Fibromyalgia is subject to numerous debates. Even the medical world struggles to give an exact definition for this debilitating health condition. For the World Fibromyalgia day, we asked our patients to explain their illness.
“Nagging”, “throbbing”, “sharp pain”, “muscles being twisted and squeezed”, “stabbing hot needles”… Unfortunately, epithets are not scarce when our members describe the pain they feel, that “never goes away“. “Constant roaming pain and fatigue that is accompanied by attack on all my senses..like a monster has taken over my body”. Burning sensations are also common signs of fibromyalgia, as well as tenderness and fatigue: “Deep burning pain in parts of my body I never knew I had”; “the burning patches of pain like I’ve been lifting weights whilst running for the last 12 hours”; “skin & body ;tenderness like a big bruise”; “always tired”.
This diffuse pain touches almost every part of the body: head, neck, shoulders, spine, legs, arms, fingers... As for the intensity and type of pain, it varies from patient to patient, without any reason. Some talk about cramps, others mention needles and pins, swollen joints, twisted muscles, and for some these sensations can develop into an “excruciating” pain, vividly described by our members: “Feels as though being continuously hit on the leg by a piece of wood.”; “I feel like someone has a hammer and chisel to the backs of my knees”; “Feel like I've been run over by a truck”; “It is like your muscles are being twisted and twisted and your joints are being hammered and hammered”; “My whole body is stiff like i have concrete instead of a skeleton and every movement is like someone is chipping a bit with a chisel”; “Feels like I've done a thousand rounds with Frank Bruno then gone on to fight another with Mike Tyson”.
On the day of the survey, 64% of the respondents rated their pain 7 and more on the scale of 1 to 10, 10 being “unbearable pain”. And this suffering is not only physical: patients also mention lack of energy and trouble sleeping.
Care that could be improved
More than half of the respondents admitted that they are not satisfied with the care they get for their condition. Among methods of pain management, 73% of our members mention traditional painkillers, 36% use relaxation techniques, meditation and sophrology, 28% have tried natural remedies, 21% - physical therapy sessions, 14% have turned to cognitive-behavioural therapy, and 10% - to homeopathy. There are also those who practice less traditional methods to relieve pain, such as sport (ballet, tai chi, swimming), CBD oil, acupuncture, music, hot water bottles, ice pads, salt baths, electromagnetic pulse patches and tens machine.
For everyday life, everyone has their own tips:
“Meditation, natural remedies which reduce brain fog. Try your best to do gentle exercise and never give up"
“Trying to stay positive avoiding stress"
“Bath, Adult colouring, breathing”
“Know your limits, don't overdo things, rest as soon as you feel tired, delegate any job you can, don't be afraid to ask for help.”
“I think exercise is the key.....due to endorphins ....helps in keeping agile....and aiding more restful sleep”
“Heat and cold packs. Drink plenty of water. Light exercise. Rest between light chores.”
“Soak in a hot bath with magnesium and lavender.”
“Have foods that reduce inflamation.”
“keeping busy can help - my job stops me thinking about the pain, gives me something else to focus on”
“I give my pain a name. When it's at its worst, I get angry with it and tell it how it's taken my life away. It might not help too much, but it makes me feel a lot better.”
“I feel better after a walk or a full body massage. Swimming in warm water or relaxing in a jacuzzi, steam room or sauna helps.”
“Sometimes doing arts and crafts, sometimes focusing on things I'd like to do in the future, reading, listening to music, keeping a rescue shoebox full of things that touch the senses, smelly candles, pictures of places I want to go or have been, super soft blanket and stuffed animal, perfumes, colouring book, crayons, coloured pencils, pens and markers, all my best ones.”
”Get out of bed and think of anything but the pain, force yourself to go about a normal day, the longer i did this the pain stayed but i could manage it better."
And what do you do to manage your pain?