Hello, I'm Paul Evans and welcome to Airing Pain, a programme brought to you by Pain Concern, the UK charity that provides information and support for those of us who live with pain. This edition is made possible by Pain Concern's supporters and friends. More information on fundraising efforts is available on our Just Giving page at painconcern.org.uk. What people think is just a general minor knock when you're standing shoulder to shoulder with people is very painful when they're actually, it feels like they're just punching you in the arm repeatedly. It's not primarily a psychological disorder. It's a chemical imbalance that causes a whole multitude of symptoms, but the primary symptom...
that causes the greatest disability is chronic pain. Why should we, on Airing Pain, be even discussing the validity of a condition that affects an estimate of up to 2.7 million people in the UK? Well, I have fibromyalgia, and I can tell you it is very real. Yet for years, the condition was considered by the public, fed by an ignorant press, and I have to say, some of the medical profession, as a psychological disorder. Something in the imagination.
Even though fibromyalgia is now recognised by the World Health Organisation and the NHS, the spreading of misinformation persists. Only recently, a columnist in the UK tabloid press wrote that his New Year's resolution for 2012 was to become disabled. Nothing too serious, maybe just a bit of bad luck or one of those newly invented illnesses which make you a bit peaky for decades. Fibromyalgia or ME. Now that's not only offensive and damaging to people who have these conditions, but to people with all disabilities.
So let's put the record straight. What is fibromyalgia? Ernest Choi is Professor of Rheumatology at Cardiff University. He's also on the Medical Advisory Board of Fibromyalgia Association UK. Fibromyalgia, in simple words, means pain in the tissue. And in the main, patients with fibromyalgia have pain throughout their body in different tissues. It's very common. It affects something like 2% of the population. It tends to be more common in women.
than in men. It can affect children as well as adults. The most common age of onset is around about the 40s and 50s. It tends to last for a long time. One of the most frustrating aspects of the illness is that many patients don't have any outward signs of a physical illness, although they feel terrible themselves because they're in pain. And often their friends, relatives, colleagues at work doesn't quite fathom what the problem is. But we have started to understand the condition a lot more over the recent years.
First of all, the condition is not what I call homogenous. It means that there are different kinds of fibromyalgia. You can have different events and illnesses and factors that can precipitate and brings on fibromyalgia. So in many ways, we do not always treat the patient in the same way. It really depends on what we think are the main factors that drive or cause fibromyalgia in the individual patients.
But in every patient with fibromyalgia, what they do suffer from is pain throughout the body. It may vary in intensity from day to day, and it may move from one place to another. But it's uncommon for the patient not to be having pain somewhere in the body at some point. Professor Ernest Choi, now it's always good to talk with others who share your condition, to compare notes and to exchange coping strategies. So recently I met Lexi Barber, and this is how it affects her. It depends on whether it's a good day or a bad day, and they tend to come in series, so I can have it as more like a good week or a bad week. And a bad week, a very bad week can be...
particularly if I've gone down with a cold or something and I'm recovering from it, then my muscles tend to go into flare and it's very, very tender and sore. So things like commuting on really packed trains is not very comfortable at all because what people think is just a general minor knock when you're standing shoulder to shoulder with people is very painful when they're actually, it feels like they're just punching you in the arm repeatedly and they obviously don't realise that you're in pain and you can't just shout at them to not because of the situation you're in. That can be really hard. On a good day, it doesn't... matter quite so much. It's always there. It's always a bit painful. Sometimes you don't know it's there until someone bumps into you or you accidentally walk into the door frame, as I have a tendency of doing. Pain is the most common and I would say universal symptoms. But there are lots of symptoms associated with fibromyalgia. Fatigue, tiredness is very common. Non-refreshed sleep. So people go to sleep, they may sleep for hours, but when they wake up in the morning, never feel that they had a good night's sleep. Fibrophot means that people have problems with short-term memory. They don't seem to be able to think clearly.
