[strictlymyelomaParticipant]

Hi, I'm Jackie – Norman's wife and I wondered if anyone can help me.

I'm finding all this very difficult to cope with. I do not understand why he is in so much pain and nothing is relieving it. It makes me feel really useless as I cannot do anything to help.

I just do not understand why within the first week of chemo, the pain and lump in his chest went away but now the pain has got so much worse. First it was in various places in his abdomen but now it has gone back up to his chest. He is trying to convince himself thatit is muscular but I am pretty certain it's the myeloma.

The nurse said the pain was coming from his spine and radiating out to different places but WHY is it getting worse after so quickly getting rid of the original problem? It seems to me it is spiralling out of control and to be quite honest I am finding it almost impossible to cope.

I know it is selfish of me to feel this way. I wish I could be stronger but every time I try to be positive the situation just gets worse and worse.

Please could someone help.

[brochoParticipant]

Hi Jackie no wonder you are finding it difficult anybody would Its hard to give you an answer because myeloma is such an individual illness but a lot of us have ongoing pain due to bone damage .In my case I lost 2 vertebrae completely and had to have my spine stabilised with plates and rods , I have bone damage everywhere except my left arm However there is no reason Norman should be suffering as pain management is a big part of the treatment for mm I would ask for an appointment with either the consultant or speak to the specialist nurse to discuss his pain relief medication as soon as possible . I take mst morphine which is a slow release tablet ,each lasts 12hours , on top of that I have severodol for breakthrough pain When I see my doctor the fisrt thing we discuss is whether my medication is dealing with the pain there are several drugs which can help so Norman doesnt have to suffer You certailnly arent selfish I do think its harder for the people we love to watch us going through it but in time things do get easier though and life can return to some sort of normality . I really hope you feel you can post on here when you need to there are lots of lovely people to give you the support you need as well as Norman Please let us know how you get on love Bridget

[strictlymyelomaParticipant]

Thank you Bridget.
Do you mind me asking how long ago you were diagnosed and whether you have ever taken oxycodone – if so, was it better or worse than the MST you are on now?
It's nice to know I have someone who understands.

Jackie x

[MinParticipant]

Hi Jackie,
My husband was diagnosed in Aug last year. At that time he had dreadfull pain, could not climb the stairs, lie in bed, or do much of anything due to the pain.
It may take a little while fo them to find the drug that works best on his pain. Peter for instance found that oramorph gave him indigestion. He has the same pain medication as Bridget now. Occasionaly he stops it and takes tramadol for a while then goes back to morphine rather than increase his dose.
Has he had any kind of xray or mri to determine the cause of the pain? It may be that he needs something stronger, dont be afraid to ask, they will not think he is a wimp, they will understand and will be very sympathetic.
Dont just let him put up with it until his next appointment, deal with it before it gets out of hand. Life in pain is hard for both of you as you as his wife feel helpless. this is one of those times when YOU can do it for him.
Hope this helps
Min

[michelleakitt29Participant]

HI Jackie

My mum was diagnosed july 09, and she was in incredible pain, they tried all sorts of pain killers, she is now on methadone, it works better than any other pain killer, bone pain is one of the hardest pains to control,you need to just keep nagging the docs/consultants etc, have they referred him to the palliative pain team? they are the best ones for dealing with this type of pain.

with love michelle x x

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