Fibromyalgia: managing the disease on a daily basis

Some key information on fibromyalgia 

About 1.5 - 2 million people in the UK may be affected by fibromyalgia. Anyone can develop this disease, including children and older people. However, women are more often affected: 8 out of 10 fibromyalgia sufferers are women.

Fibromyalgia is very often difficult to diagnose and treatments can sometimes be inappropriate or insufficient. This is why training healthcare professionals and educating the public on fibromyalgia is paramount.

The symptoms of fibromyalgia vary greatly and the cause of the disease is still unknown. It is not a very serious condition, meaning that it does not lead to dangerous health complications. However, it is extremely disabling. Pain and intense fatigue have a significant impact on patients' daily life.

To date, there is no treatment for fibromyalgia. Medication is therefore prescribed to reduce pain and manage depressive disorders, but its use must remain occasional. Moreover, their effectiveness is not observed in all patients. As a result, non-medicinal treatments are often preferred, especially physical activity.

So how can patients improve their daily lives? What should they do to better cope with the symptoms?

Taking your health into your own hands 

When faced with the diagnosis of fibromyalgia, most patients demonstrate a reactive rather than a proactive behaviour. In order for you to be able to take control of your own health, you will need information: therapeutic patient education programmes can be helpful.

Healthcare professionals must teach patients to understand and manage their symptoms, especially pain and fatigue. It is also essential to integrate physical activity into the treatment plan. This non-medicinal treatment is recommended by all specialists.

For a beneficial medical follow-up, it is necessary to constantly educate yourself on the disease and to be disciplined in terms of frequency of medical visits, as well is in terms of your physical activity, to scrupulously respect your medical prescriptions and to report any side effects, to notice any physical changes and not hesitate to ask for advice.

Improving your daily life with fibromyalgia 

Once drug and non-drug treatment begins to take effect, it is important to maintain an active lifestyle and to try to return to your daily routines without, however, exceeding your limits.

It is suggested, for example, to alternate more active with less active days, to take it easy with your daily activities and to increase their level of intensity very gradually so as not to risk triggering or aggravating fibromyalgia symptoms.

Here is what we recommend:

Sleep well! 

It is essential to get good quality sleep. According to a Norwegian study, sleep disorders double the risk of developing fibromyalgia or aggravating the symptoms, if the disease is already present.

You must therefore learn to sleep well:

• Set regular bedtime and wake-up time,
  
• Relax before going to bed,
  
• Relax before bedtime, establish a routine before going to bed (bath, tea, reading),
  
• Eliminate the consumption of stimulants (caffeinated drinks and stimulants such as tobacco),
  
• Eat light meals and avoid alcohol before bedtime,
  
• Set the right temperature in your bedroom.

Limit stress and learn to relax! 

Emotional stress can aggravate symptoms and cause joint and muscle pain.

There are many relaxation techniques that can be used to improve general health. They help save energy and recover from stress.

These techniques can include various methods of meditation (mindfulness, guided breathing, yoga, tai chi, qi gong), sophrology and music therapy, among others.

Surround yourself with the right people! 

It can be difficult for a fibromyalgia patient's entourage to really understand the disease, especially as getting the diagnosis is often complicated and can take a lot of time. However, it is important for the patient to understand this and not to be afraid to talk about their condition with people around them, in order to maintain good relationship with family and friends.

It may be useful to join online forums and patient support groups such as Carenity, Fibromyalgia Action UK, Fibromyalgia Awareness UK, Fibromyalgia Friends Together, etc.

Managing your work life when you have fibromyalgia 

Maintaining professional activity is psychologically beneficial for people with fibromyalgia even if the symptoms of the disease can become a risk factor for losing employment.

Your doctor must be informed about your professional activity in order to know whether it is possible for you to continue this activity or whether it is necessary to adjust your working space and/or working hours. The latter may be necessary if the pain your experience is too severe.

If one or more periods of sick leave are prescribed, gradual return to part-time work for therapeutic reasons may contribute to a better recovery.

Here are some things you can do to help you keep your job despite your fibromyalgia diagnosis:

• Work part-time, if possible,
  
• Have your workstation adjusted by an occupational therapist,
  
• Adjust your working hours, organise your breaks, or work from home,
  
• Talk to your manager to try and find a more suitable position.
  

Today, numerous clinical and neuroscientific studies have enabled us to better understand the reality of fibromyalgia, even if much remains to be done, particularly in terms of understanding the mechanisms involved in the onset of fibromyalgia.

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