Rheumatoid Arthritis

Ongoing symptoms of rheumatoid arthritis - pain, fatigue, depression, weight change

Rheumatoid arthritis is a chronic illness and people described different symptoms which they experienced whilst living with the disease, some of which were eased by the medication prescribed but others that persisted. (See 'Ongoing - flares, stiffness and sleep disturbance'.)

Joint instability, inflammation and deterioration are all causes of pain and most people we interviewed had these in some form. Some people also have rheumatoid nodules which are bumps/lumps which can appear overnight on tendons and joints. Most commonly nodules on elbows and fingers were mentioned. These were not necessarily painful, sometimes disappeared on their own or required aspiration, a steroid injection or surgery for removal.

People described pain in many ways' extraordinary, incredible, absolute agony, excruciating, pumping, intolerable, burning, tingling, nervy, like toothache without the teeth, a raging fever, feet shouting at me etc. Many felt that the hardest thing about RA was having to 'struggle against the pain', 'deal with the pain' or 'manage the pain' on a daily basis. Ongoing, 'grinding' pain was debilitating, people couldn't tackle problems, it sapped their energy and de-motivated them.

One woman talked about the pain she had had and steeling herself against the pain to go through the pain barrier. People also said they had become used to the pain, learnt to cope with it and that their pain tolerance levels had been raised. Sometimes this was bad as they didn't immediately notice more severe joint damage.

Describes some of the pain she has experienced with her RA and how sometimes you need to go...

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Age at interview: 70

Sex: Female

Age at diagnosis: 58

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Oh, the pains have got much, much better. I mean, it's, they're still sort of grumbling away in the background I would call it, not very, actually, I mean I wasn't able to sleep at night very easily without waking up and feeling in considerable pain. especially in my knees and one, the shoulder that's already damaged from osteo-arthritis has got rheumatoid arthritis in it as well and that was complaining like mad and my wrists were aching and an elbow was aching and feet sort of shouting at me from time to time.

But that's all gone quiescent at the moment which is wonderful. So it, it's quite a relief that I had about 3 or 4 months of quite a lot of inconveniencing pain.

I think really if your, you know if you've got something like this you can't let the boundaries come in on you all the time, I think that's what I would say to other people. You've got to push against them, you, it's you know, other people will do things for you, I have a very helpful husband who likes to do a lot of things for me, but and he does I do let him do a lot of things for me but other things, I really must do or otherwise one is too confined. And there's no point in that.

You don't want to let it get the better of you?

No and sometimes it's a matter of going through the pain barrier, I think, and it's never quite as bad on the other side, as it seems when you sort of, am I going to do this and sort of steel myself and go there and it does on the whole work. But it can seem you know, you could be quite daunted by it sometimes, not always but sometimes I think.

Pain also increased fatigue and people described tiredness and lack of energy as significant symptoms of RA. People had to rest more, either in the daytime or by going to bed earlier, or sometimes for much of the weekend if they worked during the week (see 'Work'). This reduced their time to do other things particularly their social life. Pacing activity helped but often people felt they hadn't got the will power to do things when they were feeling generally tired and unwell.

Describes feeling unwell, general tiredness and a resulting lack of motivation. He wished he had...

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Age at interview: 55

Sex: Male

Age at diagnosis: 47

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Yes I wished I'd have known about the systemic side of the illness, which I've touched on briefly before, this flu like symptoms that you have all the time, none of the tablets I've ever taken have got rid of that, and you get worn out so quickly and it's not to do with walking too much or putting pressure on a joint that you should, shouldn't be.

It's a general feeling of un-wellness, it's like, it's like that feeling you get just before you're about to break out in full blown flu, it's a general malaise, there's a general, you can't get up and, there's no get up and go, there's, you're depressed, you feel slightly sick, and it's difficult to put in, into words, but it's there all the time.

And then on top of that you then put the pain of the rheumatoid arthritis which can go up and down or go altogether as with an operation or a remission but you're still left with this background, like background noise of sort of flu like symptoms which make you feel generally unwell all, all the time, and you have to learn to live with that.

And I wish somebody had told me at the beginning, because I spent a long time thinking that was depression or something else, or because they were knocking down my immune system with methotrexate that I was now catching colds more easily or getting, actually got the flu or something like that, and I eventually found out when I pointed it out to my consultant one, one time, that in fact this was a known feature of rheumatoid arthritis and was generally well known.

Somedays I lay in bed till twelve o'clock, get up and get dressed and then I'll go and lie back on the bed again until she comes in. So on some days I don't actually do anything with my spare time, it's all I can do to just lie there really. I spend a lot of time on my computer, I spend a lot of time still with my guitars and play, I can still play those fine I haven't got arthritis in the fingers at all, which is great, but I must admit there are a lot of days where I just don't feel like doing anything whatsoever. Now whether this is like just recharging my batteries to get back ready for work again, that's how it feels to me, it feels like I'm working I'm getting totally knackered, I'm coming home and having three days off, recharging and going back to work again.

Some of those people taking anti-TNF alpha medication said they were now less tired and had more energy (see 'Biologic treatments').

