Chronic Illness Support

What is it?

Axial spondyloarthritis, often shortened to axial SpA, is a form of inflammatory arthritis mainly affecting the spine and the joints connecting the lower spine to the pelvis. Ankylosing spondylitis is a form of axial SpA where particular changes can be seen on X-rays. Other people have non-radiographic axial SpA, where these changes are not visible on ordinary X-rays.

Common symptoms

Symptoms may include:

• Lower-back or buttock pain and stiffness.
• Pain that wakes you during the night.
• Stiffness that is worse in the morning or after resting and may ease with movement.
• Fatigue.
• Pain or swelling in other joints.
• Pain around the heels or where tendons attach to bones.

Not everyone experiences every symptom. Symptoms can fluctuate, with periods when they become more troublesome.

How it can affect everyday life

Pain, stiffness and tiredness can make sleeping, dressing, travelling, household tasks and working more difficult. The condition may also affect emotional wellbeing and relationships.

Who might be involved in your care?

A rheumatologist - a doctor specialising in arthritis and related conditions - usually assesses and manages axial SpA. Your GP, a specialist nurse and a physiotherapist may also support you.

Assessment can involve your symptom history, an examination, blood tests and imaging. Normal blood tests do not automatically rule it out.

Treatments and medicines

Treatment aims to reduce inflammation and pain and help maintain movement and everyday function. It usually combines suitable exercise, physiotherapy and medicines. A physiotherapist can help develop an exercise programme suited to your needs and abilities.

Anti-inflammatory medicines, such as naproxen or ibuprofen, may be offered if suitable. Some people need specialist medicines, including biological treatments or JAK inhibitors. These require assessment and monitoring by the specialist team.

Medicines have different risks and possible side effects. Follow the information supplied with your medicine and speak to your pharmacist or prescribing team about concerns.

Further information

• NHS: ankylosing spondylitis
• NHS: treatments
• NHS: naproxen
• NHS: ibuprofen for adults

What does this cover?

Back problems have different causes. Some improve within weeks, while others cause ongoing or recurring symptoms.

Conditions include:

• Slipped or herniated disc: a cushion of tissue between the spinal bones bulges outwards and may press on a nerve.
• Spondylolisthesis: one spinal bone slips forward over another. This is different from a slipped disc.
• Spinal stenosis: narrowing of spaces in the spine that contain nerves or the spinal cord.

Inflammatory spinal arthritis is covered separately under axial spondyloarthritis.

Common symptoms

Depending on the condition, symptoms may include:

• Back pain, stiffness or muscle spasms.
• Pain spreading into the buttocks or legs.
• Tingling, numbness or weakness when nerves are affected.
• Difficulty bending, standing or walking.

Some spinal changes cause no symptoms. A healthcare professional can help explain what examination or scan findings mean for you.

How it can affect everyday life

Pain and restricted movement can make dressing, housework, sleeping, travelling and working difficult. Some people need practical support or changes to their activities.

Who might be involved in your care?

Your GP and a physiotherapist or musculoskeletal team may assess and support you. Depending on your needs, a pain service or spinal specialist may be involved. Not everyone needs a scan or surgery.

Treatments and medicines

Treatment depends on the cause and your symptoms. It may include tailored physiotherapy, suitable movement and advice about adapting activities.

A pharmacist or prescribing clinician can advise on suitable pain relief. Anti-inflammatory medicines such as ibuprofen are sometimes used, but are not suitable for everyone. Some conditions may need specialist procedures or surgery. Your specialist should explain the likely benefits and risks.

Further information

• NHS: back pain
• NHS: slipped disc
• NHS: spondylolisthesis
• NHS: ibuprofen for adults

What is it?

CPPD is a condition in which calcium pyrophosphate crystals build up in and around joints. Some people have these deposits without symptoms. Others experience sudden painful attacks, called acute CPP crystal arthritis - previously known as pseudogout. Some develop longer-lasting joint inflammation.

CPPD is different from gout, which involves a different type of crystal. It becomes more common as people get older.

Common symptoms

Symptoms may include:

• Sudden joint pain, sometimes severe.
• Swelling, warmth and tenderness.
• Redness or a change in skin colour around the joint.
• Stiffness and difficulty moving the joint.

The knees and wrists are commonly affected, although other joints can be involved. Symptoms and the frequency of attacks vary.

How it can affect everyday life

An attack can make walking, climbing stairs, dressing or using your hands difficult. Pain can disturb sleep, and repeated attacks or ongoing inflammation may affect independence and daily routines.

Who might be involved in your care?

Your GP may assess and manage symptoms. A rheumatologist - a doctor specialising in arthritis and related conditions - may help if the diagnosis is uncertain or symptoms are persistent or difficult to control.

