Its been a rough go lately dealing with extra pain but somehow I manage to keep moving forward! A few weeks ago I traveled down to Huntington Beach to attend the Global Genes Rare Disease Summit. The stress of the travel was hard on my body and although I had to fight a lot of extra pain it was well worth it. There’s a trade off that comes with living a chronic life and I know there are others of you out there that understand what I’m talking about. Its all a part of me moving forward with my life and not allowing your illness to take all control!
I arrived home from the Summit changed but in a really good way. When your sitting beside a person who is one of only five people in the U.S. that has a rare form of cancer things are suddenly put into perspective. There was unique story after unique story each one impacting me in a different way. It was impossible to take away just one thing! If I felt inspired to do something about CRPS before, I left feeling as if I had to do all that much more! When I looked at the work that some people had been doing to raise awareness for their particular illnesses, I had to ask myself what am I really doing? At the end of the weekend we all went back home having gained 500 friends and a wealth of knowledge to take back to our communities.
I really feel I was able to make some strong connections and tap into some resources that will be useful here in my own community and province. Although its hard at the best of times to battle on with chronic illness I believe God gives us an abundance of strength when we need it the most, never giving us more than we can handle. With that being said as I left the conference knowing that I needed to be stronger in my advocacy efforts I came to the conclusion that no matter what I face or take on, God will provide in every way I need Him to along the way. I don’t want to be that person who says “I can’t” just because the path in front of me looks too difficult. I need to remember that God is guiding this walk and that when I’m lacking clarity or vision that I’m to look towards Him.
As I prepare to have the first ever CRPS Awareness day here for the Province of Saskatchewan I can feel my legs begin to tremble just at the thought of having to put this one day event on. Some of the people coming to this event hold important positions within our community and even our province. So sometimes I question my qualifications or I tell myself I’m way out of my league when it comes to taking this on. However nothing could be further from the truth. My qualifications speak for themselves having lived this illness for the past ten years! I need push forward because I have a testimony within my story that might just help one person find the care they need, or cause one Dr. to stop and think about how they diagnose and treat a patient. It might even be that one person from our government who comes to the event and is impacted. Leading them to say that we need to work on policy and legislation. Let me be very clear! All I’m saying is that by standing still I won’t create change!
Fast forward two weeks because this post was suppose to be up already but there’s just been too much going on and not enough time to do everything! CRPS Awareness Day went ahead this week and was a huge success! I’m not going to lie when I say I was a little worried that I wasn’t going to fill seats for my key note speaker but we were at full capacity and I think a few people other than patients walked away better informed of what CRPS is. The next day I was asked to speak at another conference and share my story with a group from within our health district. As much as I was nervous about getting up and doing it I knew I had to because we need to spread the word and make people listen.
Its not about being qualified! Stories bring with them power to change, whether it be my story or your story or someone else’s! It’s only when we move that we make a difference but you have to ask yourself are you willing to do it? Through sharing my story and all that has been thrown at me over the last ten years it is my hope that I will make a difference. All I can do is hope and leave the rest up to God!
Today I wanted to write something to encourage all of you out there who are struggling right now with your diagnosis. It might seem as if your world is spinning out of control and you might be asking yourself what do I do now! I want you to ask yourself a question. Are you happy? When I saw this video I said to myself its a perfect fit for what I want to talk about because it really says it all! Through all the pain, anger, and fear you need to get back up and fight. In some cases it isn’t going to be easy but with Gods guidance anything is possible! As the video says allow your heart to start beating again! Take baby steps one foot in front of the other and you can get there!
A word of advice! I really wanted to figure out where this journey was taking me but understand now I just needed to take the ride. I’ve turned that over to God and it’s brought peace in my life. I’m learning that bit by bit Gods greater plan is unfolding for my life. Sometimes the battle to get your mind and body back in the game, is tougher than facing the illness itself. When we get sick we just want everything to go back to the way it was. We tend to focus on the way things were and it can be really easy to become bitter and angry because we can’t have our old life back! Have you stopped to think for a minute that maybe this journey your on is for a reason. Maybe God has a plan for your life with bigger and better things but first you have to walk through some really tough things!
