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“Living life on fire” – Life with CRPS

TRIGGER WARNING: This blog mentions suicide and suicidal ideation as potential symptoms. 
“Living life on fire” – Life with CRPS (Complex Regional Pain Syndrome)

As I write this blog, November 5th, when the country is planning fireworks celebrations, I am sitting here with my leg burning as if it had been set on fire.

What is CRPS?

This month for many, is a time of Guy Fawkes celebrations or preparing for Christmas. For myself and others, this month is CRPS awareness month. CRPS stands for Complex Regional Pain Syndrome, classified as the most painful disease or condition to live with – according to the McGill pain scale.

This condition or disease affects every patient differently, and each patient responds to different treatments uniquely. CRPS can be brought on for various reasons; usually, it is a trauma commonly caused by surgery, injury or accident. The condition is incurable; some patients have fully recovered, but others continue living with the pain.  

What are the symptoms?

CRPS has a lot of symptoms, but the one symptom that affects the majority of us horrendously; is the feeling of burning. For each CRPS warrior, the burning pain can manifest in various ways, some describing it like hundreds of razors or others explaining it as an open flame.

I often feel like my leg is being set on fire, either from the outside or the inside. Sometimes affecting one area at a time and others affecting the entirety of my right leg. Privately, I can deal with the burning pain by wearing nothing on the affected areas and resting. However, I do not have that luxury in public, and wearing a dress, skirt, or trousers often adds to my pain – I have to grin and bear it.  

 The signs of CRPS Symptoms: 

  • The main sign of CRPS is PAIN that is not in proportion to the injury and has lasted for a longer period than it should have done.
  • Type of pain involved including aching, deep, burning or stabbing
  • Skin sensitivity – including extreme sensitivity to something that shouldn’t cause you pain such as cloth or water (ALLODYNIA)
  • Skin sensitivity – this is a heightened sensitivity that should cause pain (HYPERALGESIA)
  • Hair and nail changes
  • Joint swelling and stiffness
  • Abnormal skin colour changes
  • Tremors and muscles spasms
  • Abnormal skin temperature
  • Limited range of motion
  • Skin sweating
  • Difficulty moving your affected limb
  • Abnormal swelling

How does it occur?

Since October 2020, I have lived with CRPS when a biopsy caused nerve damage in my hip.

Alerting my doctors of the drastic changes in pain and symptoms that I was experiencing post-op, whether due to my age or gender, no one listened to me. No doctor would listen to me until September 2021, when my suspicions of CRPS were validated.

Continuously, I had been told that it was in my head, I didn’t have it, or due to no symptoms showing at that exact moment, I was living in a nightmare. Finally, I was told I was right and had to learn to live with this.

Living well with CRPS

Living with this condition strains my family and I at times; however, I am now in my final year at university and trying to live my best life with CRPS. I’m studying Acting at university, which shocks most people when they notice my crutches.

They do not expect the girl with the crutches to pursue a career as an actor and performer – yet here I am. Yes, I struggle with severe pain every day; however, Acting and performing are the passions that keep me going every day. It’s never easy; I’m not a fan of being told that I’m ‘brave’ or ‘impressive’ for living with CRPS, as I feel I have no choice but to continue and persevere.  

CRPS and mental health

In the medical community, CRPS has been nicknamed the ‘Suicide Disease’ due to the high level of depression and suicidal ideations of patients with CRPS.

There are countless men, women and children in the world who, like me, are battling this condition every day. Countless people have unfortunately felt no other option and ended their lives.

The best way to support someone living with this condition is to ask them what they need, ask if they need to vent or be distracted with something fun or silly. The most important thing is to ensure they know they are never alone, as living with CRPS can be incredibly isolating. And furthermore, never assume they won’t want to join in with plans or outings; everyone deserves the option to make a choice for themselves – everyone included, regardless of physical pain.

Supporting someone with CRPS

No one person can handle everything involved with living in chronic pain on their own; they need a strong support system – whether that’s family, friends or colleagues. 

Please honour the memories of those gone by talking more about CRPS – a lot of research needs to be done to help myself and many others. If you are interested in donating to a charity which helps those of us with this debilitating pain, please go to https://www.burningnightscrps.org or visit their Instagram: @burningnightscrps. 

Today’s Guest Blogger

Thank you to guest blogger, Saskia Newman, for this incredibly honest, inspiring and informative blog supporting Disability Awareness Month, and sharing how living with a disability can be so intrinsically linked with difficulties in mental health.

Help and Support

If you need support, please reach out. Don’t suffer alone.

We can help with non-crisis interventions. Dorset Mind offers group support that can also help with your wellbeing. The group offers peer support and helps to reduce stigma by normalising conversations about mental health. You can also check out further support for stress and mental health here. You’ll find links for 1-2-1 and groups mental health support we offer here. 

If you are struggling to cope with your mental health in general, please talk to your GP. If you’re in a crisis, treat it as an emergency. Call 999 immediately or The Samaritans, FREE on 116 123. NHS Dorset’s Helpline ‘Connection’ can be reached on 0800 652 0190. It’s also available 24/7.

 

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