Assessment may involve examining the joint, X-rays or ultrasound, and taking a sample of joint fluid to check for crystals and infection.

Physiotherapy or occupational therapy may help with movement and everyday activities.

Treatments and medicines

Treatment aims to reduce pain and inflammation. There is currently no treatment that dissolves CPP crystals.

Depending on your health and other medicines, a clinician may offer:

• Anti-inflammatory medicines, such as naproxen or ibuprofen.
• Colchicine to treat an attack or help prevent repeated attacks.
• Steroid tablets or an injection into the affected joint.
• Removal of excess joint fluid.

These treatments are not suitable for everyone. Your prescribing clinician or pharmacist can explain possible side effects and any monitoring needed.

Further information

• Arthritis UK: acute CPP crystal arthritis
• NHS: joint infection warning signs
• NHS: colchicine
• NHS: naproxen
• NHS: ibuprofen for adults

Sources checked: NHS, Bristol NHS rheumatology information and Arthritis UK. Further information links are listed above.

What is it?

COPD is the name for a group of long-term lung conditions that make breathing difficult. It includes emphysema, which damages the air sacs in the lungs, and chronic bronchitis, which causes long-term inflammation of the airways.

Smoking is the main cause, but people who have never smoked can also develop COPD. Long-term exposure to harmful dust or fumes and, occasionally, inherited factors can contribute. There is currently no cure, but treatment can help manage symptoms and slow progression. Everyone deserves support without blame or judgement.

Common symptoms

• Breathlessness, especially during activity.
• An ongoing chesty cough, often bringing up phlegm.
• Wheezing.
• Frequent chest infections.

Symptoms and their impact vary. They may suddenly worsen during a flare-up, also called an exacerbation.

How it can affect everyday life

Breathlessness and tiredness can make washing, dressing, walking, housework and social activities more difficult. Some people feel anxious about becoming breathless or need more time and support with daily tasks.

Your care team can help with breathing techniques, adapting activities and emotional support.

Who might be involved in your care?

Your GP and practice nurse may provide regular reviews. A respiratory specialist - a doctor specialising in lung conditions - and a respiratory nurse may be involved when needed. Physiotherapists and other professionals may support you through pulmonary rehabilitation. This is a programme combining suitable exercise, education and support. A dietitian may help with nutrition or weight concerns.

Diagnosis usually involves a breathing test called spirometry, alongside an assessment of symptoms and health history.

Treatments and medicines

Treatment is tailored to your symptoms and needs. It may include:

• Inhalers that help open the airways; some people also need an inhaler containing a steroid.
• Other medicines for particular symptoms, such as thick phlegm.
• Pulmonary rehabilitation and advice about suitable activity.
• Support to stop smoking, if you smoke.
• Vaccinations recommended by your healthcare team.

A clinician may prescribe antibiotics or a short course of steroid tablets for some flare-ups. If you have a written flare-up plan, follow the instructions agreed with your care team. Oxygen is prescribed only after assessment shows it is needed; it is not suitable for everyone with breathlessness.

Ask your nurse or pharmacist to check your inhaler technique. Medicines can cause side effects, so read the supplied leaflet and discuss concerns with your prescribing team.

Further information

• NHS: COPD
• NHS: COPD treatments
• NHS: living with COPD
• NHS: shortness of breath and urgent help
• NHS: salbutamol inhalers
• NHS: tiotropium inhalers
• Asthma + Lung UK

Sources checked: NHS COPD overview, treatment and living-with information, and NHS shortness-of-breath guidance. Links are listed above.

What is it?

Crohn's disease is a long-term condition that causes inflammation in the digestive system. It is a type of inflammatory bowel disease (IBD). It is different from irritable bowel syndrome (IBS). There is currently no cure, but treatment can reduce inflammation and help keep symptoms under control. Periods of worsening symptoms are called flare-ups; quieter periods are called remission.

Common symptoms

• Diarrhoea, sometimes with blood or mucus.
• Tummy pain or cramps.
• Fatigue or feeling generally unwell.
• Reduced appetite and unintentional weight loss.
• Pain around the bottom.

Symptoms vary with the area affected. Some people also have joint, skin or eye symptoms. Not everyone experiences every symptom.

How it can affect everyday life

Pain, fatigue and needing the toilet urgently can affect work, travel, relationships and social activities. Planning toilet access and allowing rest breaks may help. Symptoms can be difficult even when someone looks well.

Who might be involved in your care?

A gastroenterologist - a doctor specialising in the digestive system - usually leads specialist care. Your GP, IBD nurse and a dietitian may also support you. A surgeon or stoma nurse may be involved when needed.

