Pat’s Place: Can’t A Guy Get A Break?
Three months ago, my painful right hip was replaced. Recovery has been swift and rewarding. I’m able to kick in the pool again when I swim, take long walks, and not wake up in the middle of the night with my myeloma-ravaged hip joint throbbing.
But all my news on the pain front isn’t good. Back before I was diagnosed in 2007, my myeloma had been systematically attacking my bones for years. My ribs, lower back, pelvis, and right femur were all involved. Hardest hit of all were several of my cervical vertebrae. As a result, I was in a lot of pain in the neck area, but the discomfort improved with time.
Recently, my neck pain has been making a comeback. And I’m afraid my new hip has contributed to it. It seems that becoming more active has been aggravating my damaged neck. Chalk this up to, "Can’t a guy get a break?"
Back when I was in high school, we called the pain I am experiencing now “stingers;” pain that would shoot down our arms or legs after taking an awkward or particularly vicious hit.
Stingers best describe what I’m experiencing now. For no particular reason - and at the most inconvenient times - sharp, burning pain radiates from my neck down my arms and back.
The cause is simple enough to identify. My cervical vertebrae were damaged by my rampaging myeloma early on, before doctors figured out why a 50 year-old ex-jock and coach could barely walk up the six stairs to his office.
An MRI of the neck area looked eerily like something you would see in a sci-fi film; black, spongy-looking material had replaced nearly half of the bone in my C5 and C6 vertebrae. The invader from outer space had been relatively quiet for the last four or five years. But now it’s awake and shocking me whenever I turn my neck to one side or the other.
Oxycodone helps dull most of my other pain. But it isn’t as effective against the stingers.
Surgery is an obvious solution. After all, it worked like a charm for my hip!
My medical oncologist and I had a conversation about it even before my neck pain worsened. I thought that surgically repairing my neck and lower back might leave me practically pain free.
My doctor chided me for even broaching the subject. “Surgery for a myeloma patient like you is always risky,” he said. He added that he had several patients who went down that road. “The first surgery went fine,” he explained. But apparently there were complications with subsequent surgeries. None of these other patients survived.
I remember being surprised by how strongly my easy-going medical oncologist felt about it. He believed it was a bad idea to undergo any more elective surgeries.
I think he has a point. Although my lower back is always uncomfortable and my peripheral neuropathy is getting worse, I realize that I can’t safely fix it all!
And I’m alright with that. It’s never easy living with multiple myeloma. But I’ve lived longer than I expected, I have a wife who loves me, and - thanks in part to the misfortune of my diagnosis - I found my calling as a writer.
All in all I can’t complain; just don’t ask me to turn my head quickly to the side. Ouch!
Feel good and keep smiling!
Pat Killingsworth is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of all his columns here.
If you are interested in writing a regular column to be published at The Myeloma Beacon, please contact the Beacon team at .
I was diagnosed with MM on June 24th of this year. In the past 6 weeks so far, I've had numerous tests run. I have full blown MM and osteoperosis of the lumbar spine and femur. I have a previous diagnosis of heart disease as well. I have yet to recieve any kind of treatment other than more tests. The pain in my lower back is unbearable. It is in the small of my back and goes from hip to hip and down the back of my thighs. Recently it has begun hurting in my neck as well. MRI's showed two tumors growing on my lower spine. The pain when it hits, is sudden. A sudden sharp throbbing pain. Each time it throbs, it's like a knife going in my back. Then when the throbbing stops,it burns. After a while it will pass but leaves me sore. Then it suddenly hits again. I don't know what it is I'm doing that is making it hurt so bad and nothing I have tried has eased it any. Do you have any tips for these back pains to help deal with them or to help get thru them?
Hi Pat,
I too get "stingers" because of Myeloma damage in my neck and good old arthritis. I found that certain stretching and strengthening exercises helped. Going to an acupuncturist helped my pain also. I had to search for alternative methods because Oxycodone is not a long term option for me. More than two doses in a day and I get a little nuts and don't handle work stress too well.
