Last week, I wrote about fibromyalgia (FM) and I have benefited greatly from feedback sent to me by FM sufferers – there are 1.75million in the UK, some of whom have had fibromyalgia for 30 years.
I have spoken to quite a few, who have helped me understand their personal experience of this disabling condition and, as a result, I wish to increase public awareness of what it’s like to live with.
I had written that the majority of sufferers make a full recovery and I’m sorry if this caused distress.
The experience of the sufferers who contacted me is that people with FM rarely recover, if ever.
I’m indebted to Louise Day, a sufferer, who has drawn up a short quote to help people understand FM.
“FM is a common and complex chronic pain disorder that affects people physically, mentally and socially.
Fibromyalgia is characterized by chronic widespread pain, multiple tender points, abnormal pain processing, sleep disturbances, fatigue and often psychological distress. For those with severe symptoms, fibromyalgia can be extremely debilitating and interfere with basic daily activities.”
I’d like to pick up on one of Louise’s points – the pain. It can be unpredictable, come on out of the blue, strike anywhere and be severe enough to stop you in your tracks. The skin and various points on the body can be hypersensitive to touch. This extraordinary sensitivity to pressure is the basis of the Pressure Point Test, which doctors use to confirm the diagnosis of FM.
So whereas when someone presses our skin we feel a dull ache, a fibromyalgia sufferer feels an excruciating pain.
This hypersensitivity extends to sounds that can be intolerable. I recognise this as a feature of migraine, which I suffer, and a hypersensitivity to movement, which, in common with FM sufferers, makes me vomit when I have a migraine.
One sufferer I spoke to described the Spoon Theory as a metaphor for FM. It was described by Christine Miserandino when she was floundering to answer a question from a girlfriend about what it was like to live with her lupus (an autoimmune disease that affects the skin, joints and many other vital organs).
She was trying to find the right words and, as she was in a diner at the time, she grabbed a handful of spoons and gave them to her friend. She explained that healthy people have a never-ending supply of spoons, sick people don’t. She started to take away the spoons from her friend, each one representing a daily task and she quickly ran out of spoons.
That’s what FM is like – each daily task costs you a “spoon”. A difficult one may cost two. You may run out of spoons before the day has ended. You’re too tired to eat. You go without supper and crawl into bed.
Fibromyalgia in numbers
sufferers in UK
There were common themes to the stories I’ve heard. Most sufferers rely on a cocktail of drugs to control pain and get through the day; many mention the “fibro fog” when the brain goes blank and remembering and thinking are impossible; most sufferers believe that it takes a rheumatologist or a sympathetic doctor to confirm the diagnosis; pain clinics are a mainstay for many to help manage the pain and learn coping mechanisms; the Pressure Point Test is diagnostic of FM; many sufferers find acupuncture helps.
Do we know what’s going on? Professor Ernest Choy of Cardiff University Institute of Infection and Immunology describes FM as an abnormal pain threshold linked to sleep disorders. He states there can be a family history of FM and rheumatoid arthritis, lupus and IBS can be linked to it. Restless Legs is common.
Everybody’s FM is individual to them but chronic pain is common to all.
Professor Choy feels there’s a fault in the central nervous system and how the brain processes pain signals. Triggers are illness, trauma, car accident, stress of any kind, but FM is not a psychological illness, though depression is a common feature.
He believes keeping a symptoms diary can be helpful. He also says that while “it may seem counterintuitive to recommend exercise to someone in pain and exhausted, it’s very important. Pain leads to weakened muscle, which requires more effort to move, increasing the pain – a vicious circle.” (see, August 2014)
If you type “FM recovery” into a search engine there are pages of personal anecdotes describing how people have overcome FM, including lifestyle changes, eating healthy food, exercise, hypnotherapy, CBT.
Many admittedly anecdotal stories have one thing in common – staying in the present, dealing with the symptoms in the here and now, listening to the body rather than the brain.
One approach I’ve come across is Reverse Therapy (RT) developed by Dr John Eaton and used in ME, Chronic Fatigue Syndrome and FM. RT is an educational process that teaches people to identify triggers that prompt the body to create distress signals in the form of symptoms, such as fatigue and unexplained pain.
It’s symptom focused, dealing with symptoms in the moment. This reminds me of mindfulness, which research has shown to benefit brain function. I mention it because some FM sufferers may want to try it. There are practitioners throughout the UK. I’ve discovered there are many FM support groups around the country and I would advise everyone with FM to contact one in their area