Fibromyalgia

The best way to understand fibromyalgia is as a change in how pain is handled by the nervous system. The brain and nerves are thought to grow oversensitive, so everyday sensations can feel painful and real pain feels stronger. Fibromyalgia does not seem to damage or inflame the joints.

No one cause has been found. It frequently starts after physical or emotional strain, an infection, an injury or an operation, but it can also appear with no obvious trigger. It is more common in women. Poor sleep, low mood and anxiety commonly come with it, and so do other conditions, irritable bowel syndrome and the hypermobility syndromes among them. Inherited genes are thought to make some people more likely to develop it.

Its effects reach well beyond pain. The usual features are:

• Pain across many parts of the body
• Tiredness that goes on and is often not eased by rest
• Sleep that is broken or does not refresh
• Poor memory or concentration, known to many as brain fog
• Being more sensitive to touch, and sometimes headaches, tingling or numbness in the hands and feet, or problems with digestion

No single test shows fibromyalgia. Instead, the diagnosis comes from recognising its usual pattern of symptoms, from a careful history and examination, and from tests that exclude other conditions with similar pain and tiredness, an inflammatory arthritis or a thyroid disorder for example. The symptoms are taken seriously and other causes are properly looked for, so that the diagnosis can be made with confidence.

Where joint inflammation is in question, ultrasound can show whether it is there. Point-of-care ultrasound is part of the consultation with Dr Borukhson, and the ultrasound clinic page explains what the scan involves.

Most people do best with several approaches combined to suit them: graded exercise and activity, care over sleep, practical ways of coping with pain and, at times, a medicine that acts on pain processing in the nervous system. Of the medicines, the ones UK guidance supports most consistently are certain antidepressants, amitriptyline (usually at a lower dose than for depression) or duloxetine for example, used mainly for what they do to pain processing, though they can also help sleep and mood. They can cause drowsiness and are not right for everyone, so the choice is discussed in full with you. UK guidance says opioids, pregabalin and gabapentin should not be started for fibromyalgia. The goal is a better quality of life and more that you can do each day. You and Dr Borukhson settle the plan together.

Much of living well with fibromyalgia is in your own hands, and small, regular steps tend to achieve more than an occasional big push.

• Stay active within your limits. Walking, swimming, stretching and other gentle activity, increased little by little, pays off over time, even though that can feel the wrong way round.
• Pace your day. Split jobs into smaller pieces and stop for a rest before exhaustion sets in, instead of pushing too hard when you feel better.
• Guard your sleep. Keeping regular hours and winding down before bed can help the pain as well as the tiredness.
• Tackle stress. Relaxation and talking therapies can help, and suggesting them does not mean the pain is imagined.

Fibromyalgia Action UK, a charity, runs helplines and a weekly online support group for people living with the condition.

Typically there are good spells and bad ones, with the symptoms easing and returning. With a steady plan and time, many people find that daily life and confidence improve and that flares become easier to handle.

Fibromyalgia does not seem to damage the joints or the organs, so a symptom that is genuinely new or different is never simply put down to it. The lists below route each such sign, starting with the most urgent, and the paragraph beneath them covers what remains.

Treat any of these as a 999 or A&E emergency: call 999 and do not drive yourself to A&E.

