What is rheumatoid arthritis?
Rheumatoid arthritis is a condition that can cause pain, swelling and stiffness in joints.
It is what is known as an auto-immune condition. This means that the immune system, which is the body’s natural self-defence system, gets confused and starts to attack your body’s healthy tissues. In rheumatoid arthritis, the main way it does this is with inflammation in your joints.
Rheumatoid arthritis affects around 400,000 adults aged 16 and over in the UK. It can affect anyone of any age. It can get worse quickly, so early diagnosis and intensive treatment are important. The sooner you start treatment, the more effective it’s likely to be.
To understand how rheumatoid arthritis develops, it helps to understand how a normal joint works.
How does a normal joint work?
A joint is where two bones meet. Most of our joints are designed to allow the bones to move in certain directions and within certain limits.
For example, the knee is the largest joint in the body and one of the most complicated. It must be strong enough to take our weight and must lock into position, so we can stand upright.
It also has to act as a hinge, so we can walk, and needs to twist and turn when we run or play sports.
The end of each bone is covered with cartilage that has a very smooth, slippery surface. The cartilage allows the ends of the bones to move against each other, almost without rubbing.
The joint is held in place by the synovium, which contains thick fluid to protect the bones and joint.
The synovium has a tough outer layer that holds the joint in place and stops the bones moving too far.
Strong cords called tendons anchor the muscles to the bones.
What happens in a joint affected by rheumatoid arthritis?
If you have rheumatoid arthritis, your immune system can cause inflammation inside a joint or a number of joints. Inflammation is normally an important part of how your immune system works. It allows the body to send extra fluid and blood to a part of the body under attack from an infection. For example, if you have a cut that gets infected, the skin around it can become swollen and a different colour.
However, in the case of rheumatoid arthritis, this inflammation in the joint is unnecessary and causes problems.
When the inflammation goes down, the capsule around the synovium remains stretched and can’t hold the joint in its proper position. This can cause the joint to become unstable and move into unusual positions.
The main symptoms of rheumatoid arthritis are:
- joint pain
- joint swelling, warmth and redness
- stiffness, especially first thing in the morning or after sitting still for a long time.
Other symptoms can include:
- tiredness and lack of energy – this can be known as fatigue
- a poor appetite (not feeling hungry)
- weight loss
- a high temperature, or a fever
- dry eyes – as a result of inflammation
- chest pain – as a result of inflammation.
Rheumatoid arthritis can affect any joint in the body, although it is often felt in the small joints in the hands and feet first. Both sides of the body are usually affected at the same time, in the same way, but this doesn’t always happen.
A few people develop fleshy lumps called rheumatoid nodules, which form under the skin around affected joints. They can sometimes be painful, but usually are not.
The following can play a part in why someone has rheumatoid arthritis:
Rheumatoid arthritis affects adults of any age, although most people are diagnosed between the ages of 40 and 60.
Around three-quarters of people with rheumatoid arthritis are of working age when they are first diagnosed.
Rheumatoid arthritis is two to three times more common among women than men.
Rheumatoid arthritis develops because of a combination of genetic and environmental factors, such as smoking and diet. It is unclear what the genetic link is, but it is thought that having a relative with the condition increases your chance of developing the condition.
If you are overweight, you have a significantly greater chance of developing rheumatoid arthritis than if you are a healthy weight.
The body mass index (BMI) is a measure that calculates if your weight is healthy, using your height and weight.
For most adults, an ideal BMI is in the 18.5 to 24.9 range.
If your BMI is:
- below 18.5 – you're in the underweight range
- between 18.5 and 24.9 – you're in the healthy weight range
- between 25 and 29.9 – you're in the overweight range
- between 30 and 39.9 – you're in the obese range.
To work out your BMI, use the healthy weight calculator.
Cigarette smoking significantly increases the risk of developing rheumatoid arthritis. If you would like to stop smoking, visit the Smokefree website.
There is some evidence that if you eat a lot of red meat and don’t consume much vitamin C, you may have an increased risk of developing rheumatoid arthritis.
How will rheumatoid arthritis affect me?
Because rheumatoid arthritis can affect different people in different ways, we can’t predict how the condition might develop for you.