People may have headaches, migraines, back pain, dizziness, sometimes even palpitation, anxiety, depression. All those are very common symptoms of fibromyalgia. And irritable bowel syndrome. Irritable bowel syndrome is a common occurrence in patients with fibromyalgia, yes. Now, that's a lot of symptoms. So what is causing this? I mean, for a while, people don't understand why fibromyalgia patient has this whole range of symptoms. But it's now clear that one of the issues in us coping with pain is that all of us have an intrinsic mechanism in the brain that controls pain. So when we experience pain, we will naturally have a reaction to the pain. It makes us stressed. It makes us depressed. It makes us upset, irritable.
But normally the body actually has a way of suppressing the severity of the pain to make it culpable and manage. the pain but what is clear is that patients with fibromyalgia some of these intrinsic mechanisms are not working very well so they're less able to manage to cope with the pain so they get quite frustrated they get quite tired with the pain and not surprisingly because they can't control the pain they get more irritable they get more anxious they get more depression the other aspect of it is that because the pain is inducing stress which is a normal reaction of pain the stress also make the whole body more sensitive because actually one of the normal consequence of stress is bring down the normal thermostat if you like of the body it's like a cat having his hair on ends when he's stressed that's what your response and you know in a patient with fibromyalgia the whole sensory threshold of the person get lower down. So they just become far more sensitive to whether it's noise, whether it's light, whether it's movement in the bowel. You know, the whole person become on edge. And I think then you can start to understand why they have this whole range of symptoms just from a single illness. My wife describes it as, when I get like that, she says, you need to be turned down. And I say, my thermostat's not working at all. That's exactly the reason why the whole body seems to be really be on edge. And in many ways, our way of managing the illness is about how to tone down that thermostat.
Ernest Choi, now before that offensive article that I referred to earlier was written, Professor Dwight Moulin, a neurologist at the University of Western Ontario in Canada, chaired a session at the British Pain Society's annual scientific meeting in Edinburgh. It was under the heading Fibromyalgia. Is it a central neuropathic pain or a condition of psychological distress? There's been a perception that fibromyalgia is a primary problem of psychological distress, and that's been a mindset that goes back decades. Probably where we are now with fibromyalgia is the way we were maybe 100 years ago with epilepsy.
or, say, migraine or schizophrenia, because 100 years ago, if you had seizures, you might be in an insane asylum, and nobody understood migraine either. And you can look at the brain in individuals with migraine or primary seizure disorder, and it'll look completely normal. And we know now that these are conditions of a so-called chemical imbalance. So there's a chemical imbalance in the brain that can cause people to have terrible headaches, can cause people to have convulsions, but you can't see it looking at the tissue under the microscope. And it's turning out now that fibromyalgia is another condition of chemical imbalance.
It's not primarily a psychological disorder. It's a chemical imbalance that causes a whole multitude of symptoms, and one of the effects of this chemical imbalance can be to produce psychological distress, including anxiety and depression. And these are comorbidities, but the primary symptom in fibromyalgia that causes the greatest disability is chronic pain, and that's part of this chemical imbalance. And in the past 10 or 20 years, a lot of work has been done to show and validate. the fact that this chemical imbalance is responsible for many of the symptoms in fibromyalgia, including pain and inability to sleep and the secondary anxiety and depression. Let's go back on that. Chemical imbalance. What chemicals are we talking about, and what should they be doing, and how are they out of balance? The central nervous system is an interplay between factors that excite neurons and others that inhibit neurons. And there are neurons in the spinal cord that are responsible for transmission of pain impulses. Normally, if you stub your toe or you put your hand on a hot plate, you experience pain, and that's important.
because that alerts us to injury. And so we withdraw right away, and we don't hurt ourselves. In fact, there's a very rare condition where people lack awareness of pain, and by the time they're teenagers, their hands and feet are mutilated because they don't have this protective reflex. So that's good, and that's normal, and that's physiologic pain that protects us from injury. But there are conditions where a chemical imbalance occurs, where certain chemicals are not present in the central nervous system at levels that they should be to normally inhibit impulses. And the two primary chemicals that we're talking about in the central nervous system are serotonin and noradrenaline.