To often we listen to all those tiny voices that we hear in our head and it stops us from shifting the car from park into drive! I’m often reminded of all those episodes of the Flintstones I used to watch as a kid. If you don’t remember it then it was a cartoon set in the Stone Ages. The cars they drove in the cartoon were foot powered, and Barney and Fred would constantly forget to move their feet to get the car going. The running joke was why isn’t the car going anywhere. So the parallel I’m trying to make is that you have to keep your feet moving, if you want to stop yourself from getting stuck in the mud.
It might take some time to figure things out but don’t believe for a minute that your stuck where your at! You can’t be scared of running up against obstacles, or the times of frustration that you will run up against while on this journey. Look for the lesson from within each of those challenges, and if there is one learn and grow from them if you can. Some of those hard times that you face as you walk this journey might just change how you think about things from the past. Or it might open your eyes to new things that you never thought possible. Never in a million years did I see myself organizing a CRPS Awareness Day in our province and taking a roll in advocacy the way that I am. That being said I couldn’t feel better about what I am doing and the small roll I’m playing in trying to raise awareness. Advocacy has fueled a fire in me that wasn’t there before. Its fire to help people in whatever ways I can.
I’m not trying to tell you what to do in your situation. Absolutely not! I’m just trying to point out that there are things in my own life over the last ten years, that I’ve had to work on that I didn’t see coming. Ones that are taking me down a different road and as this happens I’m seeing happiness return. Do I know your situation? No! Can I relate to your situation? Yes! I do know that if I had stayed the way I was ten years ago then I wouldn’t be happy. I wouldn’t for a minute think of trying to tell another person what to do with there life and I never will. What I will do however is share my story with others and encourage. I really believe that when we support each other in these ways that we gain perspective. What you choose to do with that is your choice!
This is a simple message that I’ve given on more than one occasion but I think its important to keep giving. Its important because if I don’t remind myself personally every once in a while of these things, then I become stuck or my vision can become clouded. So I would hope that you see things in the same way. If your reading this today I hope it helps shed some light on questions you might have in your own journey!
Its been one of those weeks where the needle on my gas tank has been running on empty! My pain level has been hard to manage and its taking everything within me to get through every day. Some days it feels as though I wake up and I just don’t have anything in me to give. I ask myself how I’m going to find the energy I need to get through that day. This is a fight I live day by day and some days are easier than others. Sometimes my tank is running on empty and others its full and getting great mileage. So like when you get into your car to go to work, I often find myself checking my gas tank to see if it needs filling.
Chronic illness can suck your tank dry and so you need to be checking the gas tank on a regular basis. I check mine every morning and for me that means having a conversation with God asking him to fill my tank. The last thing I want to do is run out of gas! For anyone battling CRPS or any other chronic illness you know that this can happen very quickly. Over the holidays I’ve had to fill my tank numerous times but by having that five minute conversation with God every morning I ensures that I never run out.
Its more than just checking to see if I have enough gas in the tank. There are other things that I need to check out with my car. Every so often you get the oil changed and you check the belts and all the other fluid levels. So I have to do the same thing with my chronic illness and check to make sure I’m putting all my different tools I use in order to manage my pain into place. I make sure that I add anything else that I might need to into that conversation I have with God. So maybe every once in a while that conversation with God is a little longer than five minutes.
As well as an oil change you have to have things like tune-ups and tires rotated in order to keep the car operating at its best. Doing all these things are all a part of a regular maintenance plan for your car. With your illness you have to make sure your doing the same things. You always hear mechanics saying that if you do the preventative maintenance then your car will run longer and last longer. Well the same holds true with your chronic illness. If you follow the plan your physician has set out for you it will make things more manageable in most cases. That’s not to say that you might have periods where things are difficult. It gives you the best chance at managing your illness more effectively and with as few symptoms as possible.
