Lymphoma often includes many uncomfortable or painful symptoms, including aching joints or bone pain. Many people in the MyLymphomaTeam community have reported struggling with frequent pain before, during, and after undergoing treatment.
“Currently I am having trouble with my legs hurting so bad and having trouble walking. Doctors don’t know why,” one MyLymphomaTeam member commented. “I have trouble getting up in the mornings. My whole body hurts, even my feet,” wrote another. Sometimes, members deal with pain that lasts long after the lymphoma disappears. One member lamented, “I’m in pain today. Why after five years and clear of tumors do I have bone pain?”
There are three main reasons why people with lymphoma may experience pain:
Pain may be a symptom of lymphoma for several reasons. Lymphoma develops when lymphocytes (a type of white blood cell) become damaged and start growing too quickly. These cancerous lymphocytes build up in the lymph nodes or in other organs of the lymphatic system (the system that helps the body fight infection and get rid of waste). As a result, lymphoma often leads to swollen lymph nodes, tumors, and enlarged organs.
Swollen lymph nodes are the most common lymphoma symptom. These swollen lymph nodes are not usually painful. However, some people with Hodgkin lymphoma experience lymph node pain after drinking alcohol.
Enlarged lymph nodes may press on nearby tissues, which can sometimes lead to pain. For example, when lymph nodes in the chest grow bigger, they may press on nerves or tissues and cause chest pain. Swollen lymph nodes in the abdomen or an enlarged spleen or liver can lead to abdominal pain. Additionally, cancer cells occasionally spread to the bones and cause pain there. “I have joint pain most days of the week. It feels like I have walking mono,” said one MyLymphomaTeam member.
Lymphoma treatments can also cause pain. Headaches, stomach pain, muscle pain, and nerve pain are all side effects of chemotherapy. Several MyLymphomaTeam members have experienced this side effect. “Doing chemotherapy now,” one member posted. “Lots of pain in the joints after the treatment.”
In particular, pain can be a side effect of the medication pegfilgrastim, which goes by the brand names Neulasta and Udenyca. Chemotherapy often reduces white blood cell levels, but pegfilgrastim can help boost these levels again. Taking this drug helps protect people from infections and allows them to continue using aggressive chemotherapy drugs.
Quite a few MyLymphomaTeam members have said that pegfilgrastim can be painful. “Pain from Neulasta shot is still lingering, and all my joints are aching,” said one member. Another agreed: “Had treatments this week and Udenyca shot on Friday. Bad bone pain, headache, and a little dizzy.”
Some people with lymphoma have comorbidities (other health conditions). Comorbidities have been found in about 3 out of 10 people with Hodgkin lymphoma and more than half of people with non-Hodgkin lymphoma. Older adults may be especially likely to have other conditions. Some comorbidities, including diabetes-related nerve damage or arthritis, may cause pain.
As much as 95 percent of cancer-related pain can be treated. Doctors can recommend many strategies or prescribe different types of medication for pain relief.
If lymphoma is the cause of aches, cancer treatments may help. One member who finished chemotherapy treatments reported, “I got some relief from my back pain after the first cycle and complete relief after the second cycle.” Additionally, treatment-related pain usually goes away once the treatment is done. However, nerve-related pain may take longer to disappear. Sometimes it never completely leaves.
It is important to talk to your health care team about managing your cancer pain. Aches and pains can often make other lymphoma symptoms seem worse. Treating pain may help you stay on your lymphoma treatments longer and have a better quality of life.
Doctors recommend many types of medications depending on your medical history and preferences. Drugs that relieve pain are available both by prescription and over the counter. Additionally, medications used for other health conditions can also help reduce pain. These drugs include antidepressants like duloxetine (Cymbalta) or anti-seizure medications like gabapentin (Neurontin). Opioid medications are often used for more severe pain.
Many members of MyLymphomaTeam have taken medications to reduce pain:
Medical marijuana is also widely prescribed for lymphoma symptoms and side effects. “Weed works,” said one member who uses it for pain. Cannabis products are currently legal for medical purposes in 37 U.S. states, four territories, and the District of Columbia. In places where medical marijuana is not yet legal, cannabidiol (CBD) may also help. “I use CBD and pot for relief. Works very effectively,” one member commented.
It is very important to check with your doctor before taking any over-the-counter medications, herbal supplements, vitamins, or other pain relievers. Some products, including herbs and natural products, can interfere with cancer treatment.
Doctors sometimes recommend avoiding certain painkillers that also reduce fevers, such as nonsteroidal anti-inflammatory drugs (NSAIDs). Fevers can be a sign of infection, and taking drugs that block this symptom may make it harder to tell when you’re fighting off germs.
“My doctors were afraid that Tylenol or ibuprofen would mask an infection, so I could only take what was prescribed,” shared one member. Ask your doctor which medications are a good fit for you.
Medication is not the only way to reduce pain. There may be things you can do at home to ease joint aches. For example, deep breathing exercises and meditation can help treat pain. Many apps and websites can help you learn how to meditate or guide you through visualization exercises.
Additionally, using ice packs or heating pads may reduce pain. Check with your doctor first to make sure that these approaches won’t interfere with treatment.
Distraction can also be a useful tool: “I walk daily, drink plenty of water, spend time with friends and family, read a little, watch TV … in other words, stay busy. It has helped me,” one member posted.
Some complementary therapies are also effective at reducing aches and pains. These therapies may include:
Some MyLymphomaTeam members have had success with these approaches. One member commented that her husband had been dealing with pain around his midsection. “He went to a local physical therapist who does ‘dry needle acupuncture.’ He had great results,” she said.
When looking for a specialist for any of these therapies, it may be helpful to find practitioners who have experience treating people with cancer. This way, they can tailor your therapy to your specific condition and any treatments you may be receiving.
Modifying your treatments may be an option. Some people have been able to take pegfilgrastim at a lower dosage. One member’s husband was struggling with severe bone pain after pegfilgrastim shots, so she suggested he receive half the dosage. “Next shot, he was much better,” she shared. “Some pain, but not severe.”
Others have switched from pegfilgrastim to other, similar medications. One MyLymphomaTeam member described having a bad reaction to pegfilgrastim: “Had chest pains and hip pains. Thought I was having a heart attack. Neupogen is a smaller dose and not as bad.” Other members have also switched to other drugs. “I had severe leg and back pain and couldn’t move my legs for 30 minutes from Neulasta,” commented one member. “I now do Zarxio shots, which cause a little pain, but not like Neulasta pain.”
If you are experiencing aches from a particular treatment, tell your health care team. Try asking your doctor if it’s possible to try a new dosage or to switch to a different treatment.
MyLymphomaTeam is the social network for people with lymphoma and their loved ones. On MyLymphomaTeam, more than 12,000 members come together to ask questions, give advice, and share their stories with others who understand life with lymphoma.
Do you have aching joints while living with lymphoma? Share your experience in the comments below, or start a conversation by posting on MyLymphomaTeam.