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MANAGING PAIN Full campaign on healthawareness.co.uk
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Joop van Griensven
Professor Philip Conaghan
Migraine Patient
President of Pain Alliance Europe (PAE)
Professor of Musculoskeletal Medicine, University of Leeds; Consultant Rheumatologist, Leeds Teaching Hospitals NHS Trust
Daisy Swaffer ”I thought something had exploded in my brain and it was the end for me”
“Chronic pain patients’ needs, now and in the future, should be the cornerstone of any further developments.”
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“Beating joint pain: it takes muscles”
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IN THIS ISSUE
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Dr Nazia Karsan
Headache Clinical Research Fellow, King’s College London
Dr Goadsby
Isolation is daily reality for those with chronic pain O
INTERVIEW WITH
NIHR-Wellcome Trust King’s Clinical Research Facility, King’s College London
We know that the brain of someone with migraine likes balance; such as regular sleep and meal patterns.
07 Ria Bhola
Headache Nurse Specialist, The Migraine Trust
Would you know you were having a migraine if you had one?
ONLINE Paul Evans
Independent radio producer, Harvard Productions
The doctor sent me to a psychologist for my chronic pain. I’m not mad! Read more online at healthawareness.co.uk
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Please recycle
Antony Chuter Chair, PAIN UK
Written by: Kate Sharma
ver the past few months, we’ve all experienced restrictions on our lives and the subsequent feelings of isolation, disconnect and anxiety. But these experiences were a daily reality for many with chronic pain long before the word ‘lockdown’ entered common vocabulary. Some may argue that those who are used to living with such restrictions are better placed to cope. However, as Antony Chuter, Chair of Pain UK, explains, the reality is very different. “For people who are barely surviving – things have been ten times worse. They have been plunged into further isolation,” he explains. Those living with chronic pain are far more likely to be shielding from COVID-19 and are denied opportunities for interaction – even their regular GP checks are now devoid of human connection. Mental strain Chuter himself has lived with chronic pain for years and knows all too well the link between mental and physical wellbeing. “Stress and anxiety make pain worse. In the first few weeks of lockdown I really struggled,” he confesses. A supportive partner, regular video calls with the family, time in the garden and a weekly fish and chip takeaway all helped him to stay positive. But others are much more vulnerable. “Mental health problems are really building up for some people,” he continues. “Whatever the GP can give to them, they’re still at home on their own and haven’t seen a living soul for days on end.”
Invisible victims Some, however, are marginalised to the point of invisibility. More than 50% of those who are homeless live with chronic pain, according to research by the charity, Groundswell. Furthermore, 39% felt that physical pain had contributed to them becoming homeless. While thousands of rough sleepers have been housed in hotels during the COVID-19 crisis, Chuter is concerned that their underlying issues of pain are not being addressed. “They have complex issues and addictions, often developed through attempts to self-medicate their pain,” he explains. “It’s a big problem.” Rethinking the future In the midst of these fresh challenges, there is a glimmer of hope. The world of work has changed beyond recognition and that has opened up new opportunities for those who live with chronic pain.
Business is going to change drastically. A lot of things that make work hard for people – like commuting – have gone away,” he explains. “I’m hopeful that businesses will be more open minded in the future.” But when that future will start is anyone’s guess; in the autumn; next summer; when there’s a vaccine? One thing is certain, while lockdown may be easing for some of us, there is no end in sight for others. Chronic pain remains a terminal, isolating condition for too many people. If our own taste of lockdown makes us more compassionate, that can only be a good thing.
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Five tips for restoring balance when living with chronic pain
For more information including guidance on getting a diagnosis, visit www.endometriosis-uk.org
Endometriosis affects 1.5 million of those assigned female at birth – have you heard of it? Have you heard of endometriosis? Symptoms include chronic pelvic pain, painful bowel movements and painful sex. It’s suffered by 10% of women and those assigned female at birth, and the chances are you know someone with the disease. Yet, 74% of men don’t know what endometriosis is, nor do 62% of young women, despite the fact it can be active from puberty to menopause.
