Burning Nights CRPS Support is a UK national charity dedicated to raising awareness of Complex Regional Pain Syndrome (CRPS)
DONATE
Latest Personal CRPS RSD Story - This Is My Story

CRPS Journey

2020-03-12

CRPS JOURNEY

 

In this CRPS journey we meet a lovely lady called Sharon, all the way from Australia. As you will read Sharon is an upper limb CRPS sufferer who has been battling this condition since 2008.

 

Here’s Sharon’s story:

 

My name is Sharon and I am a 44 year old Australian.

I was diagnosed with CRPS in 2012. I have CRPS in my left hand/arm, which has gradually gotten worse as time goes by.

I guess though, my journey with CRPS begins in 2008. I am a Cabinetmaker/Spray painter so working with my hands is really the only thing I know how to do. I am (or rather, was) very athletic up until my mid 30’s. I was a champion swimmer during my teens, played netball, softball & hockey.  You name it I played it. In 2008, I was working in the Wood Machine shop at a very reputable and busy Queensland furniture manufacturer. I was actually the only female who had ever worked in the shop and I fitted in really well with the men. I love football, Rugby League is my passion, but I also love sport and cars. In order to be able to work within a male dominated industry, I guess you have to learn to like “male”interests as well as have a thick skin. The men liked me because I knew more about football than them and I gave them good tips. I am tiny, 5 ft to be exact, & weigh 40kgs, so most people find me “too cute” to not like. It was Easter and I was using a Multi-Borer drill and needed to change the drill bit. Doing this requires using 2 spanners, 1 to hold the collet & the other to loosen the drill bit. For some reason one of the spanners slipped off and smacked me on the mid knuckle on my middle finger. It hurt like hell and almost instantly it was black, swollen and very painful. I looked at it, shrugged and kept going. I have an extremely high pain threshold, much to my detriment I think so a little pain was nothing really. I think that moment was the very moment I got CRPS. I kept going for another 45 minutes but when I looked at my finger I thought it needed seeing to by a Doctor. I saw a Doctor, had x-rays and no breaks or fracture, just a badly bruised bone. My finger was never quite right after that, it remained fairly stiff, very swollen and the skin always looked shiny. I thought the shiny look was because the swelling was so bad which was resulting in the tightness of my skin. (If only I knew then what I know now.)

 

CRPS Journey Sharon

CRPS Journey Sharon

 

In 2010 my middle finger had gotten to the point where it had developed a “swan neck”. That’s pretty much where it all went downhill. My hand surgeon who I have seen for years referred me to a rheumatoid specialist who was awful to say the least. By this time, my index finger was stiff, swollen and of course shiny and my ring finger wasn’t too far behind. I walked out of that appointment and burst out crying. I had sat through 45 minutes of hell with this horrible, horrible man who made me think it was all in my head. He would have said to me 15 times during that time “there’s nothing wrong with your fingers, just bend them”. The pain of having a simple muscle spasm was excruciating, imagine trying to bend my fingers. Ah no thank you. Well, needless to say I never saw that Doctor again after tests showed only a “Rheumatoid factor” in my blood not actual Rheumatoid.

 

So it was back to my hand surgeon where we decided to “fix” the middle finger. She did an Intrinsic Release and Synavectomy. The moment I woke from the operation I knew the rest of my fingers were “gone” as well. During surgery, they had tried to release the fingers by stretching and pulling them in the hope that once the 10 stitches came out I could do hand therapy which would improve movement. 2 weeks later the stitches had to come out and I can tell you I have never felt so much pain in my whole life. It was absolutely excruciating. The worst thing was I sat in that triage room watching all the other patients getting stitches out and it looked like a breeze. Getting mine out was certainly not. Over the next 3 weeks things went from bad to worse. My fingers were all stiff, so painful and my skin was so shiny I could almost see my reflection. I saw my hand surgeon and after chatting for a few minutes I said to her “my hand feels like it’s on fire, like it’s going to internally combust”. Well with that she mumbled something about CRPS and it being imperative to get me into the Pain Clinic ASAP. I was left sitting there wondering what the hell just happened. Of course while she was phoning the Pain Clinic, I was Googling. Well once I started reading I was astounded. Reading the symptoms of CRPS was something else. I was reading going “yep, yep, yep, ah yep got that one too”. I was devastated. I didn’t want that! After reading more I was convinced. I knew that CRPS was exactly what I had and obviously had for nearly 4 years.

