Thursday, 7 November 2013

The many battles of sleep!

Its 3.15am
This has been a really bad week for me.
I've been in a flare up all this week.
My legs are burning. My arms are burning and hypersensitive.
My back is aching and I cant seem to get comfortable :(
My muscle spasms/tremors/twitches are getting worse.
I have successfully thrown or dropped phone more than half a dozen times today from these spasms.
I'm waiting a trial procedure next week...and I'm only on gabapentin...
I've had some people be very rude and selfish towards me.
I've had some wonderful friends reach out to me...
I've had to find more things to keep me distracted - thankfully I have plenty of photography videos to watch!
I've have gotten to know more amazing people in the crps support group on Facebook im a part of.
I've smiled and laughed :)
And I've cried in pain, frustration and sadness just as much :(

But...I continue to keep my head high enough to feel the wind! I am a CRPS Warrior...

Tuesday, 15 October 2013

It's time to write my story...

After a few things happening...and on the eve of my 18 month anniversary - its time to write my story, my journey...

Please stay kindly wont be short :P

Wednesday, 9 October 2013


I am so very FRUSTRATED

I'm not sure you heard that or not...but yes

Chronic pain is NO JOKE!!!
But our Public Health System here in Qld sure is!!

Dear Qld Government & Health - prepare for a battle!
Signed: The Chronic Pain sufferers of your so called "great state" 

Sunday, 6 October 2013


Its 3am...

My left leg is burning from toe through to the hip & lower back
My right lower leg is burning
My back is spasming
My right shoulder is aching
My right wrist is aching, starting to burn...
My back spasms are causing me to constantly move positions, trying to keep the pain to a minimal.
I've currently taken enough meds to keep a whole footy team painfree and sleeping...but it just doesn't work...
Tonight is not a good night...
My body gets to the point of exhaustion and it just sleeps...
And sleeps...
While waking to severe pain, it eventually just gives in and sleeps...sometimes for half a day, sometimes for just an hour.

But even with sleep, the pain still exhausts me.

Today I went out for my brothers birthday lunch, fairly low key and minimal activity, but a couple of hours in...
I felt my leg start to swell up, start to burn, a deep, low, extremely painful burn...and I felt my body just go whooooosh...
I managed to get home, to cool my burning legs down in cold water, before falling into bed, simply exhausted.

Dealing with pain is like running a marathon some days: it is so exhausting, that lying in bed is wears you out!
The pain does not let up: it takes over your body and you give in
And when you do sleep, your body is working overtime to heal itself, that you never properly sleep, so you wake up exhausted.

Chronic Pain is so hard to explain sometimes but the one word that comes to mind is, that it is so EXHAUSTING!!!
To have pain spreading without your body, that does not stop, its hard work.

While I suffer from CRPS, there are so many other Chronic Pain and Chronic Illnesses that this exhaustion overload affects so many people. Please dont be judgemental that we need to sleep, sometimes a lot or at different hours, because sometimes it is all just a little bit too much. It's just not the same as a "normal life"

Its now 3.30am
I'm still awake, the burning pain is still burning.
I am still chatting to a few friends, new found friends around the world whom battle CRPS like I do - its a good distraction....
Hopefully sleep will come soon, I've tried two lots of meditation and failed so far, so fingers crossed on the third attempt!

Until next time, Kate

Monday, 30 September 2013

A little bit more about pain

Tonight, I was alerted to by friends to watch a Documentary on SBS called "The Secret World of Pain" - while turning over at last minuet to discover the documentary - it was definitely worth it!! While it doesn't touch on chronic pain until halfway through, it was absolutely intriguing to watch and learn from. Learning about the genetics behind pain, behind the brain works, the fascination of the unknown when it comes to chronic pain and what causes it, as well as how the body reacts to it and process it...if you're interested in taking a look, please take a look into a little bit of the painful side of our world! But very interesting to see whether or not that new trial treatment provides a long term relief for pain sufferers...will be following with keen interest!

