Fibromyalgia

What is going on

Central sensitisation. The nervous system becomes hypersensitive, amplifying pain signals and generating pain from stimuli that would not normally hurt. The changes have been demonstrated on functional brain imaging and in altered pain-processing chemistry, and there is evidence of small fibre nerve changes in a proportion of people.

This is now classified as nociplastic pain — pain arising from altered processing rather than from tissue damage or nerve injury. It is a recognised third category alongside those two, not a diagnosis given when nothing is found.

What can trigger its onset

• Physical trauma, particularly whiplash-type neck injury
• Infection — including glandular fever and viral illness
• Surgery
• Prolonged psychological stress, bereavement or a major life event
• Adverse childhood experiences, which are associated with altered pain processing in adulthood — a physiological finding about how pain pathways develop, not a judgement
• Sometimes nothing identifiable at all

What increases the likelihood

• Female sex — considerably more common in women
• Family history, which suggests a genetic contribution
• Existing rheumatoid arthritis, lupus or ankylosing spondylitis — fibromyalgia commonly coexists with these, and is then blamed on the underlying disease and treated with more immunosuppression that cannot help
• Hypermobility — a strong and consistently under-recognised association. Worth asking about, particularly in someone who was "double-jointed" as a child
• Obstructive sleep apnoea, which is both a mimic and an aggravator

What must be excluded

These are the treatable conditions that present with the same picture:

• Underactive thyroid — the classic mimic
• Vitamin D deficiency, and B12 deficiency
• Iron deficiency
• Coeliac disease
• Inflammatory arthritis, and polymyalgia rheumatica in the over-50s
• Raised calcium, and myeloma in older adults with bone pain
• Obstructive sleep apnoea — which causes unrefreshing sleep, fatigue and pain, and is heavily under-diagnosed in women
• Statins and other medications causing muscle aching

Fibromyalgia is diagnosed clinically. There is no scan or blood test that shows it — the tests are done to exclude other things, not to confirm this. That combination works well in a remote consultation, where there is time to take a proper history.

How the diagnosis is actually made

Using the current criteria: how widespread the pain is across the body, plus the severity of fatigue, unrefreshing sleep and cognitive symptoms, present for at least three months, with other causes excluded.

The "eighteen tender points" examination is no longer used. It was replaced years ago because it performed poorly and produced a curious situation in which the diagnosis depended on how hard someone pressed. If you were told you did not have fibromyalgia because you failed a tender point count, that assessment was out of date.

Tests we arrange to exclude other causes

• Full blood count and ferritin
• CRP and ESR — normal in fibromyalgia. If they are raised, this is not fibromyalgia alone
• Thyroid function
• Vitamin D, B12 and folate, calcium
• Kidney and liver function, and creatine kinase where muscle disease or statin myopathy is a question
• Coeliac serology
• HbA1c

The tests we deliberately do not request

ANA and rheumatoid factor should not be requested without a clinical reason to suspect autoimmune disease, and this matters more than it sounds. Both are positive in a meaningful proportion of entirely healthy people. A false positive leads to years of rheumatology appointments, repeated testing and genuine fear of a disease that was never there — and it is one of the commonest avoidable harms in this area. We test when there is a reason to, and we explain why when we do not.

Where a sleep assessment is warranted

Ask about sleep apnoea if you snore, wake unrefreshed, wake with a headache, or anyone has seen you stop breathing. It is heavily under-diagnosed in women, it causes exactly this symptom picture, and it is treatable — see sleep apnoea.

What needs referral

Joint swelling, raised inflammatory markers, new symptoms over 50 suggesting polymyalgia rheumatica, genuine muscle weakness, or any feature suggesting autoimmune or inflammatory disease. Rheumatology can also confirm the diagnosis where there is uncertainty.

Pacing — the single most useful skill

The boom-and-bust cycle is what keeps most people stuck: a good day, too much done, three bad days. Pacing breaks it.

• Work out what you can do on a bad day, and do that amount every day — including good days. This is the hard part and the whole point
• Break tasks into short blocks with rest between, and rest before you need to
• Use a timer rather than your judgement, which will always overestimate on a good day
• Plan recovery time deliberately around anything demanding — a wedding, a long journey, a family visit
• Alternate physical, mental and restful activity

Exercise, done in a way that works

• Start lower than feels worth doing. Five minutes. The commonest reason exercise fails here is starting at a normal level
• Increase by around 10% a week, and only from a level that caused no flare
• Warm water pools are particularly well tolerated
• Consistency beats intensity, always
• A short flare after starting is expected and is not damage

