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Fibromyalgia

Fibromyalgia and its links with EDS

Widespread pain, fatigue, sleep that doesn’t refresh: fibromyalgia shares many symptoms with hypermobile EDS. Understanding what brings them together and what sets them apart helps you get a better diagnosis and better care.

What is it? Where the words come from Symptoms EDS and fibromyalgia An open debate The differences Diagnosis Care Both at once?

What is fibromyalgia?

Fibromyalgia, or fibromyalgia syndrome, combines widespread chronic pain, present for at least three months, with significant fatigue and sleep problems. It is thought to affect 1.5 to 2% of the population in France, a clear majority of them women.

The pain comes from a change in how the nervous system works, which amplifies pain signals: this is called central sensitisation. Tests (blood tests, X-rays) are normal. They are mainly used to rule out other illnesses.

Where the words come from

These names look complicated, but they simply say what they describe, or who described it.

Fibromyalgia

From the Latin fibra (fibre) and the Greek mys, myos (muscle) and algos (pain). Literally: “pain in the muscle fibres”.

Ehlers-Danlos

The names of two doctors who described the condition: Edvard Ehlers, a Danish dermatologist (1901), and Henri-Alexandre Danlos, a French physician (1908).

Syndrome

From the Greek syndromê: syn (together) and dromos (course, running). Symptoms that “run together”.

Symptoms that vary from day to day

Widespread pain

All over the body: muscles, joints, back. Its intensity and location change, often with morning stiffness.

Severe fatigue

Exhaustion that rest isn’t enough to relieve, and that can greatly limit everyday activities.

Unrefreshing sleep

Frequent waking, feeling never rested, even after a full night.

Brain fog

Memory and concentration problems, words that won’t come: sometimes called “fibro fog”.

Hypersensitivity

To touch, cold, noise or light: the body reacts more strongly than usual.

And also

Irritable bowel, headaches, anxiety or low mood, which can come with long-term pain.

Hypermobile EDS and fibromyalgia at a glance

The two look so alike that they are often confused: many people with hypermobile EDS were first diagnosed with fibromyalgia, sometimes for years.

More likely hypermobile EDS

  • Very flexible joints since childhood
  • Repeated sprains, subluxations and dislocations
  • Soft, thin or fragile skin, scars that widen
  • Often other cases in the family

Shared by both

  • Widespread chronic pain
  • Severe fatigue
  • Unrefreshing sleep
  • Brain fog
  • Digestive problems
  • Sometimes dysautonomia (faintness, palpitations)
  • Invisible illness, often diagnosed late

More likely fibromyalgia

  • Normal joint flexibility
  • Usually begins in adulthood
  • No connective tissue abnormality
  • Pain mainly amplified by the nervous system

What studies say

Doctors and researchers have long noticed that hypermobile EDS and fibromyalgia often overlap.

A frequent mix-up

According to an article in La Revue du Praticien written with the Garches EDS reference centre, fibromyalgia is the diagnosis most often wrongly suggested in people with EDS.

Flexible doesn’t mean EDS

In a 2021 English study, 81% of people with fibromyalgia or myalgic encephalomyelitis were hypermobile, but only 18% met the criteria for hypermobile EDS.

Often both at once

In a specialist EDS clinic in the United States (2023), most patients had both hypermobile EDS or HSD and fibromyalgia, with more symptoms.

Figures that vary

Depending on the study, 8% to 64% of people with fibromyalgia are hypermobile, depending on the criteria used. A 2023 review concludes that both diagnoses should be considered.

A debate that is still open

In France, some doctors consider that a large proportion of fibromyalgia cases may in fact be unrecognised EDS.

Other specialists consider this position too broad and regard fibromyalgia as a condition in its own right. Research has not yet settled the question.

What sets them apart

These differences help the doctor tell them apart. A person can also have both.

Criterion Hypermobile EDS Fibromyalgia
Nature Hypermobile EDSInherited connective tissue disorder, the body’s “glue” FibromyalgiaPain syndrome linked to a change in how the nervous system works
Parts of the body affected Hypermobile EDSSkin, joints, blood vessels, digestive tract… FibromyalgiaNo tissue damage
Onset Hypermobile EDSFlexibility and signs often present from childhood FibromyalgiaUsually in adulthood, sometimes after a triggering event
Joints Hypermobile EDSHypermobile and unstable: sprains, subluxations, dislocations FibromyalgiaNormal flexibility, no instability
Joint hypermobility Hypermobile EDSKey diagnostic criterion (Beighton score) FibromyalgiaNot one of the diagnostic criteria
Skin Hypermobile EDSSometimes soft, thin or stretchy, with stretch marks or fragile scars FibromyalgiaNormal
Family Hypermobile EDSOften runs in families FibromyalgiaRelatives may be affected, with no established hereditary transmission
Diagnosis Hypermobile EDS2017 international criteria: examination of joints and skin, family history FibromyalgiaClinical diagnosis (2016 criteria) made by the GP, after ruling out other causes
Care priorities Hypermobile EDSProtect and stabilise the joints: physiotherapy, braces, compression garments FibromyalgiaAdapted, gradual physical activity, as first-line treatment

How is fibromyalgia diagnosed?