Assessment may involve blood and stool tests, scans and a camera examination of the bowel, sometimes with tissue samples. No single test confirms every case.

Treatments and medicines

Treatment depends on the location and severity of inflammation. Options include:

• Steroids for a limited period to bring a flare-up under control.
• Medicines such as azathioprine to help control immune-system activity.
• Biological or other targeted medicines when appropriate.
• Specialist nutritional treatment, including a prescribed liquid diet for some people.
• Surgery for selected cases or complications. Some people need a stoma.

Surgery can help, but Crohn's disease may return elsewhere in the gut. Steroids are not used as long-term maintenance treatment.

Some treatments increase infection risk or need blood tests and other checks. Read the medicine leaflet and discuss possible side effects and monitoring with your prescribing team. Ask your team before making major dietary changes. Avoid ibuprofen and other anti-inflammatory painkillers unless your doctor recommends them.

Further information

• NHS: Crohn's disease
• NHS Inform: Crohn's disease
• NHS: azathioprine
• NHS: adalimumab
• Crohn's & Colitis UK
• NHS: stomach ache and urgent help

Sources checked: NHS and NHS Inform information on Crohn's disease; NHS stomach-ache guidance; NICE guideline NG129 on Crohn's disease management.

What is it?

Type 1 diabetes is an autoimmune condition: the immune system damages the cells that make insulin. Insulin helps the body use glucose (sugar) for energy. Without it, blood glucose becomes too high.

It can develop at any age. It is not caused by eating too much sugar, and people need insulin every day. There is currently no cure, but treatment and support help people manage it.

Common symptoms

• Needing to pee more often, including at night.
• Feeling very thirsty.
• Feeling unusually tired.
• Losing weight without trying.
• Blurred vision or repeated infections.

Symptoms often develop over days or weeks. In children, new bedwetting or heavier nappies can be a sign. Seek urgent GP advice or contact NHS 111 if you think you or your child may have type 1 diabetes.

How it can affect everyday life

Monitoring glucose and balancing insulin with meals, activity and illness require daily attention. This can affect sleep, work, school, travel and emotional wellbeing. People deserve practical support without blame.

Who might be involved in your care?

A specialist diabetes team supports treatment. This may include a diabetes specialist doctor, specialist nurse and dietitian, alongside your GP. Foot-care and eye-screening services help check for complications.

Initial assessment usually includes a finger-prick glucose test and sometimes a urine test. Suspected type 1 diabetes usually needs same-day hospital specialist assessment.

Treatments and medicines

Insulin is taken by injections or an insulin pump. Your team will teach you how to monitor glucose and match insulin to your needs. Some people use continuous glucose monitoring and a pump linked to a sensor.

Education includes food, activity, managing low glucose and what to do during illness. Follow your agreed insulin and sick-day plan; do not stop insulin because you are not eating. Contact your team if unsure.

Insulin can cause low blood glucose (a hypo). Symptoms include shaking, sweating, dizziness or confusion. Treat a hypo promptly using your agreed plan and NHS guidance.

Regular reviews include glucose control, kidney health, feet and eye screening as appropriate.

Further information

• NHS: type 1 diabetes
• NHS: symptoms and diagnosis
• NHS: treatment
• NHS: diabetic ketoacidosis
• NHS: low blood glucose
• Diabetes UK

Sources checked: NHS type 1 diabetes overview, symptoms and treatment; NHS diabetic ketoacidosis and hypoglycaemia guidance. Links are listed above.

What is it?

Type 2 diabetes develops when the body does not make enough insulin, or the insulin it makes does not work properly. This causes blood glucose (sugar) to become too high.

It can affect adults and children. Family history, age, ethnic background, weight and other factors can influence risk. It should not be treated as a personal failing.

Some people can achieve remission, where glucose stays below the diabetes range without diabetes medicine. This is not the same as a permanent cure, and ongoing checks remain important.

Common symptoms

• Feeling very thirsty or peeing more often.
• Tiredness.
• Blurred vision.
• Unintentional weight loss.
• Slow-healing wounds or repeated thrush.

Symptoms can develop gradually, and some people have no noticeable symptoms. Speak to your GP if you are concerned. Diagnosis involves a blood test.

How it can affect everyday life

Managing treatment, appointments and food or activity changes can take time and affect emotional wellbeing. Advice should take account of mobility, other conditions, finances and personal circumstances.

Who might be involved in your care?

Your GP and diabetes or practice nurse may provide routine care. A dietitian, pharmacist or specialist diabetes team may be involved when needed. Children are supported by specialist services.

Regular reviews check glucose control and other aspects of health, including kidneys, blood pressure and cholesterol. Foot checks and eye screening help detect complications.

