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Chronic Pain

Walking aids, wheelchairs and adaptations for chronic pain

Most of the people that we talked to experienced problems of reduced strength, fitness, body flexibility and mobility and were limited in how long they could sit or stand. These problems sometimes affected personal tasks and social and work related activities.

Some of the people that we talked to found it helpful to use walking aids, wheelchairs and equipment or had adaptations to their homes or work places.

No-one we talked to used a wheelchair as their main means of getting around. However, some people were under the impression that they eventually would need a wheelchair even though this is not necessarily the case. One woman had decided not to use a wheelchair because she didn't want to become reliant on it.

 

Doesn't use a wheel chair because she doesn't want to become reliant and prefers to keep active.

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Age at interview: 28
Sex: Female
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Like using a wheelchair or you know, yeah, people have not I think, not medically because medically they like to keep you as mobile as possible for as long as possible. I think it has been possibly suggested to do certain things but you know it's one of those things again isn't it, like making an awful lot of people's lives so much easier if they just bite the bullet and just get in a wheelchair and do it. But in another way, if you said no.

The thing is if you stop isn't it. If you stop doing something that's hard to do it becomes even harder the next time you try and do it. But that's not to say a wheelchair is wrong. It works for some people. I just don't know. If I had to say, I needed, really had to do something but I really couldn't do it, and that was my, well you know, my instrument, but it was something that was going to help me achieve what I really had to do, then obviously I would do it if I really needed to, you know the place it is, at the level of importance.  

But I'd do it. I try to keep going as much as possible, you know, it's so important to try and keep going because otherwise you lose. I don't know. It's just you need to, I don't know. I personally need to keep going.

Several people described using a wheelchair from time to time. This could be difficult to explain to other people and some described feeling like a 'fraud' because they were not 'paralysed' and could get around independently most of the time.

 

Fought against using mobility aids but now uses a wheelchair or crutches although finds this...

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Age at interview: 24
Sex: Male
Age at diagnosis: 18
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I use a variety of mobility aids, usually two crutches, one crutch or a wheelchair, depending on the amount of pain I'm in. I know that, the use of these, this equipment has been affected by my spinal complications as well, 'cos it can mean some days that using crutches is not an option, because I can't put that kind of pressure on my spine if I'm in too much pain.  

It also means that I rely quite heavily on my wheelchair when I'm working because I'm up and down a lot and I've got a lot of different jobs to do, so I have to conserve my energy to deal with the pain and to deal with jobs in hand, rather than physically getting around. I think when my pain first arrived in a big way, when I first began to think of it as a huge impact on my life, I was prepared to spend all my energy on making it go away and making it not be an issue.  

I fought it very, very hard and for a long time not to use crutches, not to use a wheelchair because I thought that was admitting defeat and saying the pain is here to stay and it's going to dictate my life. Whereas I think, after talking with my friends and my family, they made me realise that it was actually a strong thing to do.  

It was saying that I'm getting on with my life and these aids are just going to help me do it, they're not necessarily here to stay. There are days where I can walk, there are days where I can't walk at all and I'm in my chair all the time and I think this is, it's a strong thing to say 'When I can walk, I will and when I can't, I won't'. 

Because it can also be confusing to other people and it means that I do have to explain an awful lot, that my symptoms are primarily pain and that means, when I'm in too much pain, I can't walk and people find it really hard to get their head round the fact that that can change. So I think it's a good thing, just to be able to explain it and to adapt to different situations.

People were most likely to use their wheelchairs so that they could do things that would otherwise be very difficult. Far from being dependent on them they said that they used the wheelchairs to stay active or to make things easier for their companions. It was felt that a balance needed to be achieved between maintaining mobility and making life easier.

Some only used them when they would otherwise have to do a lot of walking or standing; perhaps going on holiday, at an airport or on a trip to a garden or city. One man used his wheelchair when he went to the rugby to avoid getting knocked by the crowds and recommended that people check that a wheelchair could be accommodated in advance.

 

Uses a wheelchair occasionally particularly when going to the rugby to avoid problems with people...

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Age at interview: 54
Sex: Male
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With chronic pain, what you have to do is to make sure it doesn't get into the way of your day to day life more than it needs to. I talked earlier about being able to say 'Well what can you do' as opposed to 'What you can't do' and socially, life is pretty good. 

You just get involved in different sorts of things but take into consideration that you've got your pain and, as I said earlier, there's things you can't do but there's nothing to stop you and the usual sort of social things, with family, friends, going out to events, things like that.  

I mean, if you go to a rugby match I have to go in a wheelchair because although I use a stick most of the time, people tend to still come straight towards you and, of course, if its been a rugby match and they've had a few pints, their sense of direction is probably worse than mine and they just bash into you.  

