FIBROMYALGIA: Road to Recovery
(a comprehensive guide)
by Elizabeth Mcsweeney
Second Edition 2011
What other people had to say about the first edition of this book:
Pam Stewart, chair of Fibromyalgia Association UK (FMA UK) (www.fibromyalgiaassociationuk.org):
“I think there are chapters that would be very useful to use with professionals and medical decision-makers as you have all the research and data pulled together…. thank you for writing this book and I look forward to reading the next one.”
Sue Coutts, co-ordinator of Bridgwater Fibromyalgia Support Group:
“Enjoying it! All that technical stuff, phew!,
but you explain it rather well.”
This second edition is a comprehensive UK guide, including desk research and responses to a UK questionnaire published by Fibromyalgia Association UK in 2009, and is written by someone who has been there, done that and recovered. It now contains five volumes, all available as separate e-books.
The first edition collated the questionnaire contributions and investigated diagnosis in the UK; possible causes, physiology and pathology; the role of sleep; availability of NHS treatments and prescription medications; the cost of alternative, complementary and self help methods (ranging from nutrition and exercise through acupuncture, counselling and homeopathy); fiscal and domestic demands; coping with housework, family, friends and colleagues; and claiming Employment Support Allowance and Disability Living Allowance.
This second edition also includes information about the ‘seven healing principles’ and my Buddhist tenets which are the foundation for my 3-day healing retreats in rural Dorset. Each chapter still contains a chapter summary and top tips from myself and other ‘fibros’.
Title and copyright page
FIBROMYALGIA: Road to Recovery
(a comprehensive guide)
Volume One: Facts from Fiction
by Elizabeth Mcsweeney
Smashwords Second Edition
Copyright 2011 Elizabeth Mcsweeney
Discover other volumes in this series at:
http://www.smashwords.com/profile/view/elizabethmcsweeney
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FIBROMYALGIA: Road to Recovery
At the age of 45, having suffered seven years of restriction, debilitation, exhaustion, pain, fear and disability, I have now recovered from fibromyalgia. Three years ago my GP suggested I write a book about coping with the illness. As a struggling single parent I didn’t feel like I was coping, far from it. In fact at one time the pain and fatigue of fibro left me with such low self-esteem that I felt worthless and suicidal. But this book is not just about managing the daily symptoms of fibromyalgia, it is a preparation for recovery.
My first steps in writing this book involved devising a questionnaire, which was published by Fibromyalgia Association UK in 2009, to find out if my personal experience of living with fibro paralleled that of other people’s. Over forty ‘fibros’ wrote similar experiences of diagnosis; medical treatment; how it feels to have fibro; how it has altered relationships with family, friends & work colleagues; sharing top tips about how to cope with domestic chores and manage symptoms on a daily basis; and explaining which pharmaceutical, complementary treatments & alternative remedies have helped (and which have not).
Several people wrote to me about how inner hope has been maintained through their Christian faith. In this book I introduce the role that my own Buddhist practice has played in my personal recovery. I am here to say that we were not born to live in pain and that recovering from fibromyalgia does not take a miracle, it is absolutely possible, but in the words of Buddhist monk Nichiren Daishonin:
“If you are unwilling to make efforts to heal yourself, it will be difficult to cure your illness. One day of life is more valuable than all the treasures of the major world systems, so first you must muster sincere faith.”
[from Daisaku Ikeda (2006) Buddhism Day by Day: Wisdom for Modern Life (Middleway Press, SGI-USA). For more information about the Buddhism of Nichiren Daishonin, see http://www.sgi-uk.org]
Faith here refers to the belief that you can and will feel well again: a chronic long-term illness doesn’t have to be a life sentence and, given the current economic climate in the UK and the poverty caused by disability and inability to work, there is no better time to challenge your fibro symptoms and take your first steps to recovery.
I would like to thank everyone who has written to me and contributed to this book, which is written as a specific reference for those of us living in the UK, but which I hope will transcend national boundaries. It is written, in a spirit of comradeship, as a comprehensive resource for anyone with fibromyalgia. I also hope it will offer a clear insight into the insidious nature of Fm, for your family, friends and colleagues. Some issues I have addressed to health professionals, administrators and legislators. I share with you not only my current knowledge and understanding about Fm but also my hope that you will be able to take your first steps toward the path of full recovery… if I can do it, anyone can!
