“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?”
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.”
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. 🙂
Im mostly positive about my burn experience and it triggering CRPS, but one thing I cant let got of is my shocking initial treatment on the night I was burnt.
my experience at the hospital was disgusting. I was given Panadene forte ( Paracetamol 500mg & Codeine Phosphate 30mg) for my excruciating pain. No morphine, just a couple of useless tablets that would have taken half an hour to set in. I also had to wait an hour for the dr to arrive. by then I had collapsed from the pain and had hypothermia. He covered me in silverderm and got a lot in my eye, later found out it could send me blind. I should have been sent to a burns unit in Adelaide and instead he decided to keep me in over night and send me home to heal. I was also given not tetanus and not cleaned up. I was covered in soot, paint and burnt hair until I want home the next day, not cleaned up. I was black all over like.
Because of the pain they were giving me ice packs for my wrist. The rest of my burns were deeper and the pain had eased because the nerves were gone, but my wrist had some lesser burns that were agony until lunch the next day. I was bullied by the next nurse that came on because I was interrupting her night shift by asking for cooler ice packs. and by 1am i couldn’t take it any more and was screaming for pain relief. I was informed that they had to call and wake the dr and that it was incredibly inconvenient for them and him. I was given one endone (Oxycodone Hydrochloride 5mg) and told i wasn’t having anything until 9am and left to it. I managed a little sleep after this… but then I woke up. The Dr checked me at lunch time and had me wrapped loosely and told to see the community health nurse in 2 days. And off I went home.
I spoke to the community health nurse the next day and my dressings had fallen off and i was worried so she had me come in to see her. She was horrified. my arm was so swollen and my face was left uncovered and ugly. So she sent me back to the Dr and he was furious that I came in and that the nurse went over his head and sent me in. again I was told to go home and let it heal. The nurse had me in daily and by day 4 she had sent photos to the burns unit because it was looking horrible and i was starting to look bad. I was immediately put in the car and driven 350km to Adelaide and into the burn unit that night.
While I was in Emergency I was told of repeatedly for not going straight there and I finally broke. It wasn’t my fault. I was too sick to make decisions for myself. What did they expect? Because of this I missed out on initial care, my burns were considered a “dirty wound” and I was just sick from the infection. I had issues with proud flesh after surgery. I have scaring that I should not have had and I was blamed by medical staff in my home town for getting them into trouble with the burns unit. Oh and because of all this I had damage to a nerve in my hand and it triggered Complex Regional Pain Syndrome and have chronic pain through out my body and still cant work.
Im just angry because it wasn’t my fault and why was I put through this? I’m really pissed off. This is the part I struggle to see anything positive in. Why wasn’t I worthy of the care I needed. Why wasn’t I given pain relief? Why did I have to suffer like that? It just makes me angry!
Probably the worst bit about CRPS taking over your body, is knowing the fact that it is a progressive disease and no matter how much I hurt now, it’s only going to get worse! Last Thursday, I went to the Pain unit at the Royal Adelaide in hope of getting some help. I have noticed my feet getting worse and over the previous weekend I noticed the pain spreading past my arm and into my arm pit and breast. I knew it was time to get aggressive with my treatment because this beast is spreading fast.
My trip to the pain clinic was a little bitter sweet, while I got the treatment I wanted but I did not like the doctor. By the time I got to the entrance of the hospital I could barely stand. My legs were just too weak. I had easily done the same walk only 4 weeks earlier with ease. It was really scary not knowing if I would collapse every time I attempted to stand. The doctor was not at all interested in my legs. Once again I had a doctor that knew nothing about CRPS and was trying to bluff their way through. In his opinion CRPS only spreads in about 5% of cases (try 70%) and it was odd that I was having trouble with my legs when the initial injury that triggered CRPS was in my left hand. So in his opinion I needed a nerve block in my hand that would settle my hand. Now I want having any of this. It common knowledge that a nerve block would only benefit the effected limb. So I pestered the Doctor with enough questions that I knew he didn’t know the answer to and he finally offered me a Ketamine infusion. Exactly what I wanted! So in a few weeks I will be heading to Adelaide for the first of 3 infusions. Hopefully they work, even just a bit. In fairness The Dr did make a connection between My CRPS and the lack of care I got from my local hospital when I was first burnt. He immediately linked the infection in my burns to my CRPS. Good to know but I won’t dwell on that too much!
So it’s been five days since the trip to Adelaide and I have been in pain ever since. The pain has been mostly bearable until today, where I struggled to walk this morning and had to force myself to move because one of my horses needed a skin condition tended to. My babies have to come first! My arm is achy and sore and my soles of my feet feel like they have been whipped and walking on them is just hell. My lower legs and feet are also showing a change in colour for the first time and are as hot as they look. This morning was pretty crap. I just couldn’t get past the pain. The pain doctor gave me stronger pain killers to try. They don’t help the pain much, but they do take the edge off and numb the mind a little. I managed to bake a cake this afternoon courtesy of the meds.
I’m starting to fear that before long I will end up in a wheel chair and that is not ok with me at all. I’m not feeling sorry for myself, it’s just that I know I have done so well to keep myself functioning and I’ve done all I can to maintain movement and my ability to do the things I love. Hopefully this is just one big pain flare, but in the past month I have had only three days where I was not in a pain flare and that was because I increased my medication. I also know I have to wait to see what comes up with my MRI. My legs are not acting completely as they should with CRPS. There is no damage to my spine so if there is anything else, then it would be coming from the top. Multiple Sclerosis is possible, but who knows. If it is, horse riding is great therapy so that would soften the blow. But I guess I just have to carry on and wait for the MRI and to see a neurologist.
It’s strange really how my hand has been mostly controllable and this is where the CRPS started and there would have to be nerve damage thanks to my burns, yet my legs are giving me more hell. I could handle only having one arm in use, but no legs is just crap. At least I should still be able to ride my horses as I wouldn’t be putting weight on my legs. Hopefully the Ketamine helps to tame the beast. I really need something to go my way.