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Surviving complex regional pain syndrome

Sarah Shaw describes her journey through diagnosis, treatment and living with a rare neurological condition

Sarah Shaw
Sarah Shaw independent occupational therapist

In 2016 my career as a head occupational therapist in the NHS came to a premature end due to a diagnosis of complex regional pain syndrome (CRPS). 

I underwent an arthroscopy for a torn knee ligament, and while the surgery was a success I was left in constant pain and unable to walk. I was seen by many health professionals including physios before CRPS was given as a diagnosis. This delay was

  • CRPS affects 1 in 3,800

frustrating as the best outcome for CRPS depends upon early intervention.

CRPS is a painful, debilitating, chronic and sometimes progressive neurological disorder that affects around one in 3,800 people. The illness usually develops after a sprain, fracture or after a surgical procedure.

Pain continues permanently after the original injury has healed. CRPS pain is out of all proportion to the original injury.

I know many people that have required amputations due to vascular complications arising from CRPS.

I took early retirement and spent the following year in a wheelchair. I had to relearn how to walk and how to live with severe chronic pain and disability. I was taught to gradually desensitise my leg so I could walk short distances again. CRPS spread to my dominant arm too which I found distressing. 

My arm remains hypersensitive to lifting any weight, for example anything more than a few pounds or over activity results in days of inability to use my arm due to the level of pain.

My ability to carry out tasks such as personal care, cooking, driving has been severely reduced. My husband is very supportive and assists me as required. I stubbornly maintain some private occupational therapy work!

Four years later, aged 49, I received specialist care. I continue to rely on a mobility scooter for distance. I sometimes need to use an electric wheelchair indoors depending on my pain levels. I hope to raise awareness of CRPS so others are diagnosed more quickly.

  • Sarah Shaw is an independent occupational therapist
     

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