Treatments and medicines

Treatment combines individual advice about food, suitable activity and weight management where appropriate, with medicines when needed. Education programmes can help you understand and manage diabetes.

Medicines may include metformin, SGLT2 inhibitors, GLP-1 medicines or insulin. The choice depends on individual needs, other conditions and current prescribing guidance. Needing insulin does not mean you have failed or that type 2 has become type 1.

Side effects differ between medicines. Insulin and some tablets can cause low glucose (hypos). Your team should explain risks, monitoring and what to do if you become ill. Use the medicine leaflet and NHS links for details.

Avoid major diet or medicine changes without discussing them with your team. Ask for a written sick-day plan.

Further information

• NHS: type 2 diabetes
• NHS: symptoms and diagnosis
• NHS: treatment
• NHS: metformin
• NHS: high blood glucose
• NHS: low blood glucose
• Diabetes UK

Sources checked: NHS type 2 diabetes overview, symptoms and treatment; NHS high-glucose and hypoglycaemia guidance. Links are listed above.

What is it?

Endometriosis is a long-term condition where tissue similar to the lining of the womb grows elsewhere in the body. It is often found around the ovaries and pelvis, and can also affect the bowel, bladder or other areas.

There is currently no cure, but treatment can help manage symptoms. Pain is not always limited to periods, and symptoms may continue after menopause or a hysterectomy.

Common symptoms

• Period pain severe enough to disrupt everyday activities.
• Pain in the lower tummy, pelvis or back.
• Pain during or after sex.
• Pain when peeing or pooing.
• Fatigue.
• Heavy periods or difficulty getting pregnant.

Experiences vary. Some people have few symptoms, while others have a major impact on daily life. Many people with endometriosis can become pregnant naturally, although some need fertility support.

How it can affect everyday life

Pain and fatigue can affect work, education, sleep, relationships and emotional wellbeing. People may need flexibility, rest breaks or practical help. Pain that disrupts daily life deserves assessment and should not simply be dismissed as normal period pain.

Who might be involved in your care?

Your GP may offer initial treatment and refer you to a gynaecologist - a doctor specialising in the female reproductive system. Complex cases may need a specialist endometriosis team, including bowel or bladder specialists, a specialist nurse and pain services.

Assessment may include an ultrasound, MRI or laparoscopy - keyhole surgery used to look inside the pelvis. A normal ultrasound does not rule out endometriosis. Examinations require your consent, and you can ask for them to stop.

Treatments and medicines

Treatment depends on your symptoms, preferences and whether you are trying to become pregnant. Options may include:

• Pain relief, such as paracetamol or ibuprofen, if suitable.
• Hormonal treatments, such as the combined contraceptive pill, progestogen medicines or a hormonal coil.
• Other specialist hormone treatments when appropriate.
• Surgery to remove areas of endometriosis or treat complications.

Hormonal treatments are generally not used when trying to become pregnant. Surgery may help, but symptoms can return. Removing the womb is not a guaranteed cure.

Different medicines have different side effects and suitability. Your clinician or pharmacist can explain the options and any monitoring needed. Pain management and emotional support may also help.

Further information

• NHS: endometriosis
• Royal College of Obstetricians and Gynaecologists: endometriosis
• Endometriosis UK
• NHS: pelvic pain and urgent help
• NHS: paracetamol for adults
• NHS: ibuprofen for adults

Sources checked: NHS endometriosis and pelvic-pain information; Royal College of Obstetricians and Gynaecologists patient information; NICE guideline NG73 on endometriosis diagnosis and management.

What is it?

Fibromyalgia is a long-term condition that causes widespread pain and can affect sleep, energy and concentration. It is a recognised condition, and symptoms are real even when routine tests are normal.

Common symptoms

Symptoms may include widespread pain, increased pain sensitivity, stiffness, fatigue, unrefreshing sleep and memory or concentration difficulties, often called fibro fog. Experiences vary, and symptoms and abilities can change from day to day.

How it can affect everyday life

Everyday tasks, work, relationships and social activities can take considerable effort. Someone may manage an activity one day and need help or rest another day. Their symptoms may not be visible.

Who might be involved in your care?

Your GP can assess symptoms and coordinate support. Physiotherapy, occupational therapy or pain services may be involved according to individual needs. There is no single routine blood test or scan that confirms fibromyalgia; tests may investigate other or coexisting conditions.

Treatments and medicines

There is currently no cure. Support may include suitable activity tailored to your abilities, sleep advice, talking therapies for managing persistent pain and selected medicines. Talking therapy does not mean the pain is imagined.

Some antidepressants, such as amitriptyline or duloxetine, may be offered for pain. Discuss benefits, possible side effects and suitability with your clinician. Treatment should reflect your preferences and other health conditions.