In particular I’d like to thank my GP, Dr Anzriej J Soltys MBBS, who first suggested that I write a book about coping with fibromyalgia (writing this book became an integral part of my recovery process). At times this book may seem quite critical of the NHS/PCT treatment of fibromyalgia but I would like to thank Dr Soltys and his colleagues Dr Gilmour White and particularly Dr Andrew Douglass (retired) for their kindness, compassion and support. I’d like to thank homeopath Josephine Smolden, without whom I could not have recovered; Pam Stewart and Sue Coutts of Fibromyalgia Association UK, without whose encouragement I could not have persevered, and Anita Shinn and Sam Pine for their practical support over the years.
I’d also like to thank Fibromyalgia Association UK for printing my research questionnaire and all the people who responded to it, many of whom wished to remain anonymous and many of whom I quote in this book: Anne, Brian from Germany, Cara, Caroline from Lancashire, Christine, Edward from Powys, Elaine, Gillian from Bristol, Georgina from Northants, Kath from Hull, Linda from Buckinghamshire, Lorna from Lincolnshire, Margaret from Birmingham, Martine from Devon, Lorna, Mary from Toddington, Maureen from Luton, Mica from Somerset, Nicola from Wilts, Nigel from Tiverton, Nikki from Somerset, Nina from Middlesex, Saskia from Wolverhampton, Pat from Cleveland, Pat from Berks, Patricia from Wilts, Sandra from Kent, Sandra from Worcestershire, Sharon from Somerset, Sue from Nottingham, Dermot and Sue from East Sussex, Susan from East Sussex, Valerie from Somerset and Veronica from Belgium.
Acknowledgement and thanks must go to Helen Phoenix, my admin star and proofreader: this second edition makes far more grammatical sense than the first.
Most of all I’d like to thank my son Carl, for his care, support and wisdom beyond his years. It is for Carl I recovered and to Carl I dedicate this book.
Although the term ‘fibromyalgia’ is not an adequate label to describe the complex physiology of the condition, I have decided not to add the term ‘syndrome’, instead I will be abbreviating academic references to the condition as ‘Fm’ and colloquial informal references as ‘fibro’. In the same way I may refer, with familiarity, to ‘us fibros’, even though I consider myself to be now well and truly recovered.
A glossary of acronyms used is located at the end of this volume.
FIBROMYALGIA: Road to Recovery
Volume One: Facts from Fiction
Chapter One: Dark days to diagnosis
Chapter Two: What’s in a label?
Chapter Three: What it is not
Chapter Four: Cause and effect
Volume Two: Epione, Laso and Panacea (symptom management)
Chapter Five: Let’s get some sleep (the sleep/pain cycle)
Chapter Six: Biting the bullet. NHS referrals & treatments
Chapter Seven: Pain and pacification
Volume Three: Strategies for Daily Coping
Chapter Eight: Money matters: DLA and ESA
Chapter Nine: Struggling with housework: should I cancel the cleaner?
Chapter Ten: Family and friends
Volume Four: Self-help... The Search for Healing
Chapter Eleven: Treatments and therapies
Chapter Twelve: Vitamins, minerals and nutrition
Chapter Thirteen: Detox strengthening and acid-free diets
Chapter Fourteen: The importance of exercise
Chapter Fifteen: Seven Healing Principles
Chapter Sixteen: A three-day ‘Road to Recovery’ Programme
FIBROMYALGIA: Road to Recovery
Volume One: Facts from Fiction
I open this book using the analogy that suffering from fibromyalgia, and our often long and arduous hike to diagnosis, is like enduring ‘Hero’s Journey’: a journey of self-awareness.
In this volume I share the results of nearly two years of research and some rather complicated medical facts and figures. Living with fibromyalgia is living with mental as well as physical fatigue and the first few (rather ‘dry’) chapters - full of scientific terminology - may be the most exhausting to read. So for this reason you are invited, at any time, to skip forward to the end of each chapter, which concludes with a summary, followed by easy-to-read, bullet-pointed ‘top tips’.
This volume contains information about fibromyalgia, what it is not, medical causes, pathology, prescription medication and current NHS treatment, all of which helps lead to my own conclusion that the development of fibro is caused through suffering a battering of consecutive traumas (physical, emotional, psychological or spiritual) without time to fully recover in between. But let’s start at the beginning…
Chapter One: Dark Days to Diagnosis
Have you been suffering from inexplicable symptoms for years?
