So today came, as it was always going to do. We met the physio and the pain specialist consultant. They confirmed what we already knew, that Molly has a condition called Complex Regional Pain Syndrome.
Which is why she limps rather than walks, why she needs crutches to carry her, why she whimpers when we touch her arms and legs.
Now we have a diagnosis we can learn to move on, and get her moving again. I ache to see my daughter run again.
What is Complex Regional Pain Syndrome?
CRPS is a relatively unknown condition.
It is a neurological disorder that is diagnosed after a period of consistent, intense pain.
The pain is described as burning, aching and stabbing. For my daughter, her right arm aches day and night. Her left foot is agony when put to the floor and often she complains that it feels like someone is stabbing her. Her right leg hurts from om knee to ankle.
Put simply, she is never not in pain
All of her affected limbs are sensitive to touch. I have to be careful when hugging my daughter as to not increase the pain. Yesterday I caught hold of her hand and she cried because my touch hurt her.
It usually develops after a trauma of some kind (ie a fall). In Molly’s case, the consultants think her CRPS was triggered by Severs disease.
It is a pain which often puts its sufferers in wheelchairs, on crutches and in extreme cases bed rest.
It is an arse of a condition.
Our cure?
And that is one plus, CRPS can be put into remission with the right approach and attitude.
For us, Molly is going to attend physio at least once a week and see a psychologist to help her manage the pain.
The key is to desensitize her pain, to reteach her brain that her body is not been attacked by touch. Today I watched as she whimpered whilst being asked to stroke her own leg for 10 seconds, it was her first touch on the way to recovery. We have been warned it will get worse before it gets better. And only Molly can bear that pain.
As I said it is an arse of a condition.
But we will beat it.
Poor Molly! I hope her youthful mind learns quickly and she conquers this. Do they have any idea of how long treatment takes?
I have found there is lymphedema in everyone I have seen with CRPS and low glutathione. When both were treated CRPS pain went from 7/10 to 0 to 2/10. Most people with CRPS also have methylation anomalies causing the glutathione deficiency. A simple genetic test like 23andme can help find the problem.
Glutathione can be given by IV, inhaled, or using promoting supplements like Redox 24. The lymphedema traps the inflammatory cytokines and toxins in the area causing the vicious cycle of pain. I haven’t seen that many people with CRPS, but this approach has worked well in everyone so far.
I used homeopathics like Body Anew kit from Heel to treat the lymphedema.
Hi Stephen,
I have not heard of this before – do you have anywhere you can direct me to in order to research?
Jane
If anyone can Molly can. Time to put those boxing gloves on again
What a brave brave girl you have. And what a brave brave mum you.
Go Molly! It will get better. Much love to you both xxxx
What a horrible condition. From all the posts I’ve read of yours, I know that Molly is determined and brave. And so are you. You will beat it.
Oh crikey Jane it’s all just so unfair 🙁
It’s wrong that she should have to deal with all this so young, but I do know from personal experience that reteaching your brain is massively effective in managing – and even completely recovering from – long term pain conditions. Thank goodness she has you helping her fight her corner, and fingers crossed that she will nail this very soon x
I’m back again! Sensory brushes are used commonly on autistic kids to help them desensitise. I know it’s a completely different illness, but they are really, really soft and I wondered if they might help Molly, or even just be a way of touch between the two of you that might not hurt so much.
You can buy them in Amazon really cheaply: http://www.amazon.co.uk/Sensory-Toy-Warehouse-Single-Therapy/dp/B005QUKEM8/ref=sr_1_3?ie=UTF8&qid=1405660625&sr=8-3&keywords=sensory+brush
Oh Jane i can’t imagine how hard that must be, for you and her, for you all.
Really hope the physio helps as quickly as possible xx
Enough now! Surely she’s been through enough? Brave girl.
Bloody hell Jane! All I can say is the mind is an amazing thing and I am more than sure Molly has an amazing mind to make this right x though reading through the other comments do look at different options too.
Lots of thoughts coming your way, this post only just came up today on my Facebook feed and you never get in my inbox either 🙁
xxxx