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or too long, menstrual health conditions like endometriosis have been swept under the carpet, labeled “women’s problems” and not talked about. The chronic, sometimes debilitating pain that many with endometriosis experience cannot be ignored any longer. Those in severe pain, vomiting or passing out due to pain, should not be told it’s ‘normal’ period pain, they’ve got a low pain threshold, or they’ll grow out of it. What is endometriosis? Endometriosis is a condition where cells similar to the ones in the lining of the womb grow elsewhere in the body, usually within the pelvic cavity. Each month these cells react to the menstrual cycle in the same way as those lining the womb, building up and then breaking down and bleeding. However, this blood has no way to escape. This leads to inflammation, pain, and the formation of scar tissue (adhesions). Symptoms experienced vary from person to person, depending on where the endometriosis grows. If you have one or more of the following, you could have endometriosis: • • • • • •
Chronic, severe pelvic pain Painful periods Painful sex Bowel and/or bladder problems Fatigue Difficulty getting pregnant
WRITTEN BY
Emma Cox CEO, Endometriosis UK
What to do during COVID-19 Many experience period pain, but if you have pelvic pain that is interfering with your everyday life, it’s best to see a doctor. Although services have been disrupted due to the outbreak of COVID-19, GP surgeries are still open for business and you can call your surgery to find how you can access their support. In preparation for your GP appointment, keep a pain and symptoms diary so you can easily explain what you’re experiencing. Endometriosis symptoms overlap with those of other conditions and having a diary of what you’re experiencing, and when, can help doctors recognise what’s going on. Difficult diagnosis due to the taboo surrounding endometriosis Diagnosis takes an average of 7.5 years in the UK. This is due to a combination of people with endometriosis thinking the level of pain they are enduring is normal, menstrual issues considered taboo or embarrassing, and symptoms not always being picked up even when help is sought. During this time, pain management is rarely offered. We all have a role in turning this around. By being prepared to talk about menstrual wellbeing we can help break the taboo and support those suffering with endometriosis.
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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.
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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; but 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.
WRITTEN BY
Liz Gill Vice Chairman, British Porphyria Association (BPA)
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“The pain was so bad I thought I was going to die”
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Daisy Swaffer’s whole life is consumed by migraine. She reveals her symptoms, why she had to give up work because of the disease, and what she does to manage the pain.
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he first time Daisy Swaffer experienced a migraine attack, she felt she was going to die. “I thought something had exploded in my brain and it was the end for me,” she says. “That was how bad the pain was. Now it’s like that every time.” Daisy has been so badly affected by chronic migraine that she had to give up her IT job at the University of York. “If I’d had better care from my GP at that initial stage, I might not now be in a situation where I can’t even work,” she says. “But back then, the doctors gave me some tablets and sent me away. I didn’t get any more support, which meant my migraine got worse and worse.” Before stopping working altogether, Daisy typically had between 18 and 21 days of migraine a month and would experience pain every day. Daisy’s migraine started relatively late in life. She was 29 and her trigger event seems to be a particularly stressful period in her life. Apart from the crippling pain, she can experience other symptoms. These vary, but can include sensitivity to light, nausea and vertigo. Movement is excruciating. Taking a holistic view of migraine management Daisy has since been referred to a specialist and learned how to manage the disease more effectively. “You have to take a holistic view of your life and constantly monitor which factors will lower your threshold and trigger a migraine,” she says. Because of COVID-19, she hasn’t had access to a newly-approved migrainespecific preventative medicine; and, of the other preventatives available, only one has proved tolerable and its effect is limited. She also takes a number of acute medications that can abort an attack — but only if taken at exactly the right time, “which is difficult to judge.” Daisy’s advice to anyone struggling with chronic migraine is to share stories and find support from other migraine patients on the internet. “But the biggest thing is to talk to people who are close to you and get them to read what you’re INTERVIEW WITH reading,” she says. “They’re going to need to understand what you’re going through if they are to remain part of your life.” Written by: Tony Greenway
Daisy Swaffer Migraine patient
Migraine – how much control do you actually have? Some migraine sufferers consider they can trigger a migraine. Some have symptoms before headache, which can be mistaken for triggers. How much control over whether you have an attack or not do you really hold?