If you smoke, it’s a very good idea to quit after a diagnosis of rheumatoid arthritis. This is because:
- rheumatoid arthritis may be worse in smokers than non-smokers
- smoking can weaken how well your medication works.
Physical activity is also important, as it can improve your symptoms and benefit your overall health.
Blood tests and x-rays will help your doctor assess how fast your arthritis is developing and what the outlook for the future may be. This will also help your doctor to decide which form of treatment to recommend.
The outlook for people with rheumatoid arthritis is improving all the time, as new and more effective treatments become available. It is possible to lead a full and active life with the condition, but it is important to take your medication as prescribed and make necessary lifestyle changes.
A diagnosis of rheumatoid arthritis is based on your symptoms, a physical examination and the results of x-rays, scans and blood tests.
Because rheumatoid arthritis can affect other parts of the body, it’s important to tell your doctor about all the symptoms you’ve had, even if they don’t seem to be related.
Blood tests may be used to find changes in your blood that are produced by inflammation.
They can also show if you’re anaemic (have low levels of iron in your blood), as anaemia is common in people with rheumatoid arthritis.
X-rays and other tests
X-rays will show any damage caused to the joints by the inflammation that occurs in rheumatoid arthritis.
Doctors also use equipment such as ultrasound scans to look for inflammation and early damage to joints.
When your diagnosis has been confirmed, don’t be afraid to ask your doctor questions or talk about any problems the condition causes you. The more your healthcare team know about how arthritis is affecting you, the more they can help.
There are a variety of treatments available for rheumatoid arthritis. The earlier that intensive treatment is started, the more likely it is to work.
There are three main ways to treat rheumatoid arthritis:
- physical therapies
There are four main groups of drugs that are used to treat rheumatoid arthritis. These are:
- non-steroidal anti-inflammatory drugs (NSAIDs)
- disease-modifying anti-rheumatic drugs (DMARDs)
- steroids (also known as corticosteroids).
Many people with rheumatoid arthritis need to take more than one drug. This is because different drugs work in different ways.
Your drug treatments may be changed from time to time. This can depend on how bad your symptoms are, or because something relating to your condition has changed.
Drugs may be available under several different names. Each drug has an approved name – sometimes called a generic name.
Manufacturers often give their own brand or trade name to the drug as well. For example, Nurofen is a brand name for ibuprofen.
The approved name should always be on the pharmacist’s label, even if a brand name appears on the packaging. Check with your doctor, rheumatology nurse specialist or pharmacist if you’re not sure about anything.
Painkillers can help to relieve the pain caused by rheumatoid arthritis, but should not be the only treatment used.
There are many types and strengths of painkillers available – some can be bought over the counter from a pharmacy, while some are only available on prescription.
For guidance, ask a healthcare professional in charge of your care.
Managing your symptoms
Managing a flare-up
When your symptoms get worse, this is known as a flare-up. These can happen at any time, but can happen after you have been stressed or had an infection.
Over time, you may get better at noticing the early signs of a flare-up.
If you’re having regular flare-ups, you should mention this to your doctor. It may be that you need to review your treatment.
Here are a few things you can do to help yourself during a flare-up:
- Keep taking your medication at the doses you’ve been prescribed.
- Do gentle exercises.
- Put heated items on the joint – these can include a hot water bottle or electric heat pad. See below for more information.
- Put cold items on the joint – these can include a bowl of cold water with ice cubes, a pack of frozen peas wrapped in a towel, or a damp towel that has been kept in the fridge. See below for more information.
- Let people around you know, so they can help and support you.
Tips for using heated items
Heated items that could help your joint pain include a hot water bottle or electric heat pad. Wrap these in a towel, then place on a painful joint. You could also try having a hot or warm shower or bath.
Other heated items that people have found useful are wheat bag, heat pads, deep heat cream, or a heat lamp.
Make sure these items are warm but not hot, as you could risk burning or scalding yourself. Gentle heat will be enough.
A towel should be placed between the heated item and the skin for protection. Check your skin regularly, to make sure it is not burning.
Tips for using ice packs
Some people find that using an ice pack can help their joint pain. You can buy one from a pharmacy, or you can make one at home, by wrapping ice cubes in a plastic bag or wet tea towel.