• Severe illness with suspected sepsis: a high fever with shaking, confusion, rapid breathing, or feeling dramatically worse over hours
• With a fever or feeling unwell, a rash that does not fade when you press it, a stiff neck with eyes that cannot bear bright light, or skin, lips or tongue turning blue, grey, pale or blotchy, since these can be signs of meningitis or sepsis; on black or brown skin the rash and the change of colour may be easier to see on the palms of the hands or the soles of the feet
• A joint you cannot put weight on or move, or that has moved out of place, or, after a fall or injury, very bad pain or any tingling or numbness
• Chest pain that is crushing, tight or like a pressure, that spreads to an arm, the jaw, the neck, the stomach or the back, that comes with breathlessness, sweating, feeling sick or feeling light-headed, or that came on suddenly and does not go away
• Breathlessness that is severe, with gasping, choking or no breath to get words out; or coughing up blood
• Palpitations happening now that do not stop, or that come with chest pain, breathlessness, feeling faint or fainting, since a heart whose muscle or rhythm is affected has to be checked at once
• Numbness or tingling around the back passage, genitals or inner thighs, new difficulty passing urine or controlling your bladder or bowels, a change in feeling during sex, or pain, tingling, weakness or numbness in both legs, since these can mean pressure on the nerves at the base of the spine, which needs emergency treatment
• Sudden weakness or numbness on one side, a drooping face or difficulty speaking, a sudden severe headache, sudden confusion or a seizure, or sudden loss of vision, any of which can be a stroke, even if it stops after a short time, and numbness, weakness, muddled speech or confusion that comes on suddenly is one of these signs, even if fibromyalgia already brings you tingling, numbness or fog
• An eye that suddenly and completely loses its sight
• Lips, mouth, throat or tongue that suddenly swell, a throat that feels tight, very fast breathing or a struggle to breathe or to swallow, skin, tongue or lips turning blue, grey or pale (on black or brown skin this may be easier to see on the palms of the hands or the soles of the feet), becoming suddenly very confused, drowsy or dizzy, or fainting and not being able to be woken, since this can be a severe allergic reaction, anaphylaxis, which can follow a dose of any medicine
• Serious harm you have already done to yourself, such as an overdose, or a feeling that you may be about to harm yourself, since you need help to keep you safe now

Any of these needs an assessment that is urgent, on the same day, from your GP or NHS 111:

• A joint that is hot and swollen, with a fever or feeling unwell, since an infected joint has to be ruled out at once, at A&E or through NHS 111
• A joint that has become hot and very swollen suddenly, or is worsening quickly, even without a fever, since an infected joint does not always announce itself with one
• Joint pain with a fever, or feeling hot, cold or shivery, or generally unwell, since an infection in or around a joint has to be found the same day
• New chest pain, new palpitations, or breathlessness that is new or getting worse, with none of the signs in the first list, since a cause in the heart or the lungs has to be ruled out that day; palpitations happening now that do not stop, or that come with chest pain, breathlessness, feeling faint or fainting, belong to the first list; in pregnancy, breathlessness that comes on suddenly, or when you lie down, or with dizziness, is for your midwife or maternity unit straight away
• Weakness in an arm or a leg that is new, or numbness or pins and needles that are new and spreading, coming on over hours or days, since a nerve or the spinal cord may be under pressure; a limb that turns weak or numb in a moment belongs to the first list, and so does new weakness, numbness or tingling in both legs
• A new headache, a scalp that is tender, or pain in the jaw or tongue when chewing, since past 50 these can be giant cell arteritis, which is treated the day it is suspected to protect the sight; a headache unlike the ones fibromyalgia brings you is not put down to it, and one that comes on suddenly and severely belongs to the first list
• Over the age of 50, sight that has blurred, doubled or dimmed, or that is partly lost, which needs an eye casualty or urgent eye clinic the same day, since giant cell arteritis can threaten the eye; sight that is lost suddenly, however briefly, belongs to the first list
• Thoughts of ending your life or of hurting yourself, or harm you have done to yourself that is not serious, short of the line in the first list: ask your GP to see you that day or call NHS 111, and Samaritans answer at any hour on 116 123