WRITTEN BY
Dr Nazia Karsan Headache Clinical Research Fellow, King’s College London
WRITTEN BY
Dr Goadsby NIHR-Wellcome Trust King’s Clinical Research Facility, King’s College London
Migraine triggers Many people with migraine identify factors, such as foods and bright lights, that they consider as triggers for their migraine attacks. Some feel a change in pattern of regular behaviour, such as altered sleep and food and drink intake, can be triggers. We know that the brain of someone with migraine likes balance; such as regular sleep and meal patterns, and we also know that migraine can be triggered by alcohol and the menstrual cycle. The evidence for other triggers is less impressive. When researchers have tried to trigger migraine in experiments using measures such as exercise, chocolate ingestion and bright light, they have largely been unsuccessful. Premonitory symptoms Many sufferers, when prompted, can identify painless symptoms of a migraine attack starting hours to days before headache, that act as a warning of its onset. These are called premonitory symptoms. A range of symptoms have been reported including mood and cognitive change, light and sound sensitivity and food cravings. The brain is already behaving abnormally before headache, which we know from studies of electrical activity and imaging. Given the brain areas involved during this time include those that can generate food cravings, then, for example, sweet cravings could occur before you know the attack has started. If you then eat some chocolate, and soon after develop a migraine headache, you may think that the chocolate has triggered the migraine. However, the attack had already started. In this situation, it is conceivable that the chocolate was correctly associated with the attack, but incorrectly attributed as a trigger. The same could be true for other triggers like bright light perceived as a trigger and light sensitivity in the premonitory phase, and strong smells as a perceived trigger and smell sensitivity in the premonitory phase, among others. What causes premonitory symptoms? While we have some understanding of
Systematic symptom capture in this way could help shape migraine therapeutics going forwards the pain-generating pathways in the brain, we do not really know how the migraine attack starts in the brain and causes premonitory symptoms. We know that the brain behaves abnormally during this time, in areas that could feasibly be causing the symptoms, like mood and memory areas and the part of the brain responsible for regulation of food and water intake and sleep cycles (the hypothalamus). The similarlity in premonitory symptoms with some reported trigger factors, the involvement of corresponding brain areas during premonitory symptoms and the general difficulty in triggering migraine experimentally, have made us think that perhaps many triggers are misperceived as early migraine attack symptoms and that avoidance of lifestyle and environmental factors may be unnecessary and unhelpful. How much control do you have? This leads to the question: how much control do you have over your migraine? The associated question being, is ‘trigger avoidance’ a useful treatment strategy? We would suggest detailed diary documentation of attacks, with symptoms and perceived triggers before pain, and pain onset relative to these, so that a sufferer can evaluate the reliability of a particular trigger factor, or indeed assess if it is actually associated with the corresponding premonitory symptom. Systematic symptom capture in this way could help shape migraine therapeutics going forwards, enabling assessment of early treatment, trigger modification and attack prediction. No doubt many migraineurs can identify triggers; however, if you cannot, perhaps reflecting on early premonitory symptoms will provide understanding and new answers.