It can be so easy just to drive our cars into the ground not doing the things we need to do to maintain them! There are so many different ways that we can stay on top of the maintenance, yet that’s easier said than done. When your hurting all the time and all you do is spend time fighting your illness, it can be easy to forget those things you need to be doing on a regular basis. That’s why checking in with my mechanic (God) every day helps to keep everything running the way it should. Especially around this time of the year when it can be so easy for my body to break down!
I’m looking forward to the New Year and a much better year with my health. Looking back this last year was extremely tough both physically and mentally! If it wasn’t for those constant conversations with God to get through it all, my bolts would have rattled loose and my car would have started to break down. I wasn’t anticipating that it would take this long! Like when you have to rebuild a car engine I have to rebuild my body and that doesn’t happen overnight! I’ve had a great mechanic that’s been able to make sure all the parts are in place, and all the fluids are full. I’d highly recommend this mechanic because He does great work!
For several months now my health has been touch and go and I didn’t know if I’d have to get a refund on our trip to Cancun or not. I can’t tell you how many times it went through my head that this trip just wasn’t going to happen, even though I just wouldn’t admit it to myself. Looking forward to something fun for a change that doesn’t have anything to do with my health was a welcome change. Well I’m happy to say that in less than twenty four hours we get on that plane for a fun filled holiday full of relaxing on a beach doing absolutely nothing. Normally when we travel we like exploring the region and taking in all that destination has to offer. That won’t be happening on this trip. This time I’m perfectly happy to go and park myself on a beach and not move! Let’s just say my body won’t let me right now!
Now that we are going its time to get last minute details taken care of, and lets just say that there are a lot to take care of. Then there’s this here blog that would normally write a post from wherever I was going so that you can enjoy the same scenery as I am except for one small detail! That YOUR really not there! Not that I want to rub it in because I don’t. The only people I want to do that to are the friends and family that are back home in -30C weather spending day after day shoveling!! I regret to inform you that I won’t be able to do that this time because I won’t be on the internet. With what your paying for in an all-inclusive trip you’d expect that WiFi would be included, where they can make money however they will! So I won’t be bringing you any pictures until I get back. I’m hoping to get around to writing a couple more posts that will publish while I’m away but I’m not sure if I’m that organised this time!
From a pain standpoint things are up and down as always, with some just needing to find that alone time to calm down the nervous system. Those days are very few and far between when you have a nervous system that’s always on edge and doesn’t seem to ever calm down! Its the life that I have to live with and have had to learn to accept along with everything it brings with it. Nobody said this was going to be an easy road, and believe me what I’ve had to endure over the last few years has been anything but a walk in the park. In some ways I feel like over the past year its been one big character building exercise that I’ve been put through. As a result I feel like God has been building me into someone stronger more resiliant, ready to take on anything and everything.
Through this lengthy trial that I’ve had to walk through, I feel as though I’ve been discovering who I really am inside and the person that God created me to be. I’ve said this before and I’ll say it again but for the longest time I struggled with what was going on inside myself after being diagnosed with my CRPS. For starters I felt lost and like my self-esteem had sufford a major blow. I had just brought my daughter home from China and I questioned how I was going to be as a father dealing with a disability. Then there was the guilt of my wife having to not only watch me go through this, but to have to take on so much extra and not be a stay at home mom! As if that wasn’t enough I couldn’t stop thinking about what life was going to be like for myself in the future. All of these feelings took several years to deal with.
Somehow in the middle of all these storms and all the trials something changed and a strength and the ability to be extremely happy with my life has come about. How does that happen? In part two of this post I’ll be looking at that! So until next week goodbye and its off for some fun in the sun.