Here’s how to apply the ice to your skin:
- Rub a small amount of oil over where you’d like the ice pack to go. Any type of oil can be used. If your skin is broken – for example, if you have a cut – don’t use the oil and cover the area with a plastic bag. This will stop the cut getting wet.
- Put a cold, wet flannel over the oil.
- Put the ice pack over the flannel and hold it there.
- After five minutes, check the colour of your skin. Remove the ice pack if your skin has turned bright pink or red. If it hasn’t, leave it on for another 5 to 10 minutes.
- You can leave the ice pack on for 20-30 minutes. Don’t leave it on for any longer, as you could damage your skin if it is left on for too long.
Living with rheumatoid arthritis
Occupational therapists can help you keep doing the activities you need or want to do – at home or at work. They will work with you to find different ways of doing things.
The benefits of seeing an occupational therapist include:
- improved confidence
- being able to do more things, at home or at work
- being able to live independently at home
- allowing you to return to or stay in work.
Ask your GP about occupational therapists that are local to you. If you regularly see a social worker, nurse or other health care professional, they can help you contact an occupational therapist through health or social services.
Be prepared to describe any difficulties you have and how they are affecting your life, or the lives of those who care for you.
You may want to know how long it will be until you get an appointment, so remember to ask if there is a waiting list.
You can also see an occupational therapist privately. You will be able to get an appointment quicker, but it will cost you money.
Find an occupational therapist that works privately on the Royal College of Occupational Therapist website. All occupational therapists should be registered with the Health & Care Professions Council (HCPC).
Research and new developments
Here, we round up some of the latest developments in rheumatoid arthritis research.
Our previous research has:
- led to the development of a new type of drug. These drugs are called ‘biological therapies’ and have transformed the lives of people with rheumatoid arthritis over the past 20 years.
- highlighted the importance of starting early, intensive treatment for inflammatory arthritis within 12 weeks of symptoms starting. It has also led to the introduction of a best practice tariff for those with rheumatoid arthritis, which means people are being diagnosed quicker.
We're currently funding research projects to find out what causes rheumatoid arthritis, and to develop new and improved treatments. For example:
- our centre for genetics and genomics is trying to understand how genetic factors determine whether certain people are at risk of developing inflammatory arthritis, and what happens when they do
- our rheumatoid arthritis pathogenesis centre of excellence is looking at why rheumatoid arthritis starts, why it attacks the joints, and why the inflammation carries on rather than switching off
- investigating how the organisms that live on our skin and in our gut differ in those with rheumatoid arthritis and how this affects a person’s response to treatment.
We’re continuing to fund different strands of research into the causes and treatments of rheumatoid arthritis. You can find out more on our website.
What I hate most about work is the prospect of having to shake hands with people. That’s not because I’m antisocial. It’s because my hands, like much of my body, are riddled with arthritis.
A handshake is about as common a custom you’ll find in business or in life. But for me, it involves someone taking hold of an already painful and damaged set of joints, then squeezing and shaking them for an indeterminate amount of time.
When I told a room of MPs this earlier in the year, the point was not to lecture a room full of politicians on their handshake techniques, but highlight that every person with a long-term condition like arthritis has a similar story to tell – where business culture, workplace etiquette and policy aren't compatible with our conditions. (Just try going into a meeting and refusing to shake hands with people and see how far you get!)
Of course, for most people with arthritis the challenges aren’t as trivial as the odd brutish handshake. The problems run much deeper.
Real high and lows
I was diagnosed with juvenile rheumatoid arthritis (also known as juvenile idiopathic arthritis) when I was 12. That was 20 years ago. It’s been quite a journey since then, with some real highs and lows – from needing walking sticks to move around to going to Parliament to talk to MPs about ways to improve the support available for people with arthritis.
From the tears because people told me I should give up work and writing, to setting up my first business this year.
I class myself as hugely fortunate to be among those who are able to work, but I'm all too aware that things could have turned out very differently, and on a number of occasions when my condition was at its worse, I could have let it get the better of me and turned my back on work.
I'm glad I didn’t and I'm thankful to those who helped me along the way.
We’re not just statistics
In reality I shouldn’t be here. I'm perhaps the exception that makes the rule.
I've known far too many people over the years who would have loved to have stayed in employment but have either given up on the system or the system has given up on them.
