Peripheral neuropathy, a sensation of numbness, tingling, weakness, or pain, is a common and sometimes debilitating side effect of chemotherapy and other lymphoma treatments. Members of MyLymphomaTeam talk about neuropathy in their feet, hands, and legs. Neuropathy symptoms can affect a person’s quality of life and make it hard to walk, drive, get dressed, or sleep.
A MyLymphomaTeam member likened it to “the pain of shingles.” One member shared that they can’t feel their feet and hands and that they struggle to perform daily tasks such as picking up small objects and buttoning a shirt. “Very painful neuropathy in my legs and such burning, tingling feet!” wrote another member.
Peripheral neuropathy occurs when the nerves are damaged. Nerves are cells that carry signals from the brain to other parts of the body and back again. The nerves found outside of the brain and spinal cord are called peripheral nerves. When these nerves are damaged, people experience unusual sensations.
Lymphoma or its treatments cause nerve damage, although not everyone experiences symptoms. People living with both non-Hodgkin lymphoma (NHL) and Hodgkin lymphoma (HL, also called Hodgkin’s disease) may develop neuropathy.
Among people living with lymphoma, three things may lead to peripheral neuropathy. Neuropathy may appear as a symptom of lymphoma. Additionally, lymphoma treatments can damage the nerves. Finally, lymphoma can put a person at risk for other diseases that cause peripheral neuropathy.
Lymphoma may directly cause neuropathy. It can do so in a few different ways:
People with NHL are more likely to experience neuropathy as a lymphoma symptom compared to people with HL. When neuropathy is caused by cancer itself, lymphoma treatment may help the neuropathy disappear.
Chemotherapy-induced peripheral neuropathy (CIPN) occurs when lymphoma treatment damages the nerves. Some of the chemotherapy drugs most likely to cause CIPN include:
CIPN develops in 30 percent to 40 percent of people who undergo cancer treatment.
“Chemo may have saved my life, but it did a lot of nerve damage to my legs and feet,” confirmed one MyLymphomaTeam member. “My doctor said my neuropathy is from Oncovin, a drug given by infusion,” shared another.
Peripheral neuropathy side effects eventually subside or resolve after completing treatment. “I had numbness in my hands and feet, but it went away. The numbness is common and will likely get better after treatment stops,” explained one MyLymphomaTeam member.
Sometimes, however, neuropathy symptoms linger beyond the end of lymphoma treatment. Notify your doctor when neuropathy develops or if it worsens so they can keep an eye on complications and help you manage the symptoms.
People with lymphoma may also have other health conditions that affect the nerves. The most common cause of peripheral neuropathy is diabetes. About 60 percent to 70 percent of people with diabetes have neuropathy. The following may also lead to nerve damage:
People with lymphoma are more likely to be diagnosed with other health conditions, including diabetes and kidney disease. If you have any of these other health problems, you may be more likely to experience nerve problems. It may sometimes be difficult to determine what exactly is causing the pain. One MyLymphomaTeam member with fibromyalgia reported, “I have sharp shooting pains in my feet throughout the day and especially at night. I’ve had this for years before I was diagnosed with cancer … I’m not sure if it’s from the low-dose chemo or if I’m in a bad fibro flare.”
Tell your health care team about any other health conditions you are experiencing. Being diagnosed with another condition may have an impact on your treatment options.
There are three main types of nerves. Symptoms of neuropathy vary depending on which type of nerve is damaged. Sensory nerves take information from the body to the brain. They convey information about all of the different sensations experienced around the body. The brain then sends information back to the body using motor nerves, which tell the muscles how to move. Additionally, autonomic nerves communicate with the brain to control “automatic” processes in the body like heart rate, blood pressure, digestion, and urination.
Symptoms of peripheral neuropathy include:
Peripheral neuropathy can also create unusual sensations in the hands or feet. For example, it may feel like something is in your shoe. “I have the sensation that I am walking on wadded-up socks,” one member commented.
