Building a second life – Jenn’s CRPS story

Jenn, 54, was being treated for breast cancer. After having a mastectomy, she found herself in huge amounts of pain.

I woke up from breast cancer surgery and was never the same again. What I was feeling made no sense, I felt like I was on fire, stepping on broken glass with barbed wire around my legs. My hands felt like they had thousands of little needles in them. I was given so much medication to help the pain.

After struggling with her symptoms for five years, Jenn felt relieved to finally get a diagnosis of CRPS. But that relief turned to despondency when she realised how expensive treatment was in the USA.

My symptoms made sense and I didn't sound nuts – I found a home with people who knew what I was experiencing and validated me. But I was so sad as I realised treatment was financially out of reach, and I started to give up on trying to live longer, seeing no real point to it.

Struggling to go on

What followed next was a very dark time for Jenn. She was so heavily medicated to try and cope with the pain that she was confined to her bed for two years. Disorientated and struggling, she felt trapped, “I was stuck in bed for over two years, and lost my house, my marriage, my career – everything. I was in agony every day, and had no patience left for the world, and others couldn't have patience for me. I was lost in a drug-induced hell as I had to take so much medication just to allow myself to breathe. I called my bedroom my cell – all I had was my computer. I lost myself for far too many years under those drugs that did nothing to make my life worth living.

The turning point

Jenn decided to try and fund different medication – that, and making other positive changes including overhauling her diet, saved her life. 
“I wanted to sign my DNR [do not resuscitate order] and give up, and I almost did. But at the appointment when I was going to sign, I decided to give it one more shot and sell my belongings to raise the money to fund ketamine infusions. Those infusions saved my life. They got me out of my bed confinement and gave me a reason to keep living.” 
“I changed my diet – anti-inflammatory or Mediterranean diets can help, as you don’t eat foods that increase inflammation, which is the enemy of every CRPS patient; our bodies are on fire.” 
“And having a great therapist helped me. Getting in water has helped me regain movement too. I take an arthritis class in a heated pool twice a week. It’s good for me both physically and mentally to get out the house and be around people like me.” 
Jenn also repaired her relationships, surrounding herself with supportive people, “I call this my second life. Now I have quality friends around me, and we can hold space for each other.” 
But it hasn’t been easy and Jenn still finds some days more challenging than others – as many do with CRPS, or any chronic pain condition. 
“It’s beyond draining. Some days I struggle to even bathe. It takes a tremendous amount of physical and physiological work to be able to participate in life.”
 

Helping others with CRPS

Jenn has come such a long way since she was first diagnosed, and now tirelessly works to raise awareness of CRPS and lobbies for better access to medical care. “I advocate across the country and help other people gain access to infusions. I work to raise awareness so that people can lead a life worth living.” 
And her advice for those newly diagnosed with CRPS? 
“I know it feels dark at the moment, but don’t get lost in that. You matter, and you have every right to a life worth living. There are a lot of groups and people out there that will help you find your way to treatments that give you the best life. Live for this moment and be willing to go outside the box. You are worth it.”
 

Share your story

We know that CRPS can present so differently from one person to the next, so it's hugely helpful to hear about others' personal experiences. If you would like to share yours as Jenn has, visit our Share your CRPS Story page and complete the online form.
Happy to be interviewed for more details about your experience? Remember to tick that box so one of our team can get in touch.
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