Original symptoms of rheumatoid arthritis and visiting a GP

Rheumatoid arthritis (RA) is a chronic inflammatory disease mainly affecting the joints, but it can affect other parts of the body too. The disease usually starts slowly, and symptoms may come and go over months or even years. However, severe symptoms can affect people quite suddenly. The sooner RA is diagnosed and treated the better.

RA can be hard to diagnose at first. GPs may suspect some form of arthritis but they often refer patients to a rheumatologist to make a specific diagnosis. This doesnt always happen. One woman consulted her GP about her painful swollen knee and he told her to go away and lose some weight.

Another woman developed a stiff neck. The next week her legs felt stiff. She consulted her GP, who told her to take some painkillers. Her condition got no better and eventually she was referred to a consultant who did blood tests and diagnosed RA (see Referral to the rheumatologist, tests and receiving the diagnosis).

RA often starts in just a few joints, such as the hands or feet. People may also notice that they feel a bit stiff in the morning, and they may experience flu like symptoms. One man set out for a run one morning and found his ankle swollen and painful, and later other joints hurt. He ached all over and felt absolutely washed out.

It began suddenly with a swollen ankle, pain in his knees and wrists, and aching all over as…

Age at interview 46

Gender Male

Age at diagnosis 38

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I was diagnosed with RA about eight years ago it first started pretty quickly it, I used to do a lot of running and a lot of cross country running and exercise and it came across so quickly I just woke up one Saturday morning, went out, tried to go out for a run and I felt really, really as if I had flu. I tried to run and my right ankle especially swelled up and it just didn’t feel right at all and I had to pack me run in, go home and I felt absolutely washed out, cos I said like, it’s like you’ve got flu you’re aching all over, me knees hurt, me wrists hurt and I felt really, really lousy and it just started from then. It went on for about six weeks me joints started swelling up and eventually I just had to go to the GP cos I was a bit confused, I didn’t really realise exactly what I had at all.

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Another person realised that something was wrong when her young nephew asked her to explain why she was walking down the stairs like a baby. She also noticed that she had pains in her feet and found she was waking in the morning with stiff hands.

Before RA was diagnosed she found it hard to walk down stairs as her feet hurt and she had stiff…

Age at interview 49

Gender Female

Age at diagnosis 36

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It was 1989. I can remember quite vividly my nephew was four in October, the seventh, he lives in [town]. And I went to, over to see him and bounced around and did everything that everybody does with four-year-olds and then in January, the following January, when I next went to see him I was coming downstairs ‘cos he got me up early in the morning and I was holding the banister with both hands going down sideways one step at a time and he said to me, “Why are you walking down stairs like a baby?” So that was when I realised that something was really bad soI have always, I’ve been trying to encourage him to be a doctor but he, he hasn’t taken that one up.

So in between the October and January I had flu. It was, it was actually one of the years when there was bad flu and I was off work for a, a week or so. And it was when I went back to work. I was feeling pains in my feet mostly’and I was still wearing quite thin shoes so I thought, ‘cos like a summery type shoe, so I thought I’d buy new shoes and that didn’t make any difference. And then I was waking up every morning with me hands stiff. So that made me think there was something wrong.

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In many people it began with minor symptoms. One woman said that at first she noticed that her fingers felt sore, as though she had chilblains. Another said the disease started with a pain in her small toe. The GP prescribed an antibiotic, thinking it might be an infection. Six months later she developed pain in other joints.

Another woman had pains in her wrist which slowly got worse, making it hard to write letters. She visited her GP on several occasions and was prescribed ibuprofen, but as symptoms worsened she found difficulty sleeping and getting up in the morning. A further visit to the GP led to a referral to a specialist and she was relieved to get a diagnosis.

After several visits to the GP with painful wrists and swollen joints she was referred to a…

Age at interview 53

Gender Female

Age at diagnosis 49

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Well it really all began about 5 years ago just as wed moved into this house. Wed been here a few months and I started getting pains in my wrist. Nothing much to start with but just slowly got worse really. I was having trouble writing letters, and then I would get sort of swellings in the joints, my wrist and I went to see my GP, the new GP, and I was just given Ibuprofen and sent, sent away and see how it goes and I think I probably visited him about 3 times and this just got worse and worse.

I couldn’t sleep at night time because I was getting uncomfortable I couldn’t get out of bed in a morning without difficulty, and then one particular morning my arm was so bad, I just cried and my husband said, ‘that’s it, going to get you into the shower, get you down to the doctor. So we went down to the surgery and they then said, ‘ Well well refer you to a specialist’ and so I think, within a matter of weeks I had an appointment to see the consultant at the local clinic, and had x-rays and all the rest of it, blood tests.

