Life with CRPS: Lindsey Beier’s Story

Your 20s are said to be your formative years as an adult - whether that’s navigating relationships, finances, or careers. People typically don’t think of health as a change that could flip life on its head for you during this time, but that’s exactly what happened to Lindsey Beier.

As a child and teen, Lindsey was a dancer and part of a group in Ireland. Before her accident, she moved to the U.K. with her father and attended college in Oxford at 16 to study performing arts for 2 years. By the time she was 18, she was dancing in Los Angeles on a scholarship. At age 20, Lindsey moved around the London area but was struggling with her mental health. During this time, she was applying for auditions for acting and even had an agent. From then on, she managed to do a few small acting jobs but when she was 23 she had her accident, in 2017.

After moving into her new flat, back in 2017, Lindsey had an unfortunate fall when she tripped over a large plastic bag, whilst wearing slipper socks. She explains “at first it just felt like very bad leg pain, possibly as though I had even broken it”. Only later when she went to the hospital would she discover she did in fact have broken bones in her left leg. However, she began to experience other symptoms not typical of a fracture, such as burning pain and extreme sensitivity. Even when the broken bones had healed, these symptoms were still present. Eventually, she saw a specialist consultant and they explained everything, and Lindsey was diagnosed with Complex Regional Pain Syndrome (CRPS) in March 2017.

Lindsey explains during her early stages of CRPS she could not walk at all for the first 3 months and relied heavily on a wheelchair and assistance from her father. Lindsey says she remembers “at times when my father would lift me off the couch because I could not stand, my whole body would just start shaking due to the pain”. The hospital initially gave her crutches but she felt unsafe. When she did eventually get back on her feet she made use of an orthopaedic air boot, which she believes did help. However, gradually the pain started moving onto her knee, which caused her confusion as at that time Lindsey was not familiar with the concept of CRPS spreading. She also now experiences pain in her right leg too.

Like many others who live with CRPS, Lindsey experiences flare-ups. When this first occurred she felt lost and alone. So she turned to Facebook support groups to figure out what other techniques she could use to help herself based on other CRPS patients' experiences. She learned to never put ice on the affected area as this can cause a spread but unfortunately, this is something she had already done in the past in an attempt to try and ease the pain. However, she did find that a few people had tried compression stockings so she thought this may be something she could try. She now wears these compression stockings during flare-ups, she says “if I don’t, I can feel sharp pains around my knee”.

When Lindsey notices a pattern of more stress in her life, the pain quickly increases, so she tries her best to reduce it. She also finds using distraction techniques such as listening to music, she says she “loves a bit of Britney and Madonna”. Another distraction is in the form of working on projects. Despite these distraction techniques, Lindsey finds that no matter what she's doing she will get sharp pains.

Mental health has played a large role in Lindsey’s life. As a child, she grew up with depression and anxiety, after losing someone she loved. However, she managed to pull herself out of through her mental health issues as she got a bit older. However, when she had her injury, her mental health hit an all-time low as she was house-bound due to her CRPS - mentally she felt trapped. When she was housebound she watched the TV show 'Friends' a lot to keep her preoccupied, "it just used to clear the darkness in my brain". Lindsey recalls the first time she left the house and how it caused her immense anxiety.

Lindsey remembers how people were quite insensitive to her diagnosis of CRPS, they were initially more sympathetic to the fact that she had broken bones but then couldn't understand why she was still in agony following the 'healing' process. However, the two people who were actually most responsive to this life-altering diagnosis were her father and grandmother, "I adored my grandmother, she was always a fighter, and I admired her strength the most". 

Since her diagnosis of CRPS in 2017, Lindsey’s goal has been to raise awareness of this awful condition.

Since then she has been featured in 'Take a Break' magazine, handed out leaflets in her local area, and spoke to the public in an attempt to try and help patients, families, and carers dealing with CRPS.

Lindsey first came across Burning Nights CRPS Support in 2019 after doing a lot of Google searches, in an attempt to find support. Lindsey recounts, “The first phone call a couple of years ago I made to the charity, Victoria picked up the phone. She was so supportive and told me that I was not alone. That really helped me. I wanted to do the same for others, to let them know they are not alone. It is hard to live with CRPS. But with support, you can get through it. I'm so grateful for Victoria and for Burning Nights CRPS Support”.

Lindsey wants everyone to know that “everyone's journey with CRPS is different and no one should punish themselves because of something out of their control".

If you would like to share your time to support those affected by Complex Regional Pain Syndrome (CRPS) and can spare a minimum of 2 hours a week, we would love to hear from you! Please visit the Sign Up page to register your interest and let us know which opportunity you think would suit you best. During your time with us, you will have a contact who will be there for you if you have any issues or problems.

Also, to stay informed about our work and receive updates on any news, appeals, events, and campaigns relating to CRPS, you can sign up for our free newsletter.

Follow Lindsey on Instagram and Facebook at @lindseybeier . She is happy to receive any questions from the Burning Nights community on her experience.