Her energy level has increased since taking anti-TNF alpha medication.

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Her energy level has increased since taking anti-TNF alpha medication.

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Age at interview: 21

Sex: Female

Age at diagnosis: 12

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And feeling as good as I do on it I, it doesn't take the pain away, it, go away, it, it, it doesn't do that. The, the pain has not gone but it does give you more energy. It's, it's very strange. It's, I suppose I feel like I have as much energy as other people would because I think when, when you have arthritis, if you have it for a certain amount of time, energy levels go up and down naturally anyway but you do sort of, you get used to not having much energy.

Not as much I suppose I would say, not, it's not much but you get used to not being able to walk as far, you get used to it. Then on this new drug I suddenly had all this energy and I was sort of jumping around and I had too much of it at first. And, and now I've got used to the level and, and now I can tell when I'm ready for a dose because my level has gone down a bit. And just going up the stairs at night, just feels, ohhh, you know. It just feels like a little bit too much. And so when I'm on the drug it's, it's not about taking away the pain but it gives you energy and when it gives you energy you have energy to exercise. And exercise will take away the pain, it'll make you stronger, make your muscles stronger.

One effect of a chronic physical illness like RA is depression and being worn out by the ongoing cycle of pain, frustration, fatigue, fear and anger. People said that it was only in more recent years that health professionals told them that this was a recognised part of the disease and provided information. Many we interviewed described it as times when they felt very low, they felt down and had periods of sadness. The decrease in mobility, painful joints and disability meant people could no longer do what they had previously been able to or wished to do. Often not being able to do something simple like taking the top off a jar or pouring the kettle triggered a spell of depression.

Early disabling symptoms of RA, not knowing what the problem was and the fear of just getting worse often depressed people. For others waiting for surgery, or spending long periods in the house recuperating from surgery led to depression. People said they had days when they woke up feeling down and they needed to find something else to focus on, e.g. work, going out and meeting friends, talking to others etc. People mentioned coping by having a support network of friends, having something to look forward to, a positive outlook, keeping your chin up, putting on a brave face and staying calm by burning incense sticks.

Has taken an anti-depressant when she was in a severe flare and whilst waiting for several...

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Age at interview: 53

Sex: Female

Age at diagnosis: 20

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Yes. I'm taking them [anti-depressant tablets] now and I took them back when it, you know, I was, before I went to the, the hospital I was on them and then when I started feeling better I came off but then sort of last year I'd got to this point where, because I've always thought I'm going to fight this I'm not going to let it get to me and, and then it is, you know, I was waiting for operations for this and waiting for operations for that and it just all got a bit.

You know, every time I went to the hospital you've got something else, you know, they told me I'd got osteoporosis and oh and you've got to have an operation for this and, and it just all got too much. So my GP put them, me back on the anti-depressants and I've been fine ever since then. But I hate really thinking that I've got to take anti-depressants, but then I think again, well if it's going to help why worry about it. But you know, once you start getting depressed it's very hard to get pull you back, pull yourself back out of it, but no they help.

It can't be nice waiting for all these different things?

No, it's just seemed to be one thing after another you know. 'Oh know, what else is are you going to tell me?' sort of thing, you know.

You see, to me that is almost like saying you're not coping with it, having to be, take, but I suppose that's silly really to think like that but 'cos everybody likes to think they can cope, don't they? But then, you know, if you're going to feel better by taking them, you know, its silly feeling like that isn't it? No, I certainly feel better since I've been taking them. But perhaps when everything is done I shall be able to come off them.

People also had times when they just cried with the frustration of not being able to do things and feeling sorry for themselves but many tried to keep these times short and use them to relieve tension. Seeing others carry on their normal lives when their 'world had been turned upside down' was difficult to cope with and people thought 'Why me?'

The initial symptoms and disability she experienced before getting a diagnosis made her feel...

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Age at interview: 31

Sex: Female

Age at diagnosis: 30

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Yeah, just, the whole, I had the whole very, you know, I, you, you try to stay, you try to stay so positive but it's really hard because you, you, you've got it up here. You, your body just won't do it. So I did. And I, I'm not a, I, I'm one of those people that I, I, you know, I, I just go out, when I get down I do tend to get really down, you know. But it doesn't last long. But I just, that, that 6-8 weeks was a completely black area. You know, everything about me changed from what I was doing to how I was looking to how I was thinking. You know, I, instead of thinking, 'Oh I'm just going to hit, just gonna go and put the kettle on' kind of thing, I'd have to think, 'Can I go and put the kettle on?' So yeah it did make me de, depressed, very. Very depressed.

And did you know, sort of talk about it with your doctor or get any '

No, I, no '

'medication?

It's just, no, no. Just support but, you know, those closest to me were like, you know, 'You, you, you can do it'. And I do remember seeing that girl that I was on about, she, she said to me that she'd, see that made me feel better as well because she said exactly the same thing. You know, she said she remembers sitting there, she, she remembers sit, sat there and she cried. And I remember doing exactly the same thing. Just sat, just sitting here and just thinking, you know, 'Oh God, that's, that's it. I, I've got to the end of my road as it were. I can't go on like this. I don't want to go on like this.' So, just, oh it was horr, it was horrible. I really didn't want to do anything. I, and I'd never get as bad as, you know, take my own life as it were, but that's how you feel.