Pain with a fever, wherever the pain is, needs your GP or NHS 111 the same day. See a GP within days, rather than waiting weeks, if you have lost weight without trying, have night sweats that soak you, have felt generally unwell for weeks, or have a joint that has swollen without turning hot, since something other than fibromyalgia may be at work. A GP within days is the pace too for a rash across the cheeks or after time in the sun, mouth ulcers that keep coming back, very dry eyes and mouth, or fingers that turn white, then blue, in the cold, and for muscles in the shoulders, hips or thighs that have grown steadily weaker over weeks, making stairs, getting up from a chair or lifting things harder, with no new numbness or tingling. Weakening muscles with new trouble swallowing, or coughing or choking when you eat or drink, need your GP or NHS 111 the same day, and weakness in both legs that comes on over hours or days, or comes with new numbness or tingling, or trouble with the bladder or bowels, belongs to the first list. If you are over 50 and pain and stiffness have come on around both shoulders or both hips, the stiffness often worst when you wake, see a GP after a week of it, not later, since that can be polymyalgia rheumatica and not fibromyalgia, and it can come with giant cell arteritis. It is important to see your GP about low mood or anxiety, since your emotional health matters a great deal in fibromyalgia and help is available. Symptoms that are steady and long-standing can wait for a routine appointment with your GP. No referral is needed to be seen here; next-working-day appointments can almost always be arranged, and same-day appointments are sometimes possible. If you cannot tell how urgent something is, asking is never a mistake.

Fibromyalgia is not always well understood, and some people find it hard to get it recognised. A specialist assessment that takes its time can confirm the diagnosis, exclude other conditions and give you a clear plan you can put into practice. If pain all over and tiredness are part of your life, that kind of review can be the start of moving forward.

If my tests are all normal, how is fibromyalgia diagnosed?

Fibromyalgia does not show up on blood tests or scans, so a normal result does not rule it out. Doctors make the diagnosis from its usual combination of widespread pain, tiredness and unrefreshing sleep, along with a full history, an examination and tests that exclude other causes. Since the pain is thought to come from how the nervous system processes pain, not from joint damage, test results are frequently completely normal.

What does a first fibromyalgia appointment involve?

Dr Borukhson spends time on your pain, sleep, energy and concentration, examines where it matters, and looks at blood tests you have had or arranges new ones to exclude conditions such as an inflammatory arthritis or a thyroid disorder. Point-of-care ultrasound is part of the consultation with Dr Borukhson, so if joint inflammation is in question it can be looked for in the same visit. You should come away with a clear explanation and a plan that works for you.

Do I have to take tablets for fibromyalgia?

Not necessarily. Treatment usually brings together activity that is paced and built up gradually, good sleep habits and practical ways of managing pain, with tablets considered just for those likely to benefit. If a medicine is tried, it is one of certain antidepressants, amitriptyline or duloxetine for instance, chosen mainly for the way it changes pain processing, not because of low mood, though it can help sleep and mood too; opioids, pregabalin and gabapentin should not be started for fibromyalgia, according to UK guidance.

When will I start to feel better?

Improvement usually comes gradually, not in a single step, building as the parts of the plan take effect, graded activity and better sleep especially; a medicine, if you take one, may need a few months to show its full benefit. The aim is steady gains in what you can do each day and in your quality of life, with the plan looked at again and adjusted as you go.

When should a new symptom not be put down to fibromyalgia?

Fibromyalgia does not seem to damage or inflame the joints, so a symptom that looks different deserves attention of its own. A joint you cannot put weight on or move is a 999 or A&E emergency, as are the other signs in the first list under When to seek help. Call 999 and do not drive yourself to A&E. A joint that turns hot and swollen needs the same day: with a fever or feeling unwell, at A&E or through NHS 111, and otherwise from your GP or NHS 111. Joint pain with a fever, or with feeling hot, cold or shivery, or unwell in a way that is new for you, is for your GP or NHS 111 that day too, as is pain with a fever wherever it is, and the second list gives the other signs that need the same day. A joint that has swollen without turning hot, weight lost without trying, drenching night sweats, feeling generally unwell for weeks, a rash across the cheeks or after sun, mouth ulcers that keep coming back, very dry eyes and mouth, fingers that turn white, then blue, in the cold, and muscles in the shoulders, hips or thighs grown steadily weaker over weeks, with no new numbness or tingling, need a GP within days. Weakening muscles with new trouble swallowing need your GP or NHS 111 the same day, and weakness in both legs that comes on over hours or days, or with new numbness or tingling, or trouble with the bladder or bowels, belongs to the first list. Over 50, pain and stiffness around both shoulders or both hips need a GP after a week of it, not later.