My Advice to CRPS Sufferers

Today, I thought I'd share my advice for other people out there who, like me suffer from CRPS (Complex Regional Pain Syndrome). As you probably know already from reading my previous posts, I've suffered from this condition since undergoing knee pioneering surgery back in 2011 and was finally diagnosed with the condition in early 2013 by which point it was too late to actually attempt to cure the condition. 

I was just 12 years old when I had my knee surgery and at just 14 years old  I was diagnosed with CRPS (Complex Regional Pain Syndrome) so I guess I was pretty young and I still am in many respects. As I write this I sit cuddled up on my bed with my hot water bottle on my knee due to my pain flaring. Not much fun! This got me thinking and I thought I'd write my advice for other people in similar situations to myself. There is very little information out there for CRPS suffers particularly by people who suffer from it themselves and by someone of my age. So I thought I'd share the little knowledge I have and I'm sure there's plenty more for even me to learn over time. I am no expert! I don't think anyone really is to be completely honest which leads me onto my first piece of advice.

1. Don't be afraid to be honest with your consultants as no one knows you better than you! Whilst doctors, consultants and specialists are counted as "professionals" even they don't always know what the perfect cure or solution is for you. CRPS or even chronic pain in general is something that needs to be investigated in a lot more detail than it already has. I personally, under hospital guidance havd tried numerous treatments such as using a TENs machine, anti-epileptic medications which have apparently shown effective results in people suffering from nerve pain and even acupuncture. Some of which have helped to some degree but alongside any relief that I did experience came other problems. I still haven't found a solution and instead have to manage my pain levels to the best of my ability. People in the medical profession are just human and are still learning just like you and I so don't be afraid to let them know that something isn't working for you or if you don't want to go through with a treatment because "the doctor knows best and I can't question them". Don't worry, you can because ultimately they're not the one going through everything that you are. And let's face it; no one knows you better than you!

2. Never give up hope! You never know what tomorrow might bring, it might just be the day they find a cure or a way to relieve your pain levels! New cures and treatments are being discovered each and everyday for a large number of things. Tomorrow might just be the day that they'll find the one to change your life!

3. Play close attention to what triggers or increases your pain flares and look at ways in which you can minimize these triggers or perhaps get rid of them altogether. For me things such as stress and upset play a big part in triggering off a pain flare so over time I've had to step back and take a look at what I can do in order to prevent myself from becoming stressed, anxious or upset to avoid my pain levels becoming any worse than they are. Another personal pain trigger is cold and damp weather which living in Scotland is pretty difficult to avoid I must admit. It's actually something that I'm currently struggling with quite a bit due to the fact it's approaching the colder months in the year. And I'm currently having to use techniques and coping mechanisms that I've learnt over the past couple of years such as carrying a hot water bottle wherever I go and the simplest of things such as wearing warmer clothes, resting my leg and using art and music to take my mind off of it. It doesn't take the pain away, but it certainly helps me to cope with it and prevent it from getting any worse. There will be many different ways of dealing with pain triggers and not everything will work for you, but my advice is to try things out and over time you'll discover what works for you.

4. Don't be afraid to say no and make people aware of your capabilities! Perhaps you may have heard of the spoon theory and for those of you who haven't, I suggest looking it up! It explains the daily capabilities of a chronic pain sufferer perfectly. Pain is such a debilitating thing and sometime makes enduring the simplest of tasks a real challenge. You're only human and can only do what you can do! It doesn't make you a failure to say 'no, I can't manage to do that today'. Sometimes people won't always be as supportive or as understanding as you'd hoped they would be but, you know what?! It could easily be them in your situation and they don't know what might happen tomorrow so always be proud of yourself for what you can do because you're doing good! It's the scenario of whether the glass is half empty or half full and sometimes the most difficult of situations bring you to facing that scenario face on. And trust me, it hasn't always been easy to be positive in past, but I can finally say I think i've finally got there!

5. Never compare yourself to what you once were or even the people round about you. This isn't an easy thing to do, I must confess, it's something I'm still learning not to do. It's so easy to look back at a time when you didn't suffer from CRPS and feel absolutely crap that you can't live the life that you once used to lead and do things that you once used to do. Always, focus on the positives, be proud of what you CAN do and the person that you've become because of all that life has thrown in your direction.