Knowledge is Power

Shana Kagan

CO-FOUNDER AND CEO

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

CRPS has no cure – true or false?

When Jed was diagnosed with CRPS after many weeks of confusion, no doctor could treat him.  

It was a difficult time as Jed, 10 years old, was in so much pain, unable to walk without crutches, totally anxious about any fast movement around him, talking and attempting suicide as he thought he would be suffering from this disease forever, at that stage all he knew was that no one could help him… but this was not true.

We eventually found the correct treatment and Jed is now CRPS free for 3 years.

We have really pushed all boundaries, spoken to a lot of people and asked many questions from those who have CRPS or had CRPS, or whose kids have had or have CRPS and we have learned many things. Knowledge is certainly power.  We want to empower you with what we have learnt.

We were told that there is no cure for CRPS, and this is on every CRPS website, well we learnt this may be medically true but not entirely the truth. There are many holistic or alternative cures that can and have helped CRPS kids and adults get rid of this disease, but there are no known medical cures, or medical protocols.

There are in fact strange cures for this strange and complex disease. Medication does help not on its own. It is necessary as part of the treatment, but other treatments are also needed.  CRPS is a nerve disease and not a trauma, the body has to learn to calm itself and to realign the nerves. This can be done by the state of mind and therefore, treatments like meditation, life skills and visualization help get the nerves to relax and straighten themselves out to their original position.

So we know for a fact that children and adults can be cured from CRPS, with medication and these alternative therapies, not one but a few that will work with the child’s individual personality. This is not a one-size-fits-all treatment. The child must decide with the support of the parent which treatments are best suited for them and then must be given small goals to achieve every day, and then must try to achieve a bigger goal in a few weeks time, like an outing with friends to an amusement park. It must be a big event which seems unimaginable while suffering from CRPS.

With the help of these therapies they will learn to retrain the brain without any extra trauma, no pain, no pain is achieved and the CRPS devil can be conquered. This is the cure, even after many years of having this disease, even after full body CRPS, even after being totally debilitated and wheelchair bound, we know that these sufferers can get better.

There may not be a written cure or a written protocol for the treatment, there may not be one tablet that can treat this disease but there are various treatments that if you decide to implement and trust, for yourself or for your child, can help. We want people to know that they can flick the switch. Not only with medical help but also on us shining a light on other alternative treatments.

This is not an easy mind switch. I know for myself and for Jed, we were fortunate that all our treatments were done at our hospital here in South Africa, they implemented all these alternative therapies for their CRPS treatment. Unfortunately most other hospitals do not implement this holistic approach. You have to find it on your own accord. We all are conditioned to believe that only medical help is possible.

Many years ago, we thought Jed was very ill when he screamed 24 hours a day. The pediatrician said to us “go to a chiropractor, they may help” as no medical help was improving his condition. With my medical background of working in a hospital as a radiographer for many years, my husband and I were very skeptical about this treatment, and I remember thinking “Oh my gosh, this sounds like hocus pocus.” With this said, it is a very difficult mind switch in trusting these alternative approaches. Jed had one visit and the chiropractor jerked his neck and said he had something wrong with his neck alignment.  We went home and a few days later I said to my husband, Jed has not screamed at all the last few days. We were so used to hearing him scream, we could not believe it. But yes, he had stopped.

When one is desperate for an outcome for a horrid disease we must try every solution, especially since we know that not all doctors are knowledgeable about CRPS or know how to treat it.

Jed’s CRPS prognosis and recovery is a miracle and all the other children that have been treated at our hospital in Cape Town, with the caring and empathetic, medication and alternative approaches. It is important to know that the body can heal itself and once you believe this, you can take the steps in the right direction.  Especially if the disease is neurological as the nerves form the mind and brain.

Some of the doctors that have been with us through Jed’s CRPS journey also believe that they have pain patients that they cannot medicate anymore as the medication has done what it can, now they need other methods of treatment. These patients trust the medication so much that it is very difficult to say to them “Go and look for an alternative treatment,” the doctors do not generally say this to their patients.

Alternative treatments are often perceived as “strange” and not very normal. What I can tell you though, is that they work. If you really want to trust a system, take a chance and try it. We know they work. We know that our hospital uses these holistic approaches and relaxing techniques, like mindfulness, yoga and meditation. They are starting to incorporate these practices in pain management in many clinics throughout the world.

Retrain your brain!

Look in the mirror and repeat to yourself out loud “I AM PAIN FREE!”, take your child’s hand and say “I AM GOING TO LEAD YOU THROUGH THIS JOURNEY AND WE WILL COME OUT ON THE OTHER SIDE PAIN FREE. I PROMISE YOU WE WILL GET THERE” And even though your child has to heal on their own accord, you can certainly lead them in the right direction and encourage them in every way, to get through the pain and to live a completely pain free and normal life.

Just remember, Jed did, along with all the other children who went through this journey here in South Africa and who are all CRPS free.

This journey of ours has inspired us to start our own virtual pain clinic called Horizon Clear, which can help in many ways. We have specialists who know all about pain, who can help with healing, life coaching and other therapies. A very important step in the right direction is looking towards the future and seeing your life without pain. A positive frame of mind is half the battle won, and it is this learning that we want to share with others. This is not a quick fix, it is a slow journey whereby daily goals should be set out and every day take that one step towards a pain free future.

Remember- Jed says, “If I can do it, so can you.”

Jed is now 13 and 3 years without pain.