For most of us the symptoms of fibromyalgia creep insidiously into our lives following multiple physical and emotional traumas and our journey to diagnosis is a tiring and painful one. Between 2009 and 2010 I collated a survey, via Fibromyalgia Association UK, to find out about other people's experiences of suffering inexplicable symptoms. This chapter reveals a common story of a long, arduous and often stressful road to diagnosis. As part of my research for this book I asked: How many years have you suffered with symptoms of fibromyalgia, how many years did you suffer before correct diagnosis, and what was that journey like for you?
Responses to my questionnaire show that on average respondents suffered 12 years before correct diagnosis. While 10% of people waited 10 years and another 10% of people waited a whopping 30-35 years before their symptoms were recognised, 10% of people were given a correct diagnosis within one year of presenting symptoms to their doctor. So if you have been suffering from inexplicable and undiagnosed symptoms for years you are not alone. My findings corroborate the words spoken by Mr Rob Wilson, MP for Reading East, at the May 2009 All-Party Parliamentary Debate on Fibromyalgia at Westminster Hall. Referring to UK Fibromyalgia Association Trustee, Jean Turner, he said: “I am sure that we would all agree that the 13 years taken to reach a diagnosis... was far too long.”
[(May 2011) http://www.publications.parliament.uk/pa/cm200809/cmhansrd/cm090505/halltext/90505h0001.htm]
Having asked other people, ‘How many years did you suffer before correct diagnosis?’, I found it difficult to answer the question myself because the time-lag between first presenting symptoms to a GP and being given a diagnosis do not accurately represent all the years I suffered with inexplicable symptoms. Like many of you I believed that by ‘just getting on’ with life I would naturally ‘get over’ the symptoms... that they would eventually disappear. So I just ‘got on with it’. I also believed the symptoms to be part of ‘getting over’ periods of stress, or part of ‘getting old’. (I was 37 when I first voiced my concerns to a doctor!) Like chronic fatigue syndrome, it is the nature of fibro not to disappear but to be exacerbated by just ‘getting on with it’. So when, eventually, my symptoms became too intrusive and debilitating, I presented a scroll of indicative problems en masse to a doctor (and when I say ‘scroll’, it was nearly as long as a toilet roll and included, as a postscript, the self-diagnosis ‘hypochondria’). With hindsight I can trace a predisposition for various symptoms back into childhood, when my dad had to come and do his ‘football trainer bit’ by massaging my restless legs in the middle of the night when I couldn't sleep because of the pain. Everyone has a different journey to the symptoms and diagnosis of Fm. Kath, from Hull, sums up her diagnosis like this: “I believe I was lucky as I was diagnosed within 8 months of really suffering. I had to insist on a referral to a consultant and I paid privately... I do though, looking back, believe that minor symptoms started to creep on up to six years earlier.”
So why are only 10% of people given a correct diagnosis within one year? Many letters I received contained comments such as “my GP...
... was sceptical until I had a diagnosis (but is now helpful)”;
... doesn't want to know….. I’d like to see one who knows more about Fm than I do”;
... has little or no knowledge”;
... is hard to access, they only want to focus on other symptoms like arthritis in my spine or my Raynards”.
And one person was told by their GP that fibromyalgia:
“... doesn't exist ... that everyone gets aches and pains ... and that it was like M.E. ... those who get it are just very sad people”. (!)
The UK Government’s ‘Department of Health Chief Medical Officer's Update’, back in 2003, contained an article named ‘Fibromyalgia: a medical entity’, which began: “Fibromyalgia is the commonest cause of chronic, widespread musculoskeletal pain... ”. The article promoted a (then) new A5 leaflet from the medical advisory board of FMA UK (Fibromyalgia Association UK) detailing symptoms, diagnosis, treatment, contemporary ideas and underlying pathogenesis (the origination and progression of a disease). So there is really no excuse for the ignorance of individual doctors, although perhaps the British Medical Association could do more to help: there are currently (in 2011) only seven books in their library referring to it.
One woman described her GP as “a nice enough man who has so much to do...”, but wrote:
“I asked the doctor if he would like me to order him some leaflets... about Fm… for the waiting room in his surgery, but he answered that he had so many other leaflets about other complaints and he hadn’t time to read any of them”.
In July 2007 FMA UK submitted an application to the medical advisory board of the National Institute for Health and Clinical Excellence (NICE) with the aim of establishing a clear set of guidelines on the diagnosis and treatment of Fm. By May 2008 they had still not received a response from NICE and asked MP Rob Wilson to intervene. When finally NICE did reply, and only just in time for the May 2009 All-Party Parliamentary Group on Fibromyalgia debate, the response was negative. At the debate, Mr Wilson articulated his forthright support for people with fibro, saying:
“...FMA UK was informed that its application had been unsuccessful... the fact that FMA UK has received an answer does not excuse the arrogance or incompetence - or both - that NICE has shown until now. Frankly, it is insulting and deeply frustrating for those who work tirelessly to raise the profile of the condition to have to wait for a debate such as today’s before the relevant authorities take them seriously. A delay of two years is not good enough... it is imperative that a clear medical framework is set out for GPs.”