So you go in a wheelchair, so again it's adjusting so you can actually do things. And I have a philosophy that if I want to go and try something, I'll have a go and if the facilities don't accommodate you then you have to find out if there's a way of doing it. If there's a way round it. 

Because some places you go to, all right there's a new disability act but they're just not aware of it and sometimes you chat to them and say 'You know have you thought about putting that there because that would really help?'. They're quite amenable to it because they probably haven't thought about it and I find if you go in a constructive way and ask and suggest things, it sometimes works.  

Others used a wheelchair on a more regular basis to help them perform their everyday activities. One woman described how her powered wheelchair meant she could do activities such as shopping during the day which allowed her to save her “walking energy” for going out socially in the evening.

 

Her powered wheelchair allows her to achieve daily activities such as shopping so she can save...

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Age at interview: 29
Sex: Female
Age at diagnosis: 23
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Yeah, people have a funny attitude about being in a wheel chair, they think it is like their last resort, like my friend who has rheumatoid arthritis would never get in a wheelchair because she might never get out of it and what would people think, the way people treat you when they see you in a wheelchair and people can feel patronised, people talk over you to the person behind you as though you're not even there. 

Whereas to me the wheelchair is an extension of my car, so it means I can drive into town and park and then get out and carry on driving around the shops, which seems very sensible to me, it means I can spend the whole day going shopping by myself because I've got a power wheel chair, so I can whiz around, do all my own shopping, be completely independent, pile it all back in the car and come home again with no help whatsoever, which is much, much better than trying to park walking round one shop, which is all I could manage and then having to go home and sleep for the rest of the afternoon and maybe do one other shop the next day, whereas there's no fun in that particularly. 

So yes, I think a wheel chair is a brilliant idea as long as you use it in the way that you're supposed to, because obviously a physiotherapist will tell you not to spend your whole life in a wheelchair, which is obviously important if you're in chronic pain, you need to get out and exercise, but if you use it sensibly to combine it to pace your life, so I can go in, do my shopping, go into town and then I can use my walking energy in the evening to like go to the pub or go to the cinema or go and see a friend, so I can use my legs then, then you've done twice as much as what you would be able to do in a day. 

So I think that's really sensible, and it works really well, and it means now I can go for long walks outside, my wheelchair will go to between 6-8 miles, much to my boyfriend's displeasure, so we can go for 6 miles walk which is just fantastic.

Most public transport and public spaces are now wheelchair accessible, although some people that used wheelchairs commented that they felt 'marginalised' when they were in them.

Healthcare professionals are sometimes concerned that people will become reliant on mobility aids and recommend that people stay as active as possible. However, one woman said that her GP saw her as a 'whole person' and had encouraged her to use a wheelchair if it meant she could carry on doing the things she wanted.

 

Explains that her GP encouraged her to use a wheelchair to help her get on with life.

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Age at interview: 24
Sex: Male
Age at diagnosis: 18
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How have you found the attitude of the medical professionals to you using the wheelchair and crutches?

The attitude of medical professionals to the mobility aids that I use has been very varied. I originally started using a wheelchair on the recommendation of my GP, this was the same GP that was completely pro-active when it came to alternative therapies. She saw me as a whole person who needed to get on with my life. She knew I was a very determined person and I wasn't going to spend years in bed, because that was my only other viable option. 

And so I think, at the time, it was 'Start using a wheelchair and get on with your life or not'. So, as a human being, as well as a doctor, she urged me to think about it. I think progressing on from that and the different specialists particularly that I've seen, they can often as 'Well if you can walk, why do you use a chair sometimes, I don't understand' and that seems a very strange thing because, as a medical professional, surely they can understand that no patient is going to want to use something that makes their life difficult, because being in a chair does make my life difficult but, in another way, it makes it easier if I can carry on.  

But I think the attitude that I've had to adopt is that my pain is so variable that it's a coping mechanism and, at the end of the day, most medical professionals do accept everyone has different coping mechanisms.

People used walking aids (sticks and crutches) mainly to help them get around but also to help them stand up. Some found it made them feel more secure when they were out and about, although one woman said she sometimes felt vulnerable when approached by crowds of young people.

Often people had noticed that they had developed an additional pain problem from using a single walking stick and had changed to two or stopped using them altogether. It is important to get properly fitted and trained in the use of a walking aid. One woman felt that her GP had not understood her problems with gripping her stick but had eventually been referred to a nurse who had provided a special walking stick.

 

Developed tennis elbow from using a walking stick and has had to stop using it.

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Age at interview: 48
Sex: Male
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You mentioned earlier that you'd had problems with a tennis elbow?

