My chronic pain is so bad I thought doctors were hiding from me that I was dying
WHEN doctors told Sue Jones she would suffer with fibromyalgia the rest of her life, she had no idea the torment in store.
Sue, 62, Jones was diagnosed with fibromyalgia syndrome (FMS) in 2009, and for the last 13 years the incurable disease has left the mum-of-four bedbound for weeks, suffering chronic pain all over her body.
“Sometimes the pain is so bad I can’t put the soles of my feet on the floor,” says Sue, from Middlesbrough.
It’s a condition that affects around one in 20 people between the ages of 30 and 50, according to the NHS.
Amongst them are actor Morgan Freeman and Lady Gaga, who cancelled the European leg of her world tour in 2018 because of her symptoms.
What’s more, pharmacist, Abbas Kanani, notes FMS impacts seven times as many women as men.
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Currently FMS is diagnosed by a process of elimination, and there is no cure - sufferers have to learn to live with it.
Sue fears it's a sinister illness that too often goes under the radar, with people struggling to get a definitive diagnosis and effective treatment.
She said: “When I was diagnosed in 2009 doctors said it was not a progressive illness, but it has worsened.
“What could have triggered it is having four kids all under the age of five, or when they started leaving home, as that’s when it came to the surface.
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“I lost my dad in 2006, and in 2009 my eldest fought in Afghanistan.
“I was also under the gastric team, because I had chronic diarrhoea for two years, and then I was diagnosed with fibromyalgia.
“One of the symptoms associated with fibromyalgia is irritable bowel syndrome (IBS), so it started to make sense.
“But at first, I thought something was seriously wrong with me.”
Initially Sue assumed she had arthritis: “I never knew it was Fibromyalgia, I just thought it was arthritis because my ankles and hands were swollen and painful, my fingers were like fat sausages, and I couldn’t bend them.
“I went to the GP, who did blood tests, and referred me to rheumatology; they said all my muscles, ligaments and tendons had rheumatism.
“During the examination the consultant was touching ‘trigger points’ on my body and I was wincing, which are allegedly tell-tale signs of Fibromyalgia.
“I was referred to the pain clinic where they prescribed the painkiller Pregabalin Relonchem, and muscle relaxant Amitriptyline.
“I distinctly remember the doctor saying, ‘You have this for the rest of your life, all we can do is make you comfortable.’
“I thought I was dying. I thought the doctors were hiding something serious, and I came home and cried.”
'RELENTLESS PAIN'
For Sue the pain is relentless: “You get pain where you never thought imaginable, like in your eyes.
“The sensation is like a stinging everywhere.
“Once, I had a pain in my arm, and my veins popped up like the Loch Ness monster.
“The next minute my arm was bruised.
“I hadn’t hit it, it was just stinging, and friends feared it was a blood clot - turns out fibromyalgia does that.”
While there is no cure for fibromyalgia, experts recommend exercise, holistic remedies, as well as pain relief, all of which Sue has exhausted.
says: “Chronic pain is an incredibly personal experience; one may find relief with medications, another may find pain relief with low moderate exercises.”
expert, Dr Deborah Lee advises vitamin D, which supports joint and bone health, as well as the immune system, or Hormone Replacement Therapy (HRT) as it can “improve the quality of sleep.”
What is Fibromyalgia?
Dr. Deborah Lee, describes fibromyalgia as “a complicated medical illness” that has three main categories of symptoms: musculoskeletal pain, fatigue, and cognitive disturbance - alongside gastrointestinal conditions, anxiety, migraines, and more.
“FMS could be related to abnormal levels of certain chemicals in the brain,” explains Dr Lee.
“It causes alterations in how the brain, spinal cord and nerves process pain messages carried around the body.”
Fibromyalgia can take a while to diagnose as there are no specific tests, and it’s a process of medical elimination.
Dr Lee adds: “The diagnosis is made after the exclusion of other medical conditions.
“Typically, it takes at least one year for FMS to be diagnosed because many symptoms are non-specific and time is needed for the pattern of symptoms to emerge.
"However, it doesn’t seem to shorten life expectancy.”
Fibromyalgia has no root cause, and is not hereditary, but it has been suggested major life events could trigger it.
For Sue nothing eases the pain. She said: “I’ve tried everything, all medication and meditation.
“I’ve been referred to physiotherapy; I went from one to one physio to group sessions.
“But, when I said I had Fibromyalgia, the physio replied, ‘That’s what they say when they don’t know what’s wrong with you’, so I never went back.
“I’ve tried various muscle rubs, vitamin D supplements, and doctors advise sitting in the sun, as apparently it eases the pain - it doesn’t for me.”
Despite recommendations to exercise, it is impossible, as “simple” day to day tasks are excruciating.
Sue said: “I force myself to do things, but the pain is relentless.
“The worse thing is blood pressure checks, because the tightness of that cuff is too much to bear.
“Just sitting on a chair and my back is crucified. It’s worse than having children - I’ve had two without pain relief.
“I have days I can’t brush my hair because my scalp is too sensitive, and I rarely eat a proper meal, because my gums are sore. Even clothes hurt me to wear.
“The whole of your body is touch sensitive.
“When I go to bed, my entire body is in agony, and the duvet over the top amplifies the pain, so I lay dead still because I know when I move it hurts.
“Every Saturday I used to do the housework, but I can’t do that. I also have brain fog, and have become very forgetful.”
Naysayers claim the latter is a symptom of ageing, but Monika Wassermann - MD at - has insisted it’s a valid symptom, as FMS “impacts brain functions affecting memory, and concentration, known as ‘fibro-fog’”.
Admittedly, some days are better than others, but they are “few and far between”, said Sue.
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“On bad days I’m laid up for a week or more.
“Morgan Freeman said he won’t let fibromyalgia ruin his life, unfortunately, you don’t always have a choice.”