[(May 2011 http://www.publications.parliament.uk/pa/cm200809/cmhansrd/cm090505/halltext/90505h0001.htm]
There are still no clear diagnostic guidelines from NICE.
In September 2007 The European League Against Rheumatism (EULAR) issued some evidence-based recommendations for the treatment of fibromyalgia, including the need for comprehensive evaluation of pain and function; a multidisciplinary and multimodal approach; non-pharmacological management including heated-pool treatment, individually-tailored exercise programs, CBT, relaxation, rehabilitation, physiotherapy & psychological support; pain medications, including tramadol, tropisetron, pramipexole and pregabalin; and antidepressants.
[(2011) http://www.fibromyalgia-associationuk.org/what-is-fm-highlights-203?start=6]
While these guidelines have not been adopted by NICE, they are available to help inform doctors and rheumatologists, and obviously GPs are becoming increasingly aware of the condition and the lack of knowledge about it. However, I wanted to understand why over half of my correspondents had suffered, and waited, over 10 years before being given a diagnosis. I used my research opportunity to collate evidence of other people’s journeys… of their experiences… by asking: How were you diagnosed?
It transpires that 33% were diagnosed by an NHS rheumatologist (having suffered an average 11 years before diagnosis). 25% self-diagnosed using literature or the internet, presenting information to their GP and having their diagnosis confirmed through the ‘tender point’ technique by either a GP or rheumatologist. Only 12% were diagnosed solely by their GP following an extensive elimination process; less than 10% by an orthopaedic consultant; and less than 4% by a neurologist. A thorough elimination process can add years to the process of diagnosis. People wrote to me about how long they had had their complex multi-systemic symptoms and about painful personal journeys through the process of elimination, to the validation of a diagnosis. Responses included comprehensive medical histories (some from childhood onward); lists of symptoms (not all related to Fm); experiential definitions (how it feels to have Fm); concurrent medical conditions and incorrect diagnoses. The list of presenting symptoms I was told about included many shared factors, many common, but apparently unrelated, symptoms and some diagnostic ‘red herrings’:
Stiffness: in some or all joints, including spinal vertebrae and fingers (with and without pain), morning stiffness, muscle stiffness, being “completely seized up”, being unable to bend, stand, sit straight, get in and out of a car, or climb stairs.
Pain: local, acute and excruciating, frozen shoulder, “pain between shoulder blades and shooting down one arm”, pain in neck, lower back, all joints “feel like they are going to go ping”, pain in all joints including ankles, back, fingers and toes, “pain always centred behind my left eye”, migraine; global body pain, “like toothache or constant migraine but all over”; temporomandibular joint disorder (face and jaw pain), neuralgia, migraine; continual ’flu-like systemic aches and pains, intense aching, shingles-type pain, tingling, “like putting my hands and feet in stinging nettles”, prickling, stabbing, “like walking on glass”, sore and tender feet and hands; indescribable pain, “like having areas of bruising but there are no bruises”.
Fatigue: feeling “totally whacked”, physical and emotional debilitation, extreme tiredness as in: “if there was a sports category for extreme tiredness I could sleep for England and win an Olympic gold!”, weakening muscles, muscle atrophy, limbs feel heavy like lead weights, total exhaustion, muscle fatigue.
Insomnia: hip pain especially at night, inability to get comfortable, “like the last stages of pregnancy but permanent”, hip and knee tenderness, “can get to sleep but wake up within 2 hrs”, “pain in muscles and joints so bad I dream I have been beaten up”, “pain so bad it wakes me up”, inability to get back to sleep, “feeling like I've drunk 5 litres of caffeine”, lack of deep restorative sleep, “waking up feeling more exhausted, with more aches and pains and stiffness than the night before”.
Circulatory problems: Raynard's disease, numbness, tingling, itching skin, oversensitivity to touch, hands & arms and/or legs & feet numb, tingling or ‘gone dead’, leg cramps, internal (liver, womb, stomach) cramps.
‘Fibro fog’: memory loss, ‘foggy’ thinking, ‘lost’ moments, ‘senior’ moments, confusion, disorientation, forgetfulness (including forgetting days, appointments and how to spell).