And levels of these chemicals in the central nervous system can blunt the pain response and prevent us from... tipping over into a state of chronic pain and we know now from many basic science studies that individuals with fibromyalgia are lacking in levels of these two chemicals to the point where things that normally should just be pressure or light touch are actually experienced as pain because they don't have the normal filtering mechanism in the central nervous system to appreciate it just as light touch it actually comes through as a painful impulse and and the clinical side of this in terms of the bedside is that there are drugs available essentially they're antidepressants but they're antidepressants that work as painkillers that elevate levels of these chemicals to help restore that balance. Well, I'm such a happy man. I can take one of these antidepressants if you like and I will be cured. I wish that were true. It's not a cure, but it helps to restore that balance, not in every patient, but in a significant number. How do you diagnose it?
We have certain criterias. We base it on the symptoms of the patient. Typically, patients with fibromyalgia have a very characteristic area of tenderness in the body. So if you press on certain points, they jump and scream a little bit because they are increasingly sensitive to pressure. So light pressure causes a lot more pain than they should. And we do blood tests, not because there are tests that will confirm that they have fibromyalgia, but in the main, try to exclude other possible causes of the pain. So it's not uncommon for us to do tests. In fact, the tests are normal. They are really there to exclude other possible causes of pain. There's no clinical diagnostic test.
There are research studies that aren't normally available to help validate fibromyalgia, and one of the excitatory chemicals that's responsible for pain is something called substance P. I guess maybe P stands for pain, I'm not sure, but substance P is an important factor in the generation of pain. And if you don't have these inhibitory chemicals, levels of substance P are elevated. And one of the most validating aspects of fibromyalgia is that individuals who have this condition... if their CSF is sampled through a lumbar puncture, levels of substance P in patients with fibromyalgia on average are three times higher than they are in normal individuals. So that's a research tool, but it is a test that helps to validate this chemical imbalance. And just tell me if I'm right or wrong, substance P is a chemical that's present, it's always present, but at higher levels, it's present when one is in pain? Substance P is the chemical that excites neurons that are responsible for generating...
nerve impulses. So elevated levels of substance P means more pain. If you inhibit substance P, you can decrease the amount of pain that a person appreciates. And many of the analgesics that we have, including so-called narcotics or opioids, what we've referred to as morphine-like drugs, they inhibit the release of substance P. And that's a major mechanism of providing pain relief because they decrease the release of this substance that excites pain neurons. So here's the billion Canadian dollar question. What causes it? I don't think anybody knows what causes fibromyalgia.
But individuals with fibromyalgia, they're pain-prone individuals. So patients with fibromyalgia have other manifestations of this chemical imbalance. They have a higher incidence of migraine. They have a higher incidence of irritable bowel syndrome. They have a higher incidence of depression. It's more common in women, as many pain conditions are. And often it'll manifest itself in women in their 30s and 40s. And these are individuals who probably are predisposed to this condition because they've inherited a deficiency of these two chemicals, serotonin and noradrenaline. And then they'll have an event, like a whiplash injury, and it just tips them over the edge. And that's enough to...
cause the symptom to manifest. So they start, typical story is somebody will have a soft tissue injury like a whiplash, and they'll have chronic neck pain, and then it spreads to their whole body. And about 50% of patients with fibromyalgia started with a specific injury. So these are individuals who probably have innate, they were born with this chemical imbalance, and then over the course of a lifetime with life events, it manifests itself, not just with this generalized pain, but these are individuals who have other pain conditions as well, like migraine and irritable bowel syndrome. It's kind of a nasty package. Because of these different factors, one of the first things that we try to do is to understand...
What are the characteristics of the patient? What are the factors that may well be related to their specific fibromyalgia? So just to give you an example, somebody who has been overweight, who sleep very poorly, snore very heavily, may well be waking up very frequently at night. And that triggered off by a chest infection started to develop fibromyalgia. So in those patients, we try to make sure that their sleep quality is improved. Alternatively, in some patients, if they have a very severe, uncontrolled depression.
that is not well managed, then we will manage depression. So I think in individual patients, there are different aspects that we try to address. What I find very difficult as somebody who has fibromyalgia is explaining to somebody else how I feel. I could just say, I feel rubbish, and that's the end of it. If I was sad enough to want somebody else to experience this, just briefly, how would I do it?
