Post-mastectomy Pain Syndrome

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Hi, can I first send my good wishes to everyone as you face your challenges.  I haven’t posted before as felt I’d had an easy time of it compared to what many of you have gone through.  Now I’m having a lot of pain and wondered if anyone had experienced a similar situation.  My cancer was caught early due to routine mammogram, I had a single mastectomy without reconstruction a year ago, no radiotherapy or chemo needed.  I was on my own so looked after myself right from arriving home from hospital and didn’t experience much pain, just some discomfort, with steady progress in raising my arm etc.  Suddenly at 5 months I got a lot of pain in the former breast area, a mixture of it feeling like concrete with a dull ache, sharp pain at the underarm end, and then stabbing pains.  It was intermittent, the only connection I could make to anything I’d done was driving. Around this time my other arm and shoulder began to feel the effects of having done the work of both sides and I also have a stiff neck.  After speaking to my BCN I saw the consultant, who checked the area and explained that pain was normal, just part of the healing process and may continue for up to another 18 months.  I have ME so any healing does generally take longer and I accepted that.  Seven months on it’s no different, and I had an online chat with a Macmillan nurse, who after eliminating some things sent me a link to research Post-Mastectomy Pain Syndrome.  Briefly, this is where there is tissue or nerve damage, there’s no simple treatment for it and it may or may not get easier.  I’m already managing several chronic conditions, 2 of which are also painful, so I have strategies I can use and prefer not to take any strong drugs. (Paracetamol doesn’t have any effect on this pain.)  My attitude is to do all I can to ease them, accept them and then get on with my life, I don’t want them to take over.  I just thought it would be worth asking if anyone had found ways of dealing with this which I might not have thought of, and also any solutions to the problems caused by driving.

  • Thanks for that tip, I bought a heated throw last year for when heating not on, hadn't thought to just wrap it round one leg at other times!  Heat works better than cold for me.  Best wishes for your Christmas and let's hope for better health next year.

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