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Rheumatoid Arthritis

Mobility, driving & transport issues for people with rheumatoid arthritis

Mobility can be a problem for those with rheumatoid arthritis (RA), especially when there is active inflammation. Because of the nature of RA some people have difficulty walking even short distances one week but can walk much further the next week.

Those with bad rheumatoid arthritis find it particularly hard to get up in the morning, stand for any length of time, get out of chairs, kneel on the floor and find it difficult to get in and out of the bath. Many people found that their range of movement improved once treatment had started, and some found that steroid injections helped during a flare up (see 'Steroids tablets, injections and intravenous pulses' and 'Biologic treatments' anti-TNF therapy and B-cell therapy rituximab').

 

She had difficulty with mobility before she started treatment but now it is much improved.

She had difficulty with mobility before she started treatment but now it is much improved.

Age at interview: 27
Sex: Female
Age at diagnosis: 27
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Really going up and down the stairs and getting up and down from the sofa and actually getting down on the floor with my daughter. And now none of those are a problem. Ironing was, had to be taken in short bursts 'cos I got too tired and too achy standing up for a long time but fortunately I can do all of those things now [laughs] I try and suggest that I can't but it doesn't kind of wash with my husband anymore [laughs].

So kind of life now is so much better than it was a year and a half ago in terms of what I can do because I am so much more mobile. I still can't crawl across the floor  but I can walk across the floor on my knees and I can get down and up again quite quickly so, and I can run up my stairs which a year and a half ago I could barely walk up them. So, you kind of I, it's, you know, my, my joints are so much better than they were a year and half ago. I, I'd have been much happier you know when I was diagnosed if I knew it was going to get that, that good. I really didn't think I'd be able to do what I can do now. So but I don't know whether that's the same for everyone or whether I'm just really lucky on the drugs, or, or what.

 

When he first got ill it took him four minutes to get off the toilet seat.

When he first got ill it took him four minutes to get off the toilet seat.

Age at interview: 76
Sex: Male
Age at diagnosis: 74
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But you got to keep doing a bit of it, whenever. Whenever I've go up, I use the old stairs and get my legs going, you know. One time when I first started this, you know, I was so weak I had to throw myself out of the chairs to get out of here, just to lift myself up was absolutely, well almost well it wasn't impossible eventually I made it. Even to get off the toilet, it took me four minutes, something, on average four minutes to get up off the toilet seat.

I had to get my walking stick and hold, and get it around the handle of the door to pull myself off the' and so it went on. To get out of the car, my wife had to get the walking stick and pull me out of the car [laugh]. It really hurts to think that you can come from that to this but then that's, that's the complaint, you know. So after going, going through those early phases of the disease when it hits you so violently, some people of course, it, it doesn't it just builds up gradually.  

Some of the people we interviewed found stairs or steps difficult too. One woman said that she could manage stairs on good days, but on other days she had to go up on all fours. Another woman found it particularly hard to walk down stairs. Her consultant advised her to walk down stairs step by step, standing sideways. She tended to look for places with lifts or escalators that went down as well as up.

 

Her specialist advised her to come down stairs sideways.

Her specialist advised her to come down stairs sideways.

Age at interview: 52
Sex: Female
Age at diagnosis: 47
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But even the menial things you know even like the stairs, stairs are a nightmare to me, not going up them, coming down them because I got no, how did my specialist put it to me one day when I tried to explain, and he said 'Think of a car and think of that car with the shock absorbers in it, and when the shock absorbers go in the car it doesn't bounce, that's your feet' he said 'that's your feet' he said 'so whereas you can go up, you can't come down'. 

He said 'So always think that way' he said 'and if you're going to come down stairs, come down on your side, walk on your side to come down step by step by step' but that's difficult when you're in shops or you're somewhere because you know, you get these people looking at you and think you know, 'She's not old, what's she doing? What's she walking like that for? She's not an old person, only old people do that'. Or you get an old person coming up on the same side as you and you just, you know who moves first? I can't move because I'm scared if I leave go of this of falling. 

You know, so it's little things like that, you that sort of I don't, I don't know whether they annoy me or they, they just, I'm aware of them, so I tend not to do stairs. If I see somewhere that I have to go up or down, if I go, if I go anywhere the first thing I look for is a lift, or an escalator, but the escalator has got to come down, it's not going up, it's got to come down, you know,  it's, it's so many, so many things that change you know I could probably go on for hours, but everythings scrambled in my head. 

Sometimes people have difficulty using particular joints so use other parts of the body instead. One man said that when he was in a lot of discomfort he used his elbows instead of his hands to pick things up.

Surgery may also have a positive effect on people's daily lives. One woman explained how surgery to her elbows had made it much easier for her to reach things. Other people who had recuperated from hip, knee and ankle surgery found their walking improved (see 'Surgery - Lower limb').

 

Surgery for her elbows changed her life and made movement much easier.

Surgery for her elbows changed her life and made movement much easier.

