[Marie64]

Does the skeletal pain ever stop

by Marie64 on Sat Sep 29, 2012 9:58 pm

My husband actually was diagnosed in 2010. We suspect that he actually had multiple myeloma in 2007 when T5 collapsed. He had an autogulous transplant in 2010 and stayed in remission for 18 months without maintenance. Since his relapse, the disease was brought under control with Dex/Rev and now 10 mg of Rev maintenance. There was a great deal of damage done to his back prior to transplant. He is always in pain. Some days are just worse than others. Does the pain ever go away? What are some of the things that you have found effective in managing the pain?

[Alex]

Re: Does the skeletal pain ever stop

by Alex on Sun Sep 30, 2012 8:53 am

Hi,
I,m in remission after 16 months on a rev trial.
But......the skeletal pain is alive with ribs, t7 and t8 buzzing all day and night.
The damage was done last year when multiple myeloma was raging thru the system.
Endone and pain management injections keep the wolf from the door but I will ride the trial out before I explore what other options I have.

[Nipon Ginko]

Re: Does the skeletal pain ever stop

by Nipon Ginko on Mon Oct 01, 2012 1:30 pm

Marie : My experience has been that after the treatment in 2004 most of the pain (hips, Rib cage, and Legs,) pretty well subsided except for the back pain , it was reduced but still there mostly in the lower back , I am ok sitting but about 5 minutes standing will start agrevating my lower back - L3 & L4 area to the point where I am forced to sit down , more reciently I have had what feels like a pinched nerve in my spine between my shoulder blades -could hardly move my arms - Dr put me onTylenol 500 mg - 4 times a day max, I'm doing 3 times a day and it is helping quite a bit , I was wondering if your husband has lost any height due to spine damage -I have lost 4 inches in height myself . N.G.

[Norm X]

Re: Does the skeletal pain ever stop

by Norm X on Wed Oct 03, 2012 9:35 am

I assume everyone's back pain issue is a little different so it would be hard to say that back pain does or doesn't go away. I started with back pain in 2010 with compression fractures of T8 & T9 vertebrae and then learned it was from the myeloma. I have had bone strenthening Zometa for two years now. I went to an orthopedic back specialist in 2011 who indicated that surgery wasn't an option and that I could have pain the rest of my life. I still have back pain but it's a lower pain level than say a year ago. There is bone pain but most pain is from the muscles along the spine between the shoulder blades. I used to take narcotics for pain but no longer need them (usually). I manage with physical therapy, stretching and strengthening exercises, a heating pad some of the time, a cold pack occasionally, avoiding activities or limiting activities that increase pain (can no longer work), changing positions regularly, using relaxation / naps in the afternoon and a muscle relaxer before bedtime. All of this helps ease the pain. Distractions are good if they don't contribute too much to increasing the pain.

Anyway, I hope this helps you figure out what to do and how to think about it. Good luck. By the way, I'm now being referred to a rehabilitation specialist who deals with chronic pain so I haven't given up the idea of making improvement here.

[Jackie]

Re: Does the skeletal pain ever stop

by Jackie on Wed Oct 03, 2012 11:44 am

I wonder also if some of it will go away. I had compression in T-5 and T-9 they did khyphoplasty and I am up and walking....the muscles in my middle and lower back give me problems regularly. I am going to pt with some relief, by 4 or 5 I am tired and sore if I sit with support, it helps but usually use 1/2 a Vicodin. Not bad considering they had me on fentanyl patches, and MS Contin. This disease is a strange one n how it effects people differently. I am still breathing and surviving. And can smile most of the time.

[jpecchia]

Recovery from vertebrae fractures

by jpecchia on Mon Oct 08, 2012 2:44 pm

I have 8-10 compression fractures in my back as a result I'm on morphine and Lyrica 24/7 and also take additional morphine as needed. The neurosurgeon said the risks far outweigh the benefits for any surgery. I meeting w/Mayo Scottsdale in a couple weeks to begin process for SCT. Will my back ever heal so no need for morphine and Lyrica? Has anyone had experience with this issue?

[Snip]

Re: Recovery from vertebrae fractures

by Snip on Mon Oct 08, 2012 2:53 pm

I had two vertebrae fracture... T9 and T2. I was also on morphine for a while, as well as radiation to knock back the tumors that caused the fractures.

As part of the overall process I was given kyphoplasty treatment on those two vertebrae: perfect!

[jpecchia]

Re: Recovery from vertebrae fractures

by jpecchia on Mon Oct 08, 2012 3:31 pm

I also consulted w/radiologist, who advised radiation would provide no relief from the pain.

[Nancy Shamanna]

Re: Recovery from vertebrae fractures

by Nancy Shamanna on Mon Oct 08, 2012 3:56 pm

I also had 5 compression fractures...one was severe, and I guess the others not as bad, but that was the absolute worst pain I was ever in in my life! I don't have back pain as such any more. What I think has helped was the bisphosphonate treatments I have been on, and also the fact that I don't have active myeloma now so my bones aren't being damaged further.
At the time, summer of '09, what helped was taking Tylenol 3 (contains codeine), taking muscle relaxants as needed (Flexaril), using a walker to get around so as to take the weight off my back, sitting in a chair with an electric car seat heater, which put gentle heat on my back. Also had trouble sleeping but had to use pillows to take the pressure off my back. I never would have believed then that I would be better really. It was a gradual process, but healing did occur. I am still careful about lifting heavy items of course, since obviously my bones were badly damaged by the myeloma. Hang in there, hope your back heals up too...

[LibbyC]

Re: Recovery from vertebrae fractures

by LibbyC on Mon Oct 08, 2012 5:10 pm

I had 3 fractures and was on fentanyl patches for the pain. After my first cycle of chemo the pain dramatically reduced, I could actually move again without being in too much pain. Since dx I have been on Zometa (bisphosphonates) which has helped strengthen the bone that is there (it is now in the normal range) and my myeloma is in remission so bone loss from that is minimal. Occasionally my back will get sore if I have done too much but this is more muscular than bone pain.

Like Nancy I also used heat for my back and extra pillows while sleeping and am very careful when lifting things (I ask other people to lift the heavy things). All the best for your treatment and hopefully the pain will be alleviated soon.