The New Year is under way and now its time to get back at it. After some great family time out at the lake we are back into routine with the kids with school, sports, and everything else that makes life busy. Then throw in a chronic illness and it makes for a lot of fun! Even though our family fought through colds and sickness over Christmas we still had a fantastic time with the rest of the family. We even welcomed a New Years baby into the family on Jan 1, 2015. My nephew and his wife welcomed their baby girl named Everly Jean 7lbs 12oz into the world! Congrats to Ward and Nicole! On the pain front things have been up and down. I’m trying to keep myself as distracted as possible and push through all the flare ups which have been coming often as I continue to heal from surgery.
A big thanks to Julie for putting together a guest post for me while I was away as well! It was nice to get away and have everything organized to the point where I didn’t have to even get near a computer. Now if I can only put together a few posts to try and stay ahead of the game this year. I’m not big on putting together New Years resolutions but if I had one this year it would be that I’m going to do a better job with with being a advocate towards CRPS. I’ve already started making some minor changes to my site and there will be a few more coming. It’s really a matter of organizing a few things and adding others. I haven’t felt stronger about making connections within the chronic illness community and trying to make a difference.
As I’ve mentioned before 2014 was a challenging year but I believe it has changed me in some very positive ways that I need to now pursue. As I start 2015 I’m choosing to put last year behind me, and getting to work on the list of goals I’d like to accomplish this year. Its time to start doing a lot of praying and beat down my CRPS to take back control. My photography has been a big part of that giving serving as a great distraction but because of my physical health had to be put on the back burner a lot last year. So for this year a goal of mine will be to get all of that back on track. So far that’s off to a good start as I’m already making some changes to my photography website Ross McCreery Photography. Along with my main photography website I now have a Facebook page https://www.facebook.com/RossMcCreeryPhotography that updates my latest work. Check in on both because there are a few surprises in the works.
There isn’t much of a message to today’s post except that I’m starting fresh for this year full of more strength and determination! Once again God has helped me get through a lot over the past year and it wouldn’t be right if I didn’t acknowledge that. Without His guidance to get through the recovery over the last couple of months I would have without a doubt gone crazy! I also know that even though I’m still recovering that there are some very powerful lessons to be taken away from all of this. Once all the dust clears and I’m fully recovered I’m sure I’ll be able to reflect on those but for now I’m still trying to navigate my way through things. Like I’ve said on so many occasions it doesn’t matter if its a big victory or a small victory because a victory is a victory! Each one draws you closer to the biggest victory of them all defeating your chronic illness!
Have you ever been so discouraged that you just wanted to give up? Well that’s how I’m feeling at the moment. I’m now into week five of recovery and I’m not very far ahead. Last night we had a wedding to go to and I was going to get there if it killed me. Call me stubborn, hardheaded, or just plain mulish but I wanted to get out for a bit. Well kill me it almost did! We had planned out how this was going to all play out, and I was going to skip the ceremony because I have problems sitting for very long periods of time. The best thing we figured would be to go to the reception that way if I needed to leave I could. I made it for about an hour and a half before the pain got so intense that I couldn’t take it and had to head for home.
I’m frustrated at the moment because the doctors are saying that my body is just going through a rough healing process and that I just need more time. How much time exactly is that? I will be meeting with the surgeon this week to discuss things along with a few concerns I have. It feels like I’m not getting anywhere very fast and there are days where I just have to have a good cry. Yes you guessed it your getting one of those posts today! Never in my life did I think that I’d be pushed and challenged as much as I’m being at the moment. When your body is screaming with pain your brain is telling you one thing but God was right there telling me another. Over and over I’ve said I’m going to beat my CRPS and that will happen one day. I might be down today but tomorrow is a new day and the fight will resume.
Days like yesterday are hard because things with CRPS can spin out of control so fast. Adding surgery into the mix makes things a lot more volatile, and you never know what the outcome is going to be! So last night was one of those nights where the surgical pain combined with my CRPS caused my CRPS to spiral out of control. Its a fight that I’ve been going through since having the surgery, and one I know I can and will win. My winning spirit just wasn’t there last night however and I had to fight to stop the tears from flowing during the reception dinner. Times like these are difficult to battle through and all kinds of thoughts enter your head. My wife asked me tonight if I regret having the surgery and without hesitation I said “no”. Why? If I say “no” then I’m giving up on something that can be life changing, and take me in a very positive direction.
