[mandyphillips41Participant]

Hi

Does anyone else suffer with sever bone pain in the night and when you get up in the mornings? Mine wears off after approx 45 minutes of being up and starts to come back about 4pm in the afternoon.

I am on many pain killers and nothing seems to reach the pain

thanks in advance
Mandy x

[avantrompParticipant]

Hello Mandy
My comments may have no relevance for you but here's my experience. My MM was discovered after investigation into various and also intermittent pains that I didn't realise were bone related. As soon as I was put onto biphosphenates the pain gradually disappeared. I grew to look forward to my monthly infusions.
Hope you find a solution.
Annette

[tomParticipant]

Hi Mandy

Yes I have pain at nite that has woke me up and later in the day 🙁
But had all test and have been told its Old age (and am only 58 ha ha) mine is neck,shoulder lower back and hips most of the time its no problem but now cold weather is near I suffer more but still take no drugs for it as I say its not that bad most of the time

Stay Well
Love Tom Onwards and Upwards xx

[PerkymiteParticipant]

Hi Mandy, Are you on biphosphenates?

Biphosphenates keep the majority of my pain at bay without any additional pain killers. I have several lesions in my spine, about chest height just behind my heart, and when I lay down at night I do get "uncomfortable" I take 5 mil doses of Oramorth during the night, when I get up for a pee, but I cannot say it keep me awake.

kindest regards – vasbyte

David

[sandydeliParticipant]

Hi Mandy yes I get bone pain when I go to bed its weirded as I'm fine during the day !!!! I take a couple of paracetamols but it's nothing like the pain I had before my SCT thank god !!!!
I'm 2 years post SCT only on bone strengthener every 2 months now I'm 57 and making the most of remission.
Take care Sandra.

[mandyphillips41Participant]

Hello All
Thanks for taking the time to reply, it seems that we all suffer from bone pain, although I wish none of us suffered at all its good to know that its not just me. (I do sometimes think that is has come back when I get the pains, but my oncology Doctor told me that that is normal to fret over pains) I just hope that as time moves on I will be able to handle it and stop worrying and thinking the worst.
I have Oxynorm liquid for a breakthrough and I still take Oxycontin 70mg twice a day, along with 11 other tablets, which I would really like to stop. Does anybody else still take this amount of tablets, I don't get why I am still having to take these when I am MM free at the moment.

Thanks again
Mandy xx xx

[sandydeliParticipant]

My doctor told me as long as the pain goes away not to worry ?? Mind you that's easier said than done eh !!!

[eveParticipant]

Hi Mandy
That is a lot of Medication, OxyContin is addictive,common name hill billy heron,my husband has been on it for over 2 years,but not at the dose you are taking!!! And has managed to cut down the dose 5mm at a time.He has never had a good remission only 6 months,so the Myeloma has all ways been active.
You do not say how much damage you have to your bones,if I was you I would ask !!! And find out were your weak spots are,so when you have pain you can make a judgement ,if it's a weak spot.
My husbands spine,ribs shoulders,skull are all damaged,but after taking Ad -Cal and Zometa for 2 3/4 years and having an active disease for most of the time his bones are quiet good.

He use to walk a lot as this helps the muscle round the bones,and the worst thing he can do is sit still for any length of time,and this is on strong medication.

You and you alone can only tell how much pain you are in,and how much medication you need,if you need it take it,as in the grand scheme of Myeloma it's a small price to pay to be comfortable. Eve

[dickbParticipant]

Bumped for a reason – see rant in 'Off topic'

[mandyphillips41Participant]

Hello Eve & Thank you so much for your reply.

I have been bought a new puppy which is helping me to start walking again, so gentle exercise (not the best time of year – weather wise… lol) but I am trying to keep active because I find as you say the same for your hubby that if I sit for any amount of time the bone pain seems to get worse.
I am currently taking the following: Amitriptyline 10mg 4 at night, gabapentin 600 mg 3 times a day, oxycontin 70 mg twice a day, celebrex 100mg twice a day then oxynorm (liquid) 20 mls with 500mg of paracetamol for breakthrough pain. I know that sounds a lot or does it? I don't really know how much a lot is, I just know that I am still taking 12 tablets each night and 7 in the mornings and I would love to be tablet free again.
I am back at work part time (i am self employed) so when I get tired or if the pain is too much then I go home but I am enjoying having something to get up for each day.
I am sorry to hear that your hubby was only 6 months in remission, I am dreading the day that it comes back!!
The damage is mainly in my back, I had an operation on my T7 a Kyphoplasty in May just 2 weeks prior to my SCT, I have damaged 3 other vertebras but touch wood they are ok for now. The very top of my spine is showing up very light (as in colour) on the X-rays and I am been watched for that. I had carpel tunnel done in both wrists in September and that worked instantly. Gosh, don't I moan.. lol sorry, I get carried away once i put a keyboard in front of me. I actually managed to keep a journal of my journey from the beginning which was 12th October 2012.
I have never heard of Ad-Cal, I will enquire about this.
Well Eve I have gone on enough, I wish you and your hubby all the luck in the world and pray for us all.

God bless, Love Mandy x x x

[eveParticipant]

Hi Mandy

If you need it I would not worry about the amount as long as it works,Slims on slow release OxyContin and takes paracetamol to enhance it some times.
I would work on your fitness,Slim now has problems walking any distances,but we think it is to do either with a artery blockage he had removed or the hip,but at the moment,getting his bodies immune system up,is more important so he can go back on Chemo.

Ad Cal works hand in hand with the Zometa !!!

Hope this helps if you are not on slow release ,this might be the problem.Or may be it's just early days and will take a bit of time for healing.Eve

[mandyphillips41Participant]

Hi Eve

Thank you so much for replying – I can honestly say I learn more from here than I do from the hospital.

I have hit a brick wall this week and have been unable to go to work today but I shall try again tomorrow, I have learnt to take each day as it comes.

Hope your hubby is getting there

much love and hope

Mandy x x x

[eveParticipant]

Hi Mandy

Slim use to take 2 steps forward and 3 steps back,gradually he learnt to pace himself ,but even now he over does it,and no matter what I say,he pushers himself,so again only you know how much you can do, I think this common after SCT everyone thinks the same. If you had major surgery on your body,they would tell you it takes at least six months to feel ok,well SCT is very much the same,some people are quicker and some people are slower. Plus Myeloma medication brings it's own side effects,again it varies .

When Slim got his remission after the 100 days,we went to France for 2 weeks,then a cruise,plus NZ all within 6 months,the longest we have every had away from a hospital is 6 weeks and that's in a period of 2 3/4 years,at the moment it is at least twice a week,this week it is 3 times,and if they had,had there way it would have been 4 times.
You are in remission,so make the most of it,even if it's just a walk to look at the beautiful autumn colours,enjoy your new found friend the puppy.Eve

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