ADELAIDE CRPS EVENT: My Speech.

If you read my last post, you will know that I, along side 3 other CRPS sufferers, gave a talk on our experiences living with the condition, during Adelaide’s first Colour The World Orange event on Nov 6, 2017. It was a great event ad by doing this we were able to give the Drs, Researchers and students some insight into living with CPRS.

I decided to participate partly because I felt I needed a challenge because part of having this condition is that it has chipped away at my self-esteem and I felt I needed to push myself somehow to gain some back. I agreed without allowing myself to think about the fact that I would be standing in front of people who knew a lot more about the condition than I do. Add to that my speech became a big issue in the week leading up to the event. Damn you CRPS!!!!!!!

In the end I was so glad I was there and gave my speech. I started out so nervous that I stumbled through the first paragraph and then after that I was fine. After I felt I could do anything, but really what I wanted to do was do it over so I could do a better job of it. lol.

So here is my speech..

Hello, My name is Sarah and I have suffered from CRPS for around 5 years. My CRPS was triggered by a burn incident that left me with second degree burns to my left arm, hand, shoulder and the left side of my face. I was at my parent’s place where my Dad had a fire burning for doing a pre-summer clean up. I didn’t realise that a can of spray paint had accidentally been put into a box of documents that I had the bright idea of throwing onto a fire to get rid of. Unfortunately the care I received at our local Hospital was far from adequate and It was four days before I was sent to the burn unit at the old RAH and by then infection had set in and I was in a bad way.

Despite signs that something was wrong,  it was 4 months before my first pain flare, Suddenly my left hand and arm were swollen, stiffening and loosing movement. I had electric like pain shooting up my arm and down my fingers, as well as a crushing pain in my joints and bones. It was during this time that I started researching online and discovered CRPS as a rare complication of burns. I was diagnosed with CRPS the day before my 30th B’day after I took my findings to my GP.

After my diagnosis the condition took off quickly and within 5 months it had spread into both my legs, and soon after to most of my body from the neck down. My list of other symptoms is pretty long ranging and changes from day to day. These include insomnia, fatigue, forgetfulness, and speech, vision, hearing and motor issues.

Finding other sufferers online and in person locally here in South Australia has also helped me with support and advice that has been invaluable. Alone this is a very isolating condition. Through joining Facebook groups for CRPS, I was able to meet other sufferers in person here in Adelaide and we now have our own group with over 50 statewide sufferers. That’s CRPS South Australia if anyone is interested.

Another turning point was coming under the care of the Royal Adelaide’s Pain Unit. At that point, I was losing strength in my legs, my flares left me bed ridden and I was a general mess. At the pain unit, I soon started having Ketamine infusions for 3 days every 3 months and although the first time the relief was delayed and short lasting, it did quieten down my other symptoms. A friend with CRPS had advised me that it might be this way and to not feel disheartened if change wasn’t immediate. By my third round was having lasting effects and slowly with each infusion I have gotten more control over my condition. Aside from Ketamine, I treat my condition with Lyrica and Tramadol on a daily basis.  

I have also found that gentle daily exercise helps keep my pain and symptoms in check. I walk, use a stationary bike and do a mix of small weights, yoga and Pilates. This year I also started riding a bike, something I previously couldn’t do.

I am also a big fan of adding Magnesium to my bath about once a week. I find it relaxes my muscles and helps calms my pain to a level I can deal with, especially when I have over exerted myself.

There are things that I have found hard about having this condition. Initially it was hard explaining my situation and seeing the look of doubt or confusion in people I care about, Sadly I also found myself with only a few friends left.

Now after 5 years of CRPS, for me the fatigue that comes with my CRPS is the most debilitating part. I am now working a few hours a week, and to do that I need to plan my week around the rest I need before and after each work day.

Health wise, I have been diagnosed with type 2 Diabetes, an underactive thyroid and high cholesterol since my crps diagnosis.

Mentally the condition has been a struggle with periods of anxiety and depression, I have mourned over the life I have lost and struggled with losing my independence. For a long time I wondered if there was point to life with this horrible condition, especially if it stopped me from living a meaningful life. But in a lot of ways I have also been very lucky.  

Despite the negatives of having this condition, there are positives. Including the fact that I have responded so well to the treatments I have tried, the friendships I have made through this condition and the progress I have made in the past 5 years.

I have benefited from a positive living environment at my parents’ house, in the country where It is quiet; I have my cat and my dog for company and my two horses who get me out of the house each day. I have a veggie garden to potter about in on good days. Plus I am close to the beach.

Having a positive attitude is also essential for getting through this condition

I try to treat the 3 days of my Ketamine infusions as a little holiday from my CRPS where I can rest and catch up on my sleep, as well as being looked after by the wonderful staff at the pain unit. I have also had the opportunity to speak to student doctors touring the ward about my CRPS

Having a team of Doctors, specialists and practitioners who support me is essential to my care and initially that wasn’t easy. I now drive 100km to a GP because I wasn’t the help I needed in my home town because they did not understand the condition. That is why I feel events like tonight are so important.