They're now part of the stats in the Government’s new consultation paper on work and disability, on the large number of people with conditions like mine that are out of work.
Since I first started work, there are countless occasions when I could have fallen through the cracks and become one of those stats. But I can point to three main factors that have kept me in employment:
- The number one factor is the NHS. Support and perseverance from the team at Aintree Hospital over the past 20 years has changed my life. Without them, I wouldn’t be able to get out of bed every morning, let alone get on and live a relatively normal life.
- The financial support from the Government, allowing me to claim disability benefits for a short period, was a major turning point. It meant I knew I had transport to get to hospital appointments and to work. It may not have been huge amounts in terms of pounds and pence but it gave me enough stability to be able to take stock and reassess my life and what I wanted to achieve, rather than operating on survival mode. It also gave me a purpose, to become self-sufficient and get off benefits (which I did within 18 months).
- Finally, I've worked with supportive bosses. My condition was never a factor. And crucially they let me develop a work-life balance that fitted around what I was physically capable of doing. They showed faith in me, and I repaid them with hard work.
Because of these three factors I was able to survive and then thrive in employment. If you removed any one of them, then I very much doubt I would be in work.
If we could find a way of getting those components to work more collaboratively, then we could maybe turn the 10-year journey I've been on into a much shorter one for future generations.
I was looking back through my diary to last year, and between appointments with my GP, physio, consultant, rheumatology nurses, orthopaedics, bloods and infusions, I had around 35 appointments in total.
That means that I've had to look my employer in the eye and convince them it's a good idea to hire me, or give me a promotion or even a pay rise, knowing that I can only work 11 months a year, plus my usual holidays – with no guarantees about my long-term health.
If my bank won’t even insure me, then we have to accept that employers running small- and medium-sized companies are taking on a risk, and make it easier for them to get the support they need to take on staff with long-term conditions like arthritis. That means gearing services to allow me to spend more time in the office.
Working with arthritis
Earlier this year I was asked to talk to MPs in Parliament about Arthritis Research UK’s Working with arthritis policy report, and share my thoughts on the Government’s ambitions to close the disability employment gap.
I’m sure most politicians would vouch that living in constant fear that your career may be snatched away from you due to circumstances beyond your control makes for a challenging working environment, but this is the reality facing thousands with long-term conditions like arthritis every day.
Around 10 million people in the UK have arthritis and other musculoskeletal conditions – yet only 60% of those of working age are in employment, 20% lower than the employment rate for people with no medical condition. That’s a huge number of people locked out of the labour market, in most cases through circumstances beyond their control.
The vast majority of people with long-term conditions want to work. But there comes a tipping point where the care we need from the health services, our physical and mental capabilities, the support available from Government and how we're expected to operate and deliver in the workplace no longer align.
Closer collaboration between Government’s health, work and business functions and employers is central to creating more scenarios where people can stay in work for longer. More support for small businesses who are often desperate to do the right thing but are taking on the biggest risks would be welcome.
Having chatted to a few friends with similar conditions there is one buzz word that continually crops up, and that’s flexibility. And in truth that's all many people want. A bit of flexibility in the workplace gives us the chance to compete on a level playing field.
For too long I tried to bend my work life (and my private life) around my condition. Around the hospital appointments, around pain management, around the anxiety.
I quickly learned that if I did that the game is rigged against people with arthritis. Ask us to do a 9 to 5 job on the same terms as someone without arthritis and you're setting us up to fail.
Playing the game on our own terms
This is the essence of the challenge facing Government if it's serious about helping people with long-term conditions like arthritis to find and remain in work, and closing the disability employment gap.
We need a fundamental shift in how we think about employment, that gives people with conditions like mine the security and flexibility to not just survive, but thrive in the workplace.
We have to be given the chance play the game on our own terms – to bend our condition and the treatment and appointments around what we want to do and achieve in our careers as much as possible.
t’s a culture change that won’t happen overnight, but the benefits are without question.
Knowing how close I was to falling through the safety net and out of employment all those years ago gives me a unique take on coming to work each day. Having the opportunity to be in work and be fulfilled by work has made a massive difference to me.
I’d urge anyone reading this to join Arthritis Research UK’s Work matters to me campaign, and ask the Government to make work and welfare a level playing field for people with arthritis.