Age at interview: 37
Sex: Female
Age at diagnosis: 27
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Before I had the elbows done, I was fixed virtually at like a 45 degree angle and I used my shoulders to move forward and backwards to give myself reach and things like that. It affected me with everything. I couldn't reach into cupboards to get things out. I couldn't, you know, to get down to the floor it was, you had to reach so much further. It affected absolutely everything.

When the first elbow was done I noticed very, very quickly how much I had. I mean, within, the next morning they take the dressings off and make you move it and that's frightening 'cos it's huge, it's black, it's horrible but you can already see an improvement because you have a virtually straight arm which you haven't had and you know you can get it back to the bend. You just need to keep the straight so it has to be kept into a splint for a while but it's amazing I, it's the best thing I ever had done. Yeah, definitely. Changed my life.

Some people spoke about their fear of falling, particularly if they couldn't put their hands out to save themselves from a nasty bump. Some people used walking sticks and watched carefully where they were walking.

People who needed to use wheelchairs, or other mobility aids, described how this helped them to be more independent. Many people found a wheelchair useful for longer distances outdoors, sight seeing, shopping, exhibitions, and conferences. Mobility aids sometimes could be hired or borrowed. One woman said other people tended to ignore her, talking instead to the person pushing the chair. Someone else said that when she was in her wheelchair others would speak to her loudly and clearly. They seemed to think she might be mentally as well as physically disabled.

 

She found it hard to accept using a wheelchair.

She found it hard to accept using a wheelchair.

Age at interview: 53
Sex: Female
Age at diagnosis: 30
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I'm already having to use a wheelchair on, you know, occasions where the walk is longer than 100 yards. I mean we went to see Madam Butterfly at the Albert Hall last night for example and parked in, in Hyde Park which wasn't very far away but too far for me to walk. So, you just have to bite the bullet and get in this wheelchair which you don't actually want to do but it's the only way that you can actually get around and, and do things that otherwise you wouldn't be able to do. So there are all sorts of psychological elements to having this disease that are complex and difficult and emotional and painful and you have to, you just have to come to terms with.  

One woman pointed out that others expected her to stay firmly in her wheelchair, and stared in surprise when she got out of the chair to walk over the bridges in Venice.

Some people managed public transport. One woman said that she got a 'freedom pass' from the local council because of her disability. Others found buses and trains difficult because they found it problematic to get to bus stops or around stations, hard to climb on and off and seats weren't always available. However, those who used air travel said that this was fairly easy, because airline staff provided wheelchairs to help transport them around the airport and they often received preferential treatment.

People had various solutions for their transport difficulties including relying on family and friends for lifts. Some used taxis from time to time, but one person noted that it could be hard to get in and out of taxis. One woman, who couldn't walk far, used an electric 'four wheel trolley' to get to and from the local village, and a man used a motorised scooter at work (see 'Work').

 

She uses an electric 'four wheel trolley' to get to the village and back.

She uses an electric 'four wheel trolley' to get to the village and back.

Age at interview: 78
Sex: Female
Age at diagnosis: 32
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Four wheel trolley.  

Yeah?

Yes.

How did you come to the decision to get one of those?

Because when my husband died, I sold the car. We'd only had it a year, sold it back to the garage he'd got it from. Well now, unless I got a taxi, I can't walk the length down to the village, to the post office, to the chemist, and that little few shops up and down there, and so I decided, well, I, I can drive a trolley. I used to drive a car so it can't be all that difficult. And we, [daughter] took me into the shop and we just picked this. It's only got thumb controls. So as I can use my thumbs.

Yes. One is forward, one is for reverse, that's all. And to stop it, you just take your thumbs off the levers, you know. They weren't terribly helpful, in the shop where I bought it from, which is called Mobility. For instance, I've been back since and asked if they have a cov, like a canopy to fit on it, so that if it rains, you know, you're in the dry. 'No, they don't make it for that model'. 'Well do you have a cape with a hood and that to go over?' 'Noo. Nooo, we don't have one for that model.'  Which I don't find very helpful, you know.

I've got a motorcycle cover, which I keep over the thing. We did think about, [son] thought, my eldest son, thought he'd make a ramp to, so I could get it up into the shed that's there. But it's impossible the door's not wide enough. So it has to, and besides which, it's electric, it's on charge all the time and so you wouldn't be able to charge it from the shed, unless you had a very long lead. But I have it through a hole in a window frame in the kitchen, and that comes through.

And does the, I mean, it, it gets you there and back?

The charge? 

It doesn't run out or anything, it gets you far?

It gets me from here down the bottom, to the village.  

One woman was still using her bicycle for short journeys, but another person had had to give up cycling.

Although some people had had to give up driving most could still manage it and valued the independence it gave them. People bought their cars with care, making sure they could open the doors and windows, easily get in and out, turn the ignition key and controls and adjust the seat to a suitable level. Having RA also meant they could not sit for long periods without becoming stiff, so planned breaks in long journeys.