I've had a bad flare up today, keeping me between bed and the lounge, exhuasted and in a lot of pain. Days of pain scores not going below an 8 are tough, especially when your legs are burning hot, with no way to cool them down. I've been doing a lot of more of my physio GMI tests to help with my brain retraining and it seems to be causing more pain and more extreme changes in the temperatures of my leg especially and causing temperature changes in my right leg too :( One minute its burning hot, then next so stone cold its purple! But at 1.30am, its a long way to go to sleep when you're in so much pain and your legs burning :( This is extremely frustrating while trying to stick to such a strict regime (5-10mins of tests every hour) and getting so many negative side effects from it. But I have improved on my reaction times and my accuracy, so that's one plus!!

I find music relaxing and calming, especially country music and acoustic music, so here's a favourite I've found - she is very talented!!

I've not written much in the last month. I've had a lot of different medical appointments, to the point of 3-4 a week, and I've had a close hospitalization again. I still need to sit down and write my story one day, until then I plan to start spreading the word of this blog to try and reach more :)

I've also started planning an awareness photo idea for CRPS to spread awareness of this disease and to help others! I have a gift with photography, so I need to do something with it! Still in planning, but I'm getting there!

Until the next post,


Thursday, 12 September 2013


So it says above, today is R U OK? Day...where indeed a conversation could not only change a life, but save a life!

While today might be the actual day to remind you all to ask yourself and your friends & family, are you should be something you can ask ANY DAY!

Mental health is often seen as a "hidden" and "black dog" of issues, but it needs to be brought out and supported more - which is why the initiation of R U OK Day etc has come to light.

Today, I started my day, at Chronic Pain Clinic, with an appointment with the Psychologist. Chronic Pain is a serious issue and it affects you in so many different ways, including your mental health. How one person copes with continuous extreme pain, exhaustion, loss of lifestyle and many more negative things is a huge continuous battle, so it is very important to accept help, especially those whom are trained in helping you to help yourself.

When the pain becomes all too much, after continued hours of extreme paid radiating through your whole body, when you're too exhausted to even just start to give in. Start to give in to those negative thoughts no one ever dreams of thinking. You just want that pain to end, sometimes it doesn't matter how. I cannot explain to anyone how and why these thoughts go through my head - it's not something I would ever even imagine...but when you are in that extreme pain for days on end, you end up in a deep, dark place of are not you anymore.

Frustration has been my biggest struggle. I cannot begin to even explain my frustrations - they are just too overwhelming some days. I cannot play the sports I love, I cannot get out and shoot as much as I want...or get to locations I want too; I have to pace myself, I cant just go and do the things I want to; I cant travel like I would want to; I cant be like most other 23yo's; I cant stop the pain, I cant, I cant, I repeats over and over. I cannot do normal things like I used to and I get so frustrated that so much in my life had to change - the many things that used to be my stress relievers...I cannot do anymore. How to deal with those frustrations? Well I learnt that throwing my crutches is a pretty good stress reliever hahahaha :P But I also learnt the great value of talking to friends, having a vent or three and just talking through my frustrations - learning to control my anger and frustration and just cope with it - not get over it - but just learn to cope with it as I go through the harder times. No one is invincible, we all struggle - just in different ways.

Talking with my Psychologist this morning, I was relieved to hear and know this was not just me going crazy, nor was I alone. It was great to talk to someone about it all in general, as well as discussing techniques to identify during flareups the moments where I need to implicate strategies to help myself cope. It is OKAY to talk to someone about this and get help, because even if you've got a chronic pain problem or even just struggling with family or work, it is normal to feel like you cannot cope in situations. You need to find someone who you feel comfortable with, this is extremely important, because if you dont, you wont be able to reveal what you need help get the help!

If not a medical professional, why not talk to a friend, family member or someone you can trust. My friends within greater circles, have been a huge influence on how I have dealt with the last 17months. Firstly when I broke my leg, going from a busy sporting and working photography absolutely nothing - it was heartbreaking. Whether it was coming around to see me, dragging me out for fun adventures - crutches/wheelchair in tow; late night conversations usually about anything and everything and even just a good laugh or two while catching up with team mates. I've certainly collected a strong group of friends from all different walks of life, all around the country, whom check on me weekly, if not daily. Who continue to drag me out on adventures, out for photo fun (carting my gear for me), for fun, laughs and a great distraction. To what some might even call - mental health just get out, be free and have fun!! To those wonderful people in my life, thank you!

