[JohnoParticipant]

Good Morning
It's now Sunday 3rd November at 0900. I started the Myeloma X1 Revlimid course last Wednesday morning, all OK so far really apart from my severe back pain. The X rays, MRI etc showed pretty good bones really apart from 2 fractured vertebrae and a broken rib (healing). I was hoping to start on the bisphosphonate drugs at the same time as the Chemo but the Doctor wanted me to get my teeth checked out by my dentist first and my appointment with the dentist is not until next week. Problem is that the pain is so severe now that I can't see me being able to get out of bed soon, certainly will not make it into a dentists chair!
I am on slow release Morphine Zormorph, 4 – 10 mg tablets twice a day, so 80 m&s a day.
Paracetamol 2 500 mg tablets 4 times a day.
Liquid morphine 5 MLs up to 6 times a day.
And I'm still in intense pain, I can't really see what I can do to counteract the pain.
Anyone any idea what should happen next? I guess if it gets to the point that I can't move, as in get out of bed or off the settee then I'll end up in A&E, but is there any alternative? Would the bisphosphonates help?
My next appointment with the hospital is until the 12 the November and they are really only looking at the Chemo treatment rather than the back pain. I was hoping to hear from another department of the hospital but nothing as yet.
Any advise would be greatly appreciated.
Thanks John

[eveParticipant]

Hi John

It is important to get your teeth checked out ,but also Zometa will not cure your problems overnight,you will have this pain for some time until chemo starts working effectively .
You are on some heavy drugs,which have to be taken correctly to get the best relieve ,morphine zormorph dose 40m,plus liquid,and paracetamol . If you take the paracetamol with the morphine tablets it makes them more effective,if you are having to use the liquid as well,the tablets are not doing the job they should be doing,most people would be very lethargic with those quantities.So I would see your GP or ask to see a pain doctor.
If you are trying to do things,like lifting heavy things,or car journeys,or even light work,then you should stop,rest but walk about,your body will improve given time,I know it's not the answer you are looking for,but like everything time is a great healer.
My husband could not lift anything,and was in so much pain on car journeys,even just standing caused pain,so you have to listen to your body,rest when needed,and walk about to keep muscles in your back working.Eve

[tomParticipant]

Hi John

Am sorry to read your in severe pain I am sorry I cant add any advice but am sure Eve has covered it all, Hope your soon sorted

Tom Onwards and upwards

[JohnoParticipant]

Thanks Eve and Tom, I guess things will work themselves out in time. If the pain gets so bad that I can't move at home then it will be A&A, hopefully not though. Eve I'm not actually doing anything at the moment, can't even lift a cup let alone anything else. I am however trying to walk around the house carefully just to keep myself mobile ish. I think you're right, listen to my body and try to adapt to suit if I can. Things can only get better.
John

[bandityogaParticipant]

Hi John

I would get your consultant to check if you have compression of the spine. My husband was in terrible pain in his back and demanded an mri scan and they found a tumour . When he started on the dex he started to lose mobility as he had broken vertebrae and the tumour was holding up his spine. Had to get a spinal operation to repair spine.

Maureen

[mhnevillParticipant]

Hi John

I would have said the same thing as Maureen. When I got as bad as you describe it was because I had a plasmacytoma which had wrapped itself around one of my vertebra and compressed my spinal cord. How the Consultant diagnosed was tapping my knee, like they do with a sugar hammer. You could try this yourself. If no jump you may have something to worry about. It is important to check this out as soon as possible because if you completely lose mobility,if it is compression, you might not get it back.

The only consultation I can give is that much later down the road, following CDT I was eventually able to leave off the morphine substitute. Now I rely just on my arthritis pain killers and, with crutches, I am much more mobile.

Sorry to make such a grim post, but always best to eliminate major dangers.

Re Zomets. As my entry into MM was via my loss of mobility, I didn't have time to have my teeth checked out. I have been on tablet bisphonates, the Zometa, for three years now. I did have one period when I had to leave off Zometa for a while, to have dental work. I now need more dental work, but am going to take the risk of staying on Zometa this time because it has done the job of preventing any fractures, even though I am told my body is full of lessions.

All the very best to you. Let us know how things go.

Mavis

[BabsParticipant]

Hi John,
I too had very severe back pain at diagnosis,a fractured T11 rib and some bone crumbling making me 3 inches shorter, I was referred to a pain management specialist and eventually referred to a consultant who offered me radiotherapy as a possible help with the pain, it was a one off very high dose and could have 3 outcomes,mostly no help with pain, for few people slight decrease in the pain and in very few cases no pain at all(but for how long this lasts they cannot tell you), well I was in so much pain I took the chance and very luckily for me it took away my constant pain so able to come off the morphine, now I manage aches and pain from walking, standing,moving in and out of bed, long journeys etc with paracetamol, the pain myeloma damaged causes never goes away completely but can be managed.
Unfortunately with myeloma we are never totally free from pain but it can be managed,by the way I still do not hoover or lift anything of any weight, cannot kneel down ,drive any real distances, stand long enough to wash up or cook a meal, makes beds and so am not able to live my old life so no longer work BUT am currently in remission and making the most I can of my life, this site made me see there is life after myeloma diagnosis,
hope this helps,
Babs

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