Pain and ongoing symptoms from gout

Nearly everyone we spoke to felt that gout was intensely painful, although Peter and John Z both had aching joints rather than the extreme pain described by other people. People were often shocked at how bad the pain was. They described it as ‘unbearable’, ‘tear jerking’, ‘horrendous’, ‘excruciating’, ‘debilitating’, ‘indescribable’, ‘extreme’ and ‘unremitting’. Even people who believed that they had a high pain threshold found it hard to cope with. Jeff would not wish the pain on his worst enemy.
Most people felt that the pain was ‘distinctive’ and not like any other pain that they’d had before. Many said that it was the worst pain they had ever had - even compared to heart attacks and broken bones or fractures. They believed it was a type of pain that they would never forget. Such high levels of pain were particularly worrying for people when they had their first attack. They did not know what was wrong and thought the pain could be caused by a life-threatening illness. Ivor believed that his first attack felt more painful than attacks he had later because he did not know what was causing it. (See ‘First symptoms and attacks of gout’).
Some people found it hard to describe how bad the pain was so compared it to other pain. Several described it as feeling like a sharp knife stabbing into their joint. John Y felt that attacks were actually like ‘being attacked’ by someone and Eddie described the pain as like having ‘an electric drill drilling into your knee’. John Z felt like he had an itch inside his ankle. Runibunar felt like his foot was going to explode, while Kate and Sam both compared the pain to childbirth. Some described the pain as a ‘throbbing’, ‘burning’, ‘sharp’, ‘piercing’, or ‘stiff’ sensation. Others felt that it was like ‘shards of glass’ or ‘needles’ in their joints. 
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Some people felt that it was only possible for people with gout to understand the pain. They also felt that other people were not interested in knowing about it. A few people felt that there should be greater awareness of gout as an extremely painful condition. Tony X believed that other people would find it hard to understand how any slight contact could cause extreme pain. 
Many people believed that their GP understood how painful the condition was. However, some felt that their doctor did not acknowledge or understand the significance and level of pain they were experiencing. Others were worried that their GP would not believe how intense and limiting the pain was. Gerald and others thought that part of the problem was that the level of pain they had was not always matched by obvious visible symptoms. 
Joints were often so painful and sensitive that people could not stand anything touching them – even a bed sheet. During attacks, people were worried and frightened about accidentally knocking the affected joint because they knew it would cause even more pain. Some people did not want family or friends helping or coming close to them in case they touched or bumped their painful joint. People also wanted to be left alone because of the way the pain made them feel. Eddie felt ‘downhearted’ and ‘lethargic’. One person was in such constant pain that he felt like he ‘could not carry on’ and wanted to ‘give it all up’.
‘Getting rid of the pain’ was the most important issue for many people when they were first diagnosed. People’s attacks lasted between a few days and a few weeks. Most felt that the pain limited their activities and affected their sleep. As well as affecting what they could do physically, the pain could distract them from being able to concentrate on other things. Ivor, though, believed that he built up a tolerance to the pain so it did not impact his work. Many people said that they would ‘try anything’ to relieve the pain during an attack. At times, several people had such bad pain that they felt like cutting the painful joint off. Gerald asked his doctor to amputate his leg because the pain in his knee was so bad. (For more see ‘Treating the pain and inflammation of gout attacks’ and ‘Practical tips for gout’).
Some people only had attacks once every few years. Others had attacks every few months or more often. People who were taking daily preventative medication often had no attacks once the medication had lowered their uric acid levels enough. Ian found attacks very inconvenient and was happy that allopurinol had stopped them. (For more see ‘Preventing attacks and long-term problems’).
The pain of attacks was usually restricted to a very specific area around the joint. Most people did not feel unwell apart from this pain, but a few people had fluey or achy symptoms. 
After their first attack, some people had attacks in other joints. A few had attacks in more than one joint at a time. Several had not realised that gout could affect joints other than the big toe until they got an attack in a different part of their body. A few people were not too concerned about having gout when they’d only had one attack, but it became a bigger issue when they began to get more frequent attacks. 
People who’d had attacks in different joints felt that the pain was particularly bad when it affected their knees, hands or wrists. Some people’s attacks started with ‘twinges’ and then got more painful. Others did not notice anything until they were suddenly in pain. Many people learnt to recognise attacks starting before the pain was at its worst. (For more see ‘Practical tips for gout’).
Some people who no longer had attacks, still had occasional ‘twinges’ or ‘niggles’ that made them wonder if an attack was starting. Sam was not sure if all of her ongoing symptoms were gout, or whether some of them could be caused by another form of arthritis.
People found that walking or putting pressure on their joints was particularly painful. It was often too painful to wear shoes or socks if they had attacks in their feet. Some people found that the pain eased after moving around. Carole found that she could mentally prepare herself for doing things that would hurt, but the pain was worse if it was unexpected, like tripping over. Some people felt that there was nothing they could do to ease the pain or get comfortable. Others found that only strong painkillers or anti-inflammatories would help with the pain. Harry had learnt by experience how much pain he could stand so that he could avoid taking more tablets than he wanted to. (For more see ‘Practical tips for gout’ and ‘Treating the pain and inflammation of gout attacks’).

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Last reviewed December 2016


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