I have a tentative diagnosis of smoldering multiple myeloma (waiting to get confirmation from an additional specialist based on recent PET-CT scans and a pending DEXA scan next week). Both docs have said to be extra vigilant about any "bone pain" that may develop.
My question is just what is the bone pain associated with multiple myeloma like? Is it like the feeling after sharply bumping one's shin on a piece of furniture (to me, this feels to me like the shin bone itself hurts for some time when I do this)? Does it start mildly and then become worse over time? Is it persistent or is it only present during some parts of the day or during some activities? Is it very localized or does a large area/length of the bone hurt?
Forums
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Multiple myeloma bone pain - what to look for?
Hi Multibilly,
You might watch out for low back pain which doesn't improve over time, achiness in the ribs or shoulder blades. Probably the docs would like to hear from you about any pain, whether it is sharp pain or just low grade pain. They could then do X-rays or other tests to determine if you were getting lesions on the bones, or thinning of the bones.
You might watch out for low back pain which doesn't improve over time, achiness in the ribs or shoulder blades. Probably the docs would like to hear from you about any pain, whether it is sharp pain or just low grade pain. They could then do X-rays or other tests to determine if you were getting lesions on the bones, or thinning of the bones.
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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: Multiple myeloma bone pain - what to look for?
What is it like? For me at the time of diagnosis (active 43 year old), I couldn't get out of bed or back in, or off the sofa, without help from my wife. The pain was debilitating. It is sharp, deep, and painful. I had it all along my spine and all my ribs. Luckily no breaks.
Now 1 1/2 years post diagnosis and 5 months post stem cell transplant, I still hurt, especially if I do anything. Any type of physical activity, other than something like walking, will cause it to flare up for days. At this point, there are about 4 spots – 2 on spine and 2 on ribs – that are 99% of the time the main pain areas.
Since NSAIDS are bad, and don't really touch the pain, I have Phenargan (promethazine) and Dilaudid (hydromorphone) for the pain. Tried fentanyl patch, but every time it made me very sick to the stomach.
My pain is MUCH better than it was at diagnosis. Haven't been on any bone medications yet. We are waiting for a while after the stem cell transplant.
-Chris
Now 1 1/2 years post diagnosis and 5 months post stem cell transplant, I still hurt, especially if I do anything. Any type of physical activity, other than something like walking, will cause it to flare up for days. At this point, there are about 4 spots – 2 on spine and 2 on ribs – that are 99% of the time the main pain areas.
Since NSAIDS are bad, and don't really touch the pain, I have Phenargan (promethazine) and Dilaudid (hydromorphone) for the pain. Tried fentanyl patch, but every time it made me very sick to the stomach.
My pain is MUCH better than it was at diagnosis. Haven't been on any bone medications yet. We are waiting for a while after the stem cell transplant.
-Chris
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ninja performance - Name: Chris Hill
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 08/04/2011
- Age at diagnosis: 43
Re: Multiple myeloma bone pain - what to look for?
Hi Chris, sorry to hear about all of the pain. Do they have you on bisphosphonates like Zometa or Aredia?
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: Multiple myeloma bone pain - what to look for?
Thanks everyone. Seems like there is little chance of mistaking bone pain. In my case, I have spondolythesis in my lower spine (I've had it for many years and.well before any sign of an off kilter protein reading in my blood). So it may not be obvious to me if it shows up there unless it pops up as a different sort of pain.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Multiple myeloma bone pain - what to look for?
Hi,
I don't think bone pain always has to be severe. In my case, I had lesions in my rib, spine, and hip. My back (multiple spots in the thorax) always kind of felt like a pulled muscle, but if you asked me to, I would be able to pinpoint the exact spot with my finger. My rib never hurt unless I was sleeping and laying on that side.
I don't think bone pain always has to be severe. In my case, I had lesions in my rib, spine, and hip. My back (multiple spots in the thorax) always kind of felt like a pulled muscle, but if you asked me to, I would be able to pinpoint the exact spot with my finger. My rib never hurt unless I was sleeping and laying on that side.
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Multiple myeloma bone pain - what to look for?
Hello Friends,
I was diagnosed with IgG kappa MGUS over the summer with an M-spike of 1.5 g/dL (15 g/l). I have been told to be alert for "bone pain". I also have a 10-year history of back issues. Although I am not "surgical," MRI tests reveal mild to moderate degenerative disc changes, arthritic changes, stenosis, etc. in my lumbar and cervical areas. I am also dealing with peripheral neuropathy and have been seeing a neurologist to sort through all of that.
Honestly, I'm very stressed with every ache and pain I feel, as I wonder if it's bone pain or perhaps related to a muscular strain, arthritic changes, neuropathy, or "just getting older".
