Pain is one of the most common symptoms of myeloproliferative neoplasms (MPNs), a group of blood cancers characterized by abnormal development of stem cells in the bone marrow.

This pain is often caused by MPNs themselves, but can also arise as a side effect of treatments for the cancer. MPN-related pain can come in many forms and affect different areas of the body, depending on the type of MPN.

If you’re experiencing MPN-related pain, there are ways to treat or alleviate it. It’s important that you work with your doctor to find ways of managing it.

What Types of Pain Do People With MPNs Experience?

According to a study conducted by the American Society of Hematology (ASH), more than half of people living with MPNs experience pain as a result of the disease.

In the survey of 502 people with MPNs, more than 42 percent of participants expressed dissatisfaction with their current pain management plans. Fewer than 44 percent of respondents reported discussing pain with their health care providers, suggesting that pain is highly overlooked in the treatment of MPNs.

It’s important to speak up about any pain or discomfort you experience as a result of your cancer or the treatments you take. Here are some common types of pain that many people living with MPNs report.

Abdominal Pain

People living with MPNs frequently complain of abdominal discomfort. This is especially true for people with polycythemia vera (PV) and primary myelofibrosis (MF). Abdominal discomfort in MPNs may result from an enlarged spleen.

In the ASH study, 53.2 percent of participants reported abdominal discomfort. In a different study published in Mediators of Inflammation, 72 percent and 63 percent of people with MPNs reported abdominal discomfort and abdominal pain, respectively.

Bone Pain

Bone pain is one of the primary symptoms of myelofibrosis and a common symptom of polycythemia vera. This pain is believed to result from an excess amount of cell turnover in the bone marrow, inflammation of the periosteum (the layer of connective tissue that surrounds bone), and hardening of the bone (osteosclerosis). According to the ASH study, 48.5 percent of people with MPNs experience bone pain.

Joint Pain

In people with MF, an overproduction of blood cells can cause a buildup of uric acid, leading to painful joint swelling (also known as gout). This complex form of arthritis, which usually occurs in the joint at the base of the big toe, can cause redness, swelling, and tenderness in the joints.

Headache

An overproduction of blood cells can also cause the blood to thicken, a condition known as hyperviscosity syndrome. This increase in viscosity (thickness) makes blood move more slowly than normal, leading to a decrease in blood flow to the central nervous system. This can cause headaches, as well as other neurological symptoms.

Headache may also be a side effect of MPN treatments, including chemotherapy and Ruxolitinib, a Janus kinase inhibitor approved by the U.S. Food and Drug Administration (FDA) for MPNs.

How Is MPN Pain Treated?

MPN-related pain can be managed with a variety of treatment options. While MPNs are considered incurable, treatments are available for all forms of the disease. The goal of treatment for MPNs is generally to reduce excess blood counts to their normal levels. In PV, treatments are given to reduce the amount of red and white blood cells. In essential thrombocythemia (ET), the goal is to prevent thrombosis and to reduce the platelet count.

People living with MPNs can get relief from pain and other symptoms by following through with the treatment plan laid out by their doctor. Treatment is prescribed depending on age, the severity of the disease, medical history, and the individual’s general health. Some treatments may have side effects that will be explained to you by the doctor. If you experience any unexpected side effects, contact your doctor immediately.

Your doctor may also offer some recommendations on how to prevent pain and other symptoms. Below are some of the treatment options for MPN symptoms that may relieve your pain. Depending on its location and severity, MPN-related pain may be relieved by some topical medications, home remedies, or lifestyle changes.

Topical Medications

Topical medications, such as creams, lotions, and gels, can be rubbed into the skin to help ease pain. Some of these medications may come in the form of sprays or patches that stick to the skin. Topical medications are best for bones and joints that are nearest to the skin surface.

Aspirin

Aspirin is given in small doses to help prevent the formation of blood clots in the body. Blood clots, which are responsible for some symptoms of MPN, result from the clumping together of platelets.

Massage

Gentle massages on the affected areas may help soothe painful bones and joints, ease anxiety and stress, and improve range of motion.

Yoga

Combining deep breathing, body poses, and meditation, yoga is popular with people experiencing various kinds of bone and joint pain. It helps reduce joint pain and stiffness, improves relaxation, and boosts your mood.

Tai Chi

This practice, which originated in China, involves a combination of deep breathing, gentle flowing movements, and meditation. Tai chi may help reduce joint pain, improve range of motion and function, and increase feelings of well-being.

Weight Loss

According to the Arthritis Foundation, losing one pound of weight reduces four pounds of pressure on painful joints. You can achieve and maintain a healthy weight with a combination of a balanced diet and regular physical activity.

Help for MPN Headaches

Mild headaches caused by MPNs may be temporarily relieved with over-the-counter medications, cold compresses, massage, and other home remedies.

Over-the-Counter Pain Relievers

Over-the-counter pain relievers, such as aspirin, Advil or Motrin (ibuprofen), or Aleve (naproxen sodium), can help alleviate mild to moderate pain.

Cold Compresses

This is a simple, safe, and inexpensive way to relieve headaches. Cold compresses — such as an ice pack wrapped in a soft towel or a washcloth soaked in cold water — help numb the painful area. They can reduce inflammation and constrict blood vessels, easing the pain caused by headaches.

Aromatherapy

This is the use of essential oils to relieve headaches. Lavender and peppermint oils have been known to help people relax, as well as relieve the pain of migraine headaches.

Pressure Point Massage

Applying pressure to certain points may help relieve headaches. You can try gently rubbing areas where you’re experiencing pain, such as the temples or eyebrows, to help alleviate mild tension and stress.

While these methods may help manage occasional, mild to moderate headaches, you should see your doctor if you experience frequent or severe headaches. These may require prescription treatments.

You Are Not Alone With MPN Pain

The pain caused by MPNs can impact your day-to-day life. If you’re experiencing pain, don’t hesitate to let your hematologist or primary care doctor know. They’ll be able to advise you or prescribe the appropriate treatment.

Many people are sharing their stories on myMPNteam, the social network for people living with MPNs.

What is life with MPN like for you? Have you found ways to manage your pain? Leave a comment below and join the discussion on myMPNteam today.