Generally speaking, when you’re diagnosed with a condition that will stay with you for the remainder of your life by your GP or another health professional, you will be given the information needed to better understand and process what you have; and perhaps even directions to further support to help you cope and manage it. But this is hardly the case with Fibromyalgia (FM) patients, as 59-year-old Kim Hendrey knows full well.
Diagnosed with fibromyalgia 22 years ago after the traumatic birth of her daughter in 1996, Kim had no idea what the condition was or what it meant for her daily life from there on. Instead of her rheumatologist presenting her with a thorough explanation of Fibromyalgia, and the steps to take to increase her health, Kim was left to contact a local Bournemouth support group herself. The founder visited her at her home, gave her a book on fibromyalgia, and said that she was more than welcome to join the group at any time.
“Unfortunately the times of the meetings were when the kids needed picking up from nursery and school. I felt isolated, tired, fatigued, exhausted and in so much pain and left to look after three children. I was desperate, but all my GP said was join a Gym. I joined one but this made me worse. My back and neck kept going into spasms; it was fruitless”. Kim contacted the group again, who advised her to change her GP and when she did he sent her to hydrotherapy – the best thing she could have done. “After five years of hydro classes I was able to join Pilates once I could lift my legs in and out the car with ease. I no longer needed my wheelchair or crutches…I was chuffed with myself”.
Research names it as one of the most common chronic pain conditions in the world – and yet fibromyalgia is still one of the hardest conditions to diagnose, and when it is, patients are left with just that; a diagnosis, some pain killers, and very little knowledge or direction to go in.
With estimates showing that nearly 1 in 20 people can be affected by fibromyalgia to some degree, and 7 times as many women as it does men, this condition has no outward tell-tales.
But it is anything but silent to those who have it. Increased sensitivity to pain, fatigue, muscle stiffness, difficulty sleeping, problems with mental processes and anxiety and depression; these are just a few of the
‘I was desperate, but all my GP said was to join a gym. I did and it made it worse’
symptoms that make up the condition that causes pain all over the body. It is thought to be related to levels of certain chemicals in the brain and changes in the way the central nervous system processes pain messages carried around the body, and can be triggered by a physically or emotionally stressful event.
“It’s important to recognise all the triggers that make you worse and to get in control of them” say’s Dr. Selwyn Richards who is a consultant and clinical lead for rheumatology at Poole Hospital. “Effectively fibromyalgia steals your health from you when you’re not in control and accepting that that’s the problem can be very difficult”.
As principle investigator at Poole Hospital for studies, especially in fibromyalgia and rheumatoid arthritis, Dr. Selwyn has realised that the more time he spends with fibromyalgia patients the more he can offer them in his abilities. “In general I believe that this is a low priority health care area, and although it’s a cause of high disability, most people have it indefinitely and never fully recover”.
Nobody knows how common the condition is, but it is estimated that somewhere between 1% and 3% of the population probably has it; which, according to Dr.Selwyn, means it is getting close to affecting the same number of people as type 1 diabetes, schizophrenia and epilepsy.
But whereas most people are aware of these conditions/illnesses, in regards to fibromyalgia they are often oblivious to it and just how serious a disability it can be; even making it difficult to work, exercise and do normal everyday activities with their family.
“I’d just like people to believe that the pain is real, and not laugh and say that it’s all in our head”, says Canterbury local and ex-army soldier, Tony Hambrook, when asked what he wants to see change for people living with fibromyalgia. Coming out of the army in 1996 after he collapsed, Tony was diagnosed after months of tests with Chronic Fatigue Syndrome (ME), and later in 2007 after a consultation with a neurologist he was diagnosed with fibromyalgia. But the late diagnosis had lasting effects. “It has taken so long and now it’s effecting my heart beat, and has produced coronary artery spasms”.
‘Effectively fibromyalgia steals your health from you when you’re not in control and accepting that that’s the problem can be very difficult’
Late diagnosis is a huge set-back for patients with this condition according to Julie Russell, who is a Rheumatology Physiotherapy Clinical Specialist and Service Lead at the Royal National Hospital for Rheumatic Diseases at Bath Hospital.
“Patients often feedback to us on diagnosis that they experience a sense of relief & validation – that they are not imagining or making it up. They regret that they did not receive diagnosis sooner so that they could learn how to manage it.”
Tony now works at RightGuard, a security company that covers the wider Kent area, and say’s that it can take days for him to recover from his shifts. “During my four days off I just sit and lay there for days sometimes. It normally takes three days for me to recover and if I do get worse, which will eventually happen, then I will have to re-think my work.” For the moment though, the job is keeping him going.
And this is something that leader of the Christchurch and District Fibromyalgia group, Marilyn Kellow, strongly believes in, in order to cope effectively with the condition. “You think 12 months on ‘am I going to be feeling like this?’ so you have to find things that will lift your mood and lift your pain. Having a really good hobby or interest is one of the best ways, because whilst you’re doing something your brain is suppressing the pain.”
At 59, Marilyn could very easily pass for someone 30 years younger with the active lifestyle that she incorporates into her daily routine, with pilates twice a week. But the fibromyalgia still affects her in the ways that it does with Tony.
“Some days I’ll get up and I really can’t do much at all, and I think ‘well I was fine yesterday’. But that’s how it affects you; some days you’re fine and others you just want to sleep because you’re so exhausted and the pain is suffocating.”