Your doctor may recommend one or more of the following treatment options for managing peripheral neuropathy. Many members of MyLymphomaTeam have seen an improvement in symptoms after trying these therapies.
Nerve pain is typically treated with antidepressants, anticonvulsants, and pain medications. Commonly prescribed drugs include:
Doctors may also prescribe corticosteroids such as Decadron (dexamethasone) to reduce inflammation associated with neuropathy.
Many members of MyLymphomaTeam report that gabapentin effectively treats their neuropathy. “I take it for nerve pain and it works well,” said one member. “I’ve been on it for a while, and no more nerve pain,” wrote another.
Pain medications for neuropathy may cause drowsiness, fatigue, water retention, and other side effects. If you notice bothersome side effects, you can ask your doctor about lowering the dose or switching medications.
Doctors often prescribe Tylenol (acetaminophen) for mild neuropathic pain. Topical creams and patches, such as lidocaine, may also be recommended to numb or reduce localized neuropathy.
Nonsteroidal anti-inflammatory drugs (NSAIDs) such as aspirin or ibuprofen for mild pain should only be used with the consent of your doctor. NSAIDs can cause dangerous reactions with other medications.
In some people, peripheral neuropathy may be related to vitamin deficiencies. In particular, people with low levels of vitamin B12 may be more likely to experience this condition. Some MyLymphomaTeam members take dietary supplements such as vitamins and minerals to relieve neuropathic pain. “Taking my B and D vitamins, as I really do think they help,” said one member.
Always speak with your doctor before trying a new supplement, including vitamins. Some supplements can be dangerous in large doses or cause interactions with medications.
Many MyLymphomaTeam members swear by medical marijuana or cannabidiol (also called CBD), where legally available when other pain medications fail. Although studies have found that these products often help relieve nerve pain and improve sleep, they may lead to side effects like difficulties focusing, tiredness, wheezing, and a sore throat.
“The only thing that helped me with neuropathy was medicinal marijuana,” said one member. “Medical marijuana works quite well for my neuropathy and also lessens restless legs and arms,” shared another. Another member agreed: “I use CBD gummies for restless legs as well. Thank goodness for them.” A third member with neuropathy wrote, “I use CBD pain cream on my foot and find it very helpful.”
Always consult with your doctor before using medical marijuana, as it may interact with your lymphoma treatment.
Physical therapy is one of the most effective treatments for peripheral neuropathy. It can help with balance, strength and pain. “My physical therapist said to walk at least two minutes, and up to 20 minutes, if possible,” said one member. “Also, the leg exercises she taught me helped a lot.”
Occupational therapy may also be able to help you deal with pain. If you have ongoing problems completing daily tasks because of neuropathy, an occupational therapist can help you learn new skills or make adaptations so that you can continue to do the things you want to do.
Low-impact activities — such as swimming, biking, yoga, tai chi, and stretching — can help with peripheral neuropathy and relieve the stress that can make it worse.
A special type of massage called oncology massage — performed by therapists licensed in the technique — is designed specifically to manage stress, pain, swelling, and other side effects in people with cancer. “A massage sounds really good at this time,” said one MyLymphomaTeam member. “I’m in remission but still feeling stressed and tense.”
If you’ve lost feeling in your hands or feet, there are several ways to stay safe:
You can also change certain habits to prevent peripheral neuropathy from getting worse. In particular, drinking alcohol can further damage nerves, so people with this condition should avoid alcoholic beverages. Extreme temperatures or tight-fitting clothing or shoes can worsen nerve pain. Performing daily tasks while sitting down rather than standing may also help with nerve pain in the feet or legs.
MyLymphomaTeam is the social network for people with lymphoma. On MyLymphomaTeam, more than 9,500 members come together to ask questions, give advice, and share their stories with others who understand life with lymphoma.
Do you have peripheral neuropathy? Share your experiences in the comments below, or start a conversation by posting on MyLymphomaTeam.
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