A 27-year-old woman is planning to have her leg amputated after suffering years of agony and misery since she was bitten by an insect in Wales in 2011.
Lisa Davis, from Bromsgrove, Worcestershire, was bitten by a bug while on a seaside holiday in Saundersfoot in July 2011.
Originally thinking the redness on her leg was sunburn, Ms Davis has since had regular infections and swelling, and developed an incurable chronic pain condition.
She can no longer continue her job as a youth worker because of agonising leg ulcers and the condition has left her blind in one eye.
Despite often seeing doctors and having antibiotics, nothing has helped Ms Davis’s leg and now she says having it cut off is her last resort for a normal life.
‘I had no idea something so small could turn my life upside down,’ she said. ‘I can’t work, I’m blind in my left eye, I barely leave the house and now I’m facing an amputation. It’s an absolute nightmare.’
She has since become a trustee for a charity which helps people like her who are suffering from complex regional pain syndrome (CRPS).
Lisa Davis (pictured centre, with her friends) now uses a wheelchair to get around when she’s out because her leg causes her so much pain
Ms Davis remembers the day when her problems began as being ‘completely normal.’
She said: ‘We were on the beach in Saundersfoot in Wales and, as I went into the sea, I felt something bite my leg.
‘It was just some sort of insect. I didn’t even see what it was. I just flicked it off and thought nothing more of it.
‘It wasn’t until the following day, when my leg had swollen up, that I thought it might be something more serious.’
Thinking the swelling was a reaction to the bite, Ms Davis went to see a pharmacist, who gave her some antihistamine cream to reduce the swelling.
But the following day, her leg was discoloured, swollen and so painful she could not put weight on it.
At A&E doctors told her the swelling was sunburn
Panicked, she went to A&E at Tenby Cottage Hospital where doctors told her it was a reaction to sunburn and recommended she took painkillers and rested.
With just a few days left of her holiday, which she had gone on with one friend and her two children, Ms Davis tried to enjoy herself.
But she was in so much pain she went back to A&E, this time at the Alexandra Hospital in Redditch, Worcestershire, as soon as she got home.
Ms Davis was bitten by an insect when she was in the sea in Wales in 2011
The bite caused her to develop complex regional pain syndrome (CRPS) and her leg is now intensely painful and constantly has ulcers which don’t heal
‘My leg was turning purple, which was quite scary. By then, I was thinking it was much more than sunburn,’ she said.
For the next 18 months, Ms Davis, who is single, was referred between different departments at the hospital as doctors tried to find the cause of her pain.
‘The pain was so severe even a breeze caused pain’
‘It was so severe, I couldn’t even face anyone or anything touching it – clothing, bedding or even a breeze caused pain,’ she said.
‘I was diagnosed with lymphoedema – a condition causing localised fluid retention and tissue swelling – but when I looked it up, none of my symptoms quite fitted.
‘When I saw a lymphoedema nurse, she confirmed my suspicions, saying if it was indeed the cause, I wouldn’t be in that much pain.
‘So, I was put back into the system again and felt like I was going round and round in circles.’
Finally, in January 2013, Ms Davis was referred to a specialist pain management clinic at the Royal United Hospitals in Bath, Somerset.
Ms Davis, pictured with her mother, finished her degree in youth work and managed to work for six months, but had to quit when the pain became too bad
Ms Davis says she now barely leaves the house because her leg is so swollen, painful and leaks fluid
Ms Davis’s leg often develops ulcers which do not heal, and she says normal medications don’t work because of the CRPS, or because she has had antibiotics so many times
She said: ‘As soon as the pain management doctor saw my leg, she instantly diagnosed CRPS. That wasn’t something I had ever heard of before.
A poorly understood condition which cannot be cured
‘The doctor told me it was a rare chronic pain condition which couldn’t be cured.
‘I was relieved to have a diagnosis but devastated that there wasn’t much they could do. I was stuck in limbo and struggled to process it.’
Complex regional pain syndrome is a poorly understood condition which causes regular and debilitating pain.
It is usually caused by an injury but continues long after the injury has healed.