 

Changed to an automatic car and describes what she looks for when choosing a new car to make sure...

Changed to an automatic car and describes what she looks for when choosing a new car to make sure...

Age at interview: 43
Sex: Female
Age at diagnosis: 24
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My hands are obviously one of my worst affected areas and it's just the constant jarring of changing gears and that, that's really what it is. At least with the automatic, my hands are both on the steering wheel because they're not strong, my hands, also I need two hands always on the steering wheel to get the maximum grip.  

That was really all it was for the automatic makes it and I drive to, a long distance when I usually work and it will be up to forty to eighty miles so constant jarring was, did, did no good for my joints at all. Again that was another thing I've really hung on, I hung on to ordinary manual car as long as I could because I did not want an automatic but it got to a point where my husband persuaded me I had to have it so'

Are there any other things when you're choosing a car that you try and look for?

When I, when I'm looking 

To choose a..?

Yep, I have to go around the car to make sure I can undo the handles, the boot. I spend ages kinda looking at can I, because sometimes the, sometimes handles are, are in a way where I can't turn my hand to actually, they, they're just a little bit clipping and I, I can't bend my fingers that well so I can't undo the boot so the handles have to be a particular way in a boot.  The key, an important thing, I had a lovely gentleman, I, he was recommended to me by the occupational therapist, a local man, who came round one day and it, he obviously does it in his own time, to find out if there's he can make which will help things for you, and I can't turn the car keys.  

So he made this little wooden contraption for me which I loop over my car key and gives me leverage to turn the key, which is probably my most precious item because I couldn't undo a car. I couldn't start the car without it and all he did, he made it for me so I have to make sure I can do the keys and that this thing will fit will fit through my little contraption and that I can do the knobs and things and I'm comfortable that the seat positions are comfortable. So I do spend quite a lot of time when I'm selecting a car. 

So ideally when I, you know, I go out and think, 'oh I really like this car' and I get there and I can't, I can't cope with the, the handles are ridiculous. I can't open the doors. I can't open the boot. I can't reach the boot door when it's open. You know, some of these three, they go right up high and I can't reach them because I can't stretch out my arms out fully to bring it down, so it takes a long while for me to choose a car.  

Power steering, an automatic transmission, central locking and electric windows made driving much easier. However, some people said that they were loath to get power steering or an automatic because they didn't want to admit that something was wrong.

One woman had her car especially adapted so that she could drive, but eventually had to give it up, because she found it hard to get in and out of the car, and because steering became too difficult.

 

Adaptations made to a car enabled her to drive although after her arms became too painful she had...

Adaptations made to a car enabled her to drive although after her arms became too painful she had...

Age at interview: 51
Sex: Female
Age at diagnosis: 27
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Yes. The first car that I had, normal car, was automatic and it was, it was a Triumph. So the seat was fairly high which solved my problem seat-wise. So that was OK for several years.  

Then with the destruction of my arm joints, I found it difficult to steer. It was the steering that became difficult. Eventually I, I couldn't steer it well enough to be safe driving it, so I had to sell it. I went down to the TRRL [Transport and Road Research Laboratory], the motor place in, I can't remember where it is. 

But they test out cars and do all sorts of research and they were incredibly helpful. They, they tested my strength in my arms and they let me try out various cars with different steering and they recommended to buy another car and have the steering  brought down as light as is possible to have the steering on a car so that I could cope with it. There were a few, sort of minor changes, like altering the hand brake so that you didn't have to sort of pull on it, quite so hard to release it and altering the device that you have to pull in order to move the seat forward and back and putting a strap on the door so that I could reach it to close it once I got in. 

And a very wide mirror because my, I couldn't turn my head very well at all and that gave me good enough vision around to, to drive safely. So that was marvellous to begin with. The car was very easy to drive with the, with the steering being so light that was the, the advantage of having the car adapted.   

But with the increasing problems with my knees and arms, I found that even the steering became difficult. It was easy enough to turn the wheel, but the movement on my arms was very painful and I ended up having to sit very close to the wheel with my arm completely bent, my left arm complete bent, so that I could turn the wheel without pain and  that didn't seem a very good way to be driving. 

Also I could still at that stage get off an ordinary dining chair, and the car seat without assistance but when I had my knee operation, I lost that ability so I couldn't actually cope with getting in and out of the car, either. So I had to give up on that one, then.

Motor insurers need to know if disability is likely to affect driving. One man told his insurers that he sometimes had to wear wrist splints, but he said that this was not a problem.

Motability is an independent not-for-profit organisation, which can help people gain access to a car. Some people found this organisation useful (see 'Financial implications and financial support'). Others found the Blue badge scheme, which allows them to park in otherwise restricted roads, a 'Godsend'. Some people had difficulty applying for the badge whilst others found it another psychological barrier.

Last reviewed August 2016.

Last updated September 2010.

 

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