This debilitating condition is little-known and often misdiagnosed but it can be managed
Imagine aching all over your body and having muscles that are too sore to be touched, or waking up after 12 hours sleep still feeling exhausted with a cloudy head and irritable bowels. This is the reality of people who have fibromyalgia. Because of its wide range of symptoms, it’s quite difficult to diagnose.
Cases of fibromyalgia have risen in the last 20 years and this is probably because of increased awareness. However, there have been suggestions that the Western world’s hectic lifestyle and increasing stress levels could also be a cause. It’s thought that 16-40 million people worldwide have the syndrome with an estimated 2 per cent of the UK population (around one in 50) being affected. The figures are estimated because many people have yet to be officially diagnosed. It affects more women than men (in a ratio of 10:1) and any age group can get symptoms, although many of the cases are diagnosed during middle age. Children can also suffer from it.
What are the symptoms?
They vary, but often include:
Widespread muscular and joint pain The pain you feel is very individual and can appear all over the body including the knees, neck, chest, and elbow. Pain in the jaw can affect as many as 90 per cent of fibromyalgia sufferers according to a 1997 report. For some the pain is such that they can no longer carry out a normal lifestyle and have to give up work or, in extreme cases, become wheelchair bound. For others, the pain is there, but much easier to manage.
Fatigue and unrefreshing sleep Many fibromyalgia sufferers still feel exhausted, even after a full night’s sleep. This can lead to blurred thinking and memory problems which sufferers have dubbed ‘fibro-fog’.
Irritable bowel syndrome is believed to affect 40 to 70 per cent of sufferers.
Sensitivity to temperature, noise and light This is linked to imbalances within chemicals in the brain which enhances sensory stimulation to a level which can be extremely uncomfortable.
Other common symptoms include restless legs syndrome, depression and a weakened immune system.
What causes it?
Nobody really knows what triggers fibromyalgia. However, there are certain features or causes that are common to it.
Neuro-transmitters Researchers have increasingly found that people with fibromyalgia have higher levels of a neuro-transmitter called substance P, a chemical in the brain that transmits pain signals. This means that your body becomes over-sensitised to pain, and something that may cause a slight ache to some people, is agonising for fibromyalgia sufferers.
Genes Fibromyalgia can be hereditary, so if a family member has it, your chances are increased.
Trauma Studies show that fibromyalgia can be triggered by some kind of trauma, either physical or emotional. Suffering whiplash after a car accident is often linked to fibromyalgia and the chemicals activated by the stress of the event can affect the nervous system in the body. Other triggers include viral infections, childbirth, an operation, hormonal changes such as pregnancy and childbirth, or an emotional event such as a bereavement.
Stress While stress does not necessarily cause fibromyalgia, it can result in a vicious circle. You’re stressed because you’re in pain, but the stress ends up affecting your body even more and causing more pain.
Getting help
Diagnosis of fibromyalgia results from a gradual process of excluding many other conditions, which have similar symptoms, such as chronic fatigue syndrome or arthritis. Your doctor will usually refer you to a rheumatologist where they can examine you.
There is no cure at present for fibromyalgia, but there could be one on the horizon. Research trials have focused on neural imaging, which looks at how different areas in the brain are affected by pain. There is no set treatment for managing your fibromyalgia as it depends what symptoms you have and what works best for you. The best way to treat it is by using a combination of different methods.
Pain management Some pain specialists will refer you to a pain management programme, where lots of specialists e.g. doctors, nurses, physiotherapists, occupational therapists and psychologists will help you manage your symptoms. You will be given advice regarding exercise and physical activity and be taught techniques for deep breathing and relaxation and stress management as well as how to control your condition so you don’t become overwhelmed by it.
Painkillers The rheumatologist may prescribe non-steroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen to reduce pain while medicines that boost levels of serotonin in the body can also help improve sleep and low mood. Sometimes antidepressants are prescribed but these are for sleep and pain symptoms rather than actual depression.
Exercise Pick gentle forms of exercise such as yoga, swimming or walking and start slowly, building up levels gradually otherwise you could do more harm than good. As well as the positive effects on your muscle, joints and your circulatory system, exercise also releases endorphins which make you feel good.
Hydrotherapy and Balneotherapy involves your body being immersed in warm, mineralised water, such as in a thalassotherapy pool.
Massage A study presented at the 2007 EFIC Pain Congress found therapeutic massage to be the most popular complementary therapy among fibromyalgia sufferers, due to its relaxing effects.
Magnesium supplements can help fibromyalgia as the mineral is needed for production and transportation of energy within the body’s cells.
Essential fatty acids found in omega-3 and -6 may help fibromyalgia sufferers as they have an anti-inflammatory effect.
Glucosamine is also thought to help as it helps joints stay mobile.
Antioxidant supplements such as vitamins C or E are vital for fibromyalgia sufferers as they help mop up the damage caused by the inflammation that occurs within the body.
Multi-vitamins containing a good level of B vitamin is essential for keeping the immune system healthy, as in fibromyalgia sufferers it tends to be weaker.
Diet A healthy, balanced diet will help you keep on top of fibromyalgia. Avoid stimulants and depressants such as caffeine or alcohol – eventually your body will crash and burn if you become too reliant on them. Some fibromyalgia sufferers find reducing sugar-based foods helps their IBS symptoms.