I guess I haven't really gone into too much detail, but you can all get the gist. It doesn't matter who you are or what you do, everyone struggles at one point. So make sure, if you can see anyone in need, just reach out to them, talk to them, even if its about the bloody weather - it might just be the breaking point to something more bigger as they search for help!

My meds are slowly kicking in, while I deal with an aching body and type this left handed (ohhh not so easy!!) so I will leave you all tonight, but please share on with friends and reach out and help!!

xx Kate

PS...below is the numbers for helplines, I'm doing the normal spread out of information as all posts like these day, because I still feel like it's important much as a friend is to talk to! Sometimes you dont know how to say to a friend that you need help, so dont be afraid to reach out for help :)

Lifeline 131114
Suicide Call Back Service 1300 659 467
Kids Helpline 1800 55 1800
National Hope Line (Salvation Army) 1300 467 354
SANE Australia 1800 187 263
BeyondBlue 1300 224 636

And just sharing on a photo of my "peaceful place" - which I can access even on my crutches, it is where I feel so calm and at peace :)

Monday, 9 September 2013

One Bad Day

One Bad enough to make the strongest of people struggle...

One bad day, followed by another is even harder...let alone a full week, or two just never stops.

But when the days and weeks stretch into sleepless, painful and extreme discomfort...all night - it just seems like it is not worth it all.

When your bed is the only thing you see all day. When even a shower is too much discomfort, due to your skin being so hypersensitive. And you have to take your maximum amount of medications, without an overdose - leaving you in a zombie daze and feeling too sick to eat anything. Pain radiating through body, pushing a good 10 (on a CRPS level) in pain, leaving me in tears, exhausted and feeling terrible :( How is one supposed to live like this? How is that a good quality of life?

No one can ever explain the pain from CRPS, it is so different, that sometimes words cant explain it. But most of all, it never goes away. Pain medication only dulls it for a little while, meanwhile it's still always there. Some days, the medications just do not work, unfortunately this is part of the problems with medications. They cause terrible side effects, can cause addictions (thankfully which I have avoided so far), can cause health problems and they affect your quality of life....all this and only 30% of the time do they work.

When I had a very bad week last week, where for three days, I cried in pain, I didn't sleep apart from occasional naps caused by medications, I screamed out from spasms, I cried from exhaustion, I cried from the fact nothing could help stop the pain and I cried because I wanted it to just stop; to end. But it just wouldn't.

Sometimes, you can cry so much, the tears just don't come anymore...

You cannot imagine how much more pain you can deal with, you start to give into negative thoughts and you start to give up...because it all becomes too much.

I then struggled to deal with my family, whom see my pain and exhaustion first hand. They are struggling to accept that I have this disease, that makes me scream in pain, uncontrollable pain for days - yet there is nothing that will stop it. They cannot understand why or anything about it, so it's very frustrating. I cannot help around the house, do any driving or even get out of bed to accomplish anything. As much as it not being fair on me that I am sick, it's not fair on them.

Thankfully, at the moment, not every day is extremely bad for me. Last week, Monday-Friday was...and I suffered terribly. Friday afternoon I went out shopping and ended up collapsing at the shops, unable to move, the pain rippling through my body, exhausting me. I sat for an hour, trying to regain the use of my body, before I began a slow and agonizing drive home. Then all Friday night I struggled to sleep, the pain was just too much for me to deal with. Saturday I was at hockey, the one thing that can successfully distract from me it all. By lunch time I needed to double my pain meds, but 1.30pm while watching a game, I was in so much pain, I just lay on the grass and fell asleep. Only to woken by friends worried about me, but thankfully, I just needed a nap to help work through the worst of the pain. To continue on helping with teching games, with my right arm in a sling and ankle strapped up. To the fact it affected me so bad at hockey, scared me, because normally is enough to distract me...

In the next few weeks, I have numerous medical appointments with different doctors. At this stage I am having to reassess everything. My medication is obviously not helping as much as it could; I may be faced with another medication change. The medication I take for helping with aiding sleep is also not working, but I still need to sleep and I still need to be able to function. It will be an interesting few weeks as I try and work through things. I do not how some people have done this for years on end, I barely cope now and even though I got an official diagnosis in the first week of February...the CRPS has been causing issues since October last year, which is nearly 12mths on. How can people go on like this everyday, facing the unknown and facing so much pain.