And when he actually diagnosed rheumatoid arthritis’I cried. But it wasn’t because I was sort of distraught at being told I had rheumatoid, it, it was because I was relieved really, to finally know what it was and to think well, now I know maybe they’ll be able to do something about it.

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A 37 year old woman recalled that when she was 27 she had developed a pain in her elbow. Her GP thought she had pulled a tendon. The next week she developed a pain on the ball of the foot. The GP thought she had pulled a muscle. Two weeks later the pain seemed to be spreading to other joints, and a different GP decided to send her to the hospital for blood tests.

One person noticed that something was wrong when her fingers locked as she was lifting a baby out of a cot. Another person became worried when he found it hard to get up from the floor. Someone else noticed a lump on his painful wrist.

Some people delayed going to see a GP. One woman, for example, had pains in her elbows, wrists, feet and hips for over two years, but didnt consult her doctor because she had nothing specific to show him. She finally consulted her GP when she could no longer play badminton.

She delayed going to the GP for advice because she had nothing specific to show.

Age at interview 47

Gender Female

Age at diagnosis 45

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I kept having lots of aches and pains at about, at least five years ago and I would be shopping and carrying bags and my elbows would, you know, I really couldn’t they the bags for long. And I used to go to bed saying, ‘Oh, my feet are really hurting,’ and I’d be spraying foot spray on them every night thinking, ‘What is wrong with my feet?’ And this went on for two years and, I imagine at least, and, and then I went on holiday and I played badminton one night and my wrist was really, really bad and I said, ‘Right I can’t play badminton. But the next day it was the other wrist.

So I thought, ‘Well it can’t be the badminton. And that’s when I went to the doctor’s. Which was about 2000, no, 2000. And she said straight away ‘Well, you know blood tests, I’ll send you to a rheumatologist,’ which I had guessed she’d say ‘cos I knew someone else who had rheumatoid arthritis. And that’s when they said I had it.

So, you put up with the pains in your feet for quite along time. Did you ‘?

Yeah, I just, I just thought it was too much walking or, I didn’t think anything when it was in my feet and yet when I think back now it must have been the start of it a long ago because they really did hurt. And I was buying that Scholl foot spray all the time and thinking, ‘Oh my feet are hurting. And, of course, when it started, when you’re in bed and, you know, your hips are hurting you think, ‘Mmm’, every way you lie something hurts it can’t be normal.

So were you, sort of, putting off going to the doctor or ‘?

Yes, ‘cos I don’t like to go unless you’ve got something, you know, physical to, to show, and in the end I thought, ‘I can’t wait any longer.

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Other people developed severe symptoms of RA quite suddenly and had to seek urgent help (see Referral to a rheumatologist). For example, one man developed an excruciating pain in his left arm and his right hand, so consulted his GP who was confused by his symptoms and suggested painkillers. By the end of the week all his joints had stiffened up and he could neither wash nor dress himself. He also sweated profusely and was severely sick.

The symptoms of RA developed quite suddenly, with excruciating pain in his left arm and right hand.

Age at interview 76

Gender Male

Age at diagnosis 74

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Well from day one, this complaint came with me overnight and the first sign of it I had was a terrific pain in my left arm and it was so excruciating I didn’t know how to, where to put it and it eventually subsided a bit and then the next day, it went from my arm, my left arm to my right hand and the pain was absolutely again excruciating.

No way could I get any relief from it at all and upon going to my doctor and explaining this, he was quite confused about it and the only thing that he could recommend at that particular time was to go home and take some paracetamol or analgesic. And this I did and I couldn’t wait to get home to take the tablets and it did subside;

And then as the week went on, it became more general and my joints stiffened up until the point was reached where I was just almost locked up solid and obviously I couldn’t do any of my normal washing, dressing functions. And then after about 3 days it seemed to subside, and the period was accompanied by profuse sweating and also sickness which was quite severe.

And then it appeared to, I was getting some relief and for possibly two days, it seemed that it was going to go away although there was residual aches and then it would return with renewed intensity such that it would lock me up again and again I had to rely on the services of, the support services of my wife to get dressed and washed and all other facilities, other act, functions as well which at this, came, went on for a period of five weeks and this on off, on off period;

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Another man developed a tremendous pain in his left ankle. He couldnt sleep, couldnt walk, and was in tears with pain. His wife called the GP, who gave him something to knock him out and a large dose of steroid.

He developed severe symptoms quite suddenly, with excruciating pain in one ankle.

Age at interview 55

Gender Male

Age at diagnosis 47

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If we go back to about 1996, I was then forty seven, I was at work, on nights and I had been playing squash, we have a squash court at work, a couple of nights before and I’d limped off the squash court and I thought I’d just pulled a muscle in my leg, but my left leg felt very strange, and as I say a couple of nights later, about six oclock in the morning, I got this tremendous pain in my left ankle, I can only describe it as like, someone had sawn off my foot and I was treading on broken glass, and I could hardly barely move.

