Personal experiences of joint pain
On this page you will find experiences of osteoarthritis from the point of view of people who have it.
Joint pain and stiffness are very common in people after middle age. While pain usually goes away with rest, stiffness may get worse. Some people’s symptoms start so very gradually that they find it difficult to pinpoint precisely when their problem began. Others find the symptoms start quite suddenly, perhaps after an accident such as a fall.
“What I think started it off, I tripped over, somebody had left a filing drawer open and I tripped over it, from then on I had this pain. I went to the doctor and he said, ‘You’ve got the start of arthritis in your knee .’”
Quite often the symptoms come and go rather than always being present. This is quite common in the early stages when there may be a mild problem for a while, which then goes. Even later on the symptoms may come and go. People usually come to understand the kinds of things that trigger them.
“If there’s a change in the weather, if I do too much or more than usual shall we say, sometimes if I just put too much pressure on a joint it’ll start it up.”
Nevertheless, people say they can be taken unawares.
“I pick the cup up as normal, but it might just ‘go’ that part of the hand. It annoys me, but it doesn’t stop me.”
Many older people, while they recognise that not everyone has OA in later life, tend to accept joint pain as part of growing older.
“I think aches and pains are one of those kind of things; I’m getting older…I suppose, in a way, I’m supposed to expect this kind of thing to happen.”
This is particularly so if they had a job that has involved putting a lot of stress on their joints.
“I worked in the motor trade all my life. So I mean from the age of sixteen, seventeen they (joints) were hauling and lifting – lifting wheels, lifting gear boxes, straining”
Those people who start with symptoms earlier in life, in their forties for example, do not necessarily accept joint pain as being natural for their time of life.
“I went to the doctors a few times with knee pain when I was in my late forties. They sent me for an X-ray and the doctor said it was osteoarthritis, wear and tear, in keeping with my age. I was shocked. I thought this was what old people got. I felt like I’d got old quickly.”
Coping with joint pain and stiffness
Pain and stiffness in a joint can make life difficult when people find the
y cannot do the everyday tasks they need to do or are used to doing. When the symptoms are in the leg, climbing stairs or getting in and out of a car may become a problem. OA in the hand can make it difficult to grip things, or to make fine movements such as doing up buttons. However, people who have joint pain often find a way round their difficulties and learn different ways of doing jobs.
“Well, if I’m doing something on the ground, I use a couple of pads– always got something as cushioning . But I find that I have to keep moving. It does go stiff and painful when I’m actually kneeling-down on my knees and I’ll have to keep changing the position that I’m in.”
Keeping active with usual activities and adaptations
People with OA also speak of their need to mentally adjust their approach to doing things.
“Instead of doing everything at 100 miles an hour like I used to do, I just take my time now, and sit down and think, “There’s always tomorrow” . Whereas before, I used to think, “ Well, there’s no tomorrow . I want it done today.” And you have to adjust yourself and change your way of life, don’t you?”
Some people, patients and health professionals, refer to doing everyday activities in stages rather than all at once as pacing. Similarly, when a joint is painful, people said they needed to find their own balance between rest and activity until it was feeling better.
“Aches, and pains, they may go after a few days, if you just give your joint a rest and just give it a gentle massage and walk about with it . And I think over the period you’re using it, you’re getting it right; you’re keeping it active; you’re going as far as you can .”
However, for people who are in employment, or responsible for caring for others, it is not always possible to pace activities.
“I was caring for my wife and you’ve got to get on with it, keep going. You’ve got to, there’s no other way. So, all these things may have been contributing to my joint problem; carrying weights, carrying on looking after my wife, when I really should have been seeking a bit more help myself perhaps.”
Nearly everyone who has joint pain feels that it is most important for them to keep as independent as possible.
“I have done everything for myself you know. I have said to my children I don’t want any assistance unless I can’t do it for myself.”
Sometimes people hide or downplay the difficulties that their joint causes them, often because they do not want to be seen as complaining or disabled and in need of help.