Vertigo: loss of balance, dizziness, clumsiness, dropping things, falling over, falling up/down stairs, spinning, weak at the knees, stumbling, muscle spasms and lightheadedness.
IBS (irritable bowel syndrome), cystitis, incontinence and bladder control.
Other symptoms: such as hearing loss, eyesight weakness, low to borderline iron levels, severe ulceration, bunions, bruising easily, “no migraine pain but tunnel vision and flashing lights”, and period pains; hypersensitivity to light and sound; food intolerance; presenting symptoms of ‘fibroglycemia’ (sudden onsets of irritability, nervousness, faintness, dizziness, weakness) but with negative blood tests.; presenting symptoms of diabetes (frequent urination, weight loss, weakness & fatigue) but with negative blood tests; and presenting symptoms of imbalanced thyroid (fatigue, pain, palpitations, anaemia, dyspnea - laboured, shallow or short breathing) but with negative blood tests.
And enveloping all of this:
Depression: Is it any wonder with that list above that us fibros also suffer from depression? 100% of respondents to my questionnaire admitted suffering from depression. And while there is a proven link between serotonin levels and Fm, which I'll investigate further in Chapter Four, it goes without saying that constant chronic pain would be depressing for most people to bear.
I should clarify the list above by saying that not everyone who wrote to me had all these symptoms so, in short, not all fibros suffer from all the symptoms above and not all people suffering from the symptoms above have fibromyalgia. I found the presenting symptoms difficult enough to categorise so I have a great deal of sympathy with GPs having to reach a diagnosis. A few people who wrote to me have had the term “complicated or compounded case” written on their medical notes. Little wonder one person said of her doctor: “she says I’m complex and her eyes glaze over”. This confusion of symptoms and presentation of diagnostic ‘red herrings’ can lead people to ignore fibromyalgia altogether. Depression can be the biggest diagnostic ‘red herring’ of them all because, once a diagnosis of depression has been made, the search for in depth physical diagnosis often stops. I had a wise GP who stated categorically: “you are in pain, that is why you are depressed... constant physical pain would be depressing for anyone... we need to sort that out”.
Referrals to community psychiatric nurses & counsellors, and prescriptions for antidepressant medicines can be of help but, and this is the big BUT, treating depression alone doesn’t cure fibromyalgia and well-meaning but ignorant comments (from medical professionals) such as: “we all suffer from aches and pains and of course when we are depressed we feel more pain than when we are not” do not help. This gem of a quote came from the medical examiner who was instrumental in my being turned down for the mobility component of Disability Living Allowance, by implying that it was depression and not pain or fatigue affecting my mobility. Whilst there is an element of truth in the above quotation, it is, at best, an empty mantra because, of course, the reverse is also true. When aimed at pacifying patients such comments can lead to lack of action; they can seem patronising, coming from people who are not suffering constant chronic pain; and they can be damaging by adding to a long and difficult diagnostic journey and negative feelings. During my research I received many comments such as:
“constantly visiting the GP I thought I was going mad... it made me very depressed”;
“it was horrendous: I thought no-one believes what I’m telling them, I must be going mad, making it up... imagining it";
“it was frustrating, I felt like I was being fobbed off by my GP, fighting alone... I felt wretched”;
“it was tough not knowing [what was causing it]... feeling lazy... fearing terminal illness”.
Whilst suffering relentless, unacknowledged pain is miserable and frightening, many correspondents cited their histories of incorrect diagnosis leading to inappropriate, often painful, treatment: pain in knee diagnosed as tear in cartilage - operated on but pain remained; tingling, numb arms & hands diagnosed as trapped nerve - prescribed anti-inflammatories but no change; painful elbow diagnosed as tennis elbow - operated on but worse afterwards; pain around waist diagnosed as shingles - but no rash appeared and pain continued despite medication; pain in legs diagnosed as referred pain from hip - sent for hip X-ray but no treatment given and no sign of trauma or inflammation on hip X-ray and knee pain continued; pain in knee diagnosed as arthritis but diagnostic tests negative and pain remained; pain in lower back diagnosed as spine ‘wear-and-tear’- given X-ray and blood tests but, with negative results, no medication or treatment offered; constant pain in back of neck undiagnosed - referred to physiotherapist, but no change even after months of exercises; pain and weakness in thumb and fingers diagnosed as carpal tunnel syndrome - but an operation made pain worse.
