Haven't posted much recently as softwear Jane is kaput and need new computer too. She has stopped talking to me and lost abillity to spell too. So apologise if I get big and bog muddled.
12 months after coming off Fentanyl and starting on the Oxycontin and Oxynorm road David has had enough. They have never really worked for him and in spite of increase in pain levels is stopping rather than trying an even higher dose. He already takes enough to fell an elephant.
For those starting on the pain relief path - a warning as to why your consultant will NOT start you on a higher dose. Your tolerance builds up and when in more mature years there is nothing left to give you.
Together with an interpreter he is seeing his GP tomorrow. GPs English is excellent but we want to be certain everyone understands what's what. What next? I have no idea. It breaks my heart knowing him struggle to get comfy in bed. To get some sleep and to walk anywhere around our home. Yes the weather does lift him bt it is short lived and he gets tearful that he is a burden. That is something he will never be.
I have heard there are meds to help with the expected withdrawal. No idea what as yet unless anyone else has heard of something? It will be a long road for him. For us. Oxycntin is known to be the mother of all buggars to come off.
Distraction will be hard too. His beloved trains won't be running for a while yet so I have asked him of he would like some fish. No not with chips but he could have some beautiful deep water ones. Fabulous colours and as anyone knows - if you have any animal they need looking after no matter how bad you feel.
So....lets see what Wednesday brings
Pat x
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I haven't replied to your posts before but have always followed them with interest. You often have wise words of experience to offer other forum members. Unfortunately I don't have any wise words for you, just wanted to say that for some reason I'm deeply moved by your post and wanted to express my sadness and support. You do a great job. I have chronic sciatica and I know how worried my husband gets, how caring he is when things get bad for me.
Oh Madlegs1 - he would be the first person to celebrate if coming off pain medswas an option, It isn't.
Comsultant changed from Fentanyl when he reached 100 patch. Any higher and he had no functions. But maybe now, with better climate, and he has stopped driving it might be a possibility.
Problem then when there is nothing higher to take. Oh to throw them all away and start again. We can but dream.
Hope you get your computer and program back up and working soon.Fish for David sounds a great idea, they are supposed to be relaxing. They seem to be bright coloured from your discription. When my sound went on my computer it had to go away, so I was without it for several weeks, hope yours is fixed quicker as it is your life line as you say. xx
Thanks Katie. New best friend is man in village whizz wih computers and making one as I write.
Had fish some years ago when he had a really bad time. It was a chore sometimes for him but he mostly found them very theraputic.Sadly had to go into rented and no room. Will they relax me too??!!
Don't have any medication advice I am afraid. Had I heard that switching round types of pain medication works as they are subtly different .Maybe Morphine or Fentanyl might work better since he has been taking something else. I dint know that Oxycodone was so hard to come off.
Fish sounds a good idea. Are there power cuts though ? I've bed memories of trying to keep a tank warm with jars of hot water from the tank. They have tropical fish in mental hospital wards. Enough said.
You are doing very well without Jane but I'd guess online communication will be pretty important to you. A priority even.
I hope the Wednesday appointment comes up with a plan
Hi paton I really feel for your husband as iam kind of going through the same.I have to wait till Friday to see if fentanyl or oxycodene but oxycontin I'm off as it was going through ileostomy bag.but the week I tried to reduce was awful but with me it's the dihydrocodeine I can't drop.as you say they can't keep giving higher doses as we have built up tolerance.I'm on 60mg oxycodone daily and 240mg dihydrocodeine daily.my pain is worse than ever.that dose helped in past I don't think I get anything out of taking it.when I try to stop I sweat and can't function and every day pain same,so I feel for david.ive been referred back to rheumatology. I also have underactive thyroid and the symptoms seem to be pain to.pain is terrible I do hope david gets relief I'll keep following and hoping for you both.hugs Ellie xxx
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