I have pain everywhere, for a whole variety of reasons. I think I may also be having bone pain, but am not sure. Appreciate others perspectives on this issue and what it feels like.
Both of my shins hurt lately -- a lot. I have terrible heel pain in my right heel, likely from severe plantar fascitis (fits the diagnostic criteria). Some days it is so bad I'm not sure my foot will hold my weight. I have pain in my rib cage for no apparent reason on my left side. It isn't constant, but it is there regularly. Hurts when I push on the area.
Also, something new that has started at night when I lay down to go to sleep I get this very strange, very uncomfortable tight feeling in the center of my breastbone. I'm not sure if it is from the bone, or from something else. If it were further to the left, I'd wonder if I was having angina or a heart attack. But instead it is in the center of my chest.
Lastly, I'm tired all the time -- profoundly tired. Last BMB in July was 10% with 91% abnormal (that was double what it was a year prior when I was first diagnosed with MGUS). Last M-spike (IGg) was 1.1 (also double from where I started -- each time has been incrementally higher than the last).
Am due for tests in January. Should I be asking for a whole body MRI?
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MissMolly - Who do you know with myeloma?: Self; Grandfather died from multiple myeloma
- When were you/they diagnosed?: April 2011 MGUS; July 2012 SMM
- Age at diagnosis: 49
Re: Questions about Bone Pain
I always forget something -- in this case something important: my lower back kills me all the time and my hips, especially the left, feel like they are on fire at night. The pain wakes me up it gets so bad.
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MissMolly - Who do you know with myeloma?: Self; Grandfather died from multiple myeloma
- When were you/they diagnosed?: April 2011 MGUS; July 2012 SMM
- Age at diagnosis: 49
Re: Questions about Bone Pain
Hi Miss Molly, I am not sure I would want to wait until January for tests if you are in that much pain. I know I had severe low back pain, and it led to vertebral fractures. I didn't know at the time that I had multiple myeloma.. Of course I wished I could have avoided having the compression fractures by knowing sooner about the dx. Perhaps your doctors would order X-rays for the pain...have you had bone density tests done too? Not sure about MRI's, but other tests can also be definitive for having multiple myeloma, and thus starting treatment for it.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Questions about Bone Pain
Miss Molly-
I agree with Nancy - don't wait until January. Call your oncologist's office and report the extent of your pain. I recently started getting pain in my left shin with increased activity, I'm in PT right now for rehab following a knee replacement. I've had to stop doing some of the exercises in PT because of severe shin pain. When I saw my oncologist this week I reported it and he ordered new skeletal x-rays. I reminded him that the skeletal survey doesn't do the entire leg. So, he ordered separate studies done of my lower legs. And, what was found? I have lesions in both of my fibulae, the smaller of the 2 lower leg bones.
Ask for a skeletal survey, studies of the tibia and fibula, MRI, PET/CT. And, do it this week. We can have much bone damage even when our cancer numbers don't appear to be very high.
Let us know how things turn out,
Nancy S in Phila
I agree with Nancy - don't wait until January. Call your oncologist's office and report the extent of your pain. I recently started getting pain in my left shin with increased activity, I'm in PT right now for rehab following a knee replacement. I've had to stop doing some of the exercises in PT because of severe shin pain. When I saw my oncologist this week I reported it and he ordered new skeletal x-rays. I reminded him that the skeletal survey doesn't do the entire leg. So, he ordered separate studies done of my lower legs. And, what was found? I have lesions in both of my fibulae, the smaller of the 2 lower leg bones.
Ask for a skeletal survey, studies of the tibia and fibula, MRI, PET/CT. And, do it this week. We can have much bone damage even when our cancer numbers don't appear to be very high.
Let us know how things turn out,
Nancy S in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Questions about Bone Pain
I would consider doing a PET scan to try and better identify if the bone pain is related to myeloma bone lesions or not.
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Dr. Jason Valent - Name: Jason Valent, M.D.
Beacon Medical Advisor
Re: Questions about Bone Pain
Before before my 7 compression fractures started in thoracic spine area I had severe rib pain perhaps 18 months before finally getting a correct diagnosis of multiple myeloma in Aug 2011.
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genk - Name: Ed
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: August 2011
- Age at diagnosis: 61
Re: Questions about Bone Pain
Thank you everyone who has commented. This forum is such a great lifeline. I'm just about a year and a half into this often confusing "wait and see" journey where there don't seem to be many concrete answers.
Unfortunately, I was unable to get in any earlier to see my oncologist, so I have an appointment for next week as well as my 6 month appointment at NIH for the Natural History Study. I will be pushing hard for additional imaging studies to make sure nothing else is going on with my bones. I will post again when I know more...
Unfortunately, I was unable to get in any earlier to see my oncologist, so I have an appointment for next week as well as my 6 month appointment at NIH for the Natural History Study. I will be pushing hard for additional imaging studies to make sure nothing else is going on with my bones. I will post again when I know more...
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MissMolly - Who do you know with myeloma?: Self; Grandfather died from multiple myeloma
- When were you/they diagnosed?: April 2011 MGUS; July 2012 SMM
- Age at diagnosis: 49
Re: Questions about Bone Pain
I got to multiple myeloma with severe arthritis that included two artificial hips. One of the factors leading to my diagnosis was severe pain. My GP and I were convinced it was arthritis but found multiple myeloma during the process of testing.
My pain reduced dramatically from a quick response to chemo and is very manageable.
My bone scans came back acceptable but my lower back does hurt and my hips cause me grief. I take no pain meds.
I place skeletal concerns and cautions at the top of my list for my part as a member of my multiple myeloma team. It seems too easy to get caught up in blood chemistry and endure the skeleton for me.
I found out my multiple myeloma had been smoldering for years because an accident that broke some ribs never healed. It was easy to misread the multiple myeloma bone pain as arthritis. If I had decided to research that earlier instead of enduring it we may have found multiple myeloma before it ran away.
My pain reduced dramatically from a quick response to chemo and is very manageable.
My bone scans came back acceptable but my lower back does hurt and my hips cause me grief. I take no pain meds.
I place skeletal concerns and cautions at the top of my list for my part as a member of my multiple myeloma team. It seems too easy to get caught up in blood chemistry and endure the skeleton for me.
I found out my multiple myeloma had been smoldering for years because an accident that broke some ribs never healed. It was easy to misread the multiple myeloma bone pain as arthritis. If I had decided to research that earlier instead of enduring it we may have found multiple myeloma before it ran away.
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Canuck Bob - Name: Bob
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb. 2011
- Age at diagnosis: 57
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