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Migraine is often dismissed as ‘just a headache’. But the truth about this misunderstood neurological disease is a lot more painful, debilitating and isolating. INTERVIEW WITH
Dr Joshua M. Cohen Global Medical Therapeutic Area Lead, Migraine & Headache, Teva Pharmaceuticals
Written by: Tony Greenway
This article is sponsored by Teva Pharmaceuticals
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f you experience the pain and other debilitating symptoms of migraine on a regular basis, it’s easy to feel helpless and alone. “It’s an incredibly isolating disease,” says Dr Joshua Cohen, Global Medical Therapeutic Area Lead, Migraine and Headache, at pharmaceutical company, Teva. “That’s partly because people can’t see it, so don’t necessarily know someone is experiencing pain, which is a challenge in itself. But also because migraine patients often have to go into a dark, quiet room all alone when they’re having an attack. “On top of that, there’s an incredible amount of stigma associated with migraine because people don’t know the difference between migraine and a headache.” Migraine is a neurological disease related to hyperexcitability of the brain. A classic symptoms is headache, while others include nausea and vomiting, plus sensitivity to light and sound. Attacks can last for hours – or even days – and sometimes just moving can make things dramatically worse. While a person without migraine may be able to function with a mild headache, migraine can be extremely disabling. “Migraine can be misunderstood as ‘just a headache’,” says Dr Cohen. “But if someone can’t work, pick their kids up from school or attend social events, they’re judged as not fulfilling their obligations.” Medications to manage the pain of migraine Instances are common, with around one in seven people living with migraine.1 “It’s believed that people may be born with a genetic predisposition towards the disease,” says Dr Cohen, “and the most prevalent age is between
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Revealing the painful truth about migraine
25 and 55.” Blood tests and imaging can’t detect it, so clinicians reach diagnosis by studying symptoms and taking a headache history. Thankfully, acute medications are available to help manage the pain and debilitating nature of migraine. “Some have been available for a while, are specific to migraine and work well,” says Dr Cohen. “And new treatment options continue to emerge.” Then there are preventive medications, which can be used in patients with frequent or disabling attacks. Older preventives were not specifically developed for migraine. Also, these drugs are often associated with side-effects that are challenging for patients to tolerate. “As a result, people don’t stay on them long enough to benefit from their efficacy,” says Cohen. “One study found that, while around 40% of those with migraine are eligible for preventive therapy, only around 13% are actually taking it, demonstrating that this form of treatment is under-utilised”2 Why migraine has a significant societal burden That’s a problem, because migraine tends to worsen without treatment; so a lack of effective management means an increased likelihood of attacks increasing in frequency. Those with 15 headache days per month or more, where at least 8 days feature migraine symptoms, are diagnosed with chronic migraine. “Even on the days when they don’t have a headache, these patients may be recovering from an attack or experiencing lingering symptoms,” says Dr Cohen.
“They reach a point where their whole lives are consumed by the disease.” Some have to take long periods off work or, in extreme cases, give up work altogether. In fact, the World Health Organization has ranked migraine as the second leading cause of years lived with disability worldwide.3 “Migraine also causes a significant societal burden,” says Dr Cohen. “There’s a loss of productivity because people are unable to work or, more commonly, are at work but can’t function because they’re having an attack. A European study estimated that the cost of migraine amounted to €111 billion each year.”4 If you are a migraine patient, don’t feel helpless and alone, says Dr Cohen. See a healthcare professional and get help. And tell people about your experiences. “Anyone with a chronic disease can share their stories through platforms such as Life Effects. This will help you feel more supported and less isolated.”
Visit Life Effects, a community of people who share their stories of living with a chronic condition, developed by Teva In collaboration with patients, to hear first-hand experience of Individuals living with migraine.
References 1 Steiner TJ et al. Migraine: the seventh disabler. The Journal of Headache and Pain 2013, 14:1 2 Lipton RB et al., Migraine Prevalence, disease burden, and the need for preventive therapy. Neurology. 2007;68(5):343-349 3 Steiner TJ, Stovner LJ, Vos T, Jensen R, Katsarava Z. Migraine is first cause of disability in under 50s: will health politicians now take notice?. J Headache Pain. 2018;19(1):17. Published 2018 Feb 21. doi:10.1186/s10194-018-0846-2 4 Linde M et al., The cost of Headache disorders in Europe: The Eurolight Project. Eur J Neurol. 2012: 19(5):703-711. UK/CPE/20/0012 Date of Preparation: June 2020
Read more at lifeeffects.teva/eu/
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Why chronic pain patients’ voices are important! Chronic pain patients’ needs to live better with chronic pain must always be considered in developing research, therapy and social/psychological/economic support.
