On Friday the 8th of June I woke up with a really stiff neck and a bit of pain in my back. Nothing particularly out of the ordinary, as I'm used to that sort of irritation given I spend 8 hours a day, 5 days a week sitting at a desk and mostly on the computer.
It was Saturday morning (around midnight) that I woke up with a VERY sore neck and back; somewhat more painful than I'd experienced before. I couldn't get back to sleep for hours and ended up only sleeping for around 4 hours that night. This was repeated Sunday night and Monday night, with both days pretty much written off with managing my pain with the ibuprofen and panadol I had at home. Heat packs seemed to sooth it slightly, but not much. The pain just got worse and worse each day; unrelenting sharp pain.
I went to the 5 Star Medical centre on Tuesday first thing, only to be told by the useless doctor there it was stress and I should relax. He gave me a script for some stronger NSAID (non-steroidal anti inflammatory) and Panadeine Forte.
Took these and they didn't work. I went home and straight away booked in to see another doctor as clearly the first one was incompetent.*
On Wednesday the 13th of June I went to Waniora Parkway medical centre and the doctor there examined my neck and spine and ordered x-rays and blood tests. He also gave me some stronger pain killers - Endone, plus some stronger NSAID.
He also created a care plan for me, meaning I could have 5 free physiotherapy sessions - initially he made it out for 3, but asked me to hold off on going to physio until he'd seen the xrays.
I went for my x-rays that same day and had the blood tests the very next morning. Meanwhile the pain killers had completely blocked up my digestive system - concrete!!
Also, the pain killers were not working. During the day I was basically taking them, then counting the hours until the next dose. Plus using heat packs at all times. Usually, as the next dose time approached I would have to have a really hot bath to ease my muscles and distract me from the pain. Walking around helped - couldn't sit, or lie down. Problem was, through lack of sleep I was exhausted so walking/standing was difficult too.
I couldn't sit down as this put pressure on my mid back and the pain was incredible. I couldn't lie down as this put pressure on my neck, and the associated radiating pain that went down my left shoulder and arm was like fire - completely unbearable.
This has meant that from the 9th June through to the 26th of June I was averaging 3-4 hrs sleep a night - broken into 45-60 minute chunks. In between those chunks of "sleep" I would get up for an hour or so and do the exercises my physio told me about, reheat my heat packs and basically breath throught he pain, and wait for the agony to subside enough that I thought I might get back to sleep for a bit.
Most of the time in the first 2 weeks I was in tears from the pain, and exhausted from lack of sleep. I also completely lost my appetite and started getting nausea nearly every day.
I foolishly thought I should attend my annual conference in Sydney on the 18-20 of June as the Endone was starting to take a small amount of the edge off. That had to be called short as I ran out of the Endone while there, and went through withdrawal, plus the pain was excruciating - couldn't move off the bed and walking was a challenge. Came back to Port on the Wednesday and went straight to the hospital where they gave me more Endone. This took the edge off that day.
I went to the doctor the very next day to get more pain killers. He gave me some more Endone, however once that script was up I stopped taking them and went through withdrawal again, as I'd read about them on on the Internet and didn't want to keep taking them. They are highly addictive - and they weren't working anyway. Despite being the highest pain relief other than morphine they weren't doing anything for my pain at night.
I shifted to Panadeine Forte (paracetamol and codeine) and have been on those every since. They also didn't help the night pain, but at least they aren't immediately addictive.
The Dr's at the hospital, after seeing my x-rays, have recommended I see a physio, so despite my doctors reluctance I went to the physio the next day.
The physio informed me that I had probably gotten a bulging disc at C6 in my neck and some severely inflamed vertebrae in my Thoracic area as well. This has meant that the areas of my back that would normally support another area in distress are themselves out of action and as such nothing is healing. In fact they are all gradually getting worse - almost spiralling, or feeding off each other- hence the radiation and increasing pain down my arm from my neck.
The last 3 visits to the physio have been focussed on my neck and have at least halved the pain there, allowing me to lie down again without actual agony. This has meant I have been able to get around 2 hours of sleep in a row. He says this is because the treatment has allowed the cause to be reduced, and "localised" the pain - which according to the textbooks is good - it's bringing the pain back from the extremities and close to the source of the problem.
Meanwhile my Dr has been focussed on my blood tests rather than the pain in my spine. He seems to be focussing on eliminating serious problems (cancer, osteoporosis etc etc.) rather than treating the likely problem the physio has pointed out. He has basically ignored the report the physio has written up.
I have low Vitamin D, low Iron and initially some low kidney function. A second blood test shows the vitamins I'm taking have helped the Vitamin D, and the kidney function has improved, however my Iron is still low.
This is likely because I didn't take the tablets as I've been constipated for 3 weeks. Not to put too fine a point on it, I've gone number twos 3 times in 3 weeks. Not good. This is while taking the maximum dose of laxatives prescribed.
I've also gone for a bone scan, not sure what that's for - the Dr seems reluctant to tell me what he's testing me for so as to "not worry me". Which seems patronising and confusing. It's been difficult to deal with him as the amount of pain I'm in, and the lack of sleep I've been getting has affected my thinking and made it challenging to push him on his treatment.
As soon as this is over, I'm getting a new Dr. My main concerns:
- He didn't want to tell me what he was testing for
- He seemed indifferent to the pain, and indifferent to the fact I wasn't sleeping.
- He kept telling me to make sure I was going to the toilet and seemed confused when I told him I was trying, taking the laxatives and they weren't working
- He didn't believe that Endone was addictive and shouldn't be just stopped, but needed to be tapered off (despite the manufacturers website stating that in bold) - he suggested I was "allergic" to it
- He was focussing on my blood test results and seemed confused about why my iron was so low. He muttered something about perhaps I was bleeding somewhere
- When I came in to see him the second time he didn't remember me, and I had to explain all my story again
- He still doesn't know what's wrong with me - he says there's a lot going on and he's still trying to figure it out
- He didn't realise the bone scan would cost money
- He criticised me for not remembering what the name of my medication was, "come on you're not 80 years old" - I replied that my brain wasn't working because I WASN'T GETTING ANY SLEEP
- He seemed completely indifferent to the fact I'm not getting any sleep at all - I don't think he understood what I was saying
I'm starting to sleep for longer than an hour or two at a time. For the first time in 3 weeks I slept for 4 hours in a row last night. I woke up twice but was able to do my exercises, rub some Nurofen Gel into my arm, shoulder and neck and get back to sleep. I have had 7 hrs sleep last night, and that's the most sleep I've had since this started. Taking a muscle relaxant at night to help me get to sleep. Not sure how much this is working.
Still constipated but hoping that a double treatment of two types of laxatives will work today (they did a bit yesterday).
Pain is manageable during the day with Panadeine Forte and NSAID.
Getting my appetite back - actually starting to notice that my stomach is growling - however couldn't really care if I ate anything or not.
On the days I have the physio, I have no problems with managing the pain (by which I mean it's always there, but heat packs and exercise and sitting correctly and moving around a lot keep it at a bearable level). I even have to check the clock to see if I should have taken my pain pills. This has only been in the last 4 days.
On the days without physio, the pain is worse and I'm counting down the hours until I can take my pain meds - usually in the last 2 hours between doses.
At least I feel confident that the physio has figured out the right treatment. At this stage I'll be having physio 3 times a week until this is fixed.
Now my brain is working again, I'll keep documenting my progress.....
* subsequently found out that everyone in Port knows this Dr and never goes there unless there's not option.
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