Worsening of symptoms

How you are feeling or test results might show your arthritis has got worse. Arthritis is a condition that fluctuates so it could be a temporary flare up. Your doctor might send you for some more tests or refer you to another kind of health professional. You might be feeling upset and worried because of this, but it means you should get answers about what is going on and what might help.

Make sure you understand what your doctor has told you and ask what you can do to help yourself. If you have any other questions, ask for clarification. Find out as much as possible about what they have recommended. Make sure you look after yourself during this period – eat well and keep doing gentle exercises.

The most important thing you can do is to tell your doctor or another health professional who normally looks after your care. You may feel that you don’t want to bother them because they may think you are making a fuss over nothing. Plus, it’s normal with arthritis to have good and bad days – with your levels of strength, grip and movement changing from one day to the next.  But you should trust our own judgement. If you do think that your symptoms have got worse, it’s important to get them checked out and treated without delay.

Be aware of what’s normal for you and even jot this down in your diary or on a piece of paper. That way, it will be easier for you to spot real changes and harder for you to tell yourself that nothing has changed. It could help also to take a bit of time to learn about your particular sort of arthritis and how it affects your body. The Arthritis Care booklet Understanding Arthritis is a great place to start. It won’t blind you with science, but it will give you all the important facts about your type of arthritis.

There are lots of signs that might make you or your doctor suspect that your arthritis has got worse. Perhaps your pain has got more intense or lasts longer. Maybe you have more swelling or less movement in your joints. It could be that a routine blood test or other check has flagged up unexpected results. Whatever it is, your doctor will want to find out whether your arthritis has in fact got worse and how serious it is. They will often do this by asking you to have more tests.

You should never stop taking any of your prescribed medicines without speaking to your doctor or health care team first. This can be particularly dangerous with some arthritis drugs, especially steroids. People on steroids even carry special cards with them saying what steroids they are taking just to make sure they get their medication even if there is an emergency. Your doctor will tell you if you need to stop taking any of your medications.

Your worsening symptoms may just be down to a temporary flare up of your arthritis, or they could be a sign of that your disease is getting more active in your joints and that more damage is happening. Your doctor or health care team are the only ones who will be able to tell you for sure. Rather than pinning all your hopes on the symptoms going away, it can be better to focus on what can do to control them. That may be about changing your medication; it may mean you need an operation, such as a hip or knee replacement; or you may need extra help from other health professionals – for instance a physiotherapist or an occupational therapist. For more about these people and what they can do for you, have a look at the Arthritis Care booklet Understanding Arthritis or call the Arthritis Care helpline on 0808 800 4050. It’s free and totally confidential and you’ll get through to a friendly helpline worker who has close personal experience of arthritis themselves.

That depends on how severe your pain and other symptoms have become and of course what sort of lifestyle you already have. If you are in a lot more pain and have less movement, it’s unrealistic to say that your way of life will just carry on without a hitch. You might have to rethink how you can manage your work and family commitments. And then there’s the emotional strain. People with arthritis often say they get used to pain – but when it gets worse if can make them anxious and even depressed about what the future might hold. Everyday things like washing, dressing socialising or doing sport might become more difficult – adding to your frustrations.

These are very real problems, but there’s a lot you can do to stop them taking over your life. The Arthritis Care help booklets are written with the help of people who have arthritis. They are short, punchy and practical, giving great tips and advice on range of lifestyle issues, including working with arthritis, independent living and relationships.

No – as long as you have been taking your prescribed medication properly, it’s highly unlikely that your symptoms have got worse because of something you have or haven’t done. It’s worth remembering that arthritis is a disease that can ebb and flow. Osteoarthritis, for instance, can develop slowly over a long time, or it can worsen quite quickly. Similarly with ankylosing spondylitis – a form of inflammatory arthritis - bouts of pain and stiffness may come and go over the years. Blaming yourself will only add to your problems. Put your energy into exploring the huge range of therapies and techniques that could make a real difference to you and the people you care about. For more ideas see the answer below.

