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Fibromyalgia

Fibromyalgia combines diffuse pain throughout the body, intense tiredness and sleep that does not really restore. The usual tests show nothing abnormal, which makes recognition long and sometimes draining. The pain, for its part, is very much present and moves from one place to another in the body.

On top of this pain there is often a mental fog: memory that falters, words that go missing, concentration that is hard. The energy level varies a great deal from one day to the next, with no apparent logic. Knowing about these fluctuations helps those around not to mistake a bad day for a lack of willpower.

A slightly scratchy jumper, a hand placed on the shoulder as a friendly gesture, the weight of a bag: for a person living with fibromyalgia, ordinary contact can become painful. The body reacts as if the volume of pain had been turned up too high, all the time.

Added to this are a tiredness present from the moment of waking and a fog that blurs memory and words. None of this is visible, and tests come back normal, which often forces the person to justify themselves. Being able to explain the way the body works once, without going over it again at each meeting, already takes away part of the weight.

Real pain, even with no visible cause

The absence of any abnormal test result does not mean the absence of pain. Fibromyalgia changes the way the body perceives and amplifies signals, which explains sensations that are very real and hard to anticipate:

  • pain that shifts location from one day to the next;
  • tiredness present from the morning, with no link to sleep;
  • a mental fog that gets in the way of memory and concentration;
  • a heightened sensitivity to noise, cold and stress.

What helps in practice

Steadiness and flexibility count more than great efforts. Alternating activity and rest, avoiding overly long days, accepting that a rhythm may vary without warning: these adjustments help avoid setbacks. In studies, a PAP (a school support plan, in France) can ease the workload and adjust exams. At work, the RQTH (official recognition as a worker with a disability, in France) obtained from the MDPH (the French departmental disability office) makes it possible to adapt hours and workstation, and the fact that those around understand these fluctuations avoids many misunderstandings.

Key figures

Fibromyalgia in a few figures

  • ~ 4 millionUS adults, about 2%, have fibromyalgia.Source: CDC.
  • ~ 1 in 20people in the UK may be affected.Source: NHS.
  • 30 to 50the age range when fibromyalgia usually develops.Source: NHS.

Possible accommodations

The accommodations aim above all to respect an energy level that varies a great deal.

  • At school: a PAP (a school support plan, in France) that adjusts the timetable, allows breaks and adapts the workload on hard days.
  • At work: through the RQTH (official recognition as a worker with a disability, in France), flexible hours, working from home and an ergonomic workstation in a quiet spot.
  • In everyday life: the option to alternate effort and rest, and people nearby who do not mistake a bad day for bad will.

Explanations based on your profile

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Fibromyalgia explained to a Child

0–12 years old

Fibromyalgia is when the body hurts all over, as if all the muscles were shouting "ouch!" The person wakes up tired, even after a long night's sleep, as if their body had not had time to recharge.

  • The pain moves around the body: sometimes in the legs, sometimes in the arms, sometimes somewhere else.
  • The person finds it very hard to concentrate or find their words, like a little fog in the head.
  • They are very sensitive to loud noise, cold, and stress, which make the pain stronger.

Important: the doctor's tests do not show anything broken, but the pain is true and very real! It is not faking and it is not all in the head, it is like an alarm in the body ringing too loudly.

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