some cases.

Where is the pain felt?

I’ve experienced phantom limb pain every day for 41 years since the loss of my lower right leg in a motorcycle accident. I’ve had to learn to adjust and cope with it — although, thankfully, my pain is relatively low level. Today, I’m experiencing pain in the back of my calf and ankle, and a tingling sensation around my toes. I’m feeling this in my residual right leg, exactly as I would do in my fully functioning left leg.

How many people experience phantom limb pain?

It’s difficult to put a number on it because limb loss affects different people in different ways. I can say that, around the world, there are tens of thousands of amputee veterans of recent conflicts who are living with severe forms of it. Also, most patients with limb loss will experience a period of phantom nerve pain to a greater or lesser extent. Some of us will have it forever. Others find that after 10, 15 or 20 years, it simply fades away.

Why has there been a lack of information and support for managing phantom limb pain?

It’s a subject that hasn’t received anything like the attention it should have done. I think that’s because medical science has no ‘cure-all’ for it. There are drug treatments, but there’s no intervention that can simply take it away once symptoms present themselves.

I’ve experienced phantom limb pain every day for 41 years since the loss of my lower right leg in a motorcycle accident.

There’s been more of a focus on development of treatments for conditions and diseases that will achieve measurable benefits for patients. Unfortunately, I think phantom limb pain falls outside of that medical remit.

Are pain management strategies available to patients?

Yes. These are many and varied and include anti-depressants and high-strength pain medications. Lower level, non-steroidal anti-inflammatories are available too, but generally these don’t provide much relief. There are also numerous practical interventions, such as applying ice packs to the end of a residual limb.

Personally, I find a warm bath can be beneficial, while others find it helpful to keep water flowing on the end of their residual limb when they’re having a shower. Some people use aromatherapy, acupuncture and TENS machines (transcutaneous electrical nerve stimulation). What works best will differ from patient to patient, however, because of the unique nature of this condition.

Is it time to review phantom limb pain research and evaluate treatments and coping strategies?

Yes. I often hear of research being undertaken in various areas of phantom limb pain, but I don’t tend to see outcomes of trials and tests, or the reporting of practical results with real patients.

A patient-centred approach is necessary to better understand and cope with this condition. People with personal experience of limb loss need to engage with scientists at the beginning of the research process. We know this approach works because we have some incredible prosthetic science and technology available to us now ­– such as the processor in my prosthetic leg that stops me stumbling and falling – which was developed by researchers engaging with amputees at an early stage. Marvellous, incredible outcomes have been achieved. The same thing should be happening in the area of pain management.

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Incidence of chronic pain is rising, yet not enough treatments are available. In this underfunded field, more translational research is urgently needed.

When Dr Bernhard Frank started work in the field of pain research two decades ago, the incidence of chronic non-malignant pain affected around five to 10% of the adult population. Now it affects around 20%.

“Unfortunately, there aren’t many medications that are licensed to treat chronic pain conditions,” he says. “In fact, there hasn’t been a breakthrough treatment for chronic pain in the last 15 to 20 years, and there’s a huge need for one. You only have to look at the over-prescribing of opioids to realise that chronic pain is a big problem.”

More translational research is therefore required to improve treatment options, says Dr Frank, Consultant in Pain Medicine at The Walton Centre NHS Foundation Trust in Liverpool. The trouble is, the area of pain research is desperately underfunded, and many drug companies have lost interest in developing pain medication after experiencing negative outcomes in expensive phase 3 trials.

Many drug companies have lost interest in developing pain medication after experiencing negative outcomes in expensive phase 3 trials.

“As an academic field, pain medicine is just not a major topic compared to, say, cardiology,” he admits. “Also, there aren’t many pain specialists on the committees that decide on funding applications. It’s therefore harder for them to make an informed decision on an obscure area of research such as chronic pain.”

New ways of funding pain relief research

There are, however, two developments that give Dr Frank some cause for optimism. The first is the Advanced Pain Discovery Platform, a potentially game-changing £24 million initiative to deliver pain research. It’s funded through the Government’s Strategic Priorities Fund and delivered in partnership through the Medical Research Council (MRC) and other stakeholders. “It will be interesting to see what this delivers in terms of better translational research,” he says. “Although, really, £24million is just a drop in the ocean.”

Then there’s the crowdfunding phenomenon. “This is something we’re looking at doing, although it’s in its early stages,” he says. “Rather than applying for a five-year project grant, crowdfunding will allow researchers to complete their work step by step. Then they might at least have something to show would-be donors to demonstrate that their science is on the right trajectory. It could be the way to finance pain relief projects in the future.”

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Spinal cord stimulation is an increasingly helpful technique in the treatment of carefully selected patients with low back and leg or arm pain that has persisted beyond standard surgical treatments.

We know that chronic pain has a profound impact on patients; beyond the physical pain involving complex changes in the brain and the disability, it also affects their occupation, their mood, their sleep and their relationships. This means that treatments for chronic pain are challenging and require approaches to address both the physical and psychological aspects.

What is it used for?

