With Andrew Watson of Goodmeasure Pharmacy
From the outside, people living with the chronic pain disorder fibromyalgia look healthy and well which is why it’s often regarded as an invisible illness. Often, only those who experience the overwhelming number of symptoms will understand its severity.
Due to the increase in diagnosis in recent decades, fibromyalgia is often thought of as a fairly new illness. But it has existed for many centuries under various names. It was originally considered a psychological disorder and those who suffered symptoms, mainly women, were deemed hypochondriacs or attention seekers. Even Florence Nightingale was thought to present fibromyalgia-like symptoms after the Crimean War and was bedridden for the majority of her later life.
Today, despite more research and better acknowledgement, some people still don’t believe it is an illness. But for those living with fibromyalgia, the effect it has on their health and wellbeing is no joke.
What is fibromyalgia?
Fibromyalgia can be viewed as a spectrum disorder which affects the central nervous system; all individuals will experience different symptoms to varying degrees of severity. But, generally speaking, it is a long-term condition that causes widespread pain across the body.
Common symptoms include:
- Increased sensitivity to pain – aching, burning or stabbing sensation
- Muscle stiffness and spasms, particularly in a morning
- Difficulty sleeping
- Cognitive impairment – lack of concentration, focus, memory
- Irritable Bowel Syndrome
- Restless Leg Syndrome
- Pins and needles in hands and feet
- Anxiety and/or depression
Other symptoms may include dizziness, being unable to regulate body temperature, weight gain, problems with skin, vision, or breathing, and painful menstruation in women.
It is estimated as many as one in 20 adults in the UK have fibromyalgia, 90 percent of which are women. It is typically diagnosed between the ages of 30-50 but can affect any age from children to the elderly. An estimated 20,000 people in South Yorkshire live with fibromyalgia.
What causes fibromyalgia?
The medical cause is still unknown, but it is thought to relate to abnormal levels of chemicals in the brain, these being serotonin, noradrenaline and dopamine.
It may also be triggered by physically or emotionally traumatic events such as an injury, infection, surgery, giving birth, relationship breakdown or death of a loved one.
Due to the differential symptoms, a definitive diagnosis is often difficult and people may live with symptoms for many years before being diagnosed. Associated conditions which increase the risk are often rheumatic (affecting the joint, muscles and bones) and include osteoarthritis, lupus, rheumatoid arthritis and spondylitis.
Criteria for diagnosis is based around tender points – parts of the body which hurt to touch, such as the jaw, shoulder, hips and limbs. This could be severe pain in three to six areas, or mild pain in seven or more and pain should have stayed at a similar level for three months or more.
How is fibromyalgia treated?
Symptoms are unlikely to disappear, but treatment may ease the severity. A cumulative approach to treatment is usually taken, where various methods such as medication, therapies and lifestyle changes are put into practice together to control symptoms.
Strenuous exercise may be difficult for people with fibromyalgia due to the chronic pain, but gentle activities such as swimming or walking can help alleviate stiffness and pain. Some people benefit from holistic therapies such as acupuncture or massage which help reduce stress.
What works for one person may not work for another. Some patients may need high levels of potent painkillers to manage day-to-day, while others can keep symptoms under control with self-help methods such as diet, exercise and periods of rest.
Fortunately, fibromyalgia doesn’t seem to cause any lasting harm on the body, but leading a more sedentary lifestyle may have an adverse effect on health. Experiencing chronic pain can also lead to a reduction in quality of life.
The fibro frustration
A close friend of mine has lived with fibromyalgia for many years now and has often shared her experience with me to help me understand how it affects her. Before she developed fibromyalgia, she had a good job as a solicitor but gave this up when the fatigue and chronic pain worsened with her long working hours.
One thing I admire about her is that she has never let her diagnosis define her life despite her daily struggles. The mental fight alone must be difficult, before the physical ramifications are added. She also had two young children to raise.
Out of respect for her wishes, I’ve kept her story anonymous. But she hopes you may take from this how people with fibromyalgia experience symptoms differently – not everyone will have shared the experience she has had.
She initially began to feel unwell with a great deal of pain around 16 years ago when she was in her mid-30s. She remembers having a throat infection beforehand which might not have been the cause and could just be a coincidence.
“I remember being ridiculously tired, having a constant headache, tingling in my legs and severe pain in my ribs and back for what felt like weeks. Then the pain would move to other areas of my body. The most worrying thing was the cognitive impact. I went on a course and couldn’t remember how to write my name. Those first few years before I was diagnosed were horrendous and not knowing what was causing all these symptoms gave me panic attacks.”
She also gained weight quickly over the following few years, experienced puffy hands and feet and a state of dizziness. It took a long time to get a diagnosis and she says most health professionals back then were dismissive of her symptoms.
Since being diagnosed, my friend has tried lots of treatment methods to alleviate pain, such as reiki, acupuncture and physiotherapy which she says didn’t really help her – but may work for others. She is currently trying cold showers which is thought to help with the inflammation those with chronic pain have.
“My condition has always been a wax and wane scenario. I can feel rubbish for weeks and then I improve. It’s the fatigue that bothers me most these days. It feels like constant jetlag. I still get headaches but they’re not as extreme and the pain isn’t as invasive as it once was. My memory is still terrible and I get confused easily. I lack focus and concentration at times and am really disorganised.
“Some days I’m so debilitated by the symptoms and want to be in bed all day. Fortunately my lifestyle allows me to rest when I need to. I’m well-supported by my husband who picks up and fills in the gaps and my parents have always been great and very understanding. I can’t imagine how those who don’t have a good support system function.”
Support for fibromyalgia in South Yorkshire
If you are newly diagnosed with fibromyalgia and looking for support, the Sheffield ME and Fibromyalgia Group has been supporting people living with the chronic illnesses for 20 years and currently support over 340 members from across South Yorkshire.
Along with raising awareness of the condition, they also reduce social isolation and improve wellbeing with peer support sessions, and enable member to access statutory support such as welfare benefits and social care.www.sheffieldmegroup.co.uk