 

CRPS Journey Sharon

CRPS Journey Sharon

 

Well it was off to the Pain Clinic where in January 2012 I met with my wonderful pain specialist Sarah. I walked in, sat down and she introduced herself. I saw her take a look down at my hand, which by now was horrendous to look at. She looked at me and her exact words were “well Sharon, no need for me to ask you any questions, you have CRPS” I guess just the look of my hand told the whole terrible story.

 

From that moment on Sarah and I have become virtually inseparable. I have the unenviable task of having the worst case of CRPS the Pain Clinic has had to treat. When it comes to treatment for me it requires a round table discussion with more Doctors than you could imagine. Nothing works, no drugs work, so for me it’s all “let’s try it and see”. My CRPS has been described as “refractory”.

 

In 2014 Sarah, my hand surgeon, The Professor of the Pain Clinic and a few more Pain Doctors decided with much discussion that in order to hopefully aid in the management of the CRPS, they needed to fix my Carpal Tunnel Syndrome. Of course the CTS was of a direct result of the CRPS.  The risks were obvious, we all know them don’t we? Surgery on the affected limb has a 95% chance of spreading the CRPS. It wasn’t a decision which was made lightly but we went ahead with the surgery in November 2014. I spent a week in hospital. My Doctors decided the pain of the CRPS along with the post surgery pain required a Supra Clavicular nerve block to be put in so for the week I was virtually pain free. I had no feeling from the nerve block and it was like a holiday. Of course the CTS surgery made the CRPS worse and spread it into my wrist, forearm and now it is travelling up my arm. They were the risks we all knew about but still opted for the surgery. I guess you’re damned if you do, damned if you don’t. To help the management of the CRPS we did the CTS surgery but in doing that it spread the CRPS. Yes the CTS has gone for the moment but the CRPS is worse. What’s worse?  My hand surgeon came to see me and gave me the bad news about my hand. She said that while under the general anaesthetic they tried to manipulate my fingers to find out exactly what function I did have. Unfortunately all my fingers are contractured so there is no function and I will never have function. My fingers are stiff and always will be. Finding out that was awful but in a way it was a blessing. It meant that all the effort going into trying to regain function no longer had to happen. I get terrible muscle spasms in my fingers and the pain takes my breath away it’s so excruciating. If I bump my fingers the pain is horrendous.

 

CRPS Journey Sharon contractured fingers

CRPS Journey Sharon contractured fingers

 

Right now I get Lidocaine infusions every 8 weeks. It helps take the edge off the Allodynia which is out of control. I can’t touch my hand or arm, can’t get it wet, have to cut the sleeve of my sweaters, can’t go out in the breeze, can’t cut my nails, the list goes on. On good days I can venture downstairs, on bad days I stay indoors. I also have horrendous blood circulation and now get Botox injections every 6 months to try to regain some perfusion in my hand. I usually have a “pain holiday” when I get the Botox injections. My Professor gives me a Brachial Plexus nerve block, slow release Ketamine infusion and a lovely week long stay in hospital. It’s the only time I am ever 60% pain free.   It’s nice that my Docs recognise the fact that I need a break from it all sometimes hence the week long pain holiday. Due to the cold weather and lack of blood flow to my hand, I get red spots covering my hand and arm which I have to keep an eye on. If they ulcerate Sarah explains to me it will be a “monumental disaster”. That’s enough to scare the living daylights out of me so I am very vigilant when I start to get the spots. Just brushing my hand causes horrendous breaks in my skin which look like burns. They take months to heal and again I have to be ultra vigilant. I also have a frozen shoulder, chronic tendonitis and have just been diagnosed with osteoporosis. All of which have been a direct result of CRPS obviously. The frozen shoulder will pretty much have to remain frozen because unlike “normal” people I can’t do proper physio or hydrotherapy because I can’t get me arm/hand wet. A cortisone injection every 6 months helps a bit. The tendonitis is more or less not a bother because I can’t move my arm properly so the sudden movements and jolts which inflame the tendonitis are quite rare for me. The osteoporosis is a worry but because of my age it’s impossible to be treated for it. The public health system only funds treatment for over 55’s due to osteoporosis being recognised as an “olderpersons disease. That unfortunately doesn’t help me because being 44 is a long way from 55. Imagine what my osteoporosis will be like in 11 years.

 

CRPS Journey Sharon

CRPS Journey Sharon

 

Day to day life has changed immensely obviously. I can no longer work so the mental stress of no longer “contributing” to our household is huge. Everything that came naturally before, I can no longer do or struggle to do. Everyday household chores take 10 times longer if I actually manage to do it. My husband works hard every day because he now has to subsidise the wage I no longer get. I do what I can so he doesn’t come home to washing, ironing, cooking, and cleaning. Doing what I can also helps me mentally because it feels like I have been able to achieve something despite the pain.

