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.

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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.

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.

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.

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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.

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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.

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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