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.
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.
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.
She has experienced severe flares which start quickly and are very disabling.
She has experienced severe flares which start quickly and are very disabling.
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.
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.
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.
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.
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...
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)].
Last reviewed August 2016.
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