Thank you all for listening to my story and for educating yourself about CRPS. Good night.

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Color The World Orange: ADELAIDE: Nov 6, 2017

November 6th 2017 was the 3rd COLOUR THE WORLD ORANGE day across the globe, Adelaide celebrated by lighting Adelaide Oval, the Torrens Footbridge, the Riverbank Precinct and  the Rundle Lantern in orange for the first time. According to the CTWO website Adelaide joined “Forty-nine buildings, bridges and landmarks in four countries, including Niagara Falls and the fountains in Trafalgar Square in London”

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Adelaide Oval and Torrens Footbridge lit in Orange for the first time.

As well as the lighting up of iconic Adelaide landmarks, Adelaide also hosted the first information event of its kind in Australia with the aim of creating awareness within the medical and research fields. The event was titled…

CRPS Mechanisms & Management:

What’s in fashion now? 

This event was a great opportunity for Members of the medical field to learn what it is like for those of us with CRPS and this was recognised by the organisers. Members of the CRPS South Australia Facebook group were invited to participate in the night by giving a 5 minute talk on what it is like to live with CPRS. I was happy to be one of the five who took on this challenge (It was a big challenge for me). Although only four of us were able to be there in the end, (that’s CRPS for you) we all explored different areas of living with the condition, but there were a lot of similarities.

Of course there were also talks by the Professionals. Prof Lorimer Moseley spoke of the new findings in CRPS research, Dr Velleria Bellan who was the instigator of the event(thank you) spoke of her research in Untangling visual and proprioceptive contributions to hand localisation over time. Also Dr Meredith Craigie spoke of her experience of being both a parent of a child with CRPS and also practising in pain medication and treating CRPS patients such as myself.

Overall the night was a huge success with over 200 people from both research and medical fields, Students and also other sufferers from the CRPS South Australia group. Possibly the best bit of the night was the food and wine supplied and also a GELATO CART!!! Yep that’s right, the event was supplied with a Gelato Cart with all orange colored gelato. YUM!!

A big thank you to the organisers and sponsors of this fantastic event and I look forwards to next years event.

 

 

 

RESEARCH PROJECT: Aussie CRPS Sufferers

This is something worth sharing for any Aussie sufferers out there. This came from the Australian Pain Management Association’s Facebook page. I’ve sent in for some more info. Lots of research happening in Australia at the moment.

Australian Pain Management Association 

RESEARCH PROJECT: CRPS. If you have Complex Regional Pain Syndrome (CRPS), you are invited to take part in a project to examine the impact that CRPS has had on your life. The researchers will investigate what it’s like to live with CRPS in Australia, what the impact your condition has on your life and that of your family and health goals. The research will identify strengths and weaknesses in current practice in Australia and will identify areas for improvement and reform. If you’d like to receive more information about taking part, please email secretary@painmanagement.org.au

IN THE MEDIA: Chronic Pain, 7.30 South Australia

“It is a common condition, patients suffer from it, doctors treat it but Medicare doesn’t acknowledge it. It’s chronic pain. But what causes it and why do traditional drugs seem to have little effect?”

pain 730

This is the introduction to a news story that was shown on our state edition of the Current Affairs program 7.40. Its really exciting that this show has done a few stories on Chronic Pain already this year and although not exactly about CRPS, It still relates back to the treatments and the health system that I and many other Australians rely on.

I posted about the first story here. Australia’s Pain Epidemic

This story by Mike Sexton and shown on 7.30 South Australia, on Fri, 21 Feb, 2014.  Duration: 6min 13sec. It starts as stated above and then leads into some horrifying, yet unsurprising statistics that Medicare (Australia) has found that up to 5% of patients in Gp’s clinics are seeking relief from Chronic Pain. It again mentioned that most Australian’s suffering from Chronic Pain wait 2-3 years for a placement in a pain treatment facility. This leads to Gp’s prescribing more and more opioid pain Medications and leads to dependency. Clearly there is a cycle here that must be broken.  I’m hoping that the Website will post a manuscript to this story as it has done in the past so that I can post it.

One exciting thing bit of information that I learnt from the story is of a local research project happening right here in South Australia at the Bionomics Facilities in Hindmarsh, is a focus on Ion channels and their role in Chronic Pain. The story went on to report of an investment of 170 million dollars (Aust)  being made into this study by Merck & Co. That is pretty exciting really. I went onto the Bionomics Website and found the following:

“Bionomics has entered into a collaboration with Merck & Co. to develop a novel oral treatment for chronic pain. Chronic pain is a severely debilitating condition with a large unmet medical need. Current analgesic medications which include anti-epileptics, anti-arrhythmics, opioids, NSAID’s and anti-depressants, are either ineffective, associated with a range of dose limiting side effects or have the potential for abuse and addiction. Our novel treatment which is expected to deliver greater efficacy and safety than existing pain medications is directed towards an undisclosed target that has been strongly linked to chronic pain in humans.”

www.bionomics.com.au/research-development/pipeline/cns-central-nervous-system

Well Im off to investigate further and see what else I can learn about this trial and even if I can participate in any way. 🙂