Sleep

• Consistent times, seven days a week — which matters more here than in most conditions
• A cool, dark, quiet room; no screens in the last hour
• No caffeine after midday, and be honest about alcohol — it fragments sleep even when it helps you fall asleep
• Try CBT for insomnia, which outperforms sleeping tablets and has no rebound
• Get assessed for sleep apnoea if you snore or wake unrefreshed, particularly if you are a woman — it is missed far more often in women

Heat, and everyday measures

• Warm baths, heat pads and hot water bottles — simple and genuinely effective
• Keep warm; cold reliably worsens symptoms
• Gentle stretching, yoga or tai chi — tai chi has surprisingly good trial evidence here
• Mindfulness and breathing practices, which reduce nervous system arousal

Diet

No specific fibromyalgia diet has been shown to work, despite an entire industry claiming otherwise. Eat well, keep vitamin D adequate, treat any deficiency found, and be cautious about progressively restrictive diets, which cost more than they return. Where IBS coexists, treating that helps.

Work and rights

• Fibromyalgia can meet the Equality Act definition of disability, which entitles you to reasonable adjustments — flexible hours, working from home, a phased return, changes to your workstation
• Ask for an occupational health referral. We can write a letter setting out what would help
• Many people leave jobs that could have been adjusted, simply because nobody told them adjustments were an entitlement

Being believed

Most people with fibromyalgia have been disbelieved by someone, and it does lasting damage. It is a recognised condition with a documented mechanism of altered pain processing. Normal blood tests and normal scans are exactly what would be expected — they are not evidence against you, and you should not have to argue for the pain to be taken seriously.

Is fibromyalgia real?

Yes. It is a recognised condition with a documented mechanism — the nervous system amplifies pain signals and lowers the threshold at which sensation becomes painful. This has been shown on functional brain imaging. Normal blood tests and normal scans are exactly what would be expected, because the problem is in how pain is processed, not in the tissues being scanned. It is classified as nociplastic pain, a recognised category, not a label for the unexplained.

Why won't anyone give me proper painkillers?

Because for this type of pain they do not work, and some make it worse. NICE guidance on chronic primary pain recommends against paracetamol, anti-inflammatories, opioids, benzodiazepines and gabapentinoids. Opioids in particular cause the nervous system to become more pain-sensitive over time, so people end up on higher doses with more pain. Coming off them, slowly, often improves things. What does help: exercise, sleep treatment, certain antidepressants used for their effect on pain pathways, psychological therapy and acupuncture.

Will exercise not make it worse?

Not if it is started at the right level — and that level is far lower than anyone expects. Five minutes of walking is a legitimate starting point, increasing by about 10% a week. Most people who say exercise made them worse were told to do a normal amount. Graded exercise has the strongest evidence of any treatment in fibromyalgia, and warm water is the gentlest way in.

I was told I don't have it because I failed the tender points test.

Those criteria are obsolete. The eighteen tender point examination was replaced years ago — it performed poorly and made the diagnosis depend on how firmly someone pressed. Current criteria use how widespread the pain is plus the severity of fatigue, unrefreshing sleep and cognitive symptoms. If that is the basis on which you were dismissed, it is worth reassessing.

Is the brain fog dementia?

No. "Fibro fog" fluctuates with sleep, pain and stress, and does not progress the way dementia does. It is a very common fear and a very understandable one, given how frightening word-finding difficulty is. Treating sleep usually improves it more than anything else.

Should I be tested for lupus or rheumatoid arthritis?

Only if there is a clinical reason — joint swelling, a rash, mouth ulcers, raised inflammatory markers. ANA and rheumatoid factor are positive in a meaningful proportion of perfectly healthy people, and a false positive leads to years of appointments, repeat tests and fear of a disease that was never there. It is one of the commonest avoidable harms here, which is why we test for a reason rather than routinely.

Is this the same as ME/CFS?

They overlap considerably but are not the same, and the distinction changes the treatment. If your defining feature is a crash lasting days after minimal exertion — post-exertional malaise — that points to ME/CFS, where NICE removed graded exercise therapy in 2021 and pacing is the approach. In fibromyalgia, pain dominates and graded exercise remains the best-evidenced treatment. Tell us which pattern fits, because we would plan differently.

Could it be my thyroid, or something treatable?

Very possibly, and it should be checked. An underactive thyroid, vitamin D or B12 deficiency, iron deficiency, coeliac disease and sleep apnoea all cause this picture and are all treatable. Statins can cause muscle aching too. A fibromyalgia diagnosis made without those exclusions is not a completed assessment.

Does it get worse over time?

It is not a progressive or damaging condition — it does not destroy joints, waste muscles or shorten life. Symptoms fluctuate, with flares and better spells, and many people improve substantially with pacing, exercise and sleep treatment. The trajectory is far more within your influence than it feels at diagnosis.