[mandyphillips41Participant]

Hi

I was diagnosed on 12th October 2012 with Multiple Myeloma and I am now 6 months post stem cell transplant and I am feeling terrible pains in my body mainly back, down shins to the top of my feet and down my fingers. I have seen a (sorry about the spellings) neurologist, rhuematologist and a back specialist. I have had a kyphoplasty, carpel tunnel on both wrists. I have also been having steroid injections 4 weekly to try to manage the pain. I am on 70 mg of oxycodone twice a day, amitryptiline, gabapentin, celebrex and oxynorm. I have Zoledronic Acid every 4 weeks to strengthen my bones.
Some mornings I cannot get out of bed because the bone pain is so severe then it takes a good 45 minutes for my body to wake up, I am then ok (ish) until around tea time then the tiredness sets in and I am normally tucked up in bed around 7pm thats when the bone pain starts again.
Does anybody else suffer this and if so, what are you doing for this. Some nights I lay awake imagining all sorts but mostly that I have secondary cancer – the imagination in the middle of the night can be awful
I am going to try again tomorrow and I am going to speak with the Nuerology specialist to see if there is anymore he can do as I just want my life back to how it used to be.
Mandy x

[andygParticipant]

Hi Mandy.
Just wanted to say I’m sorry your suffering so much.
There’s not much I can say in the way of experience as I’ve never had a SCT and never will. It’s a long story but a shortened version is I’ve not responded to the drugs.
The only thing I can think of is its something to do with the production of stem cells as I’ve read that causes bone pain though not normally post SCT. I do however have back pain due to the damage MM did to my vertebrae. Though that disappears when I’m at rest.
Sorry I can’t be of any more help I guess you’ve had a MRI scan.
Unfortunately life hardly ever returns to how it was post MM diagnosis we have to just try and get used to our new MM life.

Every days a gift
Enjoy it best you can

Andy xx

[mandyphillips41Participant]

Hi Andy

Thank you so much for your reply 🙂

I am now seeing a Nuerologist on Tuesday so I will mention to him about bone pain possibly being related to the Stem Cell production.

Its a little depressing to think I may have to live like this if it is damage caused by the treatment, I don’t have much quality of life and I am only just 50. My life before MM was very active especially with water sports.

Thanks Again and I do hope you are doing well

Mandy x

[JimBobParticipant]

Thanks Mandy!

Got your mail/response. I am new to this forum. Despite spending my working life in acute care / tertiary hospitals, I am struggling. I AM, though, still positive and trust ALL the cancer charities and research units to continue their invaluable and dedicated work to finding cures for ALL cancers, if not for us, but for all who follow. At 59 I still do not feel old but moving about like an old man screws my mind! Pain becomes a partner telling you that you are still alive and making every extra minute a bonus and making being positive a reality! I hate being tired all the time, I hate pain, I hate hospital visits, I hate MM, but I Love Life, I Love my Wife, my Kids, my Grandchildren, so every treatment, every extra minute is worthwhile. Good Luck and ALL our Love. Happy New Year!

[JimBobParticipant]

Mandy,

How do I accept you as a friend or invite others to friendship?

Going to drink some seriously expensive Macallan Single malt that my son got me for Christmas and bugger the consequences! No Oxy’s tonight and maybe, just maybe, I will get at least a quarter of a nights sleep!!! LOL!!

Cheers

Jim (JimBob)

[MothasParticipant]

@mandyphillips41

Dear Mandy, I am approximately 8 months on from my SCT, although not suffering like you are, I still get the odd bit of bone pain in the area where I had bone damage, and aches and pains in my legs and shins too. Myeloma is pretty mysterious and I think most of us have bone pain that comes and goes at times. You may also be suffering from neuropathy.

[SIMSParticipant]

Hi Mandy, Just been reading your post, My husband is the one with MM, hes now post stem cell transplant of 15 months., but not in remission,….some of the drugs you have listed can also cause bone pain, and this includes the bone strengthener you get 4 weekly,this drug can also make you feel better, but its different for everyone, my husband experiances this pain after having the strengthening injection,ask the hospital if they can administer the bone strengther over a longer period then 15 mins…this seems to help, also keep hydrated before having that injection and after, speak to your consaltant about calcium with vitamin d also. My husband takes a different morphine to you, perhaps try changing the brand? as different brands are absorbed differently through the gut, for his pain relief he used initially tramadol with his morphine, and progabalin instead of gabapentin , if that the way you spell it, this progabalin acts quicker to relief the pain in feet and hands. He weined him self of the morphine high dose and also the tramadol., he now doesnt use tramadol, time became the healer!he was feeling similar to you for upto about 10 months after stem cell, we put it down to the growing pains!!! it does wear off a bit, speak with your pain manager, to try and get you better relief from the drugs…..good luck, and keep positive, you can do it! also get a very good mattress one of those which fits around your body, perhaps you may get this on the nhs, dependant upon circumstances, ask your spinal surgeon about a boston brace, we did a lot of research on drugs and side effects so to help my husband what was happening to him, this help him cope by understanding….hope this helps,

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