Thanks to an online Facebook group, I came across this article and while it's extremely sad to hear about this, it unfortunately has brought out a horrid side of CRPS. Last week, they provided some amazing support while I battled a horrid time...on the brink of hospitalization, where even in hospital they cannot help really - the pain is just simply beyond medical help sometimes. I have some amazing friends whom helped me through last week. Including one beautiful friend sitting on Skype with me for 4hrs, watching me as I struggled in pain, trying to help distract from it all. You really do learn whom your real friends are during these times. The lovely hugs and people checking up on me whenever I'm at various places, really makes me feel like I am appreciated and understood, even though I'm sometimes very hard to understand.

Yes I like to write and explain all about this, because I want others to learn and understand about CRPS. Why sometimes I hide behind a thin smile and the "yes, everything is fine" - I do struggle, every single day, but I try to focus on why even though I have this terrible disease, there is the hope of me sharing and educating others. To help others understand, to help those struggling with the disease and to hope one day, medically they can help to find a cure. Together, we can, together we will.

While this post might seem it's aimed at CRPS, it still applies to all chronic pain illnesses, because everyday is a struggle, no matter what type of chronic pain. Please stay strong, talk to your friends, dont hide behind a fake smile, be honest and work with it!! STAY STRONG!

Love and Life, Kate

Monday, 2 September 2013


Why is this post about distractions? It's not because I can go walking down the local beach and get distracted by the good looking young fella's on the beach...its more about dealing with my health.

I need distractions in my life to take my attention away from my pain. To help me deal with the pain and to help manage it. The pain is always there, I just need that big enough distraction to keep me moving away from focusing on it.

For me, I have two distractions: Photography & Sports.

Sports have always been a HUGE part of my life. I follow just about every sport, I am a self confessed sportsnerd and passionate supporter of many sporting teams!! I own more sports clothing than I do normal clothes!!! So while some girls focus on labels of clothing or shoes, I just want the newest Qld Maroons polo jersey or Brisbane Roar playing jersey! I lose a lot of sleep trying to keep up with all my favourite teams, as they travel around world and some international teams that I follow!! And I'm the biggest, one-eyed Queenslander and Australian supporter (even when we failed in the Ashes cricket yet again!) And no, I dont follow sports because of the hot players (thats how I drag my friends along haha) its a passion I have shared with my Papa & my Dad, I just took it on and have gone completely sportsnerd!! When I eventually find a guy who'll put up with me, I do hope he likes sport, or he'll be getting used to it pretty quickly haha!

Up until I shattered my leg 15 months ago, I also played sport - particularly hockey and futsal (soccer). I was an active Division 1 hockey player, who went from defender to goal keeper when we needed it. My team have made the grand final for the 5 years I've played in the club, we've won two! One of which I coached from the sidelines last year, breaking my heart that I was not out there when the game went down to 5 on 5 sudden death!! I umpired, coached and did everything in between for my beloved hockey club. Then I broke my leg, I went from hockey 3-4 days a week, to nothing. Sitting on the sidelines with my leg elevated yelling out my support. I had to learn that playing was not an option, that even umpiring was out of the question. During summer off season comps I continued to try and get involved, umpiring on crutches with a cast on my leg, from the sideline, but it of course was never enough. Over the summer season, my leg got progressively worse, as the CRPS took over. It came to pre-season time and the messages and emails began to flow in, at the end of January I had to make the huge decision and say NO, I was not able to play this season. I cried for days following this decision. For someone who played games with more injuries than I could count, who played on despite anything, the tough lil bugger; this time, something bigger was stopping me. So I told everyone I was taking the year off, going to focus on getting better and maybe occasionally come down to watch some hockey.