That's, that's the stage I was getting to. 'Cos I, I didn't know, I didn't know if I would get better. I didn't know if I'd be able to do the, you know, do the things I normally did. So that's, that doesn't help. And because there's no-one there, because it's, it might, it might be common but it's not something you really talk about. You don't, you know, the, the, the woman or the man three doors up, you know, 'He's got rheumatoid arthritis, I'll just go and have a word with him', you know. You don't do that. So there was no-one, you know, except for my husband and, and, you know, my mum and that. You know, my step-dad, there's, there was no-one I could really, you know, really say to them, and I, I could have gone to my doctor's but I, 'cos I tried, I tried to fight, I tried to fight against it.

A few people had been prescribed a muscle relaxant or antidepressant to help them cope. One man helped his depression by taking one for a short time.

Being in pain and generally feeling unwell with the RA made him feel depressed but taking a short...

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Age at interview: 76

Sex: Male

Age at diagnosis: 74

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And he, he's been good even since and I talked about depression. There was one occasion when I was so, in so much pain, I, my wife came home and I was crying on, over the, I'd been doing the washing-up and you know you have to, I'm left-handed, you have to hold a plate, this arm's absolutely giving me excruciating pain and I was really, I was really at a low and I just burst out crying. She, she called the GP and he was good enough to put in an appearance about an hour later and he gave me some panadol, one of the uplifting drugs, you know.

And I took those for, one every other day for about a week and that did the trick, you know it got me up a bit. And all I was looking for then as I kept telling people, was 'cos I was on this sulfasalazine and the hydroxychloroquine, and then all I kept telling people, all I wanted a lift from this awful feeling, total body feeling, quite apart from the aches, which were one, which were a major thing, it was all the other attendant feeling in the body and mind and all I wanted was a little lift and once I got that I was starting to get away, you know, and these tablets you know which well I suppose, it's, I, they're like drugs, what's the name for them, it begins with, begins with a P, you would, you must know them but I don't, my wife would know them immediately.

But anyway they're, as opposed to the downers they're the uppers and you know, they, they were very beneficial, taken at that point. I wouldn't want to keep on with those because they are, they probably could be addictive, I don't know.

But I elect to stay off those things as much as I possibly can and, but they did the trick for the time so I suggest to anyone that gets into that parlous state that those drugs, anything like that can be, if it's taken in moderation in the right way, can be very beneficial to your situation, at least I found it so anyway.

Others had more serious depression which resulted in longer periods of staying in the house and not wanting to see or talk to people. Two women said they had considered ending their lives because they thought they were not going to get any better and had a lot of pain and were unable to do things.

Felt very depressed with the disability of RA and considered suicide. Her doctors helped by...

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Age at interview: 52

Sex: Female

Age at diagnosis: 47

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And that was the way I was. And then I come back here to home and I just sit and I'd cry. So then the depression set in. So I was coping with the arthritis and trying to cope with this depression at the same time. And I wasn't sort of getting anywhere and I, at, at one stage it was so bad I thought, 'Well if this is what's going to happen to me, and if nothing else is going to happen to me, what's the use of going on?'. I did seriously think about ending it all at one stage, that's how depressed it got me.

It sort of all hit home to me then, you know that I did have this and I was terribly worried about it. I really let it get hold of me actually you know it took a big hold of me you know it did it sort of it was trying to swallow me up and I thought 'Oh God, if I don't do something, I'm just going to die'. And I knew I was going to die, I knew, if I didn't die I do it myself, I was that determined, I thought 'No this is not for me, this is not, this is not the life I want for me', you know and for others around me. That's what I kept thinking, I kept thinking God you know, I'm putting a burden on people I'm not going to be a burden to anybody you know and then gradually as I got on I sort of come to terms with it more.

And were you treated at all for your depression?

Yeah yeah I was I was treated for me depression with sleeping tablets mostly. My doctor was very good though at that time. She even actually got a lady doctor that used to work at the surgery and she knew a bit about Rheumatology and she knew how I was and she'd arranged for this lady to come and see me, and she, you know she looked at me and she said 'Oh you really need to go on second line drugs', and we went through it with her, and she went through everything with me. And she said to me 'You will, you won't, you won't feel better next week', she said 'it takes twelve weeks, twelve weeks' she said at least to feel any relief from this certain drug that they were putting me on.

Four people had seen a counsellor, psychologist or psychiatrist, with mixed experiences.

Weight change can also occur with RA. Weight loss was due to loss of appetite, stress, sickness as a result of the side effects of medication and physically finding it difficult to eat. Two people wanted to lose weight to reduce pressure on joints. Weight gain, as an effect of long-term steroid use or because it was difficult to exercise was a problem for a few people.

Last reviewed August 2016.