Many more people who wrote to me had thought they were “going mad”, convinced after negative test results (including MRI scans, X-rays and blood tests) that it must be: “all in their minds”, “due to menopause” or “feeling middle-aged”. Fortunately, I found a wise GP who, emphasizing that I was only 40 and not 80, absolutely categorically told me off for thinking that! I say that I had ‘found’ this GP because my GP before diagnosis, compassionate as she was, had simply pacified me with her conclusion: that as a working single mum with a demanding toddler on my hands, and going through a divorce from a violent partner, of course I was feeling tired. She had encouraged me with what, at the time, sounded like words of wisdom (“there is nothing wrong…you are strong…and you will get through it”), but, in hindsight, this just lead me into years of silent suffering. I was one of those fibros who initially self diagnosed, having discovered information about fibromyalgia through pure serendipity. I had been asked by the local Fibromyalgia Association UK support group to give a talk about some helpful aromatherapy and massage products, I listened to the list of symptoms and it was like a light-bulb switching on in my brain. I read the leaflets with tears of recognition rolling down my cheeks and presented this information to a locum GP. He seemed rather affronted, confirmed my diagnosis with a half-hearted tender point test, and commented rather insensitively: “It’s like you want a label. Does having a label help? It won’t in this case, I’ve just been to a conference and know all about this... there’s no cure you know”. Fibros are constantly told that there is no cure but personally I know that’s not true and I’ll look at some healing techniques, self-help and chronic fatigue & pain management techniques in Volume Two, along with the ‘Seven Healing Principles’ (Volume Five) that are the foundation of my own three-day healing retreats.
But for now we have confirmed that Fm is enigmatic and difficult to diagnose. Through their website the UK NHS explains why the journey toward diagnosis can be so long:
“... There is no specific test that can diagnose the condition, and the symptoms of fibromyalgia can be varied and very similar to those of several other conditions... If your GP thinks that you may have fibromyalgia, they will first have to rule out any other conditions that could be causing your symptoms. These conditions include chronic fatigue syndrome (also known as ME), rheumatoid arthritis and multiple sclerosis (MS). You may have blood tests, X-rays, plus other scans in order to rule out conditions that have symptoms which are similar... if you are found to have another condition, such as those listed above, it does not necessarily mean that you do not also have fibromyalgia. As... a complex condition, when making a diagnosis, your GP will need to take any other symptoms and possible factors into account... Although there is no specific test that can be used to diagnose... there are two criteria that can be used to confirm the condition, once all other conditions have been ruled out... It is likely that you will be diagnosed with [it]... if your symptoms fit within these criteria... that you have had widespread pain for more than three months on both the left and right sides of your body, above and below your waist, and that you have pain in at least 11 of the 18 ‘tender point’ sites when they are pressed.”
[www.nhs.co.uk, 2009]
We’ll take a closer look at ‘tender points’ and ‘pressure points‘ along with the symptoms of pain and fatigue in later chapters, meanwhile I believe that the key to a speedy diagnosis lies in communication and I recommend re-presenting your symptoms to your doctor as often as it takes. Avoid saying things like: “I feel stressed”; “I’m always tired”; “I’m weak”; “I want to sleep all day because I can’t sleep at night”; “I hurt all over so much I just want to cry”; “my neck hurts”; “I feel uncomfortable sitting for long periods”; “my feet hurt when I walk down the road”, etc. Instead, use specific terminology such as: constant muscle fatigue; muscle weakness; chronic fatigue; total exhaustion; chronic pain; systemic pain; shingles-like pain and sensitivity; long-term pain; constant pain; temporomandibular joint pain; chronic constant muscle and joint pain; and insomnia (due to hip/back/neck/joint pain). List symptoms you recognise from the list above and use graphic descriptions such as some of these sent to me:
“I have total exhaustion even after minor activity”; “it’s like a migraine or toothache all over”; “like having to walk on glass constantly”; “the constant pain and exhaustion leaves me curled up on the sofa very depressed”; “my morning pain and stiffness on waking is so excruciating when I try to get out of bed or lift my legs to dress myself”; “I wake feeling more exhausted and in more pain than the night before”, etc.
Help your doctor to understand by using examples to illustrate any difficulties caused by symptoms. For example: “When my weekly home shopping is delivered it takes me a whole day (or sometimes two) to unpack it because bending and lifting causes my body to seize up”; “I’ve now been in constant pain X many years”; “I can manage 20 minutes of gardening before my body seizes up completely and I have to rest and wait for the next day before I can do anything at all”; “I have to sleep on the sofa because I’m too exhausted to climb the stairs”; “When I collect my son from toddler club we have to ‘nap’ in the car for an hour because I’m too exhausted to carry him into the house”.