But, hockey cannot leave me, even if I tried. My club, Nambour Blue Demons Hockey Club & a lot of wonderful people within the Sunshine Coast Hockey Assoc, have been the most amazing support one could ask for. While many do not understand why I am still injured or sick, they encouraged me to keep involved, so I did. I took a few coaching roles, took on helping on the committee and put my energy into developing myself off-field to learn and help others more. I challenged myself to learn and become a better coach, plan strategic coaching sessions, get my teams together at training and push them to achieve high: and they did!! I had to learn to turn my player brain into a coaching brain - it sure was a challenge! But every week, on Tuesdays and Saturday/Sundays I would put all my energy into getting out and distracting myself with a challenge. This often meant I spent many days in bed recovering, or I would get to training and be too unwell to take training, or I was on double meds, but it was worth the distraction, even for an hour or two. To watch the players I coached, mentored and helped, develop and achieve: this is one of my most proudest things in my life. It is worth the pain and is such a great distraction! I also was able to take on a bit of umpiring within the junior games, something I also missed, has been a great challenge to get my often slow brain and unreliable legs to go again, but the adrenalin works well at kicking it into gear!

While hockey is almost at an end for the year, I am looking at the chance of playing a low key, smaller & safe version of Summer Comp Hockey. While I still need to work this through with my Orthopedic surgeon (due to fractured bone fragments and defected bone chip on my Talus, plus the bone strength & metal work) I am hopeful and positive I can get out for a bit and hopefully get back into the sport I so love. If not, I'll be sure to umpire from the side on my crutches yet again!

My Photography is perhaps my biggest passion and my biggest push in life. I am an creative person and my love to grow within the industry continues everyday. I would love to get back to shooting full-time one day, but until then, I will take each day as it comes, each day I can pick up the camera and continue to grow!
I push myself too much to get out and shoot sometimes, which comes with exhaustive consequences, but it's always worth it :) I love to get out shooting landscapes, especially with other photographers for a catch up! But early mornings or late afternoon and walking even short distances to capture those golden hues of the morning glory are such a big effort. I have to pick my good days and often pull out last minute, waking up to an uncooperative body, but understanding friends helps :)

I love being able to improve and continue to grow my love for portrait photography, in so many different ways! I love to capture children, in family environments; especially within the beautiful natural environments the Sunshine Coast offers. I love working with pets, I am such an animal person, nothing is too big, too small or even too bizarre for me!! I have three beautiful dogs and a few birds myself. If I had the room and time, I'd have a small farm of animals for sure!! I'd love to get back riding one day, that's another big goal!!

Being unwell has cut back my photography big time. I often cannot walk, I often cannot carry the weight of my camera bag (which everyone who's been out shooting with me knows is NOT light) and sometimes, even picking up one of my camera's is a struggle. I have turned down my wedding bookings, unless they are friends, because I want to keep myself from overdoing it. I have discovered a love for mini-session photoshoots, where it's nice, quick and super easy, with lots of fun involved! Even though I can still have major flareups at any time, it's always worth a bit of pain to capture beautiful images. Hearing such beautiful words from clients and their friends, and creating my style.

I have also discovered the love of the photography world, making so many new online friends, from around Australia and even around the world!! Some now, whom I have met in person, becoming friends with bonds that will never break. Friends who I know I can count on at any time for a good rant or a good giggle!! Friends that understand the pain I go through, watch me struggle yet still love to tease and make me laugh!!! I also love the respect I have found from other photographers. I love to chat with anyone who will, especially photography. As a friend described over lunch one day "your eyes just light up and sparkle whenever you talk about photography, its just so you". I love to help others learn and grow, because it helps me as well. It also provides that distraction for me, to focus on something to keep my mine off the pain. Those amazing people who I talk to most days or nights, help me get through some very dark days, some very painful days and I cannot thank them enough. They will most likely read this, so thank you!

One day I will get around to writing my CRPS story, but for now, I'll ramble on while I try and think how to write it in a positive way to educate others!!!

On that note, its now nearly 3am, so it may be time for some shuteye :)

Just Simple Daily Tasks

The Simple Things in Life...

Simple everyday tasks have become such a battle, it often is too much. Some days are better, some days are just too much. Today I have had horrendous back pain, that extended down my legs, especially through my left leg and & foot and then up my back to my shoulders, affecting my whole body. It causes my body to spasm, to lose muscle control, to think slower, respond slower, meaning driving is not a safe option. The medication I am on, also affects this. I have had to learn my limits and accept these limits. Losing days where I cannot drive can be very frustrating. I am very thankful to have some wonderful friends and family, even if it means no "sisterly taxi" for a day or two!