If your symptoms have got worse, you may well need to step into a new gear when it comes to exploring new ways to reduce your pain and stay as happy and active as possible. At one end of the spectrum, you may need to think about whether you could benefit from the help of other sorts of skilled health professionals. Physiotherapists, for instance, use gentle exercise and massage to reduce pain and swelling and improve your movement. They belong to a wider group called ‘allied health professionals’ (or AHPs) who work in hospitals and in the local community. AHPs are highly-trained in their specialism and include occupational therapists, who help you work out ways of doing everyday activities, and dieticians, who can help you keep your weight down and develop healthier eating habits.

At the other end of the spectrum – there’s you. Have you thought about what help you could be giving yourself to cope with your arthritis – especially if your symptoms have got worse? This could simply be conquering the small things like learning how to pace yourself and use your joints more effectively. Or it could be going along to one of Arthritis Care’s self-management programmes. These are free and run right across the UK. See the answer below for more on these. The real message here is to become more adventurous about your own role in controlling your symptoms and your life. For inspiration and ideas have a look at the living with arthritis pages on the Arthritis Care website or look at the message boards. And for more details on physiotherapists and other allied health professionals, see the Arthritis Care booklet Understanding Arthritis or call the Arthritis Care helpline on 0808 800 4050.

When you have a long-term illness like arthritis, your family and friends will often be a huge source of support and comfort. But sometimes you need more. People with all kinds of arthritis say that finding a local support group where they can meet and chat to other people with arthritis actually changed their lives. Ask your doctor or someone else in your health care team if there are any support groups near you. There’s also the Arthritis Care self management programme. It’s called Challenging Arthritis and it covers things like handling pain and fatigue and getting the most from your medical care. People who go on it say they feel much more positive about what they can achieve – and they also have fun and make new friends. If you want to know more, see the ‘living with arthritis’ pages on the Arthritis Care website, or call the Arthritis Care helpline on 0808 800 4050.

It could mean you need an operation. But surgery is usually only considered after all the other treatment options have been fully explored and when your joint is badly damaged by your arthritis. There’s a wide range of surgery that can help people with arthritis. It can be a smaller operation, either to find our how much damage has been done to a joint, or to smooth joints and repair cartilage (the rubbery tissue between your bones). On the other hand, surgery can mean a major procedure, such as the replacement of a whole knee or hip joint. If you do need an operation and want to understand more about what happens, have a look at the Arthritis Care booklet A guide to surgery. Having a basic understanding first may help you think about the sort of questions you should ask your doctor and health care team.

Along with shoulders, hip and knees are the most common types of joint replacement. These operations are carried out a lot and they are usually very successful. It can mean that either all of your joint is replaced, or just part of it – depending on the level of damage you have. The operation involves removing the joint and replacing it with an artificial joint (called a prosthesis) made out of either plastic, ceramic material or metal. Unfortunately, a joint replacement doesn’t last forever. It usually lasts between 10 and 15 years. After this time you can have another replacement (a revision) – although each revision replacement might be slightly less successful than the last. Hip ‘resurfacing’ is a newer technique – often used for younger people or when the joint damage is not too bad. Resurfacing is thought to be longer lasting than a replacement, but it is not recommended for women over 60 or men over 65 – or anyone without strong bones.

Many people find that their surgery brings about a dramatic improvement in their pain levels and their overall quality of life. Of course, it may take some time before you feel the benefits of your surgery. Recovering from an operation for arthritis can be a long and painful process and it usually takes a lot of effort on your part. And, as with all operations, there are risks. There is a small risk that the operation won’t work first time, or that it will lead to another problem like an infection. However some people who have had surgery for arthritis say they felt like their life before was on hold and that their operation has allowed them to start living again. The Arthritis Care booklet A guide to surgery will help you understand what your surgery will involve and what sorts of things you need to think about before and after your operation.