Oh My Aching Bones...

What the…!!!

How can I be in remission with ridiculous bone pain?!! What now is happening in my life?!

Shocking pain

This isn’t my normal rant, but I have to tell you that since I was diagnosed, my life has not been quite the same. And it’s not that I believed it wouldn’t be different; it’s just hard to connect all the dots with this situation. I can recall about 5-6 years ago, we were just getting new floors put in my kitchen and I was downstairs in brutal pain. My whole body practically shut down, even my whole neurologic system was being depressed. I couldn’t walk! Literally, I was on the carpet sliding across the floor. I made it up a step to get my husband’s attention.

I knew this wasn’t ordinary. “How can it be?" The pain and uncertainty lasted about 2-3 days. I was so careful not to panic the contractor, by holding my mouth with grunts as I held in that pain. I didn’t want him to think I was being murdered downstairs. We went straight to the emergency room; however, to this day, no one knows exactly why and how it happened. It was simple to blame multiple myeloma at the time, as hey why not… that’s what I have right, but it had to be more to it than that.

Old bones or just multiple myeloma?

I won't lie that the prior situation has always stayed in my mind, as the whole ordeal came out of the blue, and I couldn’t walk. I totally get that myeloma tends to weaken the bones with soft spots better known as lytic lesions. It’s just interesting how the complexity of the disease works. You’re either hit with trauma to your body, crazy anemia, or horrific bone lesions. It’s absolutely insane! But yet I’m not sure if the inconsistent discomfort was actually early signs of arthritis or aging. Was it really my myeloma or just old bones?

Now considering 85 percent of patients experience some form of bone damage, how normal was my experience of blinding pain?1

Confusion ensues

Many doctors throw the term inflammation of the joints around when patients like me complain of pain. I’m sure many can relate to getting a PET, CT or MRI that read normal or had no visible lytic lesions, yet you are still experiencing debilitating discomfort. The terminology can get a bit confusing, especially when trying to explain pain to your team, and they just don’t get it. Here are some things to know when navigating conversations about joint and bone pain:

Arthritis is the term for joint pain or joint disease. It is often broken into the terms “inflammatory” and "noninflammatory”.2 I know, it can get confusing…

Rheumatoid arthritis is a type of inflammatory arthritis. This condition affects an estimated 1.5 million people in the United States.3 The problem with this condition is it harshly attacks our joints, whether it be the hands, feet, knees, with inflammation.

Osteoarthritis is noninflammatory arthritis. This condition is caused when there’s been wear and tear on the joints. The problem spots are similar to inflammatory arthritis, affecting hand, feet, knees, and more importantly the spine.2

Now what? Talk to your doctor about your pain

Well, this is the problem with multiple myeloma. We really can’t pinpoint the cause or the culprit, as our pain strikes various areas of the body. However, the consensus is that this disease shares similar comparisons with bone conditions.

Well, as always, it’s mandatory that we speak with our healthcare team to advise of any changes in the pain, or better yet how to deal with the pain. If you feel like you’re running in circles trying to get people to respond to your discomfort, perhaps speaking to a pain specialist or even a rheumatologist might help. I don’t like feeling powerless but, by paying attention when pain changes or moves around, it is vital to let someone know… and quickly!

Finding comfort and avoiding future bone damage

So many uncertainties here, but trying to care for these aching bones in any way we can and trying to lessen further damage is a must. Many myeloma patients know all too well that bisphosphonates are often suggested to slow down any damage, that can cause fractions. There are also supplements such as fish oil, or other invasive methods like surgery and radiation treatment. My go to for some relief is low to moderate exercise, which I found to effective when lightly maintained. I know this on and off again pain is often not normal, yet it is normal in my new routine.

The time to fight is now, with integrity, grace, hope, and a smile….when you feel like it

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