One of the challenges of fibromyalgia is that people can feel horrible. They have chronic pain and fatigue and depression, but it's all subjective. You can look at a person with fibromyalgia and they don't look any different than anybody else, so it's a very subjective condition. But individuals who don't have fibromyalgia, if they are sleep-deprived because they're shift workers or they have another condition, things called sleep apnea, other... illnesses that deprive individuals of sleep or somebody who just there have been experiments done where individuals have been as experimental subjects have been sleep deprived for days on end sleep deprivation in itself will produce chronic pain these individuals are pain prone individuals they become obviously fatigued they develop secondary depression and they develop chronic pain probably leads to a chemical imbalance just the fact that we're not getting normal restorative sleep i describe it as crashing fatigue so you can be getting through the day and suddenly you'll just think i just need to sleep i don't care if it's on my keyboard i have to sleep which is quite difficult to cope with when you hold down a full-time job. That word fatigue, I find that people don't understand the word fatigue. They think of it as tiredness. Now, I describe fatigue as being absolute exhaustion, being run over by a bulldozer. Yes, that's definitely it. You can sleep for 12 hours and wake up and think you've not slept at all and feel like you need another 12 hours sleep. You stop being able to form sentences properly.
Oh, you've not seen me on a bad day. It's not even forming sentences. I can often switch off midway through a sentence thinking I've completed it and wonder why people are looking at me expectantly because they're waiting for the rest of the sentence. Do you have those conversations with people where you're in the middle of something and you stop, pause and say, what was I talking about? all the time all the time um I use the phrase my words have fallen out of my head because it describes what's happened it's not just a blank mind you can almost hear the words just tumbling to the floor next to you and you're just scrambling to find what you were saying you completely lose your thread of conversation um and then it's really embarrassing having to ask for prompts as well I'm lucky enough and that people that know me are now very familiar with this trait of mine and they will jump in before that happens. If they see me reaching for a word, they're not afraid to jump in and tell me the word that I was looking for. And that keeps me on my train of thought a lot quicker than having to pause midway through a sentence. And what about this thing we call fibro fog? Fibro fog, it can be a little bit like if you've woken up in the middle of the night and you're still half asleep. Or it can be things like the other day I was making my breakfast and I had a bowl of cereal and some peppermint tea and I put the boiling water on the cereal and the milk in the herbal tea, which doesn't seem like a major thing, but...
You don't notice until you start eating the cereal or drinking the tea and thinking this isn't quite right. You have mental lapses where you go on automatic and don't realise that your automatic memory is not quite as accurate as it should be. And it can also be where you're standing in the supermarket looking at 12 different varieties of cans of beans and thinking, I know I want beans. I know I normally get a particular brand of beans. I can't remember which ones they are. And I can't remember why I want beans. And I have...
been known to stand in the same aisle looking at the same shelves for over half an hour because it becomes overwhelming when you realise you don't know what you're doing there which is quite a scary moment when your brain just spaces out. Have you ever had marmite on your porridge? I'm lucky enough in that I hate marmite anyway so it's not in my cupboard but I've had similar. I like marmite but it doesn't go with porridge. I can imagine not. In my experience.
of fibrophog is on my commuter route going across a crossroads that I did every day in my working life, twice a day, once there, once back, and stopping at the lights and not knowing where on earth to go, even though it was straight on. It's like you've been using autopilot, but suddenly the autopilot has failed. Yes. The other day I had a social engagement and I thought, it's Wednesday, I know I have to do something after work. I know that there is nothing in my calendar, there is nothing in my email calendar. I haven't written anything down, but I know I have to do something. And I had to resort to posting my status on social media, saying, I know I'm supposed to be doing something with someone tonight somewhere. If it was you, please get in touch, because I don't know who I'm meeting and why. And that's really embarrassing to admit you can't remember your friends. Lexi Barber, now, as we've heard as yet, there is no cure for fibromyalgia, but it can be managed.