Am I feeling sad and frustrated at the moment? You better believe it! My emotions got the best of me as we drove home and I couldn’t hold it together. So I had a minor meltdown in the car and at home later. CRPS is a battle where every second of every day is consumed by pain. Sometimes it has to come out and show itself and if that means crying then get out the box of kleenex! I am thankful that I have a wife who understands me and knows how I’m feeling most of the time. I felt as though I’d spoiled the nights fun for the family. My wife then reasured me that in no way had I spoiled anything, which was just what I needed to hear.
For some reason over the last couple of years it seems as though I’ve faced more obsticles, and come up against more challenges than I have in a while. As I walk through each of these challeges, I always walk away feeling like I need to be more of an advocate for CRPS and chronic pain. Something is pushing me to go outside my comfort zone and I need to pursue it. So one way in which I’ll be doing that will be in making a few changes to my site. I mentioned this a while back and seeing as I can’t do a whole lot at the moment I have the time to make the changes. I’ll be introducing a few new links and blogs to my site and from time to time putting up a guest post. I’ve often talked about making these changes but never really got around to making them. Even though most of the content on this site will stay the same, there will be tweaks here and there to speak more towards CRPS and chronic pain! That’s it for today I just don’t have enough gas in the tank and I need to rest so talk to you all soon.
Who knew that a month after surgery I’d still feel like I was run over forwards and then again backwards by a Mack truck! Yes it’s been about four weeks since the surgery and there’s still a long way to go. The mental battle that I’ve had to face through all of this has been huge. On more than one occasion I’ve had to tell myself not to give in to fear, or any other distractions that I’ve come up against along my path to recovery. On Wed I faced yet another obstacle as I ended up heading into the ER because things took a turn for the worse. After not being able to get ahold of my neurosurgeon or my GP I was advised to head down to the hospital to get things checked out.
When I got to the hospital I knew I was in for a bit of a wait. Nothing unusual for a hospital ER right! The doctor came and did a few tests as they always do, and then ordered a few more things to be done and told me that it would be a few hours before we got the results back. So I did a little more waiting and grew a little more tired, before a nurse came and told me they were moving me to another part of the ER. I felt like I was being put in isolation with nobody around and nobody coming to check on me. Under normal circumstances this quiet place would have been great for a person with CRPS to wait. On this night however it was too quiet giving my mind to much of a chance to think, and all of a sudden the pot boiled over and everything just came crashing down on me. I couldn’t put on that brave face anymore, and the tears started to roll down my cheeks as all the stress started boiling over. Of course the timing was perfect because just then the doctor walked in and she could see the emotion all over my face. After talking to the doctor for a bit longer, not only could I hear it in her voice but I could see in her face that she could understand the pain I was in. I could see she really understood me!
There wasn’t much that the doctor could do for me to help me and although I left the hospital after a long night frustrated that nobody could help me, looking back not everything about the evening was negative. After the fog had cleared and by that I mean the frustration and everything that boiled over that night I was able to look at things in a much more calm and realistic manner. I needed that alone time for everything to come up to the surface. If you keep pushing everything down then it builds and builds leaving you like that earthquake or “the big one” waiting to happen. If that were to happen then everything around you would come crashing down around you crushing you in the process. Isn’t it better that we let off pressure every once in a while so that it doesn’t build and build until we can take no more.