No blood test or scan can “prove” fibromyalgia: the diagnosis is clinical. The French health authority (HAS) describes five steps for the GP.

  1. Assess the pain

    Where, since when, how it varies, and what it stops you doing in daily life.

  2. Consider fibromyalgia

    Widespread pain for at least 3 months, a normal clinical examination, and no other illness or medicine to explain it.

  3. Look for other illnesses

    A simple blood test, and other tests if needed, so as not to miss another cause.

  4. Confirm the diagnosis

    Using the 2016 international criteria, while also assessing the impact on life and mood.

  5. Explain and support

    Acknowledge the suffering, explain the condition, mention patient associations and build the care plan together.

The 2016 criteria, made simple

  • Generalised pain: in at least 4 of the 5 main body regions (upper and lower, left and right, and the neck-back-chest-abdomen axis).
  • A widespread pain index: the number of painful areas in the past week, out of 19.
  • A symptom severity score, out of 12: fatigue, waking unrefreshed and memory or concentration problems, as well as headaches, lower abdominal pain and low mood.
  • The thresholds: an index of at least 7 with a score of at least 5, or an index of 4 to 6 with a score of at least 9.
  • Duration: symptoms present for at least 3 months.

The old “tender points” pressed by the doctor (1990 criteria) are no longer used.

What helps, in both cases

There is no cure, but all-round care clearly improves everyday life.

Move, gently

Adapted, regular and gradual physical activity, with a professional. It is the first-line treatment for fibromyalgia, and a cornerstone of EDS care.

Managing your energy

Spreading out efforts, planning breaks and avoiding “all or nothing” limits the crashes in fatigue and pain.

Managing your energy

Sleep better

Regular hours and a calm environment help. An associated sleep disorder is worth looking into.

Understand your condition

Patient education and approaches such as cognitive behavioural therapy help you live with pain.

A pain clinic appointment

Specialist chronic pain centres offer an assessment and follow-up by several professionals.

Medication

No medicine is licensed in France specifically for fibromyalgia. Some, at low doses, can bring relief as a second-line option, with an often modest benefit. Opioids are not recommended long term.

What if it’s both?

It’s possible. Studies show that a large share of people with hypermobile EDS or a hypermobility spectrum disorder also meet the criteria for fibromyalgia. One diagnosis does not rule out the other.

Over time, the chronic pain of EDS can also lead to fibromyalgia-like central sensitisation: the nervous system starts to amplify pain signals.

You’ve been diagnosed with fibromyalgia, but you’ve been very flexible since childhood, you have repeated sprains or dislocations, or other people in your family are affected? Talk to your doctor: hypermobile EDS or a hypermobility spectrum disorder is worth looking into.

I’m looking for a diagnosis Our “Fibromyalgia and EDS” sheet (PDF, in French) ↗

Often associated

These conditions and disorders often go together. Each one has its own page.

Ehlers-Danlos syndrome

A group of inherited connective tissue disorders.

Hypermobility spectrum disorders

When hypermobility causes pain, without being EDS.

POTS and dysautonomia

The heart speeds up sharply when standing, with faintness and severe fatigue.

Sources and resources

This page draws on the official recommendations of the French health authority (HAS), on French public sources and on published scientific studies of the link between EDS and fibromyalgia.

HAS (2025) Fibromyalgia in adults: diagnostic approach and treatment strategy (official recommendation, in French) ↗ HAS (2025) Fibromyalgia in adults: diagnostic approach in primary care (PDF sheet, in French) ↗ Santé.fr Fibromyalgia in 5 key points (French public health information site) ↗ Inserm (2020) Collective expert report on fibromyalgia (in French) ↗ HAS (2020) National diagnosis and care protocol: non-vascular EDS (in French) ↗ Malfait et al. (2017) International classification of the Ehlers-Danlos syndromes and criteria for hypermobile EDS ↗ Wolfe et al. (2016) Revision of the fibromyalgia diagnostic criteria ↗ La Rhumatologie Practical sheet: the FIRST questionnaire (in French) ↗ La Revue du Praticien Living with Ehlers-Danlos syndrome (in French) ↗ Eccles et al. (2021) Hypermobility, fibromyalgia and myalgic encephalomyelitis: an observational study ↗ Alsiri et al. (2023) Systematic review: fibromyalgia and connective tissue disorders diagnosed together ↗ Frontiers in Medicine (2023) Fibromyalgia and hypermobile EDS: overlapping symptoms ↗ SED in France French summary of the 2023 study on overlapping symptoms ↗
Important information

This page gives general guidance. It does not replace the advice of your own doctor, who alone can make a diagnosis.

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