Remember your British GP has only an average of seven minutes per patient so, if you need a diagnosis, help him or her by taking a written prompt list or hand them a list of all your symptoms (use the information above) and remind them of your past medical history and any emotional or physical traumas.
Chapter Summary
Everyone’s experience of diagnosis is different. With more information the average journey time of 13 years is starting to come down, though it appears, from my research, that those 10% of people given a correct diagnosis within a year are those presenting directly to a private specialist doctor or rheumatologist rather than an NHS GP. 33% of people who responded to my research were diagnosed by an NHS rheumatologist, having suffered an average 11 years before diagnosis. 25% self diagnosed using literature or internet, presenting information to their GP, and having their diagnosis confirmed through the ‘tender point’ technique. Only 12% were diagnosed solely by their GP following an extensive elimination process, less than 10% by an orthopaedic consultant and less than 4% by a neurologist. It seems that no one single route to diagnosis is better than another, but armed with information from Fibromyalgia Association UK you may have a shorter journey. Being given a ‘label’ offers temporary relief, because now you can know that you are not a hypochondriac, you are not going mad, there is a medical term for it, and the pain & fatigue that you suffer has at last been acknowledged. But having a label is not the end because, for everyone with a diagnosis of Fm, the journey is just beginning.
Top Tips - for a speedy and correct diagnosis
~ Good communication: re-present your symptoms to your doctor as often as it takes, using specific terminology.
~ Find a ‘listening’ doctor: if you feel like you are not being heard change your GP. You have every right to do so. Contact your local Fm support group for insider information about local doctors, or contact Fibromyalgia Association UK who are compiling a list of supportive surgeries.
The good news is that you now have a ‘label’. You may feel alone, but you are not. “Fibromyalgia in the general population has a prevalence ranging from 2.9% to 4.7%”.
[(April 2011) http://www.fmauk.org/general-articles-highlights-208/372-survey-of-five-european-countries-prevalence-of-fibromyalgia]
[Return to Table of Contents]
Chapter Two: What’s in a Label?
So now you want to know: what exactly is fibromyalgia? For me this was the most difficult part of writing this book because, although I suffered with it for longer than I care to think about, and was ‘labelled’ six years ago, I found it impossible to explain to friends and family exactly what it was or how it affected me on a daily basis. I spent many hours, while laid up in bed, researching internet definitions. I work on a little notebook PC, propped up by four pillows, because the weight of a laptop was too heavy and sitting at a desktop computer aggravated my muscle pain and other symptoms. I felt permanently like I was sitting still in a cold draft even when not, and my bed, with two quilts and a feather mattress topper, was comfortable and warm. But even resting in bed can be a double-edged sword, because just sitting or lying still too long also aggravates joint and muscle pain. The least helpful definition I found was one acknowledging it as:“...a legitimate and common entity”, as “...a cyclic and progressive illness manifested by multiple symptoms that may last only a few days in the early stages but later are present continuously” and as a condition which “...affects multiple areas and bodily systems until patients simply cycle from bad to worse”.
The most comprehensive definition was a list of symptoms from Wikipedia, while the most common was a simple explanation: that the word fibromyalgia is a term coined in 1976 to describe our symptomatic muscle pains. Derived from the Latin ‘fibra’ (fibre) and the Greek words ‘myo’ (muscle) & ‘algos’ (pain) it literally means pain in muscle fibres. Muscles are made up of bundles of fibres, often layering on top and across each other. When they are used, muscles contract and then relax again. In fibromyalgia some of the muscle fibres don’t relax; instead they remain contracted and become depleted (of fuel) and unable to release waste toxins. As a result, we suffer pain and muscle fatigue. During normal daily exertion muscle fibres become torn. During restorative sleep the body heals all manner of things including these tears. In people suffering from Fm this natural healing does not take place (or takes much, much longer) and a build-up of micro-tears leaves our muscles out of condition, using extra energy, and causing more pain and muscle fatigue.
If you know someone with Fm but are fortunate enough not to have it yourself, make a conscious effort to think about what happens when you overexert yourself. Perhaps an energizing walk or aerobic session makes you feel exhausted, but in a good way. You may feel stiff the next day, but know that with a good night’s sleep and a little rest you will feel fit and healthy. A couple of days later any micro-tears are healed and you no longer feel any pain or fatigue. But if you are unfortunate enough to suffer with Fm the micro-tears do not heal, the feeling of exhaustion never goes away and over exertion can cause painful and debilitating ‘flare-ups’ which may last days or weeks.
