Do you have a sensation of numbness, tingling, or weakness in your feet, hands, or legs? You’re not alone. Peripheral neuropathy is a common - and sometimes debilitating - complication of multiple myeloma that can make walking, driving, or sleeping difficult.
Approximately 75 percent of people with myeloma develop peripheral neuropathy during treatment, according to the International Myeloma Foundation.
Members of MyMyelomaTeam talk frequently about the painful symptoms of peripheral neuropathy. One described the feeling as “standing in coal and fire.” Another MyMyelomaTeam member called it a “burning, tingling, numbness.” She went on to describe her experience of peripheral neuropathy: “At night, I feel a spastic electrification of nerve endings and, at times, an electrical shooting pain that wakes me up. I’m also sensitive to anything touching the top of my feet.”
Neuropathy affects quality of life for many MyMyelomaTeam members, too. One member said her husband “has become a hermit and doesn’t get out of his recliner.” Others say they don’t drive anymore because they can’t feel their feet.
Chemotherapy-induced peripheral neuropathy (CIPN) is the primary cause of this side effect, but myeloma itself can also cause the nerve pain, numbness, and tingling.
“Our neurologist told us, ‘There’s no pill I can give you to help with neuropathy. You have multiple myeloma, you’re on chemo. Both of those things cause neuropathy," shared one MyMyelomaTeam member. Another said, “My neuropathy began after Velcade (Bortezomib) shots. It has gotten worse over the past few weeks, so my doctor decreased the dosage.”
Neuropathy may disappear once treatment is completed, or the dose is lowered. “I had numbness and severe bone pain that required a walker while I was in treatment,” said one man. “I’ve now walked without assistance for 10 years.”
Some MyMyelomaTeam members experience pain and tingling well after treatment is over. “Neuropathy can take a long time to subside, or it may never go away. I've met people who are four years in, and their doctors told them if it hadn't left by now, it probably won't,” said one member.
Consult with your doctor as soon as you feel symptoms of peripheral neuropathy, and if you feel it worsen.
Your doctor may recommend one of the following treatment options for managing peripheral neuropathy
CIPN is typically treated with antidepressants, anticonvulsants, pain medications, analgesics, or a combination of these classes of medication. Commonly prescribed drugs include: Neurontin (Gabapentin), Elavil (Amitriptyline) Lyrica (Pregabalin), and Cymbalta (Duloxetine).
“After the doctor increased my Gabapentin prescription, my back, hip, neck, and hand pain are now tolerable. Thank goodness for miracles,” said one MyMyelomaTeam member. For other members, the pain drug didn’t work. “I’m currently taking Gabapentin four times a day, and the pain is still there. Sometimes it brings tears to my eyes,” said one man.
Several MyMyelomaTeam members experienced better results by switching drugs. “Gabapentin didn't work, but Lyrica did. It got rid of the painful electrical zings, but both feet are still numb and hot/cold,” said one member. “The pain has improved from a 10 to a one most days with Cymbalta,” said another member.
Doctors may also prescribe corticosteroids to reduce inflammation associated with neuropathy.
For mild-to-moderate neuropathic pain, doctors typically recommend Tylenol and topical pain patches and creams, such as lidocaine. Non-steroidal anti-inflammatory drugs (NSAIDs) such as Ibuprofen or Naproxen should be avoided because they can increase the risk of kidney damage in people with myeloma.
Many members of MyMyelomaTeam massage cocoa butter into their feet, hands, and legs, or apply menthol-based creams to affected areas several times a day.
Members recommend B vitamins for neuropathy. “B complex has worked for my neuropathy. My toes were numb and now I actually feel them!” exclaimed one member. Another said, “I take B-12 twice a day and have zero neuropathy.”
“Our daughter, a nurse, told us to try a good vitamin B complex and amino acids. It helped my husband more than Gabapentin (and doesn't have bad side effects),” shared one woman. Always consult your doctor before starting a new supplement. Some supplements may interact with myeloma treatments.
Many members of MyMyelomaTeam swear by CBD, where legally available, when other pain medications fail.
“I’ve been taking CBD oil for a month now. Most of my pain is gone. There weren’t any meds that helped my pain before this,” shared one woman. Another said, “I take 10 doses of dexamethasone every Friday. By Monday, it has worn off and pain sets back in. (I’m talking severe nerve pain here). I’ve started using CBD cream and it's a miracle in a tube.”
Always check with your doctor before starting any new alternative remedies, as they may interact with your myeloma treatment. Some alternative treatments should be avoided before stem cell transplants.
Physical therapy can help with balance, strength, and safety. Low-impact activities such as swimming, biking, and stretching can all help with side effects of neuropathy.
Complementary therapies such as acupuncture, lymphatic drainage, relaxation techniques, meditation, yoga, and guided visualization have helped several members of MyMyelomaTeam reduce the side effects of neuropathy. “Massage and acupuncture saved my life,” said one member.
Members have found that supportive shoes reduce pain in the feet and legs. One woman recommends Orthofeet, an online company that makes shoes for neuropathy. “They have velcro on each side so it’s not tight on the top of feet.” Another swears by San Antonio Shoes, another online vendor. “They’re expensive, but worth it. My husband can walk all day in them with no issues,” she said.
If you’ve lost feeling in your hands or feet, you may be at risk of burns or cuts that wouldn’t occur if you had full sensation. Using potholders when cooking and checking water temperature with a thermometer are basic steps for staying safe.
On MyMyelomaTeam, the social network and online support group for those living with myeloma, members talk about a range of personal experiences and struggles including neuropathy.
Here are some question-and-answer threads about neuropathy:
Here are some conversations about neuropathy:
Can you relate? Have another topic you'd like to discuss or explore? Go to MyMyelomaTeam today and start the conversation. You'll be surprised how many others share similar stories.