WRITTEN BY
Joop Van Griensven President, Pain Alliance Europe (PAE)
Surveys into chronic pain patients’ needs Getting to know the chronic pain patients is the first step in finding out their needs. The complexity of the patients’ needs extends beyond health issues into wider aspects of their lives. For that reason, Pain Alliance Europe (PAE) does annual surveys, which started in 2017. Over the last four years, the topics have been: ‘Diagnosis and Treatment’, ‘Work and Income’, ‘Stigma’, and, this year, ‘eHealth and mHealth’.* There is a logical line in these surveys as they explore areas that are important for patients. The medical part, the social/ psychological part, and the economic part. This, combined with new technologies that patients may be using, gives a good indication of their needs.
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Transforming data into patient care Once the surveys are complete and the analyses published, we publicise these results to the main stakeholders: healthcare professionals (HCPs), policymakers, politicians and researchers. We do this by participating in events in the European Parliament and organising our own events. We present the outcome of these surveys and we ask for replies from the
stakeholders. We are invited to attend HCPs’ symposia where we can provide abstracts on the results and, where possible, get involved in discussions. Using the outcome of these events, together with the survey results and the wishes of our members, we help develop recommendations to give to politicians and policymakers. We publish these recommendations in our newsletter and on our website and also on the EU Health Policy Platform. Patient input to research is very incredibly beneficial for all When analysing the survey results, it is easy to identify several topics that need further research. The answers given by the patients are an excellent source for young and also established researchers to work on. However, they need to do this with patients or patient representatives because the patients have provided information about what is needed.It is therefore logical they should be involved in formulating the research questions. This ensures the research will be on aspects of the needs identified by the patients. When patients are involved in the process of creating a research project
and included on ethical and advisory boards, it guarantees researchers don’t forget for whom they are doing this. Patients participating in the dissemination of the results will help ensure the right people are seeing them and that the results are not only for the happy few who read scientific papers. Our end goal is to improve people’s lives PAE has a very clear reason for developing these surveys, making sure the analysis is done by experts and publicising the results, ensuring the outcome reaches a broad audience, transforming the results into recommendations for policymakers and politicians, and encouraging researchers to investigate the omissions identified by the patients. The reason is the mission of PAE: “Improve the quality of life of people living with chronic pain in Europe.” These efforts should help PAE to reach the stage where we have completed our mission. *The 2020 survey will close in June and the results will become public in August. The other surveys are published on the PAE website www.pae-eu.eu/surveys where all the reports are available.
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The symptoms and stages of a migraine The debilitating effects of migraine are poorly understood. To understand migraine is to realise it is much more than ‘just a headache’ and that, during the most productive years of life, its impact is huge. Migraine is ‘featureful’ In reality, a migraine attack will follow four or five stages, each occurring with a range of distinct features. This goes beyond the common perception of a migraine attack as a throbbing headache, which often confines you to a dark room. Not everyone will experience all of the symptoms of each stage and the stages can overlap. The severity and duration may also vary across attacks.
Beating joint pain: it takes muscles Joint pain is incredibly common and painkillers don’t work very well. However, building strong muscles substantially reduces pain.
WRITTEN BY Professor Philip Conaghan Professor of Musculoskeletal Medicine, University of Leeds Consultant Rheumatologist, Leeds Teaching Hospitals NHS Trust
Causes of joint pain and the current treatments Joint pain can be due to arthritis or inflamed tendons (the ends of muscles that anchor them to bone), or a mixture of both. There are many different types of arthritis. Arthritis due to immune system disorders (such as rheumatoid arthritis) is relatively uncommon and needs special drug therapies. Mechanical joint problems (mainly osteoarthritis and inflamed tendons) are very common, with pain generally worsening over the course of a day – due to increased joint use, or after sitting for a while. For these common joint problems, we only have a few drug therapies, such as anti-inflammatories (e.g. ibuprofen or naproxen) or opioids (eg codeine or cocodamol). They often only reduce pain by a small amount and can have substantial side effects, so many people can’t or shouldn’t take them. Why are muscles important? Weak muscles lead to increased strain on joints and tendons. If you cant undo a jar, hold a saucepan or undo buttons, you definitely have weak grip (which means weak forearm muscles). If getting out of a bath, chair or car is difficult, or you find your knee is ‘giving way’, then you have weak leg muscles. If you had intermittent pain but now its becoming more frequent, chances are you have become weaker over time. And the problems don’t stop with one joint. If you have weak grip, every time you lift or carry you will be transmitting increased load to your shoulder. So you may start with hand pain and over time develop shoulder pain. Similarly, people with knee pain who develop weak leg muscles will develop pain on the