 

Of course I suffer from clinical and severe depression as well as anxiety and adjustment disorder. I guess they come with the territory. I have obviously and still do have suicidal tendencies. I think about it every day, there’s no point in kidding myself about it. Suicide has been at the forefront of my mind for years. Yes I have tried, yes I think about it every day. My psychiatrist once asked me the question about suicide, whether I had a plan. Of course I told her I did. I know exactly what to do. My response to her though was a surprise. I told her “Could I? Yes. Would I? No.” There is a difference she said and my answer made her feel better about my prospects of coping with CRPS.

 

Right now I see my pain doc, Sarah, my hand surgeon, a Psychologist, a Psychiatrist, a hand therapist, a Physiotherapist, a Dermatologist, a rehab counsellor and my GP. (I think that’s all) I have seen at least 2 of them each every week for the past 3 & ½ years. You know, as horrific as having CRPS is, it really hasn’t been a total catastrophe. I discovered something inside me that makes me want to fight like hell to survive. I discovered a strength I never thought existed in me. I was reminded of it and am reminded each and every day by my best friend Vicky. Without her I don’t think I would be here today. Vicky changed my life. She reminded me that CRPS did not and does not define the person I am and regardless of the CRPS I was still Sharon and still worthwhile. Vicky reminds me of that each and every day. She sees me as her best friend first then she sees her friend who has CRPS. She has made my life so much better and for that I am forever grateful.  I have also met some of the most wonderful, dedicated medical experts who have taken the best care of me. Care that I could never have imagined was possible. Some have even become friends. While being a patient of the pain clinic, I have met a wonderful fellow pain sufferer. (Pam has chronic back pain, not CRPS) Without her I wouldn’t have made it through some of the toughest times. Pam has made me see that I am not alone in the world that is pain. Many people suffer in many different ways. I think it puts things into perspective when you know you are not the only one going through it.

 

So I guess what I am saying is that having CRPS is possibly the worst thing in the world but if you can manage to look past it and see some of the good, the bad doesn’t seem so bad some days.

By Sharon

 

CRPS Journey - Burning Pain word with quote

 

Thank you so much Sharon for taking the time to write about your CRPS journey for Burning Nights. We know and can understand the sheer amount of effort and difficulty you have had in writing your journey not because of writing through tears but because of the CRPS being in your upper limb and it will have taken you a long time to actually type. Thank you for writing your CRPS journey!

Please feel free to share Sharon’s CRPS Journey on social media using the buttons below or make a comment on the blog. Would you share your CRPS journey with us? Contact us!

 

Last Updated: 09/07/2015

LET’S SPREAD AWARENESS of CRPS! Burning Nights logo

About the Author
As the Founder of Burning Nights CRPS Support, I want to help all those affected by this devastating condition which includes those living with CRPS, their relatives, partners, carers and friends. I'm also barrister, advocate & have lived with Complex Regional Pain Syndrome (CRPS) since 2003. I am also a bilateral (double) above knee amputee due to aggressive symptoms of CRPS. Please help spread awareness of this debilitating and life-changing condition - CRPS. We need your support!
  1. Amber Pocklington

    Hi Sharon, thank you so much for sharing your brilliant story. I was wondering if I could use this in my CRPS research for my dissertation? I am trying to raise awareness and look at chronic illness literature, as well as first hand accounts written by members of Burning Nights, to understand the lived experience of CRPS. Please email me on a.pocklington@warwick.ac.uk if you are happy for me to. I have a consent form which you can sign so that you remain anonymous if you wish to do so.

  2. J

    Hi Sharon
    Reading your comments with your experience of Crps onset …..it could be me 🙁
    I have seen a pain team and received a diagnosis and now me and my concoction of meds are by ourselves
    At times it’s unbearable
    Thank you
    J

  3. VICKI GALVIN

    Thank you Sharon for sharing your story, it’s a very brave thing to do. I’ve had CRPS in my foot for 13 years now, so I understand your journey. Sending healing prayers and gentle hugs to you dear.

  4. Irene b

    Just been reading Sharon,s story and what a story. I will Sharon all the luck in the world with her life.

  5. Christine

    Thank you Sharon for sharing your story. The time spent must have cost great effort. I hope the support I know you will get from the site will add to your strength to keep moving forward.

Leave a Reply

This site uses Akismet to reduce spam. Learn how your comment data is processed.

We Need Your Support

Please help us provide counselling to people affected by CRPS. Our help, services and advice are only possible thanks to donations from people like you. If you can, please donate now.

Accessibility