A flight of stairs is enough for me to seriously question do I really need to go somewhere. If I need to walk a longer distance than a few hundred meters, I need my crutches, if its for a long time, I need my wheelchair. Just putting a pair of shoes on, can flare up my leg, causing extreme pain, burning throbbing pain and my skin will turn red and swell up. This can be a nightmare when even trying to do something so simple like shopping! Just because we don't have an illness that can always been "seen" doesn't mean we are not ill!! And the nerve of some people when out shopping!! Making out how much effort they have to do to move around someone in a wheelchair or make you move out of their way, sighs!!! That can be another blog post another day!

Today it is my Dad's birthday, I am cooking him a cake and dinner! While cooking is not my favourite past time, I cook a mean chocolate cake and as well a nice meal of steak, mash and veggies....all covered with gravy of course :) It'll be a great struggle to do this, but I have a moveable stool to which I can sit and cook from, reducing the stress on my legs.

Since I spend most of my day at home, usually between bed, the recliner and lounge on the back deck, depending which is more comfortable, I get left with some household chores. Unfortunately even hanging the washing out, vacuuming or washing up can be a huge struggle some days. Moving aching shoulders that stretch painful back muscles to hang out washing, can be one of the worse things. I often need to use a shoulder sling and wrist guards, just to move around.

Some days, I just cannot get out of bed, my body aches in extreme pain and I just cannot get comfortable or move freely. On those days, I stay in bed, drifting in and out of sleep, highly medicated as to try and ease some comfort. When my fingers are swollen and ache, even using a phone or ipad to try and cheer myself up, is a massive struggle. My friends all enjoy my jumble of letters that should be words and we laugh over it.

While medication helps to reduce some pain, it's not consistent in reducing all pains, nor the extreme aches and extreme exhaustion. Medication for Chronic Pain is usually NOT covered by PBS, making it expensive. Alternative treatments and medications are also expensive, life is not free and neither is genuine help!!

So next time you go to do a daily task, like washing up, driving your car, doing the shopping - just stop and think how someone with a silent chronic illness would go at simple things: it'll change your thinking! We don't want your sympathy, we just want you to understand!!

And yet, after reading all this above, people will wonder why we are struggling, still unheard by medical boards, the government or anyone really. All governments do is complain about the cost of medications and procedure treatments, yes it costs billions of dollars every year for chronic pain health...but that still does NOT mean we should have to live in the dark, struggling, being told that you're on a waiting list, you're on a waiting list, oh we'll trial this first, then this, then this, but its an 8 week waiting list to get into any of those!!! Why should anyone in Chronic Pain have to wait months on end, just to see a specialist and talk through a chronic pain plan. There are so little amounts of Doctors and medical professionals who actually care about Chronic Pain, to them, we say thank you, but to the rest of the world we say it's time to learn and realize it is real and we are NOT hypochondriac depressed people, looking for attention!!

Well, I'll continuing ranting another day, at another almost 2am time :)


Tuesday, 27 August 2013


Sleep is not something that comes easy, especially now as the disease spreads throughout other regions of my body. Due to hypersensitivity, I often cannot have even a sheet touching my leg, which rages between burning hot and freezing cold; constantly changing. Now that it has spread into my back and right arm & shoulder, I am finding it even harder to sleep. Thankfully, I sleep on facing down, so on my stomach, but this doesn't stop the pain.

Pain and heat radiate throughout my whole body, making it extremely uncomfortable and causing me to not sleep. I will often move from my bed to the recliner in the lounge or lounge chair on the back deck outside, trying to find a comfortable position even to nap.

