Rheumatoid Arthritis

Messages to others with RA

People offered many different kinds of advice to others with rheumatoid arthritis (RA), based on their experiences at different stages of their illness. People are all different and what works for one person may not work for someone else. Here are their suggestions:

Your illness:

Get a diagnosis and start treatment as quickly as possible

It is important to diagnose rheumatoid arthritis as early as possible and to get it treated quickly.

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It is important to diagnose rheumatoid arthritis as early as possible and to get it treated quickly.

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Age at interview: 49

Sex: Female

Age at diagnosis: 33

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You know, what you have to do is you have to diagnose this disease very early and treat it very early. And the only the problem is, is I think you have to, you have to be able to be extremely well informed of what happens. I, as you know, had to deal with it in my way. I think probably having dealt with it the way I did it would be, I mean, what I'm saying and what I did was totally different. So I'm, it's difficult for me to say this in a way because I, I didn't go onto medication for 10 years. But it's the damage now that's the problem.

It's not actually controlling the disease, if this is the answer, if anti-TNF, which it is helping me, you know, is actually helping, then it's the joint damage that's the problem. But we're human, you know, we have to deal with things in the way it's, you know, you have to deal with this emotionally. It's a very emotional, I mean, when you're diagnosed with something like this you have to find out all about it, you have to come to terms with it. There is a process that you have to go through and you have to deal with it in your way.

Take your medication regularly
Remember that the painkiller paracetamol can be taken on an empty stomach, ie. first thing in the morning, without it harming your stomach (see 'Painkillers')
If you are in pain your doctor may be able to refer you to a pain clinic
Find out as much as possible about RA, medication and services available (see 'Finding information about RA')
Pace yourself, listen to your body and accept that some days you can't do certain things (see 'Self-management')
Keep moving, lead as active a life as possible, and do your exercises
Exercise in water, where you don't put too much stress on your joints (see 'Exercise' and 'Physiotherapy and hydrotherapy')
Try complementary therapies but be aware that they may not work for you and you may waste your money (see 'Complementary and alternative approaches')
Eat healthily and sleep well
If you have the opportunity, try and take part in clinical trials
If you are offered anti-TNF therapy, give it a go but remember that it is not a cure

Linda encourages other patients to volunteer to take part in clinical trials.

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Age at interview: 44

Sex: Female

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People are scared by drugs trials or these new drugs on yet nobody knows. It’s not tried and tested, you know, trialed, but it’s only guinea pigs. If you don’t put yourself forward to have a go then how are you going to get results or how are you going to know if it does work.

And I just think when you’re in a situation where you are confronted with pain you will try anything if it means you will, it gets some relief. And I just think, ‘Don’t be scared to have a go because the positives outweigh the negatives’.

Because she feels much better since started on anti-TNF medication, Sandra tells others to try it...

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Age at interview: 51

Sex: Female

Age at diagnosis: 51

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Based on my experience I’m very glad that I was started on the anti-TNF’s because it has made, it hasn’t got me back to what I consider my normal self but it has made day to day life so much easier, so much easier. I think the important thing to remember with the anti-TNF’s is the, they’re not a cure and that there is no cure and one of the reasons for taking it is to prevent joint damage and when I was in hospital I saw some ladies that had such dreadfully deformed hands that I don’t know how they could manage to do anything for themselves with those hands. So you have to remind yourself that that is part of the treatment, it’s to prevent you getting that bad and to keep your joints working better for you as well as reducing the, the pain and the day to day struggles that you have. It’s a preventative thing as well as the treatment.

I think everybody’s very individual. I mean when I was first diagnosed I was told by a friend that her friend had got rheumatoid and she was started on Methotrexate and she was back to running three times a week so everybody is different and everybody responds differently and that was my hope in the beginning. So give it a go. If you’re offered it, I think if you’re offered it then you’re probably that bad that you should give it a go. I can only see, certainly for me that it was only going to make an improvement. And enjoy the relief while it lasts because that is what some people say is that with the anti-TNF’s they do wear off after a while but you can’t worry about things like that, you just have to take the relief it gives you for the time that it lasts for, if it does. And if it doesn’t work then there are others out there to try and I think you need to be honest with people that are assessing you as well. You know there’s no point putting on a brave face because they want to know what you’re really like as to whether these drugs and for helping their choice of drugs to help you. So you do have to be honest with them and let them know if you’re struggling. Let them know if you’re tired and let them know what day to day life is like for you.