As I sat in that room that night letting my frustrations come to the surface saying prayer after prayer I knew that there was a reason this was happening. I may not have realized it then but when I think about it all now it makes perfect sense. It was time for God to hear my thoughts, prayers, and all the frustrations that I needed to get off my chest. Once again when everything seems to be be getting to be too much, and just when I start to doubt that people are listening to what I’m saying He shows me that there is someone listening and that someone cares. In dealing with an illness where it can be hard to get people to listen, over and over He shows me that no matter where or when He will be there. As is the case with the team of people that have been put together to form the staff at the implant clinic. I really believe that God placed each one of them in their position for a reason.
Sometimes you just have to do a lot of sorting out of all the garbage! Ask yourself is everything in all of this bad or is there a lesson deep down beneath all that trash? Or quite simply do you just need to let it all out because God listens even when it may not seem like nobody else is!
It’s Nov 1! What’s so special about today? Well it’s the start of CRPS Awareness month! So over the next thirty days you’ll be hearing a lot about the illness that has impacted my life so much over the last nine years. Seeing as my site talks about CRPS on a routine basis, I had to try and think of how I could do my part in trying to raise awareness over the next month. So what your going to see on every post from today until the end of the month will be a fact about CRPS. So without delay here is today’s fact.
Fact #1 Many health care professionals and consumers are unaware of its signs and symptoms. Typically, people with CRPS report seeing an average of five physicians before being accurately diagnosed.
With my case it took about six different doctors and then a flight out to Vancouver to get my diagnosis. It took about a year and a half in total before I finally knew what I was dealing with, and before I could get any type of correct treatment plan put into place. At the least someone should have been able to tell me who to see or where to go. When nobody in the entire city is able to direct me as to where to go there’s a problem. Now I firmly believe that not every physician is going to have an answer to everything. Nor is it fare to expect that they are going to know every disease, illness, or medical mystery that’s out there. That’s where those of us who do have a diagnosis have a responsibility to step up and help educate, and I do believe that’s happening.
In the nine years since my diagnosis here in my city the physicians are getting better at recognizing the symptoms of CRPS however in other areas it’s very clear training is needed. While I was in hospital at the time of my implant surgery, over and over I had to educate the nurses on what CRPS was. I found myself explaining how my body reacts to pain numerous times, and the different symptoms that CRPS presents. It got frustrating because there were lots of times where their lack of knowledge stood in the way of them being able to treat me effectively. The first three days or four days were spent trying to get my pain under control because they didn’t truly understand what I needed in the way of medication. Or the simple fact that as a CRPS patient my medication needs to be kept to a strict schedule in order to best control my pain. During those first few days they struggled to help me with my pain. On day five along came one of the staff from the implant clinic that works with me. After she made a simple change to my meds things were better controlled.
A little education in those first few days would have made a big difference in the way that my treatment was carried out. I’m not upset with the nurses at all because they didn’t have any background with CRPS. There’s a real training opportunity there however in the way that CRPS patients are cared for. Those training opportunities are only going to happen however if those of us who are dealing with CRPS stand up and speak out. We need to give our feedback to the proper people and tell them that our care matters. So with all of this being said CRPS Awareness Month is a great chance to start educating! This month I challenge all my fellow bloggers and social media gurus with this. Every week post a fact on your blog or form of social media you use the most about CRPS. If you don’t blog or go on social media then tell a friend or colleague something about CRPS every week!
So here I am on a Monday afternoon trying to figure out what to write! I had three quarters of a post put together but then decided to shelf it for another time because I felt I needed to write about something else! I’ve really been having a hard time with my pain lately and surgery to fix my one implant couldn’t come sooner! I spoke with someone who does the scheduling for surgery and it looks like things might happen in the next two or three months. It’s been a really long wait but it finally looks like my time is coming near. It brings with it hope that my pain will be better controlled and that I can get my flare ups under control once again.
The last couple of days my pain has been hard to settle and the management side of things has been a daunting task. However it’s at times like these that I find a strength and fight that rises up in me refusing to give in to defeat. I sometimes hear this little voice in my head that says “you are strong” or “don’t give in”. I firmly believe that in the times where my body and mind are weak that God is there to make me strong, encouraging me at the times I need it the most.
