What is CRPS? (complex Regional pain syndrome).
CRPS! Well it kind of is what it says on the tin really! A complex condition that results in the suffer experiencing unbearable pain. Caused by the neurological system and normally effecting one limb. It is rarely in two or more but definitely possible.
I have been living with this condition for just over 3 years. A condition that has affected my mobility in my lower limbs and has meant I have had no choice but to use a wheelchair.
At first I was full time in the wheelchair however recently I started to use crutches. Its great to be up on my feet more but I get tiered very quickly and the pain never goes away and I mean never.
Not only has the condition meant I have struggled to walk but I also get spasms. The Spasms are caused by a condition that can be related to CRPS, called Dystonia. These, sometimes very aggressive attacks, effect mostly the right hand side of my body and are somewhat unpleasant.
The medication Gabapentin helps to control these very uncomfortable and painful symptoms but unfortunately don’t stop it all together, however I feel they are reduced dramatically.
Not so bad! I mean when people look at me thats generally what they see! a guy in a wheelchair. Well maybe this is a good time to mention I also suffer because of it all a significant reduction of control in my bladder. Between the CRPS and the cocktail of drugs I take I have Recently been diagnosed with Sensitive Gastroenteritis.
Now if you followed the link you will know that i am basically pron to bowel infections. during this time I cant sustain my levels of Phosphate. This is called hypophosphatemia.
So I am stuck in this fantastic circle.
CRPS has caused Dystonia. the issues with my lower mobility has resulted in Gastroenteritis. when i get flare up of that I then suffer with Hypophophatemia that causes high level stomach and muscle cramps. Cramps cause spasms and spasms are caused because of the dystonia.
Yep CRPS sucks but it could be a lot worst. what i have had to do is learn to adapt. and adapt i have!
CRPS for many “professionals” is considered as a cop out diagnosis. Not recognised as being a real disability, Well neither is ME and that affects 1000’s of people every day and is very real.
I also want to mention that it was not that long ago that if you had epilepsy you where executed for being possessed by witch craft. And dyslexia was not even known, you where just stupid. So I think it is fair to say that science and medical opinions change and doctors are not gods and not always right.
So what is my take on CRPS? Well for me it’s hard to explain because unless you are in the situation it’s not an easy thing to describe but I will try.
It’s all about signals and receptors in the body not communicating in the right way. For example if a sensor on your car starts to malfunction it may send a signal to light up a warning light on your dashboard. It can even cause the car to lack power or stop altogether.
Now there is nothing mechanical wrong with your car. It’s a simple electrical fault that causes a whole load of problems. Anyone who knows cars and electrics will know this can be a nightmare to find. Well that is basically CRPS!
The sensors in the body that detect pain starts sending false signals and sends false messages to the brain. And as in your car can cause a world of problems for the person trying to live with the fault accept you can’t just replace them like you can on a car.
CRPS can be brought on by a number of things. An old injury or even an illness such as shingles. There is no cure and the use of medication is designed to reduce the effects.
For me even though my condition has effected both my legs I am in a much better place than most. By using a chair I can live a fairly active life. I do sport, train, and I work full time. I’ve been very successful in all areas and have been very lucky.
I had to make my house wheelchair friendly. Purchased a new car that is automatic. Changed my job so I could work in an environment that can accommodate the wheelchair. these are just the big changes
Things have been tough. It has had a dramatic effect on personal relationships and friendships. At times I have felt very lonely. I have struggled with depression and I have struggled with emotions. Suffered with anxiety because of how these symptoms effect my everyday life. I just do my best to put all this aside and concentrate on the positives.
So ‘how’ do ‘I’ live with CRPS? Well I take each day as it comes and I think that is all any of us can do.