By Liana Jacob
THIS WOMAN was diagnosed with a condition known as SUICIDE DISEASE after a simple sprained leg on a hike left her in so much pain that she BEGGED doctors to amputate it and felt ‘liberated’ once it was gone.
In September 2015, full-time mum and wife, Anita Carden (51), from Byron Bay, Australia, was hiking in Mt Cook, New Zealand, when she sprained her ankle. While the pain was insignificant initially, the next morning she woke up in extreme pain and her ankle turned black, blue and yellow and was very swollen.
Two days later, she flew back to Australia and went to see her GP who took X-rays and a doppler test which both came back negative. Over the next couple of weeks, her ankle worsened, so she went to a different GP who also turned her away with no diagnosis and said that it would get better in a few weeks with rest.
Following a few other dead-end appointments, desperate to find out what was wrong, Anita went to another GP who suggested that she had Complex Regional Pain Syndrome (CRPS), a poorly understood condition where a person experiences persistent severe and debilitating pain, also known as suicide disease.
She was officially diagnosed with the condition in June 2017, when she booked an appointment with a rheumatologist, as her previous doctor misdiagnosed her with rheumatoid arthritis. She was then sent to a pain clinic where she spent the next six months, but her condition had spread all the way above her knee.
After various unsuccessful surgeries such as a bisphosphonate infusion and a lumber sympathectomy, the pain became so severe, she fought doctors to get her leg amputated to alleviate her symptoms.
She now says that she felt free after becoming an amputee, despite having to learn to walk again.
“I was hiking at Mt Cook in New Zealand when I rolled my ankle. It was very insignificant and at the time didn’t bother me, but the next morning when I woke up my ankle was black and blue and yellow and swollen. I couldn’t bear weight on it,” Anita said.
“Two days later we flew home to Australia and I went to my GP who took X-rays and a Doppler test that both came back negative.
“Over the next couple of weeks, my ankle worsened instead of getting better and I saw a different GP. He offered no diagnosis either and said the same as the first, it will get better in a few weeks with rest.
“In desperation I went to a different GP who suggested CRPS but by that time I already had an appointment with a rheumatologist because my GP thought it was rheumatoid arthritis.
“At the appointment with the Rheumatologist, he diagnosed me with CRPS. By this time, it had been eighteen months since the initial injury.
“Immediately I was sent to a pain clinic where I spent the next six months but by this time it had spread to above my knee and was quickly getting worse.
“In December 2017 my GP found me a doctor in Adelaide who took me seriously and understood CRPS. In January 2018 I had a sympathectomy and a sciatic nerve block both of which were unsuccessful.
“A few months later I had a bisphosphonate infusion then a couple of months later I had a spinal cord stimulator implanted but was also unsuccessful.
“After these procedures failed, I had an above knee amputation in June 2018. I requested it and had to fight for it. Doctors don’t want to amputate a limb, so they let people who are at their wits end with this disease just suffer.
“I pushed and pushed and fought to get them to take my leg off, it was dead and bleeding all the time. The day a surgeon said he’d do it was the best day of my life.
“My pain is gone completely, and I have my life back. I’m learning to walk on a prosthesis, and I have my mobility back.”
She says that her new body means she has had to learn how to walk again which has been difficult, as she has a hydraulic leg rather than a bionic one.
Anita is now focusing on the future and becoming active again as she hopes to hike again. She wants to show other amputees that it is possible to get your life back after a life-changing surgery.
“I was in hospital for ten days and recovered quickly after that. I had my surgery in June 2018 and my first appointment with prosthetics was in August 2018,” she said.
“The process of learning to walk again is difficult. I don’t have a bionic leg, it’s only a hydraulic. A bionic has microprocessor in the knee that makes walking much easier.
“I’m hoping to be approved for a bionic this year but the process of learning to walk again is not easy but I’m putting the effort in so I’m now mobile again.
“Learning to walk again hasn’t been easy but it’s given me my freedom back. I’m looking forward to going to a bionic later this year which will make walking easier again.
“I wanted to share my story soon after because I felt so liberated after my leg was gone. My life had come to a standstill with CRPS, but amputation gave me my life back.
“I wanted to help others with the disease see that life after limb loss can be wonderful. The most difficult thing to overcome was dealing with doctors who wouldn’t listen to me when I requested amputation.
“My leg was so bad, I couldn’t live with it, but no one listened to me for some time. To be honest, after I lost my leg my life has been so much easier.
“The amputation has benefited my personal life more than I can explain. Not to have to carry a dead limb around is liberating and I have my freedom back.
“I feel great about myself; I’m not ashamed to be seen in public with my prosthetic and I’m not embarrassed to go out in shorts or swimmers. I want to help other amputees see that we don’t have to hide.
“My life has changed since the amputation, but I’d say for the better. There are things I’m much more aware of now that I was unaware of before losing my leg. I’ve broadened emotionally and have more empathy for others, I wouldn’t swap that for the world.
“I plan to get back to my active life that I had before CRPS. I love hiking and walking and being active, I love being busy with my family. I believe life after amputation can be all those things and more.
“My advice to someone in my position would be to never give up. Prosthetics these days are great, and amputation doesn’t mean that life is over.
“In fact, it can open doors that never would have been opened if limb loss hadn’t happened, it depends on the way someone looks at it, it depends on their attitude.