A-Z

Rheumatoid Arthritis

Ongoing symptoms of rheumatoid arthritis - flares, stiffness & sleep disturbance

Rheumatoid arthritis is a chronic illness and people described different symptoms which they experienced whilst living with the disease. The medicines prescribed eased some symptoms but others persisted. (See 'Ongoing symptoms - pain, fatigue, depression and weight change').

The most commonly described symptom was a 'flare' of arthritis that was different for different people, or on different occasions. Three main types were described. Individual joints would 'flare' and become hot, burning, swollen and painful. Several people said their knees were like 'footballs' and 'balloons' and two women had to remove their rings quickly when they felt a flare coming on in their hands. These joint flares commonly started quickly and lasted hours or possibly a couple of days. A few people said they lasted for months.

 

He had flares every day.

He had flares every day.

Age at interview: 65
Sex: Male
Age at diagnosis: 54
SHOW TEXT VERSION
PRINT TRANSCRIPT
Well not OK until as I said this treatment has done it. When, when I was in a, having a lot of flare ups no, it wasn't, it would flare up at any time of the day and when that happened I was in too much pain I was, I've had to sleep on me settee at times where I haven't been able to get up from there and go up the stairs even with the stair lift. I couldn't even get there only on my hands and knees. It was just too painful. Much too painful. 

And you talk about flares. How would you describe a flare?

Well a flare, will actually occur within a matter of minutes. I'd feel slight pain, then really bad pain and it was that would last for hours and hours, days anyway before it would sort of come back down again then and then I'd have a bit of relief but I could say that it was on a daily basis that I was having these flare ups.

And were they in a particular joint or just..?

Wrists mostly. Wrists and my elbows and fingers and my toes. My toes especially.

The second type of flare described was an all over feeling of tiredness, painful achy joints and 'flu-like' symptoms. People often woke up with these symptoms, felt they couldn't move and had to rest and do very little. These would maybe last a day or several days before the symptoms subsided. For some people these flares happened irregularly, a few times a year, whereas other people said they occurred weekly.

 

Her flare ups often come on over night, are very painful, restrict mobility and she has to rest.

Her flare ups often come on over night, are very painful, restrict mobility and she has to rest.

Age at interview: 51
Sex: Female
Age at diagnosis: 27
SHOW TEXT VERSION
PRINT TRANSCRIPT
Yes. I don't understand why I have them now having been told for the past about twelve years that the condition has burnt itself out. I, I would have thought I wouldn't have flare ups but I asked the rheumatologist about that and he said that it is, you, you would still have this happening and that you feel as if you've got the flu but you haven't got the flu. There, I find them now very difficult with. I don't have them that often, perhaps twice a year, perhaps three times a year and it almost always seems to happen in the night, sometimes it'll, it'll begin to come on in the evening and I know that it's coming on. But usually it's in the middle of the night. And everything seems to seize up.

My muscles seem to become very painful and it's very difficult to move at all. My joints become painful, particularly my knees which is odd because most of my knees are now metal and plastic but the pain seems to concentrate around my knees. And  I tend to go a bit hot and cold and  it, it's very, very difficult to move. So I find if I need to get up to go to the bathroom  I can't actually pull myself upright in the bed so my husband has to help me upright and then although I normally can do, do those sort of things and, and get up off the bed without help it, I can't when I'm in a flare up. He has to pull me upright off the bed and  it becomes almost impossible to walk across the floor. 

It is, I can, I get there through, really through will power I think. It is, is, is very, very painful to move. But I manage to, to still walk about a bit when it's like that. And I just have to really sort of cope with it. When, when I asked the doctors for help with that the advice was to take the full amount of the anti-inflammatory drug, the, the Voltarol. But I don't find that it makes any difference when it, when it happens.

If I take extra of those it, it doesn't seem to have any difference whatsoever. I take extra painkillers as well and they don't seem to touch it. So it's just a ma, a case of kind of struggling through it and just staying in bed until is settles down again. It doesn't usually stay flared up for very long, usually for perhaps one night and one day and then I go back to normal. But I do find that difficult to cope with.

The worst type of flare involves pain, stiffness and swelling throughout the body and leaves people incapacitated for several months. These again could start quickly - within a few hours or days but were less frequent. One woman had three of these major flares in 12 years, whilst another said she got them maybe once a year. One young mother said that she has had two major flares' one before diagnosis and the other after her second baby was born when she has been off medication.

 

Describes the tiredness, pain and swelling of a long term flare.