Explore more

Understanding fibromyalgia: explore the history, diagnosis, treatment, everyday impact and support in our dedicated section.

Further information

• NHS: fibromyalgia
• NHS: diagnosis
• NHS: treatment
• NHS: amitriptyline for pain
• NHS: duloxetine

What is it?

Gout is a form of inflammatory arthritis caused by urate crystals building up in and around joints. It can cause sudden, very painful attacks and may need long-term treatment to prevent further problems.

Family history, kidney health, some medicines and other factors can contribute. It is not simply caused by eating or drinking too much, and people should not be blamed for having it.

Common symptoms

• Sudden severe joint pain, often starting in the big toe.
• Swelling, warmth and tenderness.
• Redness or changes in skin colour around the joint.
• Difficulty moving or putting pressure on the joint.

Other joints, including ankles, knees, hands and wrists, can be affected. Attacks vary in frequency. Untreated gout can lead to joint damage or hard lumps under the skin called tophi.

How it can affect everyday life

An attack can make walking, wearing shoes, sleeping or using your hands difficult. Repeated attacks may disrupt work, household tasks and social activities.

Who might be involved in your care?

Your GP usually assesses and manages gout. A rheumatologist - a doctor specialising in arthritis and related conditions - may help if the diagnosis is uncertain or treatment is difficult.

Assessment may include a blood urate test. Sometimes fluid is taken from the joint or imaging is used to distinguish gout from other conditions. A blood test may need repeating after an attack.

Treatments and medicines

An attack may be treated with an anti-inflammatory medicine, colchicine or a short course of steroid treatment. The choice depends on your health, other medicines and preferences. Long-term urate-lowering medicines, such as allopurinol or febuxostat, can prevent further attacks and joint damage. Blood tests help the clinician adjust treatment. These medicines are different from immediate pain relief.

Medicines have different risks and possible side effects. Follow the plan agreed with your clinician, read the supplied leaflet and ask your pharmacist or prescribing team about

concerns.

Resting the affected joint and using a cold pack wrapped in a towel may help during an attack. Healthy eating and support with weight or alcohol, where relevant, can help overall health; a specific diet is not a substitute for prescribed treatment.

Further information

• NHS: gout
• NHS: allopurinol
• NHS: colchicine
• NHS: joint infection warning signs
• NICE: gout diagnosis and management

Sources checked: NHS gout and septic-arthritis information; NICE guideline NG219. Links are listed above.

What is it?

IBS is a common, usually long-term condition affecting the digestive system. It can cause tummy pain, bloating and changes in bowel habits. Symptoms often come and go, and their impact can be substantial.

How is IBS different from IBD?

IBD means inflammatory bowel disease. It includes Crohn's disease and ulcerative colitis, which cause inflammation in the digestive system. IBS is a different condition, although some symptoms can overlap. The conditions need different assessment and treatment.

See our separate Crohn's disease and ulcerative colitis entries for more information.

Common symptoms

• Tummy pain or cramps, often worse after eating and eased by having a poo.
• Bloating and excess wind.
• Diarrhoea, constipation or a mixture of both.
• Urgently needing the toilet or feeling the bowel has not emptied fully.
• Mucus in poo.

Some people also have tiredness or nausea. Symptoms vary, and flare-ups may happen with or without an obvious trigger.

How it can affect everyday life

Pain and unpredictable toilet needs can make work, travel, relationships and social activities difficult. Planning toilet access and having flexibility can help. Symptoms deserve to be taken seriously even when they are not visible.

Who might be involved in your care?

Your GP usually assesses and manages IBS. They may arrange blood and stool tests to check for other causes, including coeliac disease, infection or IBD. There is no single test that confirms IBS. A dietitian can help if initial dietary changes do not work. A gastroenterologist - a digestive-system specialist - may be involved for severe or uncertain cases.

Treatments and medicines

There is no single diet or medicine that works for everyone. Regular meals, suitable activity and a symptom diary may help identify patterns.

Medicines may include antispasmodics for cramps, loperamide for diarrhoea or appropriate laxatives for constipation. A pharmacist or GP can advise what is suitable. Read the medicine leaflet and ask about possible side effects.

Some people benefit from specialist dietary advice, including a dietitian-supervised low FODMAP approach. Avoid cutting out many foods without professional support.

For persistent symptoms, a GP may discuss other medicines or talking therapies such as CBT. Support with stress and coping does not mean symptoms are imagined.

Further information

• NHS: IBS
• NHS: IBS symptoms and warning signs
• NHS: IBS diet, lifestyle and medicines
• NHS: further help and support
• NHS: inflammatory bowel disease (IBD)
• NHS: loperamide
• NHS: Buscopan
• Guts UK

Sources checked: NHS IBS overview, symptoms, diagnosis, treatment and support pages; NHS IBD and stomach-ache guidance.