The key to dealing with fibromyalgia is finding out what works for you. Accept that you’re going to have good days and bad days and pace yourself accordingly. By listening to your body, it is possible to keep a hold on the condition. Try to keep active and set some time aside to do some deep relaxation each day.
Fibromyalgia Association UK can provide information and support on the condition and also publishes a dedicated magazine called FaMily Magazine.
Find out where your nearest Fibromyalgia UK support group is by calling 0845 345 2322 or by visiting www.fibromyalgia-associationuk.org.
Do contact your GP or other health professional if you become worried or concerned about your symptoms or need any further medical advice.
Expert: Dr. Nicola Adams is a lecturer and researcher in the Faculty of Medicine & Health Sciences at the University of Nottingham. She has a special interest in managing fibromyalgia through complementary and alternative therapies.
Words: Hannah Fox
9 comments
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I have suffered with terrible pain all over my body, extreme fatigue and numbness in my arms,legs and feet. This is a debilitating illness which changes your life. I am so pleased this condition has now been recognized as I have felt isolated due to the fact that no-body understood my symptons. My life has changed so much because one day I can cope with the pain, then the next day or even days I spend in bed. I really hope that a cure is found as I just want to be pain free and live a normal life.
Comment by Helena Slack on 15 February 2010 at 1:34 pm
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Hi Helena, just wanted to say you are not on your own and I know how awful the isolation is when you are housebound. I bet on the odd day when you struggle outdoors people say “but you look okay” and you want to throttle them!! Here’s hoping for a cure asap, I’m fed up with the itching and soreness caused by my Butrans patches!!
Comment by Gillian Wright on 4 March 2010 at 9:47 pm
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Hi,
Don’t give up, I have suffered for years since a traumatic child birth. My shoulders have been my worst areas, even now as I am improving. Keep a positive attitude, and really, even though initially I ache, swimming works fantastically for me, if I can go twice a week, I feel like a different person! I also suffer from bad muscle spasms in my shoulders, swimming helps with this also and keeps it at bay.
Make sure you eat healthy and try the deep breathing etc.. It hasn’t gone completely but there are things worth trying that help you to manage the symptoms, try them and good luck. XComment by Linda Morris on 30 March 2010 at 1:03 pm
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I was diagnosed with FIBROMYALGIA in January 2009 by a Specialist doctor from ST Thomas Hospital London..Where they have a Special unit called The INPUT Pain Management Unit..They deal with All types of Pain including Fibromyalgia..I was Lucky to attend their 4 week coarse,Which i must say helped me understand this condition and give me answers to All of my questions,As well as giving me practical solutions..In my Experience there is NO pain killer that can take the Fibromyalgia pain away totally…But there is HELP out there..
Comment by malcolm humphreys on 4 April 2010 at 1:21 am
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I was diagnosed last September when the pain was all over my body and I was unable to work due to the exhaustion. I am still off work however the pain is beginning to get under control with pain relief. I am finding pacing myself the most dificult thing to do. I cant work out what triggers the pain but I know when I have over done things because of the exhaustion and pain. I desperatley need to return to work but as I never know from one day to the next how I will feel and what my capabilities will be, it has not been possible yet.
I do try to keep a positive attitude and if I cant do something one way because of the pain I just adapt and find a different way to do it.
Can anyone advise me how to move forward and as the consultant said ‘Pace yourself and learn to say know or you will crash again’
Comment by Mary O,Brien on 5 April 2010 at 6:36 pm
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I know exactly how you feel. I have recently been diagnosed with fibro and I also have joint hypermobility. I also find it difficult to pace myself and am also off work. I am considering ill health retirement because my job is very demanding and I can not tell from one day to the next how I am going to feel.
I suffer a lot of pain and get depressed at times and sleep is a nightmare unless I take lots of painkillers. So I do understand how you feel.
Comment by angela hair on 7 April 2010 at 4:03 pm
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Hi, I have diagnosed myself as having fibro as 5 years ago I tripped over hitting my head and knees and ever since I have suffered pain mainly in my right leg but tender muscles all over. I seem to have the majority of symptoms listed and have anxiety.
I have tried natural remediedsto increase seretonin but these made me more anxious even though they seem to relieve the pain. I do have periods of time when the pain goes and this seems to be when I am generally more relaxed.
I would be gratful for advise as I want to continue to lead a full and active lifeComment by Gay Lewis on 24 April 2010 at 6:04 pm
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I believe it is essential for a person to have a hobby they enjoy and join a similer group and get involvd It has been a lifeline for me ,
Comment by james diskin {76) on 24 July 2010 at 12:52 pm
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I have had Fibromyalgia since 2005 x i take co dydramol 4 times a day for the pain and amitryptylline to help me sleep x I have anxiety attacks too x Im currently a student and study mainly at home due to the good days and bad days x The winter is the worst for me and thats when i am at my worst x The summer is alot better for me but the pain is always with me but its at its best at this time of year. Not many people know about this even now x I tell people I have FMS and they say “whats that!” My teachers dont even know what it is when iI tell them and I feel if they knew about the symptoms and the syndrome then we would get alot more understanding from them x Like one lady said “people say but you look okay and you want to throttle them!!” I know how you feel because I have that x one guy told me being on pain killers was bad for me but without them I would be bed ridden x We need to bring awareness to FMS more than there is now x I hope there is a cure soon (as stated above) as If I had one wish it would be to have my health back x
Comment by Karen-Marie on 25 July 2010 at 4:59 pm