Isaiah 40:28The Lord is the everlasting God the creator of the ends of the earth. He will not grow tired or weary, and his understanding nobody can fathom. He gives strength to the weary and increases the power of the weak.
When your on a journey living a life with CRPS it can beat you up and tear you apart! I can speak to that because for the last eight years that’s exactly what it’s been trying to do. CRPS is this constant cycle that is relentless in nature that takes you on both a physical and mental roller coaster over and over until you can take no more. When your on a roller coaster it feels as though the carts your riding in are careening out of control going faster and faster. I like to use the reference of a roller coaster because it’s such a similar parallel. With a roller coaster your a body in the cart that’s along for a real wild ride. In some cases it’s the ride of your life! Well CRPS works in the same way with a little less fun attached to this ride! Your at the mercy of an illness that takes you on a ride that never seems to end, and can drive you to extremes. If you have God in the seat beside you through the crazy ride, then its a whole lot easier to handle.
I guess what I’m really trying to say is that at times when your scared God’s there! When you don’t know what’s around the next corner God’s there to help! When you feel like you just can’t handle any more of that ride because you’ve been battered and bruised God’s there to help you ride just a little bit longer. Anything is possible when you allow yourself the chance to come into relationship with God. That’s a big part of what has changed over time as I battle my CRPS. He’s strengthened my spirit and and continues to pour into my life in all the areas that I need His help, and because of that I’ve become a much stronger person.
So I leave you with this! Who is sitting in the seat next to you on your ride?
It’s been a pretty great week in my neck of the woods! All last week our fine city hosted Grey Cup 2013 with the big game being played last night! I can now say that our city is truly alive with celebration because the Riders brought home the cup last night, making history in the process by winning in front of the home crowd! Car horns and cheering could be heard well into the wee hours of the morning as fans celebrated the victory. This city and province are so proud of them and congratulate them on such a great season!
The month of November is CRPS awareness month and so I always put up a post that brings attention to this. I’d normally put something up at the beginning of the month but for whatever reason I didn’t and so your getting it now. Ok so I forgot about it!
Since being diagnosed I have always been passionate about creating awareness when it comes to this illness. A common question that people ask me is how many people have CRPS? That’s not an easy question to answer because in some places studies haven’t been done to determine the numbers. In Holland a study was done based on 800,000 patients determining that 1 in 4000 were diagnosed with this illness. In England a study shows that 1 in 2000 live with CRPS. I was unable to find any numbers for Canada and the U.S. but was able to find that in the U.S. 50% of all cases go undiagnosed. When I last checked on any studies being done in Canada there was one being conducted in 2012 to try and pull together the number of people living with CRPS.
If you read my blog on a regular basis then some of this information I’ll be posting will be old news. My goal however with today’s post is to educate those of you out there that have little or no background with what CRPS is. CRPS is a multi-system syndrome with diverse symptoms characterized by chronic pain. It affects the immune system, central nervous system (brain and spinal cord), and the vascular system ( hot/cold). It is more commonly found in women( between the ages of 40 and 60) more so than men. As well children and teenagers are also found to be affected.
The pain that one feels with CRPS is a burning, stabbing, and shooting type of pain. It is considered to be one if not the most painful long term condition there is. On the McGill Pain Index it scores a 42 out of a possible 50, above both childbirth and amputation.
The chart above gives you a visual of the type of pain that someone living with CRPS has to deal with. With pain as intense as this it is key that it be diagnosed as quickly as possible. Often however the pain goes misdiagnosed, diagnosed too late, or the patient is told that everything is all in their head. Although we don’t have an accurate number of how many people live with CRPS between 80 and 120 million people live with some form of chronic pain. CRPS is a very real illness that causes suffering that you can’t begin to understand unless your living it! So the next time you come across someone living with chronic pain please don’t tell them it’s all in their head. Chances are pretty good that it isn’t and that the pain is very real.