Dealing with professionals

Approach health professionals positively
Build a relationship with your GP
Find a consultant you like and trust and who knows about the latest treatments
Work with your consultant, have a partnership
Change consultant if you do not feel you are compatible with them
Plan your consultations carefully, make the most of the time you have, build a rapport with the consultant and remember to ask questions

Ask questions and get all the information you need at the time of the consultation.

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Age at interview: 45

Sex: Female

Age at diagnosis: 39

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I think, I think, ask questions. If you come away from a consultation, whether it be with your consultant, GP, one of the ancillary people looking after you, the idea is that you never come away with more questions than you went in with. I think I would actually seriously say to people, 'Seek information, plan your appointments and, and actually focus on getting, maximising your time.' So actually, I, I truly, believe anyone with a long term condition, you go to the hospital, if you're in a area where you don't get seen that often, it might be you only get seen once every 6 months or whatever and I think it's important you maximise that time.

Build a rapport. It's worth getting to know the consultant. It, it is really worth planning the appointments and, and maximising the benefit. Especially if you've come out of there and there are still unanswered questions and you know you've got to wait another 6 months to get the answers. I don't think there's anything worse than that, it's soul destroying.

And I would actually suggest to anyone, if they are in a situation where they don't feel that they're, they, they've got all the time they need, don't wait to be told when the next appointment is, ask there and say, 'I have got more questions, can I come and see you again when I've, when you've got more time to deal with this?' And I think it's very important. If you ask any consultant for information they will give it.

They will give you their time. The thing is, they won't bombard people because it, it's a two way street. But, you know, it's down to the individual to ask and seek the information. There is the information out there but, you know, you've got to be, you've got to ask for it basically. That's the one thing I would say to people. And don't be frightened of asking for help with, with the condition.

Practicalities

Adapt your lifestyle to accommodate your illness - don't let it take over your life
Accept help when it is offered and ask for help when you need it

There are times when you can remain independent, but at other times you need to accept some help.

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Age at interview: 38

Sex: Female

Age at diagnosis: 21

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And another person said to me one time, when I was looking for some sort of help, it isn't that you want somebody to take over your life, but you're quite capable of flying the plane but you just need somebody to assist you, and be the co-pilot now and again that when things get a bit rough they can take over, and I thought that was such a brilliant analogy, and I thought yeah, its you know, when you're capable of running the ship by yourself you go ahead and do it, but sometimes you just want somebody to read you a little bit and sort of say right you've had enough lady, you know I'll carry on for a little while and it's, without it being sort of off, its that sort of, its I wouldn't say it's walking on eggshells but I think it can be, because some people take such offence from it sometimes and say look 'I'm taking over' but I'd say 'No go ahead, [laughs] please, you can make a cup of tea this time'.

Adapt the home and buy equipment and gadgets to make life easier (see 'Personal life and changes to the home')
Try things out in the shop before you buy them, e.g. holding cups

Approach to life

Try to keep a positive attitude
Try to come to terms with the illness and accept it
Don't get depressed
Don't moan and groan
Don't isolate yourself, join a club
Try yoga or start a new hobby, something you enjoy and make time to do it
Talk to others with RA and join a support group such as Arthritis Care
Keep flowers in the house, they will lift your spirits
Trust in God

Message to other partners of those with RA

We interviewed 4 partners who gave the following messages to others in their situation'

Don't panic about what the future holds - none of us know what will happen tomorrow
Take one day at a time
Make the most of your partner's good days/periods
Look for things you can do together rather than regret the things you can't
Be aware of, and sensitive to, your partner's needs and be prepared to help when necessary
Be optimistic, with a positive attitude and don't let it rule your life
The problems can be overcome and there is support available
It is a gradual change and adjustments happen over time but it is important to recognise your partners restrictions
Seek information about RA
Persevere when seeking a diagnosis/treatments
Don't be afraid to ask health professionals questions.

Last reviewed August 2016.
Last updated March 2012.