Ms Davis’s leg has to be bandaged regularly because the ulcers become infected and leak fluid
CRPS causes Ms Davis’s leg and foot to swell up far beyond its normal size, making it difficult for her to walk
Doctors say Ms Davis’s only option to be free of the constant infections in her leg may be to have it cut off
The pain is usually confined to one limb, but it can sometimes spread to other parts of the body.
As well as pain, it may also cause swelling, stiffness or changes in colour. Skin can become so sensitive even a slight touch can cause serious pain.
Treatment generally relies on controlling symptoms with painkillers, therapy, and avoiding triggers.
Finished university but had to quit working after six months
Despite suffering severe pain, Ms Davis was determined to finish her degree in youth work, as she was only in her second year when she was bitten.
After graduating in 2013 she started her first job as a youth worker but, just six months in, her condition became so bad she had to give up work altogether.
Ms Davis said: ‘I loved my job and managed to finish my degree and continue to work for six months, but then it became more difficult. I was heartbroken to give it up.’
In November 2013, she developed an ulcer on her leg and went to her GP.
Aged just 27, Ms Davis will have a psychiatric assessment later this summer to check whether she is ready to have her leg amputated
Ms Davis acknowledges amputation is drastic but says it may be her last chance to get back some quality of life
‘I had a black dot on the back of my leg to start with, but it grew and I went to my GP who said pretty instantly that it was an ulcer and they would dress it,’ she recalled.
‘They put bandaging around my leg, but every time they changed it, the ulcer was just getting bigger and bigger.
Conventional treatments aren’t working – I haven’t been free of leg ulcers for four years
‘Sadly, conventional treatments weren’t working because of my CRPS.
‘The ulcers have never cleared up. They will improve slightly and then get much worse again, but I haven’t been free of them for the last four years.’
Since developing ulcers, Ms Davis’s health has deteriorated and she is now barely able to leave the house.
She uses a wheelchair to get around because her leg condition makes it so difficult to walk.
She said: ‘The ulcers become infected and every time I have an infection, the pain gets worse, my leg swells up more and I feel awful, because my body is trying to fight the infection.
‘I have had so many types of antibiotics, they aren’t effective any more.’
‘I can’t really tolerate any dressings on them, so my leg is constantly dripping with fluid. When I go out, I’m worried that people are looking at it.
‘I have to take a towel everywhere I go and sleep in a chair, because it drips over my bed. Cleaning it up is difficult because even touching the skin is really hard.’
Doctors say amputation is her only option
Now doctors say that her only option is to have her right leg amputated above the knee to stop the ulcers, even though it will not cure her CRPS.
She explained: ‘The CRPS is up to my hip, but it should stop the ulcers and give me some quality of life back.
‘I am having a psychiatric assessment in July to ensure that I’m mentally able to cope with it, then I will hopefully have surgery to amputate my leg above the knee.
‘I know it’s drastic, but I need to try to control some of this.’
Condition has led to blindness
Ms Davis’s devastating condition has now even affected her sight.
She continued: ‘I went for an eye test back in January, because I was getting blurred and double vision in my left eye.
‘Nothing was detected then, but I went back to my GP, who referred me to a specialist.
‘It has now transpired that, because of the CRPS, I have had a major bleed behind my eye and completely lost the vision in it.
‘The CRPS doesn’t just affect my limb, it affects all different parts of my body. Now there’s a possibility it will affect my other eye as well.’
Ms Davis has found help and support through a charity called Burning Nights, which supports suffers with CRPS, who she now works for as a trustee.
Ms Davis is now a trustee for the charity Burning Nights, which helps people like her who suffer from complex regional pain syndrome
‘Charity gave me such a boost and made me feel useful again’
She explained: ‘I came across Burning Nights while I was in hospital for four months.
‘My doctors hadn’t seen anyone else with ulcers like mine, so I wanted to search and see if I could find someone who had been in this position.
‘I found Burning Nights and read about the founder Victoria Abbot Fleming, who had been in a similar situation, so I approached her.
‘She gave me such a boost, because she had so much information to share.
‘I work with the charity as a trustee now, which has made me feel useful again.
It’s completely flexible, too, which is great, because I struggle to sleep.
‘Most people will never have experienced anything like this level of pain, so my contact with Victoria and the charity has also been a massive help, mentally.’
For more information about Burning Nights and CRPS, visit the website.