Text only
Read below

Describes the tiredness, pain and swelling of a long term flare.

Age at interview: 29
Sex: Female
Age at diagnosis: 25
HIDE TEXT
PRINT TRANSCRIPT
Have you ever experienced what they call a flare?

Yes. Many a time. Yeah. 

Can you describe to me what it's like?

Very painful. Very swollen, very tired, you can't walk, you can't do nothing. I just find that I'm in bed most of the time. And it sort of comes on very, you know, fast. And unless they do something like maybe inject it, then it doesn't go.

So how, how quickly do you have to have an injection for it to, sort of stop it.

I would say almost straight away. When I came back from hospital I got out on the Friday and by Sunday I had a flare. And so the next week I was back in hospital again. I wasn't in there to stay but they didn't do nothing, they just increased my steroids. And then it started to get better again. And another thing I find when I have a flare I am on painkillers all the time and I have to take something at night to make me go to sleep.

And how long do they tend to last?

I'd say between three days and maybe a week, you can get it. I don't feel like I've ever come out of a flare to be quite honest, if the truth be known. I just feel only these last few months I've felt better but before I found I was in pain every day and when people say a flare I know what they mean but I just felt I was in a continuous flare because it never got any better. You might have, I, I never had a day where I thought 'I feel great' and you know I've got no pain or no swelling. I've never had that since, since I started having this, I never really had that. So I'd say it's only this year since being on this new stuff that I can honestly say that it's been better.

 

She has experienced severe flares which start quickly and are very disabling.

She has experienced severe flares which start quickly and are very disabling.

Age at interview: 42
Sex: Female
Age at diagnosis: 29
SHOW TEXT VERSION
PRINT TRANSCRIPT
So 11 years went by and, you know, I had three children during that time and you know lived a normal busy life of a mother and, and then again out of the blue 11 years later I had another flare up very, very similar to the first one in that it came with absolutely no warning  and was very severe. Again I got to the stage very, very quickly of being very incapacitated, hardly being able to dress myself, get up from chairs, just doing the everyday jobs was extremely difficult particularly early in the morning or later in the evening. And, and at that stage I had young children and, and it was extremely difficult to manage looking after even myself let alone the children. 

But eventually, again, it did settle down over some weeks and months and again things returned back to normal. I did stay on the medication at that stage. I was on a, a medication that was actually known to affect the condition itself rather than just the anti-inflammatory tablets that deal with the symptoms. 

So I just kept on that medication and things settled down and once they got better I did hope that there would be many more years before there was any problem again. And almost exactly a year later I had another flare up and I felt terribly disappointed at that stage because after the first episode I'd had a long time with no problems and then this had happened like just one year later, so again that was very disappointing.

It was a bad flare up again, but perhaps not as severe as the previous two. I did have to have time off work again and had all the difficulties with looking after the children and just coping day to day with everyday life just from dressing to, you know, trying to get in and out of a bath or  doing any sort of cooking was extremely difficult. Even just cutting bread with a bread knife would be very, very hard and the most simple things were very, very difficult.

Because I know if I get a flare up it happens very drastically very, very quickly whereas I'm not sure if that's always the case, I think in other people perhaps it takes longer and they get symptoms in particular parts of their body. I, I think one of the things I haven't said earlier was the thing that was so bad with it was it affected right through my body. I think sometimes people have arthritic problems and it's perhaps with particular parts of their body. With me it seemed to affect everything all at once very suddenly. Which was very, very frightening and very disabling.

 

Previously she had experienced joint flares but then a severe whole body flare 'crept' upon her...

Previously she had experienced joint flares but then a severe whole body flare 'crept' upon her...

Age at interview: 53
Sex: Female
Age at diagnosis: 20
SHOW TEXT VERSION
PRINT TRANSCRIPT
Well apparently, yes I have, well at the start it was in different sort of joints they would flare but apparently what I experienced several years ago was an actual flare which I'd never experienced before and didn't realise what it was. But that was a, a type of flare then. And it's horrible. Especially when you don't realise that that's what's happened to you and you think, you know, you've got something else terribly the matter with you as well as arthritis but luckily, you know, it wasn't. But no it's not pleasant.

And how long did that sort of last or was that until the drugs started?

Well it's, yeah it was actually sort of, as I've said, it was a sort of creeping thing. It started, I don't know really how it, it was just, that you couldn't do, it wasn't all in one go you got up and you thought 'Oh I can't do this', it was sort of each day you seemed to be able to do less sort of thing. You know, and as I said, you kept thinking 'Oh I shall be all right next week'. But that didn't happen until actually, all, I went in hospital and all the drugs kicked in  because when I had the, they found I had the ulcer I had to come off all the anti-inflammatories and it takes about 12 weeks for the methotrexate to start kicking into your body. So for some time I was on nothing. 