What is it?

JIA is a group of conditions causing ongoing joint inflammation that begins before the age of 16. Idiopathic means the exact cause is unknown. It can affect children and young people of different ages.

There are different types, affecting different numbers of joints and sometimes other parts of the body. Symptoms may settle for periods, but some people continue to need care into adulthood.

Common symptoms

• Swollen, stiff, warm or painful joints.
• Stiffness after waking or resting.
• Limping or difficulty moving a joint.
• Using an arm or leg less than usual.
• Tiredness; some types also cause fever or a rash.

Symptoms vary, and children do not always describe pain. Persistent swelling, stiffness or an unexplained limp should be checked by a healthcare professional.

How it can affect everyday life

JIA can affect getting dressed, walking, handwriting, play, school attendance and sleep. Flexible arrangements, suitable activity and practical help can support participation. Children and young people should be listened to and included in decisions about their care.

Who might be involved in your care?

A paediatric rheumatology team - specialists in arthritis and related conditions in children - usually coordinates care. Specialist nurses, physiotherapists, occupational therapists and the GP may also help. An ophthalmologist, an eye specialist, checks for eye inflammation.

As young people get older, their team can plan the move to adult services if ongoing care is needed.

Treatments and medicines

Treatment aims to control inflammation, protect joints and support growth, movement and everyday life. Options depend on the type and severity of JIA.

The specialist team may use anti-inflammatory medicines, steroid joint injections, disease-modifying medicines such as methotrexate, or biological treatments. Physiotherapy and occupational therapy can help maintain movement and adapt activities.

Children need their own specialist prescribing plan. Medicines have different risks and possible side effects; some require blood tests or infection precautions. Ask the team to explain monitoring and what to do during illness. Do not use adult doses or treatment instructions for a child.

Eye screening matters

JIA can cause inflammation inside the eye called uveitis. This may have no obvious symptoms at first. Attend the hospital eye-screening appointments arranged by the team, even when the eyes look and feel normal.

Further information

• Great Ormond Street Hospital: rheumatology conditions and eye care
• JIA-at-NRAS: support for children and families
• NHS: limping in children
• NHS: uveitis
• Manchester NHS: screening for uveitis in children

Sources checked: NHS and Great Ormond Street Hospital information; Manchester University NHS Foundation Trust eye-screening leaflet; NCEPOD/HQIP Joint Care? report on JIA; British Society for Rheumatology guideline scope.

What is it?

Long COVID describes symptoms continuing beyond 12 weeks after COVID-19. It is sometimes called post-COVID syndrome. Symptoms can affect different parts of the body, fluctuate or change over time.

Recovery varies. Some people improve, while others have symptoms that substantially affect their lives for a long time. Seek help for ongoing symptoms; you do not need to wait 12 weeks before speaking to your GP.

Common symptoms

• Marked fatigue.
• Breathlessness.
• Muscle or joint pain.
• Problems with memory and concentration, often called brain fog.
• Sleep difficulties, headaches or dizziness.
• Palpitations or changes in smell or taste.

Not everyone experiences every symptom. New symptoms should be assessed rather than automatically attributed to Long COVID.

How it can affect everyday life

Tasks such as washing, cooking, reading, working or socialising can become difficult. Symptoms may be invisible and unpredictable. Adjustments at work or school, practical help and emotional support may be needed.

Who might be involved in your care?

Your GP can assess your symptoms and consider tests to check for other causes or complications. Tests may include blood tests, blood pressure, heart rate and oxygen measurements, with further investigations when appropriate.

Depending on your needs and local services, a specialist team may involve doctors, nurses, occupational therapists, physiotherapists and other professionals. Support should reflect your symptoms and abilities.

Managing activity and energy

Some people develop post-exertional malaise (PEM), also called post-exertional symptom exacerbation (PESE). Physical, mental, emotional or social effort can make symptoms worse, sometimes hours or days later. A setback may last days or longer.

Pacing means balancing activity with rest and working within your current energy limits. Avoid pushing through worsening symptoms. If increasing activity makes you more unwell, stop increasing it and seek advice from your healthcare team. Discuss exercise with your GP or specialist before restarting.

Treatments and medicines

There is currently no established cure. Care focuses on managing individual symptoms and supporting daily life. It may include help with sleep, breathing, cognition, nutrition, pain and emotional wellbeing.

Medicines may be used for specific symptoms or coexisting conditions. A clinician or pharmacist can explain suitability, possible side effects and interactions. No single medicine works for everyone, and rehabilitation should be individually planned.

