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 couldnt 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 didnt immediately notice more severe joint damage.
Describes some of the pain she has experienced with her RA and how sometimes you need to go…
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 hadnt 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…
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.
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…
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…
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…
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…
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.