So actually, I'd had a pulse and felt better and then until the actual methotrexate kick, kicked in again I didn't feel so good again. But once that started to kick in it was, it was, you know, I felt better. And that's the time when I realised. oh, you know, realised how poorly you did feel until you felt better.

So oh it, you could live with it, well you have to live with it anyway but it wasn't too much of a problem for I'd say about fifteen years and then it gradually, I'd say crept because some people I've talking to have said, oh well it came, my wrist locked and my arm locked when I was mowing the lawn sort of thing and that was it. But my wasn't like that, it was a creeping thing, is how I can best describe it. And you just felt rotten, you know, it's as though you had the flu. You just didn't ache in one joint, you ached all over well that's how I felt. You know, you coughed, you're ribs hurt and things like that but which was strange. 

Many flares came on without warning, but overuse of or trauma to a particular joint could produce a joint flare. Other flare triggers included cold or hot weather, getting too cold, stressful situations and certain types of food (see 'Diet and food supplements').

Flares reduced general mobility and affected walking, eating and personal care. They also disturbed sleep.

People found relief from the symptoms of a flare in many different ways. Changing medication included increasing the dose of painkillers, anti-inflammatories or steroids and if the flare persisted people had steroid pulses/injections and joint injections (see 'Steroid tablets, injections and intravenous pulses'). Getting rest and sleep and using heat or cold were most often used. Some people said that hot baths, hot water bottles, electric blankets, heat pads and putting affected joints, e.g. hands, in hot water worked for them. However another group of people we interviewed felt that keeping joints cool if they were hot and swollen was the answer. People used ice, cold water, cold wet towels, cooling foot cream and wet wipes. One man described the relief he got for his hands. TENS machines, wrist splints, a supportive foam knee cushion and rubbing Tiger Balm on joints and fasting for 48 hours were also mentioned.

 

Finds that cold helps relieve the pain of hand and joint flares.

Finds that cold helps relieve the pain of hand and joint flares.

Age at interview: 76
Sex: Male
Age at diagnosis: 69
SHOW TEXT VERSION
PRINT TRANSCRIPT
In the very early stages, OK I have big hands anyway, but my hands in the middle of the night were like boxing gloves, and unlike a few people I know with arthritis, heat is no good to me at all. I have to have freezing things. So what we did, because it was in the middle of the night, we thought OK, the best thing to do is have something cold upstairs, so we got a metal bed head, a brass bed head. So in the early stages, if I felt uncomfortable with my hands, I would slide under the pillow, grab the bed head and that would give me relief. So I've learned to live with it.

You mentioned that you had a cold pad as well?

Yes, yes, yes, yes, its like a little sausage and you know, if I feel a bit stiff, well I just whip that around now [neck]. Yeah fine, or even on my wrists. Definitely I, I need to be cold to get the best effect. My hands are usually always cold. People say to me, you know, 'you've got very cold hands'. Well that's obviously, got to be due with blood circulation more than anything else, but the fact that they are cold means that I'm not affected with the arthritis as much. 

Early morning stiffness

To some extent early morning stiffness affected most of the people we interviewed; it varied from a few minutes to up to three hours. General stiffness, but particularly in hands and knees, made it difficult to walk and get dressed. Some people said having a hot bath helped them get going as long as they could get in and out of the bath. Taking paracetamol or an anti-inflammatory straight away also reduced the duration of early morning stiffness. Several people said they had to plan ahead and get up at least an hour earlier if they had to go out.

 

Early morning stiffness made it difficult to dress herself and her children.

Early morning stiffness made it difficult to dress herself and her children.

Age at interview: 42
Sex: Female
Age at diagnosis: 29
SHOW TEXT VERSION
PRINT TRANSCRIPT
Just, almost anything that involves moving your body. Sleeping is, is very difficult when it's very, very bad and you do just feel so weary and uncomfortable at night. That I think that was one of the worst things. Getting up in the morning. Just, just, moving your body to get out of bed and, and just, all the joints seemed like as if they were like totally rusted up and any movement was just so difficult. 

And, and like my hand just really was locked like this and, and just wouldn't open out. So, you know, I couldn't brush the children's hair and put their, I mean my husband could do quite a lot but he never seemed to manage to put the, the little hair bands in their, the little hair ties in their hair and I just really couldn't do that. So that, just, just little things like that might be difficult.