I can be absolutely exhausted, not being able to keep my eyes open, when pain shoots down my leg from my back, spasming and burning throughout the leg and back. This is the most uncomfortable and unrelenting pain I cant even explain, it's just not good at all :(

Of course, severe lack of sleep then affects me. I cannot function properly and I struggle to deal with the pain more, due to my body not being able to rest. Although I take medication to aide sleeping - Chlonazepam, which is a Neurocontin Valuim like tablet, on top of my Gabapentin tablet, often it does not help with the sleep, just sends me into a super floppy dozey state of awakeness, where I cannot walk, I just fall over. Medications are the trickiest thing with trying to manage this disease!!! While I react to a lot of medications, trying to get it to a point of helping is hard. To get even 30% relief is good, but often its none. But I have nearly exhausted my list of options with medications, so far Gabapentin has the least amount of side effects, compared to I'll continue to use it.

So even though I didn't sleep last night, sleeping from 8-11am during the morning, my body still hasn't had that proper rest!! So if I dont sleep tonight, look out hahaha :)

Kate xx

Monday, 26 August 2013

Stay strong!!!

Just a few quotes I love, they remind to keep strong, keep positive and keep fighting on...with a smile!! xx K

What is CRPS?

What is CRPS?

CRPS is Complex Regional Pain Syndrome, it can also been known as Reflex Sympathetic Dystrophy (RSD). It is a pain disorder in the central nervous system that causes extremely painful, long term, neuropathic pain within affected parts of the body. It rates at a high 42/50 on the McGill Pain Scale, that's higher than childbirth - and it's long term, chronic pain, everyday!!! It cause extreme swelling, colour changes in the skin of the affected areas, hypersenstivity, extreme burning and extreme cold effects to the affected areas, muscle spasms and it is known to spread as well. Due to Neuropathic pain starting within the central nervous system and affecting the brain, it can also affect your short term memory, fine motor skills and your ability to function normally. CRPS is known to cause similar symptoms like Chronic Fatigue, with the pain exhausting the body and causing whole body pain and exhaustion, just wanting to sleep and not able to function correctly - medication can also cause this. It is a non-curable disease, but it can be managed!

For more information, please have a read through the links below!

There is so little knowledge and understanding of CRPS that is often misdiagnosed for many months between different medical professionals before it is diagnosed - this is what happened to me.

Well, so with a diagnosis, you can get treatment and heal it right? Well no, not always with CRPS!! Medication is often a first port of call in trying to get some relief, but they all bring nasty side effects. Often finding a correct medication and amount can take months. Then there are different treatments, some still in trial situation, some without guarantee of any success. While there is no clear cure for CRPS, there is hope for treatments as they develop with current research! Pain medication can only help reduce the effects to help manage, but let's face it: NO ONE wants to be on full time medication!!

Getting into a local chronic/persistent pain clinic can be essential getting the help needed. Including Physiotherapy, Occupational Therapy, Psychologist and Pain Specialists and others depending on the services.

Since I don't want to share others photos without permission, I'll share a few of my leg where it all started, just a few that are all okay to share, not too squeamish!! Swelling, discolouration and it means I am usually on my crutches fulltime, as well as on medications full time!!

Stay tuned for more, I'm determined to educated as many as possible!!!


Hello and welcome :)

I'm going to slowly enter the world of blogging, just so I can get to understand it all some more. I am blogging because I love to write, I love to help others and I desperately want to help spread awareness about Chronic Illnesses; in particular CRPS!

Why? Because no one seems to understand chronic illnesses and the way the affect you, the way you live and how there is so much still unknown in treatments and medications!! I want to silence the taboo's of: "its all in your head"; "you're just looking for attention; "you don't look sick"; "just tell yourself you're not sick" - and change people's perspectives about chronic illnesses. It's just not that simple!!!

I want to reach out to those who are affected by Chronic Illnesses, to share some laughs and funny stories, to share in times of tears and pain and to help sharing in the awareness of new hope. To share, educate and help others around us, including family and friends, as to the real side of the illnesses that try to take over our lives!

I suffer from a condition known as Complex Regional Pain Syndrome (CRPS) also known as Reflex Sympathetic Dystrophy (RSD) - and up until I was diagnosed, I had no idea what it was or what I was in for! No one can prepare for the pain or the changes in your life one must deal with, with something like CRPS. I will plan to blog my story one day, when I feel like, it's quite the lengthy story.

So I'll begin this blog and the journey of hopefully something bigger, better and greater - HOPE! I have this disease, but I also have the chance to help others, so this is my chance to start!!

Until the next post,

Kate x