Now unfortunately at that time we were in a transition period of jobs, my job title went from Service Availability Manager to Shift Manager, and they’d asked me to look after the night shifts for about three months, so I’d been on nights for about three months, and there was only one other manager on duty at that time of night, and I was just about to say to him, ‘I’m going to have go home, I feel terrible’, when he came up to me and said ‘I’m going to have to go home I feel really dreadful, [chuckles] so I couldn’t leave the place with no managers there, so let him go, and I struggled on until the end of the shift.

When I finally got myself upstairs, I sat on the end of the bed and the pain was that bad that the tears were streaming down my face, I was so tired, I couldn’t sleep the pain wouldn’t let me sleep my wife was doing a course at the time and I sat there really until about half past twelve when she came back and she found me crawling along the landing trying to get to the toilet. And she took one look at me and called the GP. I tried to get some sleep but I couldn’t and eventually the GP came round about quarter to five and I don’t know what they injected me with, they gave me something to knock me out basically and quite a large dose of steroids as well and that was the beginning.

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One woman was shocked at the speed in which her symptoms developed. She had severe pains in her wrists and knees when she woke up in the morning, and couldnt understand why she was almost back to normal by the evening.

The GP diagnosed some people with related conditions. One man was diagnosed with polymyalgia rheumatica and was treated for two years with steroids. He reduced the dosage but the symptoms persisted so the GP referred him to a specialist. He regretted not going to the GP sooner.

Thought his symptoms were rheumatism but did not visit a GP for 2 months which in hindsight was…

Age at interview 70

Gender Male

Age at diagnosis 70

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How long did you sort of leave it before you went to see your GP?

Oh, that’s a difficult one. I would say a couple of months, I would say, until it got really bad and I felt, ‘I’ve got to see somebody’ you know. It was bad.

Did you have any idea what it might be?

Not a clue at that stage. I knew it would be some sort of rheumatism of some sort. It must be because it was affecting all the joints but, but at that, that particular time I was worried. Because if you don’t know what a thing is and you’re getting all these pains, and you can’t move with them, and I was trying to work as well which was extremely difficult, you know, being on my feet all the time and sort of carrying things, you know, you, it’s, you know, it affects the whole, whole of the arm really.

The only thing I could say about that in my experience is that, why did I have to endure the pain for so long, why didn’t I go to the doctor earlier? You know, if I’d had sort of, gone to him earlier I wouldn’t have had to maybe put up with so much, you know. I left it a long time before I went really, I thought’

It was a couple of months before you went to your GP even?

Yeah, I should have gone to see him before and I wouldn’t have had to put up with so much. But you don’t know those things. And I’m not one for rushing off to the doctor, you know. Yeah, so that’s the only thing, I would like to have gone a bit earlier perhaps.

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Children sometimes develop RA, and this is known as Juvenile Chronic Arthritis. A woman of 38 described how her Juvenile Chronic Arthritis began. She complained of pain, developed a rash and had a high fever.

Aged two she had painful joints, developed a rash and high fever. Juvenile Chronic Arthritis was…

Age at interview 40

Gender Female

Age at diagnosis 2

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Now where do I start? I developed, I’ve actually got Stills disease, or Juvenile Chronic Arthritis, as it is better known as, which I developed in 1964 at the age of 2′ years. I don’t really remember much about it obviously because I was a child, all I can remember is that my Mum said that in the evenings, as I used to get undressed I would be crying because I couldn’t, I found it very painful and she didn’t know why, and then the next day I would wake up and I would be fine. She kept taking me to the doctors, but obviously in the daytime, and of course I would be running around because I would be fine.

One particular evening I think she said that I was not, seemed to be crying an awful lot, I had developed a bit of a rash and she decided to call the doctor out into the evening, quite late at night. The doctor came out, said there was obviously something wrong with this child and I was admitted to a local hospital where I live, to find out what the problem was.

I was actually in my local hospital for four weeks, they didn’t really know what, they didn’t know what was wrong with me and I had raging high temperatures they did think I had rheumatic fever but they weren’t sure.

So after four weeks they then transferred me to a hospital that was about twenty miles away, which was a children’s hospital and after three weeks they diagnosed that I had Stills Disease or Juvenile Chronic Arthritis.

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What is rheumatoid arthritis?

Introduced by Professor David Blake, Royal National Hospital for Rheumatic Diseases and updated by Dr Catherine Swales, Nuffield Orthopaedic Centre Arthritis simply means inflammation in...