[GayeParticipant]

I had my RT for thoracic and lower back pain 3 weeks and as yet have had no relief. Will it or won't it work? All I know is that it is excruciating and has been for months. It has changed the quality of my life and I long for it to go.

I have been reading more than writing on this board lately and pain/how to deal with it has come up a lot – the main theme is that we shouldn't have to live with that sort of pain today. I agree but I am so reluctant to take painkillers because their side-effects are almost as bad as the back pain. I am confused have a scrambled brain to the point where I would rather put up with the pain. I still think we have a long way to go to get a pain relief that doesn't make us like zombies and out of this world.

They are my thoughts – not very cheerful I know.

Love to yo all. Gaye x

[adminKeymaster]

I had minor pain up to diagnosis, then with treatment it went away and the bones healed (I had about an inch missing from a rib). I think it was the steroids that got rid of the pain and the Bisphosphonates of course that led to the healing. i guess I'm lucky.

Does paracetemol work, or is it much worse than that ?

[KWilsonParticipant]

Gaye, I know what you mean about avoiding the pain relief because you don't want to be stones out of your brain but if you start off with a low dose and see how that goes, you do soon get used to it and it WILL help until such time as your RT becomes effective.

What, if any, pain relief have you tried so far?

I'm on Oxycontin, 10mgs, twice daily and they haven't zoned me out even from the beginning.

When I was first diagnosed, I was given high doses of morphine straight away (and I did need it) but at first I was totally on another planet and having ahllucinations (I wouldn't want to take anything like this for recreation that's for sure!) I did get used to it and fared quite well later on with the Fentanyl patches until the pain subsided. Mind you, I did need to wean off the patches VERY slowly so's not to get withdrawal too badly – glad my Macmillan nurse was savvy and advised me well on this point.

xxxxxxxxxxxxxxxxxx

[brochoParticipant]

Dear Gaye no wonder you are cheesed off you have been in agony for such a long while now. I do hope the rt starts to relieve it soon . I agree with you about pain relief though it seems to be hit and miss in some areasIn the days fo;;owing my op I was on Oromorph but I wont take that again as I couldnt stay awake longer than 5 mins I have found mst very good , although it does take some juggling to get the dose right when there is any change. have you tried them? I really hope you get some relief very soon Gaye and I am sending as many positive vibes your way as I can Hang in there we are all willing things better for you love Bridget x

[MinParticipant]

Oh Dear Gay,
Don't worry the RT will start working soon, Peter's dose took about 6 weeks to be effective.
Now he takes 50mg of tramadol and 20mg of mst when he needs it. This is for new fractures and has to wait for his Kyphoplasty for a while.
But he is able to function and drive and work(albeit for 3hrs a day) though he is unable to at the moment as the Revlamid is playing up with his immune system.
I know its awful taking more tablets but its about quality of life.. The pain is obviously making you feel miserable and pain relief of the right dose and quantity can make it more bearable until the RT works.
Hope your feeling better soon
LuvMin

[GayeParticipant]

Thank you for all of your lovely and positive replies and I shall digest them. It's not helped by the fact that I am sill waiting for the polmalidomide to be delivered to the hospital before it can be sent on to me. I have already missed one week of treatment and am not keen to miss a second one. Hopefully today.

Regarding pain relief I got addicted to fentanyl patches before within almost no relief and like Bridget I long stopped taking Oromorph for the same reasons as herself. Min you have boosted me about Peter's
6 weeks and I shall hold on to that – I am only sorry he is in pain again waiting for a kyphoplasty.

Once again thank you dear friends
Love, Gaye xx

[zasrsParticipant]

Hi Gaye

so sorry to read that you are still suffering from such wearing bone pain, I hope that eventually the Rt will kick in as Min has said
Gordon takes tramadol 2 x daily 50mg mainly because he needs a new hip due to osteo arthritis not mm and he does not seem too spaced out!! he drives, works sort of, but tramadol does not suit everyone.

Hope things improve.

Sarah xx

[tinkerbellParticipant]

Hi Gaye,
I hope that they've managed to get your drugs sorted as this is the last thing that you need on top of the pain you are suffering. My femurs are getting more comfortable every day following my RT which is six plus weeks now. I also have taken tramadol 50mg as required for pain and found it to work quite well. Fingers crossed that the treatment starts to relieve your pain soon.xx

[GayeParticipant]

Hello Pamela – thanks for your information and I am so glad your bone pain is now under control. Tramadol has long been ruled out as it contradindicates with my anti-depressant drugs. You win some you lose some! Thank you anyway Pamela.

Love, Gaye xx

[BADGERParticipant]

Hello Gaye

I am so sorry your pain has not gone away I hope the RT soon begins to work
you must worry a lot about the drug not turning up I dont think these people realise what it really means to people like us you can do without the worry lets hope things get better soon.
Love Jo 😎

[eveParticipant]

Hi Gaye
I know i am fairly new on here and my partner Slim is only on his 23 day of ctd,I do not understand why everone seems to be on different pain relieve.I am concerned how much Slim takes although hospital is very pleased with progress he was taken off tramadol put on 10 mil of morphine a day plus paracetamol 500.This controls the pain to average,its the steriods that give him good quality of movement free from pain.

His thalidomide has been upped to 4 tablets of 50mg from 2.We know he is in the third stage although the hospital tells us there are no stages!!!!!.I must admit to being [ are you telling the truth] although I would not voice my fears to Slim,I try to be positive,and just do my best to keep him in a good frame of mind,Is it me that has a glass half empty eve

[Author]

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