Gender and gout
Gout is often thought of as being a man's condition. It affects over four times more men than women and can happen in men at...
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.
Ben recalled yelling out in pain because he was in agony. The pain was unlike anything he had felt before.
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‘).
Ray said gout was incredibly painful. It felt like someone stabbing a sharp knife into his big toe.
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.
Kate says the pain of gout is worse than childbirth.
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.
Tony X found the pain was unpredictable. It would suddenly become very intense without warning. He could even feel pain if something was near his foot but not actually touching it.
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.
Gerald believes that when someone looks well and has no obvious injuries, other people do not think that they could still have severe pain.
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’.
Harry felt that the pain was like having his toes sawn off without anaesthetic. He warned people to keep away from him to avoid more pain.
‘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‘).
John X felt like he would rather tear his fingernails out than have the pain of gout. He feared touching the affected joint and could not even bear a sheet over it.
Sam’s pain felt similar to the pain of childbirth and having an epidural. She felt like she would try anything to get rid of it.
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‘).
Until he took daily medication, John Y used to go for months without any symptoms then would suddenly get an attack. He noticed they became more frequent over time.
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.
Simon felt a bit like he had mild flu during his attacks. He could also feel that gout was affecting other joints even though they were not painful.
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.
Tony Y started getting attacks every few months in his big toe joints. He then had an attack in his knee.
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‘).
Ian’s first few attacks were in his big toe joint. He then had attacks in his knees, ankle, wrist and elbow.
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.
Ray occasionally gets a sudden pain in his foot and wonders if it is gout.
Ben sometimes gets a stiff feeling in his toe and wonders if it is gout.
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‘).
Gout: mobility and footwear
Mobility and getting about Most people found it difficult to stand or walk when they had attacks in their feet, ankles or knees because of...