Long Covid

The name Long Covid covers symptoms that are still there weeks or months after COVID-19 and that have no other explanation. In UK guidance, the period from four to twelve weeks is called ongoing symptomatic COVID-19, and symptoms that go on past twelve weeks, with no other diagnosis to explain them, are called post-COVID-19 syndrome. Long Covid is an accepted medical condition, and even a mild bout of COVID-19 can lead to it.

Researchers do not yet fully know why the symptoms last, and the ideas being studied include an immune system that stays out of balance, virus activity that keeps inflammation going, changes in the nerves that run the body's automatic functions, the body reacting against itself, and problems with blood clotting and blood flow. With so many systems involved, your GP or a Long Covid service holds the different threads of recovery together. What follows covers the rheumatology thread alone: the symptoms in the joints and muscles, and making sure that no separate inflammatory condition needing its own treatment is hidden underneath them.

Long Covid varies widely between people, and symptoms often rise and fall. The ones that matter most to a rheumatology assessment are pain in the joints and muscles, but they usually come with others:

• Aching muscles or painful joints, or joints that stiffen as you move less
• Tiredness that persists, and for some people symptoms that get worse after activity (post-exertional malaise)
• Sleep that is poor or leaves you unrefreshed
• Poor concentration or memory, often known as brain fog
• Breathlessness, chest pain or tightness, a heartbeat you notice (palpitations), headaches, pins and needles, or changes to taste and smell

The aches and stiffness in the joints and muscles are usually not serious and get better, and moving less can leave muscles weak and joints stiff. Occasionally, though, an infection, COVID-19 among them, sets off a true inflammatory arthritis, the pattern our viral arthritis guide describes, or starts a longer-lasting autoimmune arthritis, and telling these apart is a central part of the assessment. Reactive arthritis is a different pattern, which follows an infection of the bowel or one caught through sex, and has a guide of its own.

Long Covid is identified from its pattern of symptoms after other conditions have been considered, as no test can confirm it. When the joints or muscles are the main complaint, a rheumatology assessment sets out first to establish whether inflammation is present, since an inflammatory arthritis or an autoimmune condition would need treating in its own right and follows a very different course from Long Covid.

Dr Borukhson asks about your symptoms in detail, examines your joints and muscles, and checks any blood tests already done while arranging others, including markers of inflammation and, if relevant, autoantibodies. Point-of-care ultrasound is part of the consultation with Dr Borukhson, so where joint inflammation is in question it can be looked for directly in the same visit; the ultrasound clinic page says more. When the results are normal, that is good news: it points away from an inflammatory cause for the pain.

Long Covid has no one cure; care is supportive and built around whichever symptoms bother you most. For a rheumatologist, the priority is treating any inflammatory arthritis or autoimmune condition that the assessment uncovers, since early treatment can reduce the risk of joint damage. If the pain and tiredness are part of the post-viral illness, the plan is built on pacing, energy management, good sleep and simple pain relief, often supported by physiotherapy and, when a Long Covid service is involved, by its wider team.

Activity is increased slowly and gently, led by how you feel and not by a set schedule, because in people with post-exertional malaise, pushing through exhaustion can set recovery back. Everything is discussed with you in full and looked at again as you improve. You and Dr Borukhson settle the plan together.

Getting better often takes time, and modest habits kept up steadily tend to achieve more than bursts of effort.

• Ration your energy. Alternate activity with rest, and stop while you still have something left, not at your limit on a good day.
• Make sleep a priority. Going to bed and getting up at set times can help with the tiredness.
• Keep gently mobile. Light movement is good for the joints and muscles, as long as your symptoms decide how much, not a goal you have set.
• Get advice on painkillers. Paracetamol or ibuprofen can ease aching muscles, and a pharmacist can advise which to take.
• Care for your mood. A long illness often brings low mood or anxiety, which deserve help of their own; having them does not mean your symptoms are imagined.

Most people do get better, though progress is often patchy, with good spells and bad ones.

As Long Covid's own aches and pains are not usually serious, a symptom that looks different is assessed on its own terms, not taken to be part of it. Below, two lists set out where to go for each such sign, most serious first, with a paragraph afterwards for the rest.

