A change is as good as a rest……………..

………………………….or so they say. I am hoping that having met with Lorraine the Specialist Nurse at the pain clinic last week I am hoping that this will be the case. I cannot remember the last time I felt truly rested, probably the summer of 2002, although if I can remember back that far I far I probably was burning the candle at both ends for a different reason even then. Nonetheless we spoke about the pain medication I was currently taking and the amounts and the pain relief versus side effects ratio.

In an ideal world I would like to take just enough meds to lead a relatively normal lifestyle for me, so one where I am in control of my pain, and through using all the tools at my disposal from the chronic pain jigsaw, exercise, mindfulness, support, aids etc etc I can work, start to enjoy some quality family time and unlimited days out without any impact on my pain and even socialising with mates again. You never know maybe even enjoying a beer again……..mmmmmmmm I can almost taste the refreshing cool crispness now! The truth is none of us live in the ideal world, if we did it would be a much less harrowing place with more fun and laughter and less war and terminal illness. So for me I am just hoping that my pain will reduce and my daily function will increase from what it is now.

I have over the past months been experimenting (under the watchful eye of my pain team, not just willy nilly) with reducing my meds one by one and recording the results on my pain and my function. The worst side effect for me is the affect the meds have on my mind and cognitive function. It is frustrating being mid sentence and losing the flow of a conversation or blog as you cannot think of the word that you want to use. Having a memory like a sieve, when you used to be able to remember the phone numbers of mates homes that you called pre mobile phones and electronic address books, or seeing someone and knowing you know them but not being able to remember their name, starting to cook and finishing when the smoke alarm goes off because you forget you started. The most likely culprit for this is my Pregabalin which I take a high daily dose of, we tried reducing the evening dose initially for a two week period and this was followed by reducing the morning dose by 25mgs the same amount and less than a 10% reduction overall. This reduction helped with my muddled mind slightly but any improvement in it was massively outweighed by the increase in pain and reduction in daily function. Strike 1.

Next we looked at stopping my anti inflammatory which caused severe stomach and bowel issues (partially controlled by an antidote drug), this caused me to have increased muscle spasms and even more sleepless nights as a result Strike 2.

To combat the increased spasms we tried increasing my nightly anti spasmodic Amytriptaline a further 10mgs this caused me to wake incredibly exhausted and unable to keep awake and with such a dry mouth it felt like my gums receded overnight. The wife wasn’t too keen on the level of increased snoring either! Strike 3

Fortunately unlike baseball this doesn’t mean I am out. We were left with losing two tablets and introducing one by means of Diazepam. This is a very good anti-spasmodic drug but not one that my pain team are keen for me to stay on for long periods as it has a very high dependency rate meaning you can quickly become addicted and suffer withdrawals if you miss doses. They would rather if I can dip in and out of using this based on the number and intensity of spasms I have. Watch this space as I will only be able to assess the effectiveness of this, counterbalanced by any withdrawal or dependancy over the coming months.

Besides my paracetemol that I take to aid the opiates being broken down and absorbed into my body I was only left with this as another possible change. To bring you back to the beginning of the blog it was at this point that I found myself reviewing everything with Lorraine at the pain clinic. When I told her how much tramadol I was taking she was surprised. She said that’s over the recommended daily dosage. This surprised me because my doctor had checked her meds book and given me the maximum dose and I explained this. Lorraine then explained that it was in excess to their recommended amount because anymore and they considered it to be ineffectual treatment. She did some funky calculations to work out how much morphine I was taking on a daily basis and then converted this amount to Methadone. My new opiates. Following this Lorraine gave us (my wife attends as if not I forget far too much, heck in the distance it took from meeting her to walk to her consultation room I’d forgotten her name and spent rest of the appointment calling her Laura) lots of literature to read and details on how to start the new med, complete with when to stop taking the old ones. A list of possible side effects and areas of concern were talked about that included one that if my wife is to notice she is to seek immediate medical attention eek and the dodgy days of the transfer. I am to call the Pain Management Clinic on the day I start taking the methadone and they will organise some telephone consultations to discuss side effects, benefits and any change in doses needed. So we enter a new stage in my pain management, I hope in the coming months I can report some improvements, I guess the only way to truly know will be to continue on my journey through this blog. Lets hope for some good news!

5 thoughts on “A change is as good as a rest……………..

    1. I will keep everything crossed that you make it to the clinic in Sydney, mine in Norwich has been a life saver. Not so much what they have been able to do as it is limited and the pain will always be there, but the changes we have made in my meds, my head and the fellow spoonies I have met who are now my friends, they’ve been a huge support for me.

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