outside of their thighs/hip region (due to inflamed tendons) and may aggravate their back pain. Many people will have become weaker from staying indoors during COVID-19 lockdown. And many research studies show that you can substantially reduce joint pain if you increase muscle strength. Are there simple ways to get strong? For weak grip, sit with your arms resting on a cushion/pillow. Put a rolled up sock or squashy ball in one hand and squeeze. Keep squeezing as long as you can without stopping. When you can’t hold it anymore, put it in the other hand. Keep going and swapping hands. If you have the leg problems I previously described, a good starter exercise is to walk multiple laps in a swimming pool. Another simple exercise uses a rolled up towel under your knees while you are lying down. Bend up one leg and with the other push the back of your knee down into the towel while lifting your heel up and pulling toes toward your head. This gets the leg straight. Hold for a count of 10 (if you can!). Give it a short rest then repeat. A key to muscle building is repeating and repeating: up to 30 times per arm/ leg. It will get easier over time. If you do it daily, you will notice benefits within a few weeks. It is wise to be strong before you start doing more vigorous exercise: if the exercise for leg muscles described here becomes easy, then its time to move onto brisk walking, exercise bike or cross-trainer. If you need specific advice about muscle strengthening, talk to a physiotherapist or GP, or go to versusarthritis.org
Symptoms and stages of an attack The premonitory phase is often described as the warning stage, where one may experience tiredness, yawning, food cravings, mood changes (high or low), thirst, neck stiffness and passing more urine. These symptoms will last up to 24 hours and precede the next stages. It is important to recognise this stage as a useful warning, but also distinguish the symptoms from a trigger. For example, if a particular food like chocolate, is consumed during a sweet craving where the attack had in fact already started, this may be incorrectly regarded as a trigger. The aura phase is experienced by about a quarter of people with migraine who have ‘migraine with aura’. It results from a wave of nerve activation that spreads over the brain (known as cortical spreading depression or CSD). As this electrical wave spreads, the nerves fire in an abnormal way and a range of reversible neurological symptoms develop (typically over five to 60 minutes). These may be experienced as spots, patterns and lines in the vision; numbness, tingling or weakness along the body; and speech or language disturbance. They usually precede the headache. The headache phase involves moderate or severe head pain. The headache is typically throbbing and made worse by movement. It is usually on one side of the head, though it’s not uncommon to get pain on both sides or all over the head. Nausea and/or vomiting can occur at this stage and the person with migraine may become sensitive to light, noise or smells. Painkillers work best if taken early during this phase, or they may not work at all. Resolution occurs as the symptoms slowly fade after four to 72 hours, but will stop sooner if treatment is timely and effective. Sleep can also be helpful. The postdrome phase is the final stage of an attack and is characterised by a drained, fatigued or ‘hangover’ type of feeing that can last for hours or days. Being able to recognise the different phases of a migraine attack will help to ensure the most appropriate types of treatment are used, and how best to take them. Explaining and educating others will also help mitigate suffering and frustration, and enable better lifestyle and workplace adjustments.
WRITTEN BY
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Ria Bhola Headache Nurse Specialist, The Migraine Trust
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Spinal cord stimulation for patients with chronic arm, leg or spine pain
For more information and help regarding fibromyalgia please visit: www.fmauk.org or call 0300 333 9999
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.
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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.
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.
Des Quinn Chair, Fibromyalgia Action UK
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.
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
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.
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.
Mr Adam Williams Consultant Neurosurgeon, North Bristol NHS Trust
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.
Treatments for chronic pain are challenging and require approaches to address both the physical and psychological aspects.
WRITTEN BY
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he chronic, sometimes debilitating fibromyalgia or, ‘fibro’, can alter the life of anyone. All over pain, nonrefreshing 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. 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.
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Fibromyalgia steals your energy, choices and your future
e 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.
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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 ‘multiwaveform’ 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.
