Hello All,
First, let me say that I am a new member reaching out to those who are fighting multiple myeloma. I was diagnosed in July 2015. I have undergone 4 cycles of Velcade, Dex and Revlimid. I had a stem cell transplant in December 2015.
As a result of my disease, the T-9 vertebrae in my spine was compressed and fractured causing me much pain. I have been in pain since July. My palliative team at Memorial Sloan Kettering Hospital, where I am being treated, have come up with many possible solutions, but to no avail. I do not take well to opiods and cannot take them. I am currently on a 37 Mcg Fentanyl patch (which is an opiod that I can somewhat tolerate) but it does not really curb the pain very efficiently. I cannot do a higher dose as it really affects my nervous system in a very negative way.
I was measured for a brace last week to improve my posture and I am seeing a pain management anesthesiologist for a possible nerve block to see if it can numb the pain.
I would like to know if anyone of you out there has had a similar experience to mine and how you have coped with it. I would very much like to taper off Fentanyl at some point if another procedure worked for me. I don't like the feeling that Fentanyl gives me. It makes me very loopy and lightheaded all the time.
Thank you for reading my discussion. I am looking forward to some responses.
Aurora Borealis
1 Like
Hi,
My palliative doctor had me try Lyrica, as that can really mitigate nerve pain. To date, it has not done much for me, but I am on a low dose. I am also on 50mcg fentanyl patch, which again does little for the pain, so I am likely moving to Methadone instead which is better for nerve pain. I will also be undergoing more surgery to add more pins to my spine to stabilize it in the hopes ghost this will finally relieve the pain. Multiple Myeloma destroyed my sacrum causing my spine to collapse this January.
Phoenix49
Hello Phoenix 49,
Thank you for replying. I totally appreciate it. I have tried Lyrica and Methadone. Unfortunately, my body does not take well to opiates and I cannot tolerate them. That is why I am having such a difficult time controlling this pain.
The Fentanyl is a very effective opiate which my body does adapt to, but the terrible side effects that my nervous system experiences is why I want other alternatives.
I had a nerve block today. The doctor said it could take anywhere from 5-7 days to kick in, if it is going to work so I have to give it some time. I am hoping that something will work and I can resume a semi normal life. This has been difficult for me as well as for all of you out there that are experiencing excrutiating back pain.
Again, thank you for your reply. I hope that you get relief very soon.
Aurora Borealis
Phoenix49 said:
Hi,
My palliative doctor had me try Lyrica, as that can really mitigate nerve pain. To date, it has not done much for me, but I am on a low dose. I am also on 50mcg fentanyl patch, which again does little for the pain, so I am likely moving to Methadone instead which is better for nerve pain. I will also be undergoing more surgery to add more pins to my spine to stabilize it in the hopes ghost this will finally relieve the pain. Multiple Myeloma destroyed my sacrum causing my spine to collapse this January.
Phoenix49
Hi,
Is there another surgery that you can do to reduce the neck pain? My doctors have been very innovative in trying to reduce mine. We tried a sacroplasty, which injected a cement into the hollowed out bones and build a channel for the spinal column nerves. That worked a little bit. But, my right leg still feels like it wants to twist off my body before it goes numb. Now we are going to put in two more pins to stabilize the spine and take more pressure off the nerves. If that works, I will be pain free.
All those years of proper exercise, organic diet, only to get diagnosed at 49 with this disease. My bones are like those of an 88-year-old woman with advanced osteoporosis. I literally broke my sacrum by sneezing lightly. I can break any bone in my body at this point in very stupid ways. Yes, I am taking Zometa for that. Still no fun.