Yes, tennis elbow seemed to be I think it was caused by the walking stick. I was using a walking stick quite a lot and I was putting a lot of pressure on my right hand side and I started to get shooting pains in my elbow and so I moved it to the other side the walking stick and I started getting pains in that elbow as well like and I got physiotherapy for that and that seemed to go away and I moved back to my right hand side and it's just the weight leaning on the arm constantly. 

All day, every time I was walking I was mostly using the walking stick when I was outside and that just caused problems as well. And it's been there for about four months now. That's a bit annoying, I'm waiting for physiotherapy for that but I mean you can wait six months for physiotherapy, to actually get the treatment and by that time it's either away or it's got really worse. So I'm having to try and walk without the walking stick now so I can't walk as far as I would.

 

Her doctor was not helpful when she was having problems gripping her walking stick but the nurse...

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Age at interview: 59
Sex: Female
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When I went to my GP I said that 'Did he have any suggestions because when I was using my stick my hands will no longer grip properly.' It's just a regular walking stick but metal, you know, with the ridged handle. And that's fine if you've got a half decent grip but if you don't. 

And he was very dismissive. 'Well that's what it is. That's what we have'. And I said 'There's got to be something else. This has been in fashion for a hundred years. There must be other people like me.' So what I'm saying is that I had to be very pushy almost and he finally said to me 'Well, make a 20 minute appointment with the nurse' and, but I mean, he didn't volunteer that I had to kind of as I say get a bit, you know what I mean, why didn't he tell me that in the very beginning. You know when I mentioned it. Why did he say 'Oh there might be something, get in touch with the nurse because that's what they deal with'. No. It's just that's it. That's what we use. Well, you know. 

So anyway I eventually did get in touch with, I was able to make an appointment with the nurse in the surgery and they made enquiries and there is, there's a special, there is a special walking stick just for people like me that cannot grip.

One man thought that walking aids are sometimes used to demonstrate to others that the person is in pain, since pain is otherwise invisible (see also 'Impact on friends and reaction of others').

Several people told us that they had equipment or adaptations to their homes, which make them more comfortable and easier to get around. Adaptations and equipment included stair and bath rails, widened doors, a wet room or walk-in shower, raised toilet seat, grab sticks, raised armchairs and high chairs for working in the kitchen or at an ironing board.

Some people had paid for these themselves whereas others had been entitled to help from the social services. A few people had been assessed by an occupational therapist and provided with equipment which had been helpful. Others had found this distressing because they felt that the recommended equipment would not be suitable for their needs and seemed to assume an inevitable progression to greater disability.

 

An occupational therapist arranged for him to have a walk in shower and a raised seat for the...

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Age at interview: 57
Sex: Male
Age at diagnosis: 50
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What sort of things did the occupational therapist get for you?

Well the shower was the major item because I couldn't get in or out of the bath here, there was no grab rails or anything else. I did try but I got stuck twice, and it was really hard getting out of there, and I used to, obviously I had the car then, and I used to go to me sister's, possibly fortnightly, and have a good bath there because she had, well she had like a shower attachment, and also a big pole that I could use to get, you know, pull me self in and out like, you know, and just to know there was somebody there an all because I was scared of getting stuck. 

So that was, that was great when the shower finally was fitted. But the other great thing has been that chair there, mind this has been a godsend, but the chair there its just so, its amazing, my back could be going mad and I just use the chair to sit down and do the washing up, or whatever. 

And I don't know whether its because the way the angle of the seat or just how it is but, me back kind of really seems to ease, and I don't know, and I just seem to be in that position and its just oh, like heaven, and I keep... that's what I turn, the position I try to get when I'm out walking, when I like rest against the walls, what I was telling you about, its, I found that that's where I get a bit of comfort, and I try to replicate, replicate it when I'm out walking and things like that.

Several people had been provided with special seating, foot rests and desks at their workplace (see also 'Coping with work and study'). One man worked from home as a writer and had been provided with a specially adapted reclining seat and computer workstation, which was his “life saver”.

 

Was provided with a specially adapted reclining seat and workstation, which allows him to work...

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Age at interview: 61
Sex: Male
Age at diagnosis: 50
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Tell me about your set-up...

This is my life-saver. I can't sit at a desk because the pain builds up too quickly, but when the pressure is off my back the pain is quite bearable, liveable and sometimes almost when you're highly concentrated, it's not really noticeable. 

As you can see in this situation, I mean all the pressure is off my back. I'm completely supported. So there's no stress in my body to propagate pain. But without this workstation I couldn't, I couldn't function. Originally, why it's rather ratty here is that originally they set it up with the supports they use for burn victims but these turned out to be very uncomfortable and so I took them off and just went back to some, some foam. And as you can see, you know, I sit here and type and I've got an Internet connection, email what have you, so I'm in touch with the world.  

Last reviewed August 2018.

Last updated November 2012.

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