Additionally, my kappa-lambda free light chain ratio is 2.8, IgG 2019 (694-1618 mg/dL, IgA 36 ( 81-463 mg/dL) IgM 91 (48-271 mg/dL ). I checked out OK in the fall in the 4 "CRAB" areas.
Any thoughts or suggestions from anyone more experienced than I would be appreciated!
Thank you,
JR
I was diagnosed with IgG kappa MGUS over the summer with an M-spike of 1.5 g/dL (15 g/l). I have been told to be alert for "bone pain". I also have a 10-year history of back issues. Although I am not "surgical," MRI tests reveal mild to moderate degenerative disc changes, arthritic changes, stenosis, etc. in my lumbar and cervical areas. I am also dealing with peripheral neuropathy and have been seeing a neurologist to sort through all of that.
Honestly, I'm very stressed with every ache and pain I feel, as I wonder if it's bone pain or perhaps related to a muscular strain, arthritic changes, neuropathy, or "just getting older".
Additionally, my kappa-lambda free light chain ratio is 2.8, IgG 2019 (694-1618 mg/dL, IgA 36 ( 81-463 mg/dL) IgM 91 (48-271 mg/dL ). I checked out OK in the fall in the 4 "CRAB" areas.
Any thoughts or suggestions from anyone more experienced than I would be appreciated!
Thank you,
JR
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ricejon - Name: Jon
- Who do you know with myeloma?: mgus (self)
- When were you/they diagnosed?: 2016
- Age at diagnosis: 47
Re: Multiple myeloma bone pain - what to look for?
Hi JR,
Just want to add a bit to what others said when this thread was started, since you recently posted a similar question to what Multibilly asked to begin the thread.
Prior to my multiple myeloma diagnosis, I'd had two herniated disks in my lower back for decades. I was used to the pain that would come and go with that. I normally felt it on the right side.
As I moved from smoldering myeloma to symptomatic multiple myeloma, I began to feel a different lower back pain. It was more on my left side, and usually a little duller than what I was used to.
I also had lytic lesions in a rib and a shoulder blade. I never felt anything weird in the rib area. The shoulder hurt off and on, like I'd strained something throwing a baseball.
I think the main takeaway from what people have said here is that the bone pain can be very different, depending on the different people. Like just about everything else about multiple myeloma.
Mike
Just want to add a bit to what others said when this thread was started, since you recently posted a similar question to what Multibilly asked to begin the thread.
Prior to my multiple myeloma diagnosis, I'd had two herniated disks in my lower back for decades. I was used to the pain that would come and go with that. I normally felt it on the right side.
As I moved from smoldering myeloma to symptomatic multiple myeloma, I began to feel a different lower back pain. It was more on my left side, and usually a little duller than what I was used to.
I also had lytic lesions in a rib and a shoulder blade. I never felt anything weird in the rib area. The shoulder hurt off and on, like I'd strained something throwing a baseball.
I think the main takeaway from what people have said here is that the bone pain can be very different, depending on the different people. Like just about everything else about multiple myeloma.
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Multiple myeloma bone pain - what to look for?
Hi Mike,
Thank you for taking the time to offer the reply. Your perspective is very much appreciated!
I am new to all of this and overwhelmed at times by my MGUS diagnosis and the peripheral neuropathy I've been experiencing. I'm doing my best to live my life, stay positive, and take it all one day at a time. It's not always easy, but I'm trying.
Good luck to you on your journey.
JR
Thank you for taking the time to offer the reply. Your perspective is very much appreciated!
I am new to all of this and overwhelmed at times by my MGUS diagnosis and the peripheral neuropathy I've been experiencing. I'm doing my best to live my life, stay positive, and take it all one day at a time. It's not always easy, but I'm trying.
Good luck to you on your journey.
JR
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ricejon - Name: Jon
- Who do you know with myeloma?: mgus (self)
- When were you/they diagnosed?: 2016
- Age at diagnosis: 47
Re: Multiple myeloma bone pain - what to look for?
Hi (again) Mike,
I intended to add in my previous message that since I had a full-body x-ray in August that came back "clean". I'm hopeful now that any aches that I am feeling in my back and ribs are not indicative of symptomatic "bone pain". I've always had an "achy" back, so it's just really difficult to discern what's what!
Thanks again,
JR
I intended to add in my previous message that since I had a full-body x-ray in August that came back "clean". I'm hopeful now that any aches that I am feeling in my back and ribs are not indicative of symptomatic "bone pain". I've always had an "achy" back, so it's just really difficult to discern what's what!
Thanks again,
JR
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ricejon - Name: Jon
- Who do you know with myeloma?: mgus (self)
- When were you/they diagnosed?: 2016
- Age at diagnosis: 47
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