What is it?
Fibromyalgia, (fi-bro-my-al-juh) abbreviated as FM is a widespread musculoskeletal pain & fatigue disorder. There are many other “knock on” symptoms associated with this condition, bumping the symptom list to over 200.
There doesn’t appear to be any hard facts to suggest what actually causes FM but many sufferers agree that there has been some kind of “body trauma” before the onset, such as surgery, an accident, illness or bereavement. Some research has found that people with FM have low levels of hormones serotonin which helps regulate moods, noradrenaline which contributes to responses to stressful situations and dopamine which helps control mood and behaviour.
- Physical trauma resulting damage to the body’s tissue
- Psychological trauma resulting in emotional damage
- Viral infection
It is a chronic problem which leaves it’s victims in agonising pain and total exhaustion that can be seriously debilitating. Studies on sufferers have shown that It appears to be a lifelong condition that can only be treated with medication to ease the symptoms as no cure is in sight.
It has been estimated that 1 in 20 people worldwide have this condition and affects men and women of any age but in most cases, FM develops between the ages of 30 and 60 years. FM comes under the umbrella term “Invisible Illness” and just like sufferers of MS, Depression, Lupus and diabetes FM gives the appearance of a healthy individual on the outside while terrible pain and suffering experienced on the inside.
Diagnosis and Symptoms
The road to diagnosis is often extremely long (years) as there is no one test for FM. Tests are conducted to rule out other conditions until you are left with the classic symptoms of continuous pain for over 3 months and painful pressure points in various parts of the body on both the left and right hand side.
As previous mentioned there are over 200 symptoms that appear at random times making a diagnosis very difficult. It is a case of eliminating various other conditions first which can take years if you are unlucky enough to come across the few GPs who still believe it is imaginary or that haven’t even heard of it.
Other conditions appear to go hand in hand with FM. Most find that they also have Arthritis, IBS, Myositis, anxiety and depression. You may be referred to a consultant in Rheumatology which usually where your diagnosis is made. FM information can be found on many arthritis websites although it affects muscles rather than joints.
Depression is common, often due to the life changes caused by FM & the frustration of constantly being ill. Other contributing factors are the loss of work, leading to financial worries & loss of friends due to not being able to socialise as you did.
Most common symptoms:
- Sensitive to light, smell, sound.
- Muscle pain all over.
- Sensitive to sunshine.
- Body temperature problems
- Cognitive problems (Fibro Fog)
- Chest pain
- Numbness & tingling
- Restless Leg
- Jaw pain
- Vision problems
- Memory loss
- Poor concentration
- Grinding hip pain
- Headaches / migraines
- Irritable Bowel Syndrome
- Feeling overwhelmed
- Muscle twitching & spasms
- Loss of energy
- Extreme exhaustion
“Flare ups” vary from one person to another and often knock you off your feet, making you bed ridden for days or even weeks. Visiting your GP can often feel like a waste of time as they have no cure, usually just suggesting you take your meds and rest. But, It is important to be aware that sometimes you may be ill with something unrelated so if you are not sure, always go to see your GP. I had shingles and thought it was a Fibro flare up until the itchiness and pain become so unbearable that I went to see my GP.
Learning to manage
Some days low energy levels combined with pain means that getting out of bed & dressed is all you can do. All your usual daily activities have to be prioritised and learning to ask for help and say “no” to people who ask for favours of you is a must in order to manage your condition successfully. As a FM sufferer myself I have found that the easiest way to describe the huge amount of symptoms is to say it’s similar to flu but 24/7 and with no end in sight.
There are a few theories which explain the energy saving needed to survive the day, but I think the mobile phone example is most likely to resonate with most people;
Your mobile phone has 1 bar of charge left. Do you make random unnecessary calls & texts, or do you prioritise?
You would think that was an easy decision, but when this is a daily occurrence, colleagues, family and friends start to question why you haven’t popped round to see them, why you can’t babysit, why you won’t be into work today.
Normal healthy people have a full charge each morning. Fibro sufferers have 1 bar or less so they have to be careful how they use their energy and sometimes this means not joining in some activities or events even if they would like to.
Shopping, getting dressed, children, cooking, washing…these all take some charge. What about work, socialising and family commitments? Keeping other people happy can no longer be a top priority. These challenging situations all have to be dealt with on top of the fact that you are unwell. No wonder depression is often lurking at every corner.
Learning to say “no” has been a valuable life lesson. Fibro sufferers cannot always be available to do favours like babysit, work extra hours or give you a lift somewhere. They even have to say no to things they would have previously enjoyed. We have to be very careful that we have enough energy to look after ourselves for instance making a meal, bathing or getting to a hospital appointment. There is often very little energy left for socialising, shopping or other things healthy people take for granted.
On occasion when I have tried the enjoyment of a night out, I feel overwhelmed by too many people & conversations that I cannot keep up with. My words don’t come out correctly & my temperature gauge is broken so I sweat at a ridiculous rate causing embarrassment and extreme discomfort. I also know that the following day, I will be in bed as I have pushed myself too far just by being in that environment.
You can often wake in the mornings to find you have yet another symptom and it can leave you equally as quickly, so planning ahead can be fruitless and frustrating.
Personally, I find that I can only do 1, sometimes 2 things each day above getting out of bed. As the day goes on, the pain gets worse. When the decision has been made to take painkillers, you are then left feeling drowsy and unable to drive or concentrate.
Sadly, levels of sympathy change between those with a bandage or plaster cast giving the impression that the pain is more “real” and people with an invisible illness. This often leads to extra stresses such as family, friends and colleges not understanding the pain or perhaps not even believing that there is a problem at all, leaving people without the support & sympathy they may need.
There can be a humorous side and learning to laugh at yourself can make a huge difference to your mood. My family find it amusing that if they can’t get hold of me, I am either in bed on at the doctors and the fact that my wardrobe, which used to be filled with heels and nice clothes is now taken over with a huge selection of pj’s, slippers and dressing gowns.
Local support groups, both on-line and held locally, are a great way to find support & advice from others who have an understanding of your life limits, financial troubles or yet another mysterious symptom. You can exchange views on medication, the benefits system and the organisers are often a wealth of knowledge. Mind you, you soon become an expert in the condition as the medical world can’t offer the answers to your questions, you find that by listening to your body you soon learn how to manage it & what is good & bad for you.
It makes a huge difference to speak with people who understand your situation, can offer tips and advice and mainly, believe you! When you discuss the embarrassment of walking with a wobble and people thinking you are drunk, weak hands and spilling food or drinks down yourself like a child and you keenness to put your pj’s on and get into bed, loaded with meds are suddenly responded with “Yes, that happens to me”. Suddenly you don’t feel so alone.
As with any long term illness, feeling depressed and confused about who you are and what you can achieve may be unavoidable. Communication is important so counselling can help by offering a safe environment to process the changes to your life and look at the positive and helpful possibilities that can help you to feel more in control.
Living with Fibromyalgia: New Edition – By Christine Craggs-Hinton – ISBN: 1847091008
Figuring Out Fibromyalgia: Current Science and the Most Effective Treatments – by Ginevra Liptan – ISBN-10: 0982833970 / ISBN-13: 978-0982833971
Fibromyalgia: A Guide to Understanding the Journey (Kindle Edition) – by Shelly Bolton
Kaye Townsend (MBACP)