Take care,
Ranetta
Hey Pat, good time hear from you. I have a pain at my left shoulder, which radiates down my arm and makes my hand numb. After MRI, they said it was Severe Arthritis Of the Neck With Bone Spurs at the neck area and they told me the same thing, "Don't think about surgery" because of the MM. I take Dilaudid for PN and that also helps with this pain, but not much. I have found that by changing the way I sit at a computer and changing my sleep position have helped best of all, even better than PT. Hope this little bit of advise helps, God Bless.
So sorry to hear about your diagnosis, Sharon. Welcome to the "club." If you read the other comments, you're hearing from experienced myeloma patients--its never easy, but it does get easier. I'm not a physician, but you need to hit someone over the head and crank-up the urgency. Not because the myeloma is time sensitive, but because your pain is. Tell your doctors you are in pain. Scream it if need be. You may soon learn that radiation is an option for your back; it could help a lot. In the meantime, you need to be experimenting with different pain meds. Please don't suffer in silence! Good luck! Keep us updated if you would.
Ranetta, acupuncture intrigues me. Great suggestion! And so good to hear from you, George! Changing position is my lifeline. So is moving. If I'm hurting I change positions and/or get up and exercise. Usually helps.
Hi Pat, so sorry about your pain, I have a question if you do not mind? I was diagnosed with MM in Sep of 2011... I have been on a wait and watch approach after a single plasmacytom in my humerous cause me to have a full shoulder replacement. I have now started to progress with a lesion in my fribula. Anyway, my question is this...I have just (today actually) started revlimid, my oncologist tells me this should kill myeloma cells and subsequent pain along with it. Is that not your experience? Why continued pain for you? Years of research and I still haven't gotten this lousy disease figured out. Thanks for your help.....Christine.
Sorry about the multiple spelling errors, did not proof read before I hit send. :).....Christine
I am praying for God to lift your pain Sharon.Love,Carol
Pat, sorry to hear about the 'stingers'. From my experience, the Oxycodone and Oxycontin drugs did not do anything for the sharp, sudden, stinging pain I was having in my legs. I was diagnosed with MM in January 2010 after an MRI showed a large soft tissue mass where the lower half of my sacrum was supposed to be. All the leg and feet nerves traverse through this damaged area and sitting, bending, etc. were not an option. 'Stingers' often shot down the sciatic nerves in both legs and were extremely unpleasant. Having been treated with Velcade and Thalidomide for the MM, PN resulted in both of my lower legs and feet. My oncologist prescribed Lyrica, which is usually prescribed for diabetic nerve damage in the feet and hands, and it has eliminated the shooting pains 95% of the time! It has even helped with my PN. I know that MM caused 'stingers' is different for everyone, but in my case Lyrica did the trick for me. Hopefully your doctors can find the right mix of nerve, chemo and pain medicines that will eliminate/reduce your 'Stingers' pain. ez
Pat, thanks for your continued work to provide new and insightful information to this community. With regard to your article, apparently Zometa or similar agents didn't help with the bone issues. Would like your experience and knowledge on this topic. Does it just slow down the process or does it actually enable the re-building of bone tissue.
Thanks again-- keep smiling.
Paul Jorgensen
Pat
I have found using a sauna everyday really helps with the pain. Also a small portable tens unit makes the pain manageable, in fact keeps it under control for days. I have been free from pain narcotics for about 1.5 years, and I also agree mild exercise and stretching slowly really helps. All the best to the myeloma club in their pain management.
Thanks, all! Christine, sometimes radiation therapy--or time as Revlimid and/or Velcade do their job--will relieve pain caused by tumors or inflammation pressing on nerves. But in my case, multiple compression fractures (Lumbar and cervical) and other damage isn't able to repair itself. Surgery can help, but as my medical oncologist noted, there are risks. Paul, time and a bisphosphonate like Zometa can help fill in holes in our bones. But my understanding is, if the hole is too large they never fully recover. I believe my pain is mostly a result of posture issues pulling and twisting my muscles, and nerve compression, not "bone pain" in the true sense. And Eric, I bet a sauna a day helps! That's what I need to work-on; taking the time to do more little things that can help me feel better. By the way, yes, many patients I know with PN have been helped by Lyrica. Glad it works for you, Ernest!