Professor Ernest Choi of Cardiff University again. First of all, I think understanding the illness is a big battle. So I think it's not uncommon for fibromyalgia patients to get very frustrated. So we need to give them an explanation of what it is. We need to help them to understand what the role of, for example, exercise, keeping warm, the importance of medications. They are not cures, but they help. What they can do when the pain is bad. And also try to reduce as much as possible other factors that can make their pain bad. And also correct some of...
the common misconception. Unfortunately, one of the natural consequences of pain is that when we get pain, we all stop. But actually, for fibromyalgia, it's slightly counterintuitive because, in fact, if you stop, the muscle becomes more deconditioned and over a long time actually make the pain worse. And initially, when people get told that they need to exercise, often the pain gets worse. And naturally, people want to stop. But actually, if you persevere, the pain will improve. So it's understanding that one needs to persevere through the pain is getting over.
Getting control of the pain, that is the key. And that can only be achieved with a combination of a better coping strategy and medications. Describe what you understand as exercise. I exercise. And basically, I'm out of commission for five days at least. So are you saying that perhaps I should persevere, go through the pain barrier, if you like? Yeah, you certainly need to go through the pain barrier. Now, it's obviously easier said than done. And I also appreciate that during winter months, when fibromyalgia is at the worst, doing exercise is not the easiest thing.
Something that are helpful is that if you can find a local swimming pool that is nice and warm, it's very helpful to exercise in warm water. And you don't even need to swim, you just need to exercise in water. The second thing that is actually quite easy to do is that there are lots of video games. It doesn't matter if it's a Nintendo Wii or Xbox. There are nice fitness exercises that you can do in the comfort of your own home.
You can build it up gradually. I'm not asking people to go to the gym and do an hour with a trainer. That isn't the idea. It's that you can gradually build up the level of exercise that's suited to your own pace. Something that is particularly helpful is that if you have those video games at home, after dinner, if you do some exercise, and then if you have a warm water bath, it's much better then to go to sleep, then to improve your sleep quality.
consultant rheumatologist at Cardiff University Professor Ernest Choi. He's also medical advisor to Fibromyalgia Association UK and this is a good point for me to reiterate pain concerns usual words of caution that whilst we believe the information and opinions on airing pain are accurate and sound based on the best judgments available you should always consult your health professional on any matter relating to your health and well-being. He or she is the only person who knows you and your circumstances and therefore the appropriate action to take on your behalf and I think that advice holds good for people with fibromyalgia starting out on an exercise plan. Now, don't forget that you can put a question to our panel of experts or just make a comment about these programmes via our blog, message board, email, Facebook, Twitter and of course pen and paper. All the contact details are at the Pain Concern website which is painconcern.org.uk and you can also download all editions of Airing Pain from there too.
Now, there's plenty of good advice and support for people with fibromyalgia on the internet through charities such as Fibromyalgia Association UK, FibroAction and UK Fibromyalgia. So what's the future for the treatment of the condition? Are there any major breakthroughs on the horizon? Professor Dwight Moulin. I think because the mechanism of fibromyalgia is starting to unravel, that we will have probably more specific drugs available that will help to correct this chemical imbalance with fewer side effects. But in the short term...
What all of this has done, the evidence from the clinical trials and basic science research in substance P, the most important thing in the short term is that it's validated this condition to make us all aware that this is a real condition. These are patients with the associated anxiety and depression. They wonder if they're imagining it. They can't get people to believe them. And we know now that for patients in pain, validation and acceptance that they have something that's real is just as important to them as the actual treatment. So all this research in the short term, what it's done is helped to validate this is as real a condition as primary epilepsy. It's as real a condition as...
migraine, and it's just a form of chemical imbalance that manifests with pain and fatigue and all these other symptoms. What is your advice to people who are starting out on the fibromyalgia journey, if you like? Well, I think the most important thing is don't get completely discouraged. There's no cure. The disease can't be managed positively. And there are instances where people have stopped working for several years after they developed fibromyalgia and managed to get their life back together and getting back to work. Perhaps not at the same level as before, but they're still able to manage a reasonable quality of life.
I have to say, I gave up work two years ago, and now I'm making airing pain to pain concern, and it's been an excellent feed back into the workplace. Exactly, exactly, exactly. Rethink about how you can adapt your life due to illness, and people sometimes don't believe me to say that actually work is quite good for fibromyalgia. It may not be the same job that you were doing before, but doing something is actually quite healthy. It makes the mind more healthy. Taking control of your work would be my advice. That's good advice.