Many women with bleeding disorders deal with pain, and it’s not easy to handle. Heather Mary Doherty, 47, knows that from experience. Besides managing type 1 von Willebrand disease (VWD), she copes with daily pain from fibromyalgia, lymphomatic colitis and other ailments, such as arthritis.
Doherty’s VWD symptoms are chronic. “I bruise really badly, and I get swelling,” explains the Torch River, Michigan, resident and former medical assistant. “At any given time, I have 20 bruises on my body from barely bumping into things. Sometimes they can take a while to heal.” In addition, she has pain when the blood vessels sometimes burst in her hands, along with backaches and general fibromyalgia soreness.
The average woman may find some relief with an over-the-counter or prescription nonsteroidal anti-inflammatory drug (NSAID) like aspirin or ibuprofen; however, Doherty cannot. That’s because NSAIDs can interfere with platelet function and are not appropriate for most people with bleeding disorders. And although acetaminophen (Tylenol®) might be an option for some people, long-term use and overuse carry a risk for liver damage. Other prescription pain relievers, such as opioid or narcotic drugs, also can cause injury or death if misused, particularly in women. New data from the US Centers for Disease Control and Prevention (CDC) show that overdose deaths from prescription pain relievers among women have increased more than 400% since 1999, versus 265% among men.
These data suggest that because women with chronic pain are at increased risk for misuse, abuse and overdose, women with bleeding disorders need to be careful when treating their pain. Talk with a doctor or healthcare practitioner to make sure you understand how to take your medications in the safest way possible.
Individualized treatment options
“It’s really important to be assessed for your pain issues,” says Michelle Witkop, DNP, FNP-BC, a bleeding disorders nurse practitioner at Munson Medical Center in Traverse City, Michigan. If you start with your provider at your hemophilia treatment center (HTC), you may save a trip to a pain specialist.
But be aware that treatment results can vary. For instance, if you have joint damage from bleeds, pain can persist. And if you’re dealing with a bruise, you’ve already sustained damage to the muscle. “Until the damage caused by the bleed resolves, alternative methods of pain management such as rest, ice, compression and elevation (RICE) are some methods of dealing with the pain,” Witkop says. “Many people have their own methods of complementary pain management that they find effective.”
Ideally, treatment would alleviate all pain, but that may not be possible. So your treatment goal should relate to function. “Sometimes we can’t get rid of pain, but we might be able to get it to where it’s a lot better,” Witkop says.
One remedy doesn’t fit all, says Edward Michna, MD, JD, director of the Pain Trials Center at Brigham and Women’s Hospital in Boston and an assistant professor at the Harvard Medical School. “Treatment of pain is based on the individual—his or her individual condition, prior history—all of that comes into play,” he says. “Our goal as doctors is to help you manage your pain.”
Further, women are more likely to have chronic pain; to have chronic conditions such as fibromyalgia and migraines; and are more likely to experience chronic conditions at the same time, research finds. “We have a prevalence of women in pain centers as opposed to men,” says Michna. This may occur, in part, because women are more likely to reach out for treatment.
Physical pain can affect your mental state, too. “Patients suffering from chronic pain can suffer from depression,” Michna says. “That’s a normal response.” Although some patients benefit from medication to treat it, depression does not always need a prescription, he adds.
Doherty has experienced depression related to her chronic pain. “Pain definitely changes your life,” she says. She felt especially down when she was first diagnosed, but has learned to make peace with her circumstances.
But no matter how she is feeling on a given day, Doherty says it is her 15-year-old daughter whose presence encourages her to stay strong. “I have to show her that even if you’re in pain, you have to learn to deal with it,” she says. “You’ve got to keep going. There is life after pain.”
Women with bleeding disorders typically should not take most NSAIDs, as they carry a risk of gastrointestinal bleeding. Instead, ask your healthcare provider about safer remedies. COX-2 inhibitors, such as celecoxib (Celebrex®) and meloxicam (Mobic®), are types of NSAIDs that may be suitable for people with bleeding disorders, says Michna. “They have less of an effect on platelets and sometimes can be safely used,” he explains. But these medications, like others, carry side effects, so ask your doctor about the best option for you.
Frances Cabot, 62, retired office manager from Scottville, Michigan, has been careful about the pain medications she takes since 2003, when she was diagnosed with type 1 VWD. Total knee replacement surgery left her with lingering knee pain. She also has knuckle pain from arthritis. To ease the aches, she uses acetaminophen, which is not an NSAID. “It takes about a half hour or so and then I feel better,” says Cabot. “I don’t use it every day, primarily just at night so I can sleep.”
Cabot recently learned that taking acetaminophen for extended periods, and at more than the recommended dose, can cause liver damage. Acetaminophen overdoses are the leading cause of acute liver failure in the US, according to the Harvard Medical School. “A lot of people in our community feel that acetaminophen is safe,” says Witkop. But Maximum Strength Pamprin® and Midol Complete Menstrual Relief® each contain 500 mg of acetaminophen. So heed the warning by the US Food and Drug Administration (FDA) to not take more than 4,000 mg of acetaminophen in a 24-hour period. Ask your doctor about the dosage that is right for you, and how long to take it.
Although opioids, such as Vicodin® (hydrocodone) and OxyContin® (oxycodone), may be warranted for some patients, they should not be the first treatment for chronic aches. “Doctors should prescribe nonopioid medications first,” says Michna. “In those very resistant cases, opioids can be an option, but there needs to be a thorough evaluation of the patient.”
That means people with a history of substance abuse or misuse may not be candidates.“Overdoses often happen in people who are taking these medications illegally and not using them in the way that they are prescribed,” Witkop says. Friends or even family members may request—or even steal—your medication, she adds. More than 12 million people reported using prescription pain relievers “nonmedically” in 2010, according to the CDC. Further, 55% of them acquired them free from a relative or friend.
To avoid overdoses or dangerous interactions, always take medications as directed. Store them in a secure place, do not share them with anyone and tell your doctor about everything you’re taking, including “natural” remedies, or dietary or herbal supplements. “If you get sleepy while taking these medications, or if you’re vomiting-- if you get confused or notice any mental changes, you should immediately report them to your doctor,” Michna says. These symptoms may signal overdose.
It may be tempting reach for the pain pills when you’re hurting, but Michna stresses the need to assess each situation. “Don’t take something just to take it,” he says. “Not all pain that you have needs to be treated with medication.”
Doherty, who experiences daily pain, understands the hard truth of treating some pain and tolerating others. Though she takes a muscle relaxer and tramadol, a narcotic-like medication, under her doctor’s supervision for her fibromyalgia pain, she avoids acetaminophen and NSAIDs for VWD pain. “I’ve gotten used to dealing with it,” she says.
For short-term pain relief, Doherty uses alternative therapies like heating pads and stretching for back pain. A transcutaneous electrical nerve stimulation (TENS) unit, which emits a low-voltage electrical current, also helps.
Studies have found that physical activity can help with pain. Doherty knows that some movement is helpful. Walking her dog and outdoor gardening help her feel better. Positive thinking and prayer are also part of the pain relief package. “I’m an optimist, and I’m also a Christian,” Doherty says. “I try to keep my mind off things by keeping myself busy.”
Getting enough sleep also is important, Witkop notes. The National Sleep Foundation recommends that adults get seven to nine hours of rest per day.
“There is no magic pill,” Witkop adds. “Oftentimes, the combination of many things can help.” That means enjoying the good parts of life and asking for help when needed can have positive results. “People who incorporate pain into their lives can be more resilient,” she says.
“Pain Management Strategies,” HemAware.