What is Fibromyalgia?
Fibromyalgia is a common & often distressing condition that is characterised by widespread pain and other associated symptoms.
Fibromyalgia is a disorder of central pain processing.
The chemical messages in the central nervous system (spinal cord and Brain) are sending the “wrong messages” both up and down the central nervous system. The result is that pain is felt when there is no inflammation, disease or damage to the areas that are painful.
Fibromyalgia Research has demonstrated:
- An imbalance between stimulatory and inhibitory neurotransmitters in the spinal cord
- Reduced inhibitory pathways (pain-reducing neural pathways down from the brain to the spinal cord)
- Altered function of the central pain-processing parts of the brain such as the amygdala
What are the Symptoms of Fibromyalgia?
The hallmark of Fibromyalgia is widespread chronic pain.
The American College of Rheumatology (ACR) have by far the best known criteria for diagnosis.
The previous 1990 ACR criteria required the presence of at least 11 specific tender areas on a map of the body (“trigger points”). The trigger points are well known and are still worth taking into account. Trigger points illustrate where the pain tends to be felt – such as the neck, outer shoulder, elbows, wrists, lower back, outer hips, knees.
The ACR 2010 criteria were introduced in 2010 and are most often used as a research tool but are useful. The ACR 2010 criteria are based upon the Widespread Pain Index and symptom severity scores. This score comprises of three different domains:
- A tally of all the different areas of pain from a picture map of the body – excluding pain from known illnesses
- A symptom severity tally of three symptoms: fatigue, waking unrefreshed, and cognitive symptoms. “Fibrofog” is reduced ability to think clearly.
- Other symptoms – there’s a huge list, each one that applies is ticked
Some of these other symptoms reflect the underlying disorder of central pain processing, and some reflect conditions that commonly occur alongside Fibromyalgia such as Chronic Fatigue Syndrome & Irritable Bowel Syndrome.
What tests are needed to diagnose Fibromyalgia?
The diagnosis of Fibromyalgia is a positive clinical diagnosis (ACR 2010 criteria).
Blood tests are usually required to rule out other conditions that may cause similar symptoms. The exact tests required will depend on the exact symptoms. Routine Bloods would typically start with a full blood count, biochemistry and a test for inflammation. There is an association between fibromyalgia and low vitamin D (cause or effect?), and provisional evidence suggesting that an overactive parathyroid gland may be associated with fibromyalgia. However, most people with fibromyalgia have normal blood tests, and it helps to expect these up-front to be “normal.”
There is a risk of so-called “false positive” bloods – that is , blood results that are abnormal but not significant.
Why is Fibromyalgia often a frustrating condition to have?
- The diagnosis may take some time & getting a diagnosis may be difficult. In the meantime, sufferers will start to doubt themselves and become increasingly frustrated.
- The pains have to “start somewhere” – and it’s only later that they become more widespread by which times a lot of tests will probably have been done.
- Laboratory and imaging tests are negative – the lack of a “positive test” is a common cause of frustration.
- Some lab tests may however be “abnormal.” Abnormal results may be a false negative, a common one being a positive ANA which is found in 15% of the population.
- Fibromyalgia is linked to a large number of symptoms but it can’t be assumed that all symptoms are due to fibromyalgia because some may be caused by other conditions. Not every “joint pain” for example is necessarily due to the fibro.
- Fibromyalgia may develop alongside other conditions that cause pain – to know what’s what can be difficult. For example, around 1 in 5 people with Osteoarthritis or rheumatoid arthritis, and 2 in 5 people with lupus, have the 2010 criteria for Fibromyalgia. Fibro may exist with these other conditions.
- It can feel as if you have to justify how you feel to others – there is nothing to “show” like a swollen joint, rash or fever.
- It’s a condition that waxes and wanes. The “flare ups” or “set backs” are difficult to manage.
- The condition may be long term – and living with any long term condition is not easy.
- There is no magic-bullet that will cure the condition.
Ouch, yes, Fibromyalgia is not an easy condition to live with. Now let’s talk about what helps.
The person with Fibromyalgia can feel as if they have to justify how they feel to others – there is nothing to “show” like a swollen joint, rash or fever.
What is the treatment for Fibromyalgia?
- Get a diagnosis – ultimately people often get frustrated and/or depressed without a diagnosis. A General Medical Practitioner is trained to diagnose fibromyalgia and is aided by a myriad of high quality guidelines. A referral to a Rheumatologist may sometimes be needed when there is doubt about the diagnosis. Without a diagnosis, how can someone with Fibromyalgia move forward?
- An understanding of the nature of Fibromyalgia. Pain causes fear – it’s a completely natural & evolutionary response to pain. Understanding the nature of the condition is important so that the sufferer can live with the condition. It’s tempting to fight the fibro but over-doing it tends to lead to relapse.
- Identify what makes the fibromyalgia worse. Many people experience “boom and bust” – doing more on the better days but experiencing a worse day the next day. Keeping an activity & symptom diary is helpful. Stress is part of every day life for most people but managing stress may be more important in those with Fibromyalgia. Some triggers are obvious – a viral cold for example.
- Exercise is good but activity should be individualising. People with severe Fibro may not be able to do any exercise but can usually do some activity – even if it’s walking a few yards. At the other end of the scale, people with mild fibromyalgia lead a near-normal life. The key is to avoid over-doing it on good days and paying for it on bad days … this is the concept behind pacing. The idea is to keep your activity levels within levels that work for you – between the activities you can do on a “good day” and those you do on a “bad day”. This takes trial and error and keeping a diary is again really useful. It is recognised that blanket “exercise” can be counter-productive because of the risk of relapse. This is why activities should be tailored to the individual.
- Active relaxation which are relaxation exercises. There’s a wide variety of relaxation exercises to choose from. Mindfulness is also useful.
- Sleep. Often people have sleeping difficulties and looking at sleep hygiene can be helpful.
- Medication may have a role to reduce pain and improve quality of life. Typical ones are Amitriptyline, duloxetine, fluoxetine & Pregabalin that all change the chemical balance in the central nervous system. Medication is usually started low and gradually increased.
- Allied Health Care Professionals such as Physiotherapists, Occupational Therapist and Psychologists using specific pain management techniques may each have an important role to play.
Without a diagnosis, how can someone with Fibromyalgia move forward?