“I can live with the discomfort, I can live with the pain; but what I don’t like is sometimes I limp and people say, ‘Ooh! Have you hurt your leg?’ It’s not vanity – it’s part of the image you have to portray in business .”
“Aches, and pains, they may go after a few days,…. ”
“…I really should have been seeking a bit more help myself perhaps.”
The future – concerns for the future
Some become apprehensive about what their future holds. This may happen when painful joints start at a relatively young age, or if people have experience of a family member or friend becoming disabled through arthritis.
“My mother was very much the same and she was in a wheel chair at the end of her life. That worries me a bit. If I’m like this now, what am I going to be like in another ten years?”
Many, though, do not expect to become disabled as a result of OA since their symptoms level out or even improve.
“Latterly it’s improved. The only thing I have now with my knee is a twinge now and again where I say, ’Ooh, I shall have to be careful.’”
A change of occupation or retirement may result in the symptoms easing off altogether.
“My hands were very badly affected, but since I’ve retired and not doing the manual part of nursing, you know, the humping and that, they seem to have improved and I can now knit again.”
Consulting the doctor
It is quite common for people with a joint problem to decide not to consult a doctor. They may believe that there is little that can be done about it and that they do not want to waste their doctor’s time. Amongst those who do consult, some say they are told that their problem is just ‘wear and tear’.
“With the doctor telling me it was, sort of ‘wear and tear,’ that meant he couldn’t do anything, I suppose. But I don’t know whether they can or not.”
When this happens patients may think that their doctor is telling them that they have to accept that joint pain is inevitable in later life and that there is nothing a doctor can do. This can make some people reluctant to consult their doctor for a second time about a joint problem.
Some patients believe that painkillers are the main treatment offered by doctors.
“I haven’t been to the doctors about it because I can’t see any point because they can’t operate and all they’ll say is, ‘We’ll give you some more tablets.’”
In practice many people try to limit the number of painkillers they take and they may combine tablet and non-tablet ways of managing their symptoms.
“I swear by my TENS machine, my pain killers and my heat pads.”
Some people have other health problems as well as OA and they have to take these into account when managing their joint problem. When these include other joint or muscle conditions, it can be difficult to know whether it is OA or a different problem which is causing their symptoms.
“I could say, “Oh well, if the pain’s due to the arthritis perhaps I could go swimming because I think that may help me. But, I can’t go dancing. It’s a wonderful thing for osteoporosis, but it’s no good for my back problem, because I can’t jump or jar it.”
In this situation patients want reassurance that what they do for OA is best for them, and is also helpful for any other condition they have and vice versa.
The importance of keeping going
Whatever people’s circumstances, one message that came out clearly from conversations with people who have joint pain is how important it is to stay as active as possible.
“And my daughter-in-law’s auntie has got arthritis. They told her she’d got arthritis, and she just sat and she’s now in a wheel chair. She stiffened up everywhere. I’m not going to do that. I think exercise is the best thing for you. Keep going!”
“I want to be as active as possible for as long as possible and I am quite happy to exercise even if it’s a bit uncomfortable you know. I don’t totally go along with the no pain – no gain thing, but equally you can’t expect to just wave a magic wand and it will disappear. So it would be nice to know what could be done, apart from medication, that could be beneficial and not harmful”
There are many things that people who have OA can do to stay active and independent, and these will be discussed in chapters 4 and 5. The next chapter will look at OA from a more medical perspective so that the reasoning behind the advice becomes clear.
Things to remember
- While joint pain and stiffness can make life difficult, people usually find a way around their difficulties and maintain their independence.
- Some people believe that OA is something that they just have to put up with, and that there is nothing that can be done. However, as you read on you will see that this is not the case.
- If you have medical problems in addition to OA, you may need extra guidance and reassurance that what you do to manage one health condition is good for another.
- Many people with joint pain say they have found out from experience the importance of keeping physically active.