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 problem with the heart's rhythm has to be found
• A faint after which you cannot be woken within a minute, do not fully recover, or have trouble speaking or moving, or a faint with chest pain, a pounding, fluttering or irregular heartbeat, a seizure or a serious injury, or one that happened during exercise or while lying down, since these can mean a problem with the heart or the brain
• 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 Long Covid already brings you pins and needles or brain 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
• Chest pain, palpitations or breathlessness that is new, getting worse, or unlike your usual Long Covid symptoms, with none of the signs in the first list, since the heart and the lungs have to be checked 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 Long Covid 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. 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. With none of the signs in the first list, a single faint is for a GP appointment, and fainting that keeps happening is for a GP within days, since the cause has to be found; one possible cause, more likely with Long Covid, is a problem with how the body controls the heart rate and blood pressure on standing up. 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, which is treated as soon as it is recognised and can come with giant cell arteritis. Talk to your GP about low mood or anxiety, too, since help with that side of recovery is available. See a GP as well if you are worried about symptoms four weeks or more after the infection, and symptoms that have stayed the same for months are fine for a routine appointment. 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.

Early on, an inflammatory arthritis or an autoimmune condition can look much like Long Covid's joint and muscle symptoms, and it matters which is which, since those conditions have specific treatments that work. A specialist assessment aimed at that question can establish whether inflammation is present, exclude a cause that needs its own treatment, and leave you with a clear account of what is happening and a workable plan for your joints and muscles. Where pain in the joints or muscles dominates your Long Covid, a careful review can help you go forward with more confidence.

Does Long Covid belong to rheumatology?

Not as such. It involves many systems, so a GP or a Long Covid service usually takes the lead. The rheumatologist's task is more limited: to examine the joint and muscle symptoms and check that a separate inflammatory arthritis or autoimmune condition has not been missed, as those call for treatment of their own and run a different course from Long Covid.

Is arthritis possible after COVID-19?

It is. Like some other viral infections, COVID-19 can occasionally set off an inflammatory arthritis, which our viral arthritis guide describes, and viral infections can sometimes start a longer-lasting autoimmune arthritis. This is unusual, yet it is a leading reason to have a rheumatology assessment when swollen, painful joints are the main problem after the infection. A joint that swells after COVID-19 is assessed like any other swollen joint: by a GP within days if small joints of the hands or feet, or more than one joint, are swollen, or if a single joint stays swollen for a week or two. A joint that turns hot, or swells with a fever, goes by the second list under When to seek help, the same day.

How is joint pain in Long Covid investigated?

Long Covid itself has no test. If the joints or muscles are the main trouble, the search is for inflammation, through a careful examination, blood tests including markers of inflammation and, where they are relevant, autoantibodies, and, where joint inflammation is in question, point-of-care ultrasound at the same visit, since it is part of the consultation with Dr Borukhson. Normal findings are reassuring, and support the view that the pain is not inflammatory in origin.

What helps the aching joints and muscles of Long Covid?

Any inflammatory arthritis or autoimmune condition that turns up gets its own treatment, and treating it early can lower the risk of damage to the joints. When the pain is part of the post-viral illness itself, care is supportive: pacing, managing your energy, protecting sleep and simple pain relief, with activity raised gently at a rate set by how you feel instead of by a fixed programme.

Which symptoms should not be put down to Long Covid?

Since Long Covid's own aches and pains are not usually serious, some symptoms need attention of their own and should not be taken as part of it. A joint you cannot put weight on or move; chest pain that is crushing, tight or like a pressure; palpitations happening now that do not stop, or that come with chest pain, breathlessness, feeling faint or fainting; breathlessness so severe that you are gasping or choking or have no breath to get words out; a faint with any of the warning signs in the first list; and the signs of a stroke are 999 or A&E emergencies, 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. New weakness in an arm or a leg, or numbness that is new and spreading, coming on over hours or days, needs your GP or NHS 111 the same day; a limb that turns weak or numb in a moment, or weakness, numbness or tingling in both legs that comes on over hours or days or with trouble with the bladder or bowels, belongs to the first list. Chest pain, palpitations or breathlessness that is new, getting worse or unlike your usual symptoms, with none of the signs in the first list, needs your GP or NHS 111 the same day; in pregnancy, breathlessness that comes on suddenly, or when you lie down, or with dizziness, is for your midwife or maternity unit straight away. Pain with a fever needs your GP or NHS 111 the same day too, and the second list gives the other signs that need the same day. A joint swollen without turning hot, weight lost without trying, drenching night sweats, feeling 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, though weakening muscles with new trouble swallowing need your GP or NHS 111 the same day. Over 50, pain and stiffness around both shoulders or both hips need a GP after a week of it, not later.