Multiple myeloma is a cancer of a type of white blood cell called plasma cells. These cells can grow aggressively, filling up the bone marrow and preventing the formation of healthy blood cells (like red blood cells and platelets). The cancer cells can grow into the skeletal bone, causing bone damage and painful tumors or fractures. This can also cause calcium to come out of the bones, raising blood calcium levels to a dangerous degree, and creating soft spots in the bones called osteolytic lesions.

Occasionally people develop a single myeloma tumor, called a plasmacytoma, that can be treated locally (for instance, with radiation). Multiple myeloma is a systemic condition.

The majority of those living with multiple myeloma experience pain, some as a result of osteolytic lesions, which affects their quality of life. In fact, more than 285 members of MyMyelomaTeam report experiencing bone pain as a common symptom of their condition.

“Imagine your bones being stuffed so full of plasma cells that it’s crowding your good cells within your bone,” explained one MyMyelomaTeam member.

To learn more about this issue, MyMyelomaTeam talked with Dr. James Hoffman, assistant professor of clinical medicine at the Sylvester Comprehensive Cancer Center, University of Miami. His focus is on plasma cell diseases, such as multiple myeloma.

What Does Bone Pain From Multiple Myeloma Feel Like?

Multiple myeloma affects people in different ways, but most say that bone pain is a frequent and sometimes debilitating symptom. Members of MyMyelomaTeam describe bone pain in their own words:

• “My leg pain was so bad I could not eat, sleep, or walk.”
• “I was miserably in pain.”
• “I used to not be able to wear shoes because I felt like my feet were on fire.”
• “For me, the pain is a very deep, dull pain.”
• “It was excruciating.”
• “This pain is just not going away, no matter what I do.”
• “Nothing can seem to kill the pain, so I get maybe one or two hours of sleep a night.”

CRAB

Eighty-five percent of people with multiple myeloma experience osteolytic lesions or bone loss (osteoporosis). How do doctors differentiate between multiple myeloma and other related conditions, such as monoclonal gammopathy of undetermined significance (MGUS)?

“We teach the medical students to remember the acronym CRAB,” Dr. Hoffman told MyMyelomaTeam. “CRAB stands for the ways that myeloma can hurt people.”

• C – High calcium levels (hypercalcemia)
• R – Renal (kidney) damage
• A – Anemia (low red blood cell count)
• B – Bone lesions

“This is a bone marrow illness, so the soft part of the inside of the bones is where the blood cells are born, and that's where these cancer cells grow,” Dr. Hoffman said. “When the myeloma cells grow within that marrow, they influence the skeletal bone — the hard bone around the marrow — and weaken it.”

This bone loss causes soft spots, or lesions, within the skeletal bone. Weakening of those areas can cause broken bones and pain. People who are already in pain from a broken bone may experience more distress upon learning they may need radiation therapy, surgery, or chemotherapy.

“It can be a really rough and overwhelming experience where you have this symptom that needs to be handled, and at that same time, you need a total body treatment to prevent more problems,” Dr. Hoffman said.

Treating Osteolytic Lesions

Radiation can be used to treat individual osteolytic lesions, but it’s not the only treatment option at a doctor’s disposal. It’s appropriate when someone experiences pain in a particular area, but medicine targeting the entire body is needed when many areas are affected — as is most often the case. According to the International Myeloma Working Group, medications called bisphosphonates may be used along with other myeloma therapies to help strengthen bones and reduce fracture risk.

“For the majority of myeloma patients, it’s a total body illness from day one,” Dr. Hoffman said. “When that occurs, the best approach is often total body medicines, and thankfully we live in an era where the medications for myeloma are very effective.”

“It's really the total body medications that are critical,” Dr. Hoffman said. As long as doctors provide people with multiple myeloma treatment quickly, using medications that treat the entire body, pain should decrease.

Can You Treat Myeloma Pain on Your Own?

People living with multiple myeloma may wonder if they can provide pain relief for themselves. Dr. Hoffman advised against doing so, because without monitoring by a medical professional, a lot can go wrong.

“Every type of pain medicine can be very helpful and has some negatives, so there's a real artfulness and a science to how you manage pain,” he said.

People with multiple myeloma are at risk for kidney problems, and high doses of Ibuprofen or pain relievers such as Motrin or Advil may compound the issue. Narcotic or opioid medications can have significant therapeutic value, but have their own negatives.

“That can cause a lot of constipation,” Dr. Hoffman said. “Patients are best treated in a multidisciplinary environment where you can have pain management, radiation management, hematologists, oncologists, nutritionists, psychologists, all of these people helping at the same time.”

What Should You Ask Your Doctor?

Receiving a multiple myeloma diagnosis can be frightening, and some doctors are more skilled than others at breaking the news. Dr. Hoffman said that he’s acutely aware of how sensitive this situation is, and he knows that from the questions he’s asked.

“Some people … are like, ‘Doc, tell me what to do so I can get to tomorrow,’” he said. “I think it's important to come out of the first visit understanding what you have, what the details of your illness are … and then having at least a sense of what treatment is going to be like.”

Dr. Hoffman recommended people receiving a diagnosis of multiple myeloma see themselves as partners with their medical teams. “This helps alleviate anxiety,” he said. “[You] don't feel like things are being dictated to you from outside.”

You Are Not Alone With Myeloma

By joining MyMyelomaTeam, the social network and online community for those living with multiple myeloma, you gain a support group more than 7,700 members strong. Bone pain is one of the most discussed topics.

Here are some conversations on MyMyelomaTeam about bone pain:

• "Anyone else take a steroid for bone pain?"
• "What are the symptoms besides back pain?"
• "I've heard a lot about bone lesions."
• "I have two vertebral compression fractures and it is painful. Trying to decide if I will go through with a kyphoplasty or just wait it out."

How does bone pain affect your daily life? Has your doctor found the right medication to manage your myeloma symptoms? What helps you successfully get through each day? Share your tips and experiences in a comment below or on MyMyelomaTeam.