A young woman has told how she needs to sleep next to a FREEZER every night due to a rare incurable disease which leaves her in constant pain 24 hours a day.
Paige Howitt, 23, constantly suffers from excruciating agony which is “worse than childbirth” and feels like she is being “burned alive”.
She was diagnosed with Complex Regional Pain Syndrome (CRPS) in 2015 – which is said to cause the most pain a human can physically endure.
The trade analyst is now tortured by a severe burning pain in her left knee, muscle spasms, swelling and insomnia.
The chronic pain she feels is rated on the McGill pain index chart as being worse than childbirth, amputation of a limb, breaking a bone and cancer.
She even has to sleep next to a freezer, with ice packs and a pregnancy pillow wrapped round her leg – getting an average of just four hours sleep a night.
Paige is now looking to raise £25,000 for her own hyperbaric oxygen chamber after spending six years in 24/7 agony and “hitting rock bottom”.
She is now faced with the prospect of having the leg amputated if she can’t raise the money to buy the chamber to give her some respite.
Paige, of Great Barr, Birmingham, said: “I can’t even begin to describe how hard it’s been.
“The pain is always there, every minute of the day. It has effectively ruined my social life.
“If people want to go out and get drinks, or go to the cinema, it’s almost impossible for me because the knee always has to be in certain positions to stop it being more painful.
“I can’t sit on the sofa without it being propped up, and when I go to bed I have to spend hours getting comfortable.
“I have to use a pregnancy pillow to make sure that the knee is straight, wrap ice-packs round it and have a freezer nearby.
“That effectively numbs the knee but, as you can imagine, it’s not especially cosy. For the most part I tend to get around four hours, but I’ve had a lot of sleepless nights.
“Even the feeling of the duvet against my knee makes things uncomfortable, and placing any sort of material up against it causes pain, because it’s so sensitive.
“I have a freezer at work as well, to stop the swelling and reduce the pain.
“At any one time, my knee is either blue from the cold or red from the burning sensation, and nothing in between.
“Ultimately that doesn’t help too much, because it affects the circulation and means that, when the ice pack isn’t on, it hurts even more. But it’s the only way I can cope with the pain.
“Apparently, according to the McGill Pain Scale, my pain is described as being ‘above childbirth’, which I obviously can’t comment on because I haven’t had any children.
“But what’s really difficult is just the fact that the pain is never not there, and in that respect I would much rather have the pain of pregnancy.
“I suffer from depression and anxiety due to it, every day I want to give up knowing I’m out of options.
“I’ve hit rock bottom.”
Paige’s torment started in 2011 she had an operation to realign her left kneecap at the Queen Elizabeth Hospital in Birmingham.
However, due to complications, she was later diagnosed with CRPS Type Two at The Royal National Hospital for Rheumatic Disease in Bath.
Paige has since been told that doctors are unable to cure the condition, and she had to drop out of studying pediatric nursing at Birmingham City University in 2015 due to the pain.
Paige, who lives with mechanic boyfriend Tom Collins, 24, added:”At around 13 or 14 years old, I started to develop pain in my knees.
“It turned out that they had gone out of alignment, and on the left side in particular it was too high and out to the side.
“I had the operation to realign it at Queen Elizabeth Hospital in 2013, after initially trying out some physio.
“At first everything seemed to be ok, but there was this burning pain in the knee. It was this constant burning sensation, which was agonising.
“For the first few days I thought it was part and parcel of the operation, but after a week or so I started to worry.
“At the follow-up session the surgeon was concerned, and CRPS was mentioned.
“It wasn’t formally diagnosed until I saw the pain specialist in Bath in 2015, but I knew from researching online that that was probably what I had.
“It turned out that all of my nerves around my knee had been damaged as a result of the operation.
“My dream was to be a pediatric nurse, but I had to drop out of university after only six months because the CRPS.
“In that respect, it’s the mental side that is more damaging than the physical one.
“I often feel isolated and depressed, like I can’t do the things that other people would deem ‘normal’.”
Paige initially tried physiotherapy and a programme of desensitisation to help her adapt to the pain.
She then recently started going to the Wolverhampton MS Therapy Centre for specialist treatment in a hyperbaric oxygen chamber.
The chamber effectively enhances the body’s natural healing process by inhaling 100 per cent oxygen for around an hour.
She was initially “amazed” by the effects of the treatment, and, after going for 20 consecutive days, was told to come back two or three times a week.
However, due to financial pressures and the stress of travelling, she had to give up going to the centre – and is looking to raise cash for her own chamber.
Paige said: “The first time I went, the effects were just amazing. It was the best that I have felt since I was a child.
“The pressure on my knee decreases and, following the therapy, the swelling, burning, temperature change and pain all started to reduce, which was amazing.
“It felt like it had numbed the whole body, relieving the pain and giving me a bit of respite.
“Of course the pain and discomfort was still there, but not as severely. I could move around more easily, and it helped me to build up my confidence.
“However, after spending nearly £1,000 on treatment plus work commitments and having difficulties travelling, I had to stop.
“The problem is that I just can’t handle the pain, and there is no known cure or way to fix it.
“I effectively have two opinions – to either raise money for my own machine, or to have my leg amputated.
“CRPS has changed so much of my life and has took away my dreams.
“I need some sort of hope and relief and having a HBOT chamber at home can give me that.”
Donations to help Paige can be made at: https://www.justgiving.com/crowdfunding/crps-paige-howitt
* Complex Regional Pain Syndrome is a little understood condition in which a person experiences persistent severe and debilitating pain.
It usually develops after an injury, often a minor one. The pain is usually confined to one limb, but it can sometimes spread to other parts of the body.
Medical experts think it is caused by damage to the nervous system, which causes nerves to misfire in some way, triggering pain.
It can be treated by physiotherapy, to prevent muscle wasting, certain types of painkillers and counselling to help people cope with the chronic pain.
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