Pain with multiple myeloma

Posted by photogirl54 @photogirl54, Feb 7 1:17pm

Hello my fellow warriors,
This is my first time posting on the very informative and helpful site. I've been getting treatment for MM for the past year. I had 6 rounds of treatment and am now in what they call remission. I am getting palliative care that really helps me with the pain. I asked my doctor if my pain is normal for now being in remission. He said that I shouldn't have pain. Nothing makes me more anxious than someone telling me I shouldn't have pain. I tend to put the blame on myself because I SHOULDN'T have pain when I obviously do. I take 15 mg. of oxycodone every six hours. I guess I need reassurance that I am doing the right thing. I certainly don't want the label of drug seeking. I am very honest about what I feel. No one has accused me of drug seeking but I know that with opiates that can be the case. Thank you for your experience on this matter. After all the suffering that goes on with this illness, I don't want to blame myself for the the pain.

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Chris, Volunteer Mentor | @auntieoakley | Feb 7 2:37pm

Hello @photogirl54 welcome to connect. I am sorry they said that to you. Multiple myeloma often comes with pain. Especially if you have bone disease, my husband has a very damaged spine, this means nerve damage as well.
He uses lidocaine patches on his back, and also a long acting 10 mg OxyContin every 12 hours. This is an extended release medication.
When he was in the hospital and they wanted him on short acting pain killers they just did control his pain well. Then back on the long acting, he is doing well. Even when his disease is undetectable he continues to have pain from this damaged spine. His dosage has not changed in almost 16 years and he has only used breakthrough meds a couple of times in all those years.
I can’t say this will work for you but the Mayo doctors got him started on a good path for pain control.
Does your palliative care doctor work with your oncology doctor?

photogirl54 | @photogirl54 | Feb 7 5:56pm

Thank you for addressing this. I'm happy your husbands pain is under control. My palliative doctor is wonderful. My oncologist is the one that quickly mentioned it shouldn't be painful. I must say, I as of March of last year my pet scan did not detect lesions. I will be getting another test soon. My pain is in the spine and yet my whole body aches. It's a deep ache. I have some more scans coming up so maybe it will show something. I do respect my oncologist. He is a great doctor. This little exchange happened when I was walking out the door after the our appointment. It just took me by surprise. I'm sure more will be revealed as time goes on and that my conversation with them will continue. Thank you again.

Ginger, Volunteer Mentor | @gingerw | Feb 7 6:11pm

In reply to @photogirl54 "Thank you for addressing this. I'm happy your husbands pain is under control. My palliative doctor..." + (show)

@photogirl54 Welcome to Mayo Clinic Connect! From my own experience, we as patients can experience pain that our medical team may not attribute to the myeloma. That certainly doesn't mean it doesn't exist. This will allow you to educate your doctor in how this deep-seated pain is affecting you. I sincerely hope he would not want to see you experiencing discomfort! Just because your scans did not detect lesions doesn't mean you don't/can't have pain. Just my own personal opinion....
Ginger

photogirl54 | @photogirl54 | Feb 8 2:49am

Thanks Ginger!

hanya | @hanya | Feb 8 4:15pm

Hi friend!
Just because a doctor said that you should NOT HAVE PAIN
It doesn’t mean you don’t have pain !! He or she should have said !! I do not feel your pain “”
That is the accurate description
All these rare MPN BLOOD ILLNESSES ARE UNPREDICTABLE AND DOCTORS KNOW VERY LITTLE ABOUT HOW COMPLEX THESE ARE !! It makes me very ANGRY when I hear that a medical professional dismisses a patient’s pain !
All of us here on this forum believe you and comprehend what you are going through!!
If the same doctors continue to treat you as if you are some hypochondriac !! Search for another treatment center ! Also , go see your primary, ask for help. In controlling the pain!
GODS BLESSING! Stay strong
We are all pulling for each other
Hanya ❤️

wesleym | @wesleym | Feb 9 8:59am

Hopefully there are not many physicians who tell their patients outright that they should not be in pain. After all, that is very different from telling a patient that s/he should not be in pain FROM A PARTICULAR CONDITION. MM can cause pain in a couple of ways, primarily lytic lesions on bones and, less commonly, the mass effect of tumors. MM treatment itself can occasionally cause pain, such as from a drug-induced peripheral neuropathy. If those causes have been ruled out, then it is much more likely that a condition other than myeloma is causing a patient's pain. There are many such conditions, and they increase with a patient's age.

OF COURSE, the source of the pain should be investigated and treated appropriately, but the heme/onco who is treating the myeloma may well not be the best person to do that - in which case, the appropriate course is to refer the patient to someone who is. A physician who refuses to do that is, I agree, an insensitive jerk.

jope | @jope | Feb 10 1:04pm

Yes, I have pain even though I'm in remission because of getting biweekly injections of Talvey. My palliative care doctor registered me in the state I reside in because he has prescribed THC. He believes me when I tell him I have pain, even though my paraprotein is not detectable, currently. THC has been a blessing because it manages the pain and I can finally walk pain free for the most part. Two years ago, Multiple Myeloma caused 9 compression fractions in my back and multiple fractions in my ribs.

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