What is CRPS?

Laying out Complex Regional Pain Syndrome – in layman’s terms.

Amazing how many of us had never heard of CRPS, and how many still do not know what CRPS is. We’re here to break it down for you…

What does it mean?

COMPLEX, because it is a complex disease. It’s complex to diagnose, as there may be very slight trauma not correlating to the amount of pain, or even no trauma and it can be of sudden onset. It’s complex to treat, as pain medication does not work. Finally, its extremely complex to live with.

REGIONAL, because it initiates in a region of the body. It’s usually a joint, , but specifically, it’s usually the primary joint – the joint most commonly used. In Jed’s case, his left knee was affected.  This caused confusion as he is right handed, but when the doctor said it normally is the primary joint, we remembered that Jed is a leftie at soccer and left-handed batter in cricket…

PAIN. The pain is unbearable and continuous. CRPS-induced pain is the highest pain measured in medical science.

SYNDROME, which is by definition, a group of signs and symptoms that occur together and characterize a particular abnormality or condition.

How to Identify It?

CRPS has 4 important tell tale signs:

  • Discolouration of the skin.
  • Slight swelling or smoothing of the skin, the wrinkles disappear.
  • Allodynia, defined as extreme sensitivity of the skin to the slightest touch, or even air on the affected area. (If my hair brushed against Jed’s skin, he would scream in pain).
  • The affected area is a different temperature

The main one of these four points that identifies CRPS is the Allodynia, a very unique symptom.

CRPS can just switch on. Jed sat on a chair, and when he tried to get up, he was in unbearable pain. The onset of CRPS can be from a slight trauma, a virus, surgery, an injection, or anything that may upset the nerves in that area. Jed had a recurring chest virus. This virus caused a strepalococcus bacteria which then settled in his knee. This bacteria upset the nerves causing them to go haywire. The nerves were knocked out of synchronization, and then began sending the continuous pain message to the brain. This is how the cycle of pain begins. The pain is not on the same level to any pain the patient should actually be feeling, it is much more severe.

This pain can increase daily. Strange things start happening because the nerves are affected, and all the nerves are connected. The pain can spread from nerve-to-nerve, and to all other parts of the body. In some instances, it may spread faster than others. Some CRPS sufferers have full body CRPS. The nerves are everywhere in our bodies – in the skin, muscles, organs and our emotions are connected to nerves. Anxiety causes more pain, and more pain causes anxiety. Jed’s pain spread from his knee to his toes and up to his hip in three months.

It is a known fact that family and friends do not cope well with CRPS, as most do not understand the extreme nature of the disease. The child’s peers cannot understand and are often not supportive. It is misunderstood or even not believed at all.

Why do some people suffer from this autoimmune disease? In Jed’s family history, we know that he has a strange hereditary chromosome which showed up in our amniocenteces during our pregnancy, which we had to have it as we were a geriatric pregnancy. We also know we have a hereditary autoimmune disease in our family, so it could be related to any one of these, but there have been no studies done as to why people are susceptible to getting CRPS. Perhaps one day, hopefully soon, more tests will be done.

We do know that most scientific medical studies say that CRPS cannot be cured. We also know that people (especially children) can be cured. Maybe not scientifically. This may mean they have to literally tap into their emotions and change their mind set to empower themselves against the pain and the disease. That’s where the “complex” may be highlighted. That’s why we’re here to help.

Shana Kagan


Shana is Treasurer of Paediatric Pain South Africa, and a global advocate for the rehabilitation of chronic pain sufferers.

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