Spinal cord stimulation (SCS) is an advanced treatment for chronic pain that we have found is helpful for certain patients with a type of pain called ‘neuropathic pain.’ This is normally pain in the arm or leg that has not responded to standard surgery on the spine. However, SCS is occasionally used for rarer pain conditions such as complex regional pain syndrome (CRPS) or nerve pain from long-term diabetes.

How does it work?

It works by placing a device similar to a heart pacemaker under the skin with minimally invasive surgery and passing electrodes from this device through the spine and resting them on the surface of the spinal cord. The stimulator then transmits a variety of electrical waves that can help mask the excess pain signals the body is producing. With some newer waveforms, SCS may also reduce the negative emotional response to the pain in the brain itself.

Who is it helpful for?

Diagnosing which patients are likely to benefit from SCS is a highly specialised process and requires a team of clinicians including pain doctors, neurosurgeons, neuropsychologists and specialist nurses. Even then, the patient requires a trial of the stimulation to assess whether it is helpful to them before the final device is surgically implanted.

What might the future hold?

This is a rapidly expanding field of medicine and there are a number of exciting developments that might provide further benefits to patients. These include more advanced ‘multi-waveform’ technology, devices with batteries that do not need to be implanted and others that can ‘read’ signals in spinal cord and adapt the stimulation to them. We hope this will enable us to improve outcomes and indeed to treat patients with other causes for their pain.

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Fibromyalgia is not only a chronic pain condition (although that is how most people come to know it) – it drains your energy while family, friends and you, grieve for your previous life.

Fibromyalgia or, ‘fibro’, can alter the life of anyone. All over pain, non-refreshing sleep and fatigue are the symptoms that become your constant companions. It’s a challenge to achieve a diagnosis with no simple blood test and you may also meet unsympathetic health professionals. There is much that we don’t know about fibro, including its cause, but people’s lives are destroyed by it.

Lack of knowledge or research impacts the pain and anxiety that people with a chronic condition experience.

Early intervention is so important, but it can take years to be diagnosed. Lack of effective treatments or having to try numerous options before finding something that improves quality of life by a small amount is the norm.

Fibromyalgia is much more than just pain, but it’s not all that we are, and to make each day have worth it is good to have achieved something.

We hear of patients having treatments withdrawn immediately without any replacement, forcing them to endure increased pain and emotional distress. When patients ask to manage their pain with a previous treatment regime, they may be labelled as having drug seeking behaviour, which makes their journey harder.

Chronic pain – what is it?

Chronic pain is pain that’s always with you. Imagine three to six months with pain all over, that you can’t escape from. We measure pain on a subjective scale between one and 10. Your headache, gauged a ‘three’ could stop you finishing that important presentation for work, but it goes away.

My ‘three’ at the moment is constant leg pain while I write this article. That is annoying, but it’s my normal. I distract myself from it and achieve things to make my day worthwhile. The sadness I felt when my son winced at the pain he thought he caused when he cuddled me was harrowing – but I am more fortunate than some to be writing this with my chronic companion at three.

What is a working treatment?

A working treatment is when a patient’s pain goes down the scale. Bringing a pain score of eight down to three, for example, is great.

Fibro is much more than just pain, but it’s not all that we are, and to make each day have worth it, is good to have achieved something. Fibromyalgia sufferers cherish small achievements or moments with family as the gains with their pain.

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A discussion with my sister, Sue, a fellow porphyria patient, revealed five techniques that helped her to regain a sense of normality, after life in her twenties was torn apart by acute porphyria attacks and crippling chronic pain.

Pain relief

Being stoic about pain doesn’t work. If you’re in pain, it’s OK to use pain relief. If it doesn’t work, seek advice and try something different. A pain-management specialist developed a new medication plan for Sue; various medications, at lower doses, were combined to work simultaneously on the different systems of the body, which elicited a better response to her pain.

Be kind to yourself

When you’ve had a bad day, try not to admonish yourself for not being able to do what you planned. Try not to feel guilty, angry or critical of yourself. It’s not your fault AND it won’t change anything! Sue attended a cognitive behavioural course on pain, which helped her realise that she didn’t need to feel so guilty all the time.

Sleep

Good quality sleep makes a huge difference to how we feel mentally and physically, so it is important to get enough. Pain can seem infinitely worse when we are tired. Aside from the well-known instructions for maintaining regular sleeping patterns – such as avoiding screens before bed and cutting back on caffeine – Sue notes that actually the most important advice she received was simply to sleep when you can and when pain relief is at its optimum level. Adjust pain medication times so that you can get to sleep when they are at their peak.

Relaxation and breathing

Sue notes that some of her worst pain episodes have been made more bearable by using breathing and relaxation techniques. Mindfulness, meditation and breathing techniques can help relax the body, which can ease pain and tension, as well as reduce stress and anxiety.

Look after your body, but pace yourself

There’s a known connection between physical health and pain. Even if you cannot do much, try to do some level of activity every day. For some people that might be a run or a cycle; for others, it may simply involve climbing the stairs a few more times in the day. But pace yourself; there’s no point doing a two-mile walk one day, then being unable to move from your bed the next day.

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