And just, getting myself dressed. Just a simple thing like that would be so difficult and, and I really couldn't put on a jumper like this or anything that had to go over my head. so I would normally somehow manage to get a T-shirt on with a lot of difficulty but, you know, it would have to be cardigan and even that would be very, very difficult. Put, and, and really just to bend down to put socks on would be tremendously hard. 

Or, just, just to get dressed and you felt really awful that, you know, you couldn't even dress yourself without a tremendous amount of difficulty. And, and to have, I, I did like to have a bath every day because I just felt the warmth of the water was quite soothing but it, it was just so difficult to get in the bath and then you think 'Am I going to be able to get out? How am I ever going to get out of this bath?' And it would just be tremendously difficult to do that.

Stiffness made it difficult to getup during the night to go to the toilet and people also reported getting stiff if they sat for too long resting during the day. Some people had continuing joint stiffness in certain joints in the day but for others stiffness and fatigue returned in the evening.

Painful or swollen joints

Painful or swollen joints also disturbed sleep. Some people found it hard to get off to sleep and others woke during the night and could not get back to sleep. Three people took tablets to help them sleep and others took painkillers although these wore off part way through the night. For two women the weight of the bedclothes was painful; another said her legs went into 'spasm', 'kicking and splaying about' involuntarily at night.

 

Initially the 'pumping' pain she felt made it difficult to sleep for days on end.

Initially the 'pumping' pain she felt made it difficult to sleep for days on end.

Age at interview: 57
Sex: Female
Age at diagnosis: 39
SHOW TEXT VERSION
PRINT TRANSCRIPT
But it was just, the sleeping, I just could not sleep. There was days that I went without sleeping because of the pain, it was like a pumping and it was only, the worse part was when I went to bed, that's when it really, really, pain, you know. It was just like someone pumping the pain into you. [Hmmm] That's the only way I can describe it. 

God, it was a good year, if not, yeah, longer, yeah it was. I wouldn't go anywhere. I wouldn't go on holiday with my husband. I just would not do nothing. I used to just, be silly and cry 'cos that time I didn't sleep, I couldn't, there was days and days when I couldn't sleep. You know, I just was walking, I was walking round the house, like a woman possessed, you know and the pain and I just if I could only get the morning. I used to think, 'God, I wish it was..', I just used to look out the window and think, 'Oh I wish it was morning. I wish it was morning', you know.

Did you go to the GP or did you, you know, sort of get any help, sleeping tablets or painkillers?

No I wouldn't take sleeping tablets and then they wanted to put me on another sort of, to calm me down but I wouldn't go on that neither, you know.

 

It was difficult to sleep with hot, swollen joints which hurt when she turned over and with the...

It was difficult to sleep with hot, swollen joints which hurt when she turned over and with the...

Age at interview: 31
Sex: Female
Age at diagnosis: 30
SHOW TEXT VERSION
PRINT TRANSCRIPT
I didn't want to got to go to bed 'cos that hurt. You know I didn't want to, to, you know, you know you want to keep moving but you can't keep moving. So I had all that, that you know, that was there. I I'm, night-time were the, were by far the worst 'cos everything's hot. Because you, your joints are swoll, you're swollen up, and you've swollen up and everything all my joints, all my joints were red hot so I'd get into bed and I, I was drinking lots of water as well. I don't know whether I got into my head that that would help, you know, whether that would help flush anything out of my body that was, you know, it, 'cos it, you know, 'cos it could have been a virus. And I'm thinking, 'If I drink a lot, that'll help.'

But I'd go to bed and I'd have to get up in the middle of the night to go to the loo. Well I just, ughh, it would, it would probably take me I'd say a good 20 minutes to get out of bed and go to the loo. Because I couldn't do it, I couldn't. I, I was sleeping under a sheet because I couldn't stand the duvet on me. The duvet was too heavy. An ordinary, ordinary duvet and it was too heavy.

We'd I like, I do like my sleep. And the cats tend to come in with us. Not through choice but they do tend to come in with us and I'd have, I'd have to, you know, nudge my, you know when you've got the, you have the duvet and normally I just flick it, chuck them off. You know, they'd go, they'd get the hint and go. But because I couldn't do it, because I, I had more power in my, my arms than I did my hands, I couldn't pull the duvet up to me. 

