18-month update since coming off Decapeptyl:
Some overall improvements and one quite striking discovery
The hot flushes, accompanying arm pain and general debilitation have at last eased somewhat, to the point where they now only impact during the early hours and just occasionally at other times. Energy levels are returning to normal and it feels like bliss!
But the striking discovery concerns the arm pain. Up until fairly recently this side effect has been inexplicable. Whilst it is listed on the leaflet along with leg pain as being 'fairly common,' neither my onconologist nor anyone on forums like this discussing the side effects of decapeptyl had ever come across it.
Interestingly my oncologist recently reported that my testosterone levels had returned to normal. He said this means any symptoms I continue to experience, including arm pain, could not possibly be related to Decapeptyl because all trace of it should by now have cleared my body. I asked whether he felt my symptoms must therefore be psychosomatic, but he declined to offer a view, suggesting instead I contact my GP.
After undergoing various tests and scans and getting nowhere, I decided to do a bit of research online. It was not long before I came across a really compelling video in which medics explore in depth how the brain may respond to anxiety and fear (something I confess I've been particularly prone to regarding HT) by using actual physical pain as an alert ahead of any associated risk factor.
The video's authors, Dr Rangan Chatterjee and Howard Schubiner, emphasise the importance of recognising that psychosomatic pain, far from being 'all in the mind.' is real physical pain and every bit as real as pain caused by injury or defects in the body, and that it probably lies behind long-term illnesses such as ME/ CFS, Fibromyalgia and a range of other chronic illnesses including long COVID.
So it seems quite possible that this is the way my brain has been behaving in relation to the arm pain. The clincher for me is that the onset of the arm pain always preceeds the hot flushes by a few seconds, suggesting that this is my brain sending out a warning signal that my body is about to suffer. It's as if the brain knows I am anxious about coping withthe effects of the drug and needs me to go into seige mode, ie take rest and avoid attempting anything that might tax my body too much.
The video outlines a range of stratagems and exercises designed to coach the brain into accepting there really is no danger. Techniques include somatic tracking, mindfulness meditation, yoga or even just smiling and thinking about sunshine and happy times whenever the pain begins!
I have been employing some of these techniques for a couple weeks now and whilst not yet able to prevent the onset of arm pain am at least able to reduce its intensity.
But my biggest take-away from the video is the hope that I may, over time, learn how to tame the chronic arm pain enough to submit myself to another round of the dreaded Decapeptyl injections - something my oncologist will no doubt be urging on me next February if as expected my steadily returning psa (up from 1.9 to 3.5 since July) exceeds the 5.0 trigger he has set.
Not sure I'm allowed to post a link on here but this truly captivating video, which already has 2.7m views in less than a year, can be found on YouTube by typing 'The best ways to heal chronic pain and trauma without medication.'
Edited by member 04 Nov 2024 at 22:35
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