Because the name ‘fibromyalgia’ does not serve as an umbrella to cover the wide range of symptoms experienced, the term ‘syndrome’ was added or FMS for short. I agree with American doctor Paul St. Amand MD, Associate Clinical Professor of Medical Endocrinology, Harbor-UCLA, who wrote: “New terminology should be coined to properly reflect the perturbed biochemistry of this illness. Fibromyalgia means pain in muscles and fibres and therefore describes only a few of the patient’s symptoms”. I believe ‘fibromyalgia’ may even be a misleading label because it does not accurately describe the range of pain: pain which is not felt only in muscles. I suffered pain that was often bone deep (like severe toothache all over) with simultaneous skin pain (like shingles).
All fibros suffer from widespread pain at neuromuscular junctions – that is all the places where the muscles receive electrical input from nerve endings. These points of origin and points of insertion of muscles are often at skeletal joints (but not always). As a result, my experience is that the body prepares to ‘protect’ these painful areas resulting in inflammation and loss of mobility. The pain of Fm not only mysteriously migrates from one area to another but is experienced in different severities at different times. One day pain might manifest as deep toothache, another day burning like stinging nettles, another moment as cramp and throbbing, stabbing, tingling or numbness. Many differentials with one constant: relentless, soul-destroying, physical pain resulting in incapacitating fatigue.
Your GPs can’t tell what it feels like to be in pain twenty-four hours a day seven days a week so you must tell them. For me it felt like a triangle: one point was like shingles, the second like rheumatoid arthritis and the third like CFS. I was trapped in the middle suffering from pain, fatigue and reactive depression. At a local UK Fibromyalgia group tai chi meeting someone described it to me as an umbrella that lets more pain through some days than others. Another person said “it’s like having shingles permanently... the constant pain is just exhausting”. One carer very astutely summed it up as “the inability of the body to have restorative sleep”. To quote Christine Craggs-Hinton: “To be in constant pain; to feel too sapped to lift a limb, and to be bombarded, at the same time, by a whole host of other ailments... that’s Fibro...” [(April 2010) Living with Fibromyalgia (Sheldon Press)]
If you don’t suffer from Fm just imagine the worst bout of ’flu you have experienced (perhaps how sorry for yourself you felt or how hard you battled to struggle through to recovery). Now imagine not recovering from that bout of ’flu no matter how much you rested or how much you fought it: that’s Fm! When I suffered from this enigmatic condition I found it helpful to validate the experience with some clear definitions. According to UK Fibromyalgia [(2009) ukfibromyalgia.com]: “The pain comes from the connective tissues, such as the muscles, tendons and ligaments”. Fm does not involve the joints, whilst rheumatoid arthritis and osteoarthritis do. The Wikipedia explanation is very comprehensive:
“... a disorder classified by the presence of chronic widespread pain and tactile allodynia... recent studies suggest that people with fibromyalgia may be genetically predisposed... degree of symptoms may vary (daily)… with periods of flares or remission… generally perceived as non-progressive... defining symptoms… chronic, widespread pain and tenderness… moderate to severe fatigue... needle-like tingling of the skin, muscle aches… muscle spasms, weakness in limbs, nerve pain, functional bowel disturbances, and chronic sleep disturbance. Many patients experience cognitive dysfunction (‘brain fog’ or ‘fibro fog’)… characterized by impaired concentration, memory (and consolidation) problems... impaired speed… inability to multi-task, cognitive overload, diminished attention span and depressive symptoms... experiences of varying degrees of facial pain… high rates of comorbid temporomandibular joint disorder (jaw ache). Eye problems… pain, sensitivity to light, blurred vision, and fluctuating visual clarity… Symptoms can have a slow onset... beginning in childhood… often misdiagnosed as ‘growing pains’... often aggravated by unrelated illness or changes in weather… [becoming] more… or less tolerable throughout daily or yearly cycles… people with fibromyalgia find that, at least some of the time, the condition prevents them from performing normal activities such as driving a car or walking up stairs...”.
[(2009) http://en.wikipedia.org/wiki/Fibromyalgia]
Allodynia means a painful response to a normally innocuous stimulus. It differs from hyperalgesia (increased/hyper-sensitivity to a painful stimulus) and referred pain (felt elsewhere in the body, other than the point of stimulus), both of which also occur in Fm.