Further information

• NHS: Long COVID
• NHS Inform: Long COVID fatigue and pacing
• NHS: breathlessness and urgent help
• Long COVID SOS
• Asthma + Lung UK

Sources checked: NHS Long COVID and breathlessness guidance; NHS Inform fatigue and PEM/PESE information; NHS England post-COVID service guidance.

What is it?

Lupus is an autoimmune condition, meaning the immune system mistakenly attacks healthy tissue. This entry focuses on systemic lupus erythematosus (SLE), which can affect several parts of the body.

It is a long-term condition with no current cure, but treatment can help control symptoms and protect organs. Some people have flare-ups followed by quieter periods; others have ongoing symptoms.

Common symptoms

• Fatigue that can be severe.
• Joint or muscle pain, sometimes with swollen joints.
• Rashes that may worsen after sunlight exposure.
• Mouth ulcers or hair loss.
• Fever or feeling generally unwell.

Symptoms and severity vary. Not everyone has a butterfly-shaped facial rash. Some people develop inflammation affecting organs such as the kidneys, heart or lungs, so regular monitoring matters.

How it can affect everyday life

Fatigue, pain and fluctuating symptoms can affect work, household tasks, relationships and social activities. Planning rest breaks and adapting tasks may help. Sun protection is important: your team can advise on SPF 50 or higher sunscreen, protective clothing and shade.

Who might be involved in your care?

A rheumatologist - a doctor specialising in inflammatory joint and related conditions - usually coordinates specialist care alongside your GP. Skin, kidney and other specialists may be involved according to the areas affected.

Diagnosis considers symptoms, examination and tests together. A positive ANA antibody blood test alone does not establish lupus. Blood and urine tests also help monitor the condition and treatment.

Treatments and medicines

Treatment is tailored to the symptoms and organs involved. It may include hydroxychloroquine, steroid medicines, or other immune-system treatments. Anti-inflammatory painkillers are suitable only for some people, depending on kidney health and other risks.

Hydroxychloroquine can help with skin and joint symptoms and fatigue. Possible side effects include nausea, diarrhoea, headache or a rash. Rare retinal effects mean eye monitoring may be needed, particularly with long-term use or other risk factors.

Other medicines have different side effects and monitoring requirements. Your prescribing team or pharmacist can explain the benefits, risks and any infection precautions. Read the leaflet supplied with each medicine.

If you are planning pregnancy, speak to your specialist beforehand so your health and medicines can be reviewed.

Further information

• NHS: lupus
• NHS: hydroxychloroquine
• LUPUS UK
• LUPUS UK: diagnosis
• NHS: breathlessness and urgent help
• NHS: stroke

Sources checked: NHS lupus and hydroxychloroquine information; LUPUS UK diagnosis information; British Society for Rheumatology SLE guideline; NHS emergency guidance.

What is it?

Myalgic encephalomyelitis, also called chronic fatigue syndrome or ME/CFS, is a long-term condition affecting different body systems. It can affect adults and children. It is more than everyday tiredness, and its exact cause is not yet fully understood.

Common symptoms

• Debilitating fatigue that is not substantially relieved by rest.
• Symptoms worsening after activity, called post-exertional malaise (PEM).
• Unrefreshing sleep or other sleep difficulties.
• Problems with concentration, memory or thinking, often called brain fog.

Some people also have pain, flu-like symptoms, dizziness or sensitivity to light and sound. Severity varies and symptoms can fluctuate.

What is post-exertional malaise?

PEM is a worsening of symptoms after physical, mental, emotional or social effort. It can be delayed by hours or days and recovery may take days, weeks or longer. An activity that seems small to someone else may exceed the person's current limits.

How it can affect everyday life

ME/CFS can affect washing, preparing food, mobility, work, education and relationships. Some people can manage limited activities; those with severe illness may be housebound or bedbound and need substantial care. Support should reflect the person's actual abilities and changing needs.

Who might be involved in your care?

Your GP can investigate symptoms and coordinate care with an ME/CFS specialist team. Professionals may include a doctor, specialist nurse, occupational therapist, physiotherapist or dietitian with relevant expertise. Children and young people need age-appropriate specialist assessment.

There is no single diagnostic blood test or scan. Assessment considers the symptom pattern and checks for other or coexisting conditions.

Treatments and medicines

There is currently no cure or single medicine that treats ME/CFS itself. Care may help with individual symptoms such as pain, sleep difficulties or nutrition. Discuss possible benefits, side effects and suitability with your clinician or pharmacist.

Energy management, sometimes called pacing, balances activities and rest within the person's current limits. It includes thinking, social and emotional demands as well as physical activity. Plans should be flexible and should not automatically increase activity.

