Fibromyalgia is a long term condition that causes pain all over the body. It can also cause symptoms of stiffness, fatigue, sleeping problems, headaches, IBS and problems with mental processing, or ‘brain fog’. The cause of fibromyalgia is unknown, but scientists think it has something to do with abnormal levels of chemicals in the brain and a change of how the brain processes pain signals. Anyone can get fibromyalgia, although it affects more women than men. Fibromyalgia is usually triggered by a stressful life event such as childbirth, a bereavement, an operation or a breakup.
Fibromyalgia is a chronic condition that cannot be cured, however, the symptoms can be improved and managed. Better understanding from the person who has fibromyalgia and from the community in general can help to improve life with the condition.
It’s an invisible illness
Fibromyalgia pain presents in different ways, but a good way of trying to imagine the pain is by thinking back to a time you had a serious flu and your muscles had a deep ache all over your body. Fibromyalgia can be a similar type of pain, although sufferers may experience cramps, twitches, throbbing or sharp pains and even sore burning skin. Fibromyalgia doesn’t just cause pain in the muscles, but in the tendons and ligaments too. Fibromyalgia can also cause localised pain in the head, neck, shoulders and lower back, these areas can feel tight and knotty.
Fibromyalgia is invisible, unlike a broken leg, it’s something that can slip from the mind of people who don’t have it quite easily. If somebody has chronic pain they may need to utilise disabled toilets or seats on the bus – without judgement that they don’t have anything visibly wrong with them. The pain is real, whether you can see it or not. Just because someone looks fine does not mean that they are.
Mornings can be hard for people with fibromyalgia
Because people with fibromyalgia often have trouble sleeping and because their pain and symptoms are usually worse first thing in the morning, mornings are not the best time for people with fibromyalgia to do things. If you have an employee with fibromyalgia you could discuss flexible working time with them. This could mean that they work 10-6 instead of 9-5, for example. All employees have the right to ask for flexible working times, and adapting to your employees can help you retain staff rather than pushing them to quit because of illness. Roughly one third of people with fibromyalgia are out of work, an adaptive and understanding environment could help more people stay in work. Read here for government advice about flexi working hours.
Fibromyalgia comes and goes – and can be unpredictable
People with fibromyalgia can have good days and bad days and often these good days come at totally unpredictable times. This can make planning things difficult and mean last minute cancellations from time to time. Don’t feel like the person you know with fibromyalgia is making excuses not to spend time with you. Flare up’s can happen without much warning! If you have fibro – learn to say ‘no’ without feeling guilty. Over stretching yourself and pushing yourself too hard might cause problems for you the next day.
Exercise is good for fibromyalgia
Exercise has been proven to improve symptoms of fibromyalgia, but the wrong type of exercise or too much of it can cause pain. Gentle exercise like short walks, yoga or swimming can help improve symptoms over time. If even this level of exercise is too painful then a physio can recommend short 5 minute stretching exercises that can be done intermittently at home.
Fibromyalgia has triggers
Understanding these triggers can help you prevent flare ups. The weather, temperature, stress, over exertion or hormonal fluctuations like PMS or menopause can cause fibromyalgia to get temporarily worse. Keeping a diary of these triggers an avoiding them (where possible) can help minimise the impact of fibromyalgia. A pain diary can help identify what makes fibro worse and what makes it better.
Medication is not a fix all
Medication for fibromyalgia is improving all the time, but medication should be used as part of a number of things in your life that help keep symptoms at bay. The painkillers and antidepressants doctors prescribe can help improve your symptoms, but may not ‘fix’ them – or help to prevent them. It’s best not to rely on medication alone.
What works for one person won’t work for everyone
When you have a chronic condition, it’s good to experiment with different kinds of treatment, therapies and exercises. Some people find alternative therapies like acupuncture really helpful for treating fibromyalgia and others don’t find it useful at all. Some people find massage painful unless it’s a gentle swedish massage, and others can only cope with a deep tissue massage. Some people with fibromyalgia swear by meditation, some people think it’s a total waste of time!
If you haven’t found your ‘thing’ that helps control your flare ups and symptoms yet, keep trying.
Find a doctor, physio or complementary therapist who understands
Until quite recently, things like chronic pain and fibromyalgia were not very well understood by doctors and were dismissed as being ‘in the mind’. A doctor who holds these old fashioned attitudes towards pain will not be helpful so if you feel like you are seeing someone who is not experienced with your condition ask to see a different practitioner.
If someone is being physically hands on with you, such as they are massaging you, then it’s important to explain to them you have fibro and make sure they have enough knowledge of the condition before they begin. This is because the knots and stiff areas that people with fibro get around their head, neck and back can be painful if pressed and can trigger pain in other areas. You don’t want to come away feeling hurt and set back.
It’s important to communicate with others
If you have a long term condition like fibromyalgia, you may feel like you are constantly complaining because the problem never goes away. Because of this people with fibro tend to clam up and not tell others when they are in pain for fear of looking whiny. If you are in pain people around you need to know so they can help you make the necessary adaptations you need to feel better. If you want to get stuff off your chest, but feel like you can’t go to your family and friends, try joining an online support group.
Give yourself a break
People with fibromyalgia can find it hard to keep up with tasks like housework, seeing their friends or playing with their pets or kids. Feeling guilty will not improve your situation. As well as the community understanding that you need rest, you too need to be understanding and compassionate to yourself.
If you have fibromyalgia and would like to talk to someone at Sheffield Physiotherapy about your condition then please call 0114 268 6677 or email firstname.lastname@example.org. We can provide treatment including physiotherapy, massage and acupuncture.