Arrgh, it's just, you know, with that, I couldn't do anything. I, I would get into bed and wherever the duvet was that's where it's, wherever the sheet went that's where it stayed. Because I didn't have the power and it was really hot. I, I could heat the bed up myself, no problems because I was, I was really, you know, 'cos everything was hot and swollen and so that had a plus side as well because I didn't need my electric blanket. But, no, no, oh, no.

That was, that was by far the worst because it, you, when you get into bed you do all that turning and because you're all, you're, you're conscious of every single move you make so I would wake up and have to turn myself over. You know, I'd, you just, you, you, you don't do anything, you didn't do, I didn't do anything automatically.

Finding the right medication

People we interviewed with well controlled RA made the point that frequency of flares, intensity of early morning stiffness, pain and swollen joints have all been greatly reduced because they had found a medication that was working for them e.g. disease modifying anti-rheumatic drug (DMARDs) or anti-TNF drugs. One person on B-cell therapy rituximab spoke of 'some improvement' in her ongoing symptoms.  
 
RA was described as a very unpredictable illness with good days and bad days, like a 'roller- coaster', with 'peaks and troughs' and periods of incapacity. People also recognised that RA is different for different individuals and no-one could tell them 'this is going to happen to you'.

Christine’s ongoing health problems derived not from RA but from what she thinks are the side effects of methotrexate. Her RA symptoms such as pain and swollen joints have been much improved since she was started on the anti-TNF drug; Cimzia but, Chistine is convinced that methrotrexate has caused her breathing problems [see also Disease modifying anti-rheumatic drugs (DMARDs)].

 

Christine is convinced that the drug methrotrexate is responsible for her current breathing...

Text only
Read below

Christine is convinced that the drug methrotrexate is responsible for her current breathing...

Age at interview: 73
Sex: Female
Age at diagnosis: 67
HIDE TEXT
PRINT TRANSCRIPT

And they think that your breathing problems were caused by….?
 
By the methotrexate
 
…by the methotrexate?
 
Well everyone I, every specialist I’ve seen, they say, “Have you taken methotrexate?” and I say, “Yes,” and they say, “Right.” So it sounds as though…That’s when my problems started.
 
And for how long do you remember?
 
I cannot remember.I can’t remember for the life of me. It wasn’t, I don’t think it was that long, I think it was possibly four or five months, something like that but it was enough to damage, you see apparently my lungs are as clear as a bell, there’s not a crackle, so it’s nothing to do with my actual lungs. But to me it feels as though it’s from here, up to the top of my throat, I don’t know.
 
You know, I mean, if it wasn’t for my breathlessness, I think I would be one of the fittest women in [town] but because of my breathlessness, it wears me right down. This morning I went down to see a friend, opposite side of the road, right down in the corner; I couldn’t walk, I had to take the car down, isn’t that ridiculous? Whereas I would have walked to town you know.
 
So physically you feel able that you can do…?
 
Physically I am alright but it’s getting to the stage that I mentally and that, and I am so….this morning for instance, I was upstairs and I wanted to clean the bathroom, well just put a cloth around and I couldn’t do it and [name] came up and find me crying on the toilet because I just couldn’t, frustration, I just couldn’t do it, it’s awful when you’ve got to rely on someone else to do everything for you. But as I said, it’s not the Cimzia’s fault, that is fine, it’s just this breathlessness.
 
So that, at the moment your main problem is the…
 
Is the breathing yeah
 
…the breathing?
 
Yeah, I mean I don’t know if we contacted whoever make Methotrexate if they’d have any bright ideas because I thought of that you know but I’ll try the nebuliser first. I keep saying, “Yes I’ll try this first, I’ll try that first,” but if the nebuliser doesn’t work I’m going to contact somebody and see if they can suggest something because I mean I’m not the, I can’t be the only one that Methotrexate has affected. 
 
No. But I mean if the Consultants are saying that it’s…?
 
Yeah. They, you know, they say, “Have you ever taken Methotrexate?” and you say, “Yes,” and it’s “Oh.” So it’s as though, it sounds as though they wouldn’t ask otherwise, they don’t ask about taking aspirin [laughs].
 
Did you have any sort of breathing problem before?
 
No, no nothing at all.
 
OK, so this
 
So then they say, “Are you smoke,” I say, “I don’t smoke.” “Do you drink?” No I don’t drink. If you don’t smoke, you don’t drink, yes I’m overweight but that’s because I’ve been pumped up with steroids, I’ll get that off again eventually when I’m off the steroids. They don’t, they’re lost.
 
<

Last reviewed August 2016.

 

donate
Previous Page
Next Page