Do not push through worsening symptoms. NICE advises against programmes using fixed increases in activity, such as graded exercise therapy. Any chosen activity programme should be personalised and overseen by an ME/CFS specialist team.

CBT may be offered if the person wants support with living with the condition. It is not a cure and does not mean the illness is imagined.

Further information

• NHS: ME/CFS
• NHS: treatments and support
• NICE: ME/CFS guidance NG206
• ME Association
• Action for ME

Sources checked: NHS ME/CFS overview and treatment information; NICE guideline NG206; NHS emergency guidance.

What is it?

Migraine causes recurring attacks with symptoms that can include severe headache, nausea and sensitivity to light or sound. It can have a substantial impact on everyday life. Treatment can ease attacks and help prevent them.

Common symptoms

• Throbbing head pain, often on one side and worse with movement.
• Feeling or being sick.
• Sensitivity to light or sound.
• Fatigue before, during or after an attack.

Some people have aura, such as flashing lights, zigzag lines or tingling. Experiences vary. Attacks commonly last between four hours and three days.

How it can affect everyday life

An attack may interrupt work, education, caring responsibilities or social plans. People may need a quiet, dark space and time to recover. A headache diary can help record frequency, symptoms, treatments and their impact.

Who might be involved in your care?

Your GP usually assesses symptoms and offers treatment. A pharmacist can advise on suitable medicines. A neurologist or headache specialist may be involved if symptoms are difficult to manage or need further investigation.

Diagnosis is usually based on the pattern of symptoms and assessment. Scans are not routinely needed solely for reassurance when a clear headache diagnosis has been made.

Treatments and medicines

Treatment distinguishes medicines taken during an attack from medicines used to reduce future attacks. Options depend on symptoms, frequency, other conditions and personal preferences. Attack treatments may include suitable pain relief, a triptan such as sumatriptan, and anti-sickness medicine. Preventive options may include propranolol or amitriptyline. Some people need other specialist treatments.

Your clinician should explain benefits, possible side effects, interactions and suitability. Pregnancy or plans for pregnancy need a treatment review. Children and young people need age-appropriate prescribing.

Frequent use of headache medicines can cause medication-overuse headache. Discuss how often to use each medicine with your GP or pharmacist rather than repeatedly increasing treatment yourself.

Regular meals, hydration, sleep routines and a diary may help identify patterns. Triggers vary, and an attack is not a personal failure.

Further information

• NHS: migraine
• NHS: sumatriptan
• NHS: propranolol
• NHS: amitriptyline for pain and migraine
• The Migraine Trust
• NICE: headache guidance CG150

Sources checked: NHS migraine information and NICE guideline CG150 on headaches in over 12s. Links are listed above.

What is it?

MS is a long-term condition affecting the brain and spinal cord. The immune system damages the protective covering around nerves, disrupting messages travelling through the nervous system. There are different forms of MS. Some involve relapses followed by improvement; others involve more gradual progression. The course and impact vary between people.

Common symptoms

• Fatigue.
• Vision problems or eye pain.
• Numbness or tingling.
• Balance, coordination or walking difficulties.
• Muscle stiffness, weakness or spasms.
• Bladder, bowel or sexual difficulties.
• Problems with memory or concentration.

These symptoms can have other causes. A symptom list cannot diagnose MS, and not everyone with MS experiences every symptom.

How it can affect everyday life

MS may affect work, mobility, personal care and relationships. Some symptoms are invisible and abilities can change. Practical support, equipment and adjustments should reflect individual needs.

Who might be involved in your care?

A neurologist - a doctor specialising in the brain and nervous system - usually diagnoses MS. Your GP, MS specialist nurse, physiotherapist and occupational therapist may support ongoing care. Assessment combines your history and examination with investigations such as MRI scans and sometimes a lumbar puncture. There is no single test that confirms every case.

Treatments and medicines

There is currently no cure. Treatment may help control symptoms, reduce relapses or slow progression, depending on the type of MS and individual circumstances.

Disease-modifying therapies are specialist treatments. Other medicines may help particular symptoms such as pain or muscle spasms. Your team should explain the benefits, possible side effects, monitoring and any infection precautions.

Steroids may be offered for some relapses after specialist assessment. Not every relapse needs steroids, and infections or other causes of deterioration need checking first. Support may also include fatigue management, physiotherapy, mobility equipment, bladder or bowel care and emotional support. Agree who to contact if symptoms change significantly.

Further information

• NHS: multiple sclerosis
• MS Society
• MS Trust
• NICE: MS management NG220
• NHS: stroke

Sources checked: NHS MS information; NICE guideline NG220; University Hospitals Dorset information on MS relapses.