You are an inspiration to us all, Pat, and I hope that you can improve from these pain issues. Be sure to take time for yourself and Pattie to relax too!
Thanks, Nancy! Relaxing--and maybe even meditation--would help for sure.
Thanks Pat. Great piece!
Yes, I find moving, changing position, a heating pad, and lots of rest help the most with neck and other spine pain. I cannot take any morphia a or pseudo-morphias like the oxies, so it's Tylenol, and carefully dispersed aspirin and ibuprophin for me.
I've also had a C7 vertebrae replacement, so yikes, I'm careful with my neck. Some times my husband forgets and asks me to turn my head and look behind me. I kindly refuse.
Though there are differences in the things we all go through, I'm amazed at how often they are so much alike!
Julia
-And pray for the cure-
Thanks for sharing, Julia! Another testimonial from someone that has learned to adapt to dealing with chronic pain...
Hi Pat,
I forgot to mention my secret pain weapon. I was given a rice,lavender pillow that I put in the microwave. This really helps the dull aching pain I sometimes get in my neck and my back. The lavender scent is really soothing. You can find them on the Etsy website.
Thanks again for your column!
Pat,
I reread your previous comment and yes, most of my pain issues are from posture issues and tensed muscles pulling where they shouldn't. Shiatsu massage helped with that also and I am thinking about starting Qigong to work on my balance and alignment. I actually go to a Chinese medicine doctor/acupuncturist as support therapy. I just started Velcade SC and he has a regime together to help my body cope. I feel great, much better than the first time around with Revlimid.
Take care...
If you have acupuncture questions, maybe we could talk about it off forum...not sure it is relevant to the topic
Hi Ranetta, your bringing up acupuncture may have sparked a question about it in the Beacon's forum. Perhaps you want to discuss your experience with it there. Here's a link to the forum thread:
http://www.myelomabeacon.com/forum/acupuncture-and-myeloma-related-pain-t2268.html
OK...will do...thanks!
Pat, I appreciate profoundly your courage and perseverance, it gives me hope. As a caregiver I struggle with hopelessness and depression, but I snap out of it reading the Myeloma Beacon, especially myeloma survivors like yourself and Arnie and others, which gives me a boost of energy.
I would like to echo back to you my appreciation for sharing your most intimate journey with all of us.
Raad
Thanks again for sharing, Ranetta! Sorry you get down, Raad. Sometimes I think this can be harder on the caregiver. I was my wife's caregiver on and off for a half dozen years, so I understand. Hang-in-there!
Hey Pat, just found the Beacon, sounds like you're doing great with this horrible disease. Continued good luck my friend.
I was diagnosed in fall of 2009 with m.m. Same story as most younger people. Too young to look for cancer. My doctor sent me to a chiropractor for steady severe lower back pain. When I could no longer walk anymore they did the m.r.i. and surprise you have multiple myeloma after a lot of test (add human pin cushion here). Lol.
After three back operations, kyphoplasty, dex, Velcade and Rev, I'm in a complete remission now so far so good. In a watching stage now.
After all this my wife of 28 years just left me and my son. She was our main supporter as I'm on disability. Her reasons: This is too much stress for her as she didn't sign up for all of this. Seems selfish to me as if this was reversed I know I would have stayed. I gave my vows in marriage to stay.
At 50 years old m.m. has cost me a lot but through a lot of family support and my relationship with God I'll get through this a stronger person.
Thanks for reading. Your new found friend Louis Delzoppo, Ohio.
I'm fortunate to have a wife that has stuck by me, Louis. But I feel bad for her; very tough on caregivers. I was her caregiver for many years and found it harder sometimes than being a patient. So I'm surprised this type of thing doesn't happen more often. Hang tough! Surrounded by friends and family that truly care. Good luck!
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