Droplets That Feel Like Razor Blades: This Mother Suffers From ‘Suicide Disease’ Which Makes The Lightest Touch Incredibly Painful

By Rebecca Drew

 

THIS MUM-of-two is battling an agonising condition called ‘suicide disease’ after knee surgery left her so sensitive to touch that even the splashes from a shower feels like someone has taken a razor to her leg and “sliced it right open” and she is now raising awareness for a possible cure.

 

When CEO for a non-profit foundation, Kristin Fast (42) from Phoenix, Arizona, USA, fell and ruptured her ACL, tore her MCL and meniscus in February 2018, she underwent surgery weeks later to correct her injuries with surgeons advising her to take it easy for the 10 days that followed.

 

Less than a week after surgery, Kristin’s leg had not got any easier, and had become purple and sensitive to touch, which resorted in her sleeping with a ‘tent’ around her leg to stop anything touching it. Over the next month, her pain did not improve, and her leg stayed purple and was swollen from thigh to ankle which left her wheelchair bound and struggling to take part in activities.

 

After tests, Kristin was diagnosed with Complex Regional Pain Syndrome (CRPS) in April that year. CRPS is a poorly-understood condition where sufferers experience crippling pain, which can feel like they are being burned, stung or stabbed.

 

Kristin likens her constant pain to a burning hot ice-cold sensation, that feels like leaving your hand in freezing cold water for five minutes. Her nervous system is so damaged that the softest of touches causes her excruciating pain. Kristin also suffers with a bone-crushing ache, muscle ache, cramps and atrophy in her quadriceps, hamstring and calf.

 

Before her diagnosis, Kristin was an outgoing and active woman but now she is wheelchair bound. Despite this, she has decided to use her suffering and experience to help others through her non-profit foundation, ComplexTruths, Inc. and through her Go Fund Me page which hopes to raise awareness for a cure of the condition.

 

“Within six days of the surgery, my leg was way worse than expected, not better. By that time, my leg had turned purple and became very sensitive to touch. I began sleeping with a “tent” over it because I had become so sensitive to anything touching my leg. We immediately notified the doctor that something was seriously wrong,” she said.

 

“From the thigh down my leg was purple and swollen 24/7, I tried to partake in normal family activities, travels and events, but the pain was just so brutal that I couldn’t get out the wheelchair or enjoy much of anything.  I was in horrible pain.

 

“CRPS is the most painful condition known to human existence because there is no escape from the pain.  It can happen to anyone, at any time, after any injury.

 

“Imagine cutting off your finger.  Imagine the pain.  Now imagine that happening to you every second, every minute of every day.

 

“The pain is a burning hot, ice cold pain that is similar to leaving your hand in freezing cold water for five minutes.  The nervous system is so damaged that any touch, the soft touch of my puppy’s tail, or the wisps of water from the shower for instance, can cause pain so excruciating that I scream as if someone has taken a razor to my leg and sliced it right open.

 

“My skin’s surface temperature is also ice cold, noticeably colder than the other limbs as the vasomotor functions are off kilter and my blood is not circulating correctly. It has dropped my body’s temperature to 96 degrees and at times, I have to be careful I don’t go into hypothermia.

 

“When my leg is not elevated, it turns red, then purple, then black, as the blood cannot find its way back up to my heart. Other symptoms include burning pain, bone crushing ache, muscle ache, cramps, and atrophy in my quadriceps, hamstring and calf.

 

“Physically, my whole world has changed.  I haven’t driven in eight months. I used to love to drive.

 

“I live life from a wheelchair and life is very different three-feet from the ground.  People look at me and treat me different.  It’s much harder to find a job, people don’t know what to “do” with me.  I’ve lost more friends than I ever expected would turn their backs on me.”

 

CRPS is a chronic pain condition that is a very complex, multi-system disease of the autonomic nervous system and central nervous system. It is considered very uncommon, but generally happens after an acute injury to a limb. In other non-surgical cases, CRPS can occur simply by blunt force trauma.

 

According to the NHS, it is difficult to estimate how common it is as many people go undiagnosed or misdiagnosed.

 

Kristin has had four spinal blocks to block the pain to the brain which has not worked for her. In May, she flew to Italy for a trial drug, Neridronate Acid, which can take up to a year to work but she has seen some improvement in her condition already. As well as this she is on medication to control her pain which enables her to interact with society.

 

With her foundation, Kristin hopes to be an inspiration for others and also show her two daughters that they can achieve anything.

 

“They help manage the pain so that I can function.  I do not ever feel “high” and they help me interact with society, work and be a mother, wife, daughter and friend. They bring my everyday pain levels down from a twelve to a seven to eight where I can compartmentalise the pain as long as I stay busy,” she added.

 

“I have suffered chronic pain horribly and ended up getting the most painful disease known to humankind, but it will not keep me down. This cross is mine to bear so that I can reach others, tell my stories, and relate to them and I can help them out of their pain, so that they can rise up, like I did, and fight.

 

“I will say only that I am fighting as hard as I can so that my children see me fight so that they learn that no matter what diversity they come up against, they never let it keep them down. Life is hard.

 

“There is nothing easy about it, but you have to fight back. Every day is a fight, but it is worth fighting for. I started out at first ready to throw in the towel – contemplating the best way to remove myself from this life in the most peaceful way possible, and now, I am fighting back with the force of a hurricane.

 

“By starting up this website and foundation, I not only hold myself accountable every day to thousands of people but to myself.”

 

The hardest thing for Kristin to accept was how much her life had changed but now through her foundation she is helping save lives everyday – she explained the purpose of her Go Fund Me page.

 

“I am doing something that matters, I am saving lives every day. I am helping people get diagnosed, I am stopping people from committing suicide, I am looking for a cure, I am making a difference and teaching my daughters that one person can make a huge impact in the world if they try,” she said.

 

“I can help other people see that through their pain, they can live a purposeful life and make their life matter too. The pain isn’t so bad when you are doing good things in spite of it.

 

“Even though this disease hurts, and I am in pain every day, if I had to rewind time, as much as it hurts to say, I would go through this all over again because if I had to sacrifice myself to know that I could make that difference and save another life, I would.

 

“I have a purpose now and my life matters.

 

“We need the Go Fund Me now to help us, help the thousands of others around the world that are suffering every day from CRPS.

 

“Ultimately, we want to fund research and help others get the treatment they may not be able to pay for themselves. This Go Fund Me account is going to help me get better and it’s going to help others get better.”

 

For more information see www.gofundme.com/kfastcrpsfund