My Pain Isn't a Number: How I Troubleshoot My Symptoms

Disclaimer: I'm not a doctor or medical professional. All comments and suggestions in this post are based on my personal experiences. Please keep my comments in the proper context and address your issues or concerns with your doctors.

The constant pain with metastatic breast cancer

With that said, I know a lot about pain. I'm in pain, you see, 24/7. This is a brand new experience for me, and learning to troubleshoot my pain has been one of the biggest learning curves I've had since I was diagnosed. I was in pain when I was diagnosed, but I didn't tell anyone, and that delayed knowing that I was metastatic for about three months. I've learned the hard way that it is vitally important to report all symptoms to your medical team!

Understanding how cancer impacts the bones

I have bone-only metastases (mets), and as I understand it when breast cancer spreads to the bones, it consumes the bone and replaces it. This is why the lesions/tumors are contained within the bone itself and do not grow out of it, unlike what happens in other organs or soft tissue.

I often tell people that breast cancer "eats" bones, as this creates a good visual. Whatever the actual mechanism, bone lesions in particular places can be excruciatingly painful, especially those bones needed for weight-bearing (e.g., pelvis, femurs, etc.), the bones needed for movement (e.g., joints), and those that assist in keeping one upright (e.g., spine).

The challenge: identifying the source of pain

So, when a person has cancer, has bone mets or some other kind of mets, is taking cancer medication that can cause many side effects and is also aging, how can anyone know what is causing pain?

From what I've observed in my own care and heard from others, the process of troubleshooting the cause of pain is not unlike troubleshooting any other issue—you start with the obvious, known information and then work by a process of elimination to determine the culprit. As with different types of troubleshooting, the answer is not always clear, but eliminating options and narrowing the field of possible issues is key.

My approach to understanding and managing pain

1. I become a pain detective

I gather the following information:

• When did my pain start?
• How long did the pain last?
• When does the pain occur (time of day, activity level, specific movement, etc.)?
• What helps alleviate it?

This information is invaluable to my medical team, and I often cannot gather it myself.

Asking my caregivers and the people around me for instances when they've noticed I'm in pain is helpful. Once you have chronic pain, it's often hard to tease out specifics. As an aside, I hate the pain chart and wish I didn't have to use it. I have a high pain tolerance, and attempting to quantify the pain with a number is often extremely difficult.

2. I communicate with my medical team

One of the first steps with any new symptom is ensuring that the pain isn't from a new or growing met. I have to say that this is the hardest step because, frankly, my first thought is always that the cancer has spread, and sometimes, I genuinely don't want to know for a bit. This avoidance strategy hasn't served me super well, but it's usually my default.

When I complain about pain, the first thing my doctors think about is testing. Name a test, and I've had a bunch of them. For instance, I get a lot of headaches and have had at least a dozen brain MRIs. Each of them has confirmed I have a brain, and it's operational, but no cancer. While I do get somewhat concerned about the radiation from the tests, the desire to know (once I've gotten past the avoidance stage) usually outweighs those concerns.

An important note to consider when deciding who on the medical team to contact is that each doctor will provide advice or input from their own specialty. For instance, my orthopedic doctor is primarily concerned about my bones, my physical medicine doctor is mainly concerned about my soft tissue, and my medical oncologist is primarily concerned about whether or not the cancer is behaving itself.

Talking to the wrong doctor about pain symptoms can be frustrating. This is where I insist that my doctors communicate with each other, brainstorm together, and then develop a plan. Although I shouldn't have to facilitate this brainstorming, I often do.

3. I explore complementary care

Most medical doctors follow the allopathic model (i.e., document symptoms, arrive at a diagnosis, prescribe medication), but I've found a great deal of valuable insight from my functional medicine doctors. Functional medicine is focused on finding the root of the issue and treating the source.

I know that complementary practitioners are often not covered by insurance, and this can be challenging for many. I've found a great deal of flexibility in the functional medicine world—for instance, I have agreements to pay less than the "normal" rate at various offices. I play the "cancer card" whenever I can.

4. I connect pain to everyday life

I suppose this isn't always fourth on the list, but it can be at any point. If I've fallen, for instance, that's probably a good indicator that new pain came from that. If I've been more or less active than usual, that's usually a factor. If something else in my everyday routine is different, for example, my boys had winter break recently, and that meant I was on my feet more during the day, then that can affect my pain.

My mood also affects my pain. If I haven't been in good spirits—and the holidays can be hard for anyone, but especially those of us living with a death sentence hanging over our heads—that can affect my pain. If the weather has changed recently, that can affect my pain. If the regular things I do to control my pain, like going to yoga, haven't happened as consistently, that can affect my pain.

5. I make sure I'm getting sufficient sleep

This last factor seems odd, but I've noticed that so many things are affected by a lack of sleep or a lack of restful sleep. Pain affects my sleep in that I can't lie on either side for very long and haven't been able to do so since the titanium rods were inserted into both of my femurs.

Everything is heightened when I don't get sleep, and my emotional capacity to handle any deviation in my routine is negatively affected. If I think I'm experiencing something new, I wait to see if I can get good sleep before I ring any alarm bells.

I'm sure there are other factors or troubleshooting ideas that I can't think of now - what are yours?