A MUM has revealed how her daughter’s crippling “suicide disease” has left her begging to die.
Amelia Martin, 23, from Canterbury, Kent, first started suffering from Complex Regional Pain Syndrome (CRPS) symptoms in September 2017 when she was 17.
She began feeling pins and needles in her foot but the pain quickly became an agonising burn that left her feet feeling like they were on fire, she said.
Her mum Natalie Taylor said: “I remember that day so vividly the day that I felt like my heart had been ripped into a thousand pieces.
“Millie loved going to her nanas who lived opposite her school and every day she would go there to catch up with her before I collected her.
“I remember my mum ringing me telling me I needed to collect Millie urgently as she was screaming and in such distress.
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“When I got to my mum's Millie told me her two big toes were burning, I reasoned that it was probably her school shoes rubbing as they were new.
“Never in my wildest dreams did I imagine what was to come.
“When your child is screaming in pain in pain, begging you to cut her feet off and telling you she wants to die, it is the most heart wrenching thing and something that a parent should never ever hear — but unfortunately that’s our truth.”
CRPS is poorly understood and causes patients to suffer “persistent severe and debilitating pain”, according to the NHS.
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Around 16,000 Brits are thought to have the condition, which is usually triggered by an injury — but the resulting pain is much more intense and long-lasting than normal.
It has been dubbed the “suicide disease” because it can leave patients in so much distress they say they would rather die than continue living with the pain.
Usually, the pain only affects one limb and the skin of the affected body part can become so sensitive a slight touch, bump or change in temperature causes searing agony.
In Amelia’s case, the condition affects her whole body, Natalie said.
After she first suffered the pain in her foot, her mother took her to their local hospital but her condition deteriorated rapidly.
Natalie said: “Millie said her body felt like it was on fire. She couldn’t bear for me to touch her and was screaming in pain.
What are the symptoms of Complex Regional Pain Syndrome (CRPS)?
The pain of CRPS is usually triggered by an injury.
But the pain is a lot more severe and long-lasting than would normally be expected.
The pain may feel like a mix of burning, stabbing or stinging. There may also be tingling and numbness.
In addition to chronic pain, CRPS can also cause a range of other symptoms.
These can include:
- strange sensations in the affected limb – it may feel as if it does not belong to the rest of your body, or it may feel bigger or smaller than the opposite unaffected limb
- alternating changes to your skin – sometimes your skin in the affected limb may be hot, red and dry, whereas other times it may be cold, blue and sweaty – changes to skin colour may be harder to see on brown and black skin
- hair and nail changes – your hair and nails in the affected limb may grow unusually slowly or quickly and your nails may become brittle or grooved
- joint stiffness and swelling in the affected limb (oedema)
- tremors and muscle spasms (dystonia)
- difficulty moving the affected body part
- difficulty sleeping (insomnia)
- small patches of fragile bones (osteoporosis) in the affected limb – although there's no evidence this could lead to fractures
Source: The NHS
“I took her to A&E but they didn’t know what was wrong with her. The pain caused her to keep passing out and at one stage we thought we had lost her as she stopped breathing.
“Within 24 hours her body had started to shut down and she lost the use of all four limbs, her taste and her touch.”
Amelia spent five more weeks at hospital before she was eventually diagnosed with CRPS at Evelina London Children's Hospital in London, where she spent the next two years, Natalie said.
She was also later diagnosed with small fibre neuropathy — a nerve disorder that is marked by severe pain attacks.
Despite being given a catalogue of different pain medications over the years, including heavy opioids, her condition has continued to worsen and has left her housebound.
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It has taken a heavy toll on her mental health as well, causing depression and post-traumatic stress disorder, Natalie said.
Now, the family is raising money for treatment in the US on a GoFundMe page.
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