Tuesday, February 5, 2019

Women and pain: Disparities in experience and treatment

Medication side effects are a big problem. It’s estimated that about half of filled prescriptions are not taken as directed, and a major reason for this is side effects. If you’ve ever had diarrhea, felt sleepy, or developed a rash after taking a new medication, you know how unpleasant side effects can be. And sometimes it’s much worse than unpleasant: drug side effects can cause permanent damage and even be deadly.
Predicting success… and side effects

Wouldn’t it be great if your doctor could predict which medication is most likely to work for you and least likely to cause side effects? Pharmacogenetics — the use of genetic information to predict the risks and benefits of a medication — could do just that. The idea is that your genes may provide helpful clues regarding which medication is best in your particular case. There are already examples of this, such as:

    Azathioprine: this is an immune-suppressing medication that some people have trouble metabolizing due to the genes they inherited; a blood test prior to the start of treatment can identify those most at risk.
    Allopurinol: certain ethnic groups (e.g., those of Han Chinese or Thai extraction) are more likely to carry a gene that increases the risk of a severe allergic reaction to allopurinol, a medication primarily used to treat gout.

While these examples deal with medication risks, individual genetic testing may also be able to identify which medications are most likely to help a person based on their genes.
A new study looks at statins

Statin drugs are among the most widely prescribed medications in the world. They lower cholesterol, reduce inflammation, and have been proven to reduce the risk of heart attack and stroke in those at high risk for these conditions. However, a limiting side effect is muscle pain, an annoying symptom that may require discontinuation of the drug. (A more serious muscle disease may develop, especially when statins are combined with other drugs, but fortunately these more serious reactions are rare.) As there are several formulations of statin drugs, for any given person one statin drug might cause trouble while another might not. These variations might also be determined, at least in part, on that person’s genes.

Prior research has suggested that people who carry certain genes are more likely to develop muscle pain when taking statins, and certain statins might cause more trouble than others for people with a higher-risk gene. These genes direct the synthesis of a protein involved in transporting drugs into liver cells.

A new study enrolled 159 people who had previously developed muscle pain when taking a statin to determine whether sharing the results of their genetic tests could be helpful in choosing a statin drug that would not cause muscle pain.

The researchers divided study subjects into two groups:

    One group was provided with the results of their genetic testing. If a high-risk gene was found, they were offered a statin considered to be less risky; for those without the high-risk gene, the group was offered any of several statins.
    The other group (the “usual care” group) wasn’t told their genetic test results until the study was completed. For this group, decisions regarding statin choice were based on “standard guidance regarding statin selection and dosing.”

In the first three months, nearly 60% of those in the first group decided to take a statin; only a third of those in the other group did so. As a result, within eight months cholesterol levels tended to be better in those receiving their genetic test results. The impact of this approach could be large, as all of the study subjects had previously stopped statin medications due to side effects.
Is it in the genes… or the “nocebo effect”?

One interesting aspect of this study is that the “nocebo effect” could have been responsible for at least some of the study subjects’ past side effects. The nocebo effect is a phenomenon in which the expectation of a side effect makes it more likely to occur, similar to how the expectation of benefit may make a placebo more likely to work. People who had previously had muscle pain with a particular statin might have the expectation of recurrence with any statin, but armed with genetic information that might help reduce risk, that expectation of trouble might be lessened. Genetic testing could lead to fewer side effects, not only by directing the choice of medications but also through a reduction in the nocebo effect.
We’re not there yet

Here’s the part where I’m obligated to mention the limitations of using genetic testing to direct drug treatment. First, in most cases, prediction isn’t perfect. Some people with a high-risk gene are fine when they take the medication; similarly, those lacking the high-risk gene can still react badly to the drug. One reason for this is that the benefits and risks of drugs are rarely determined by a single gene and many other factors matter, such as other medications taken and other medical problems. Another concern is cost. Many genetic tests are costly and it’s often unclear whether the benefits (which may be modest) are worth the expense. It’s possible that as genetic testing becomes more common and extensive, costs will come down; and as more genes are studied, the benefits of testing may become clearer (and, hopefully, more robust). Let’s face it: we are all getting older. As I write this, I am aging, and as you read this, you are, too! Today I want to talk about an aspect of aging that we don’t often think about, but which research shows we can do something about: osteoporosis, or brittle bone disease.

As we age, our bones naturally tend to become weaker. This is one reason that people often become slightly shorter as they age. Particularly for women, this process accelerates more quickly after menopause. Because bones become weaker, it is easier for them to break, sometimes with very little provocation. Hip fractures are an especially dreaded complication of osteoporosis, because they require hospitalizations and painful surgeries to repair, because recoveries can be particularly complicated, and lastly, because it sounds absolutely terrifying to break a hip! For all these reasons, the medical community worries about osteoporosis and we are constantly thinking of ways to prevent or ameliorate it.

There is a growing body of evidence that physical activity later in life (as well as earlier in life!) can help combat the effects of aging on our bones. Now, I know what you are thinking — I don’t have time to exercise! Well, I have good news for you. Just a little bit of the right type of exercise for just a few minutes a day may help.
You don’t need to train for a marathon to strengthen your bones

A recent study looked at the quantity and quality of exercise required to make a real change in bone strength, as well as how to measure that exercise. Researchers accessed pre-existing data from a large, public database in the UK in order to learn more about how exercise affects bone health in a group of healthy women at risk for brittle bones. In this study, both pre- and post-menopausal women wore accelerometers to record the intensity of their movements. The researchers wanted to see if they could learn about the patients’ movements with very brief measurements, and they found that they could.

More interestingly, what they found was that the women who had the most intense activity, recorded for what amounted to just one to two minutes each day, had a reduction in risk for brittle bones. Furthermore, they had a higher reduction than those women who did less intense activity, although those women saw some reduction in risk too. And the intensity required to achieve this? One to two minutes of running for a pre-menopausal woman and slow jogging for a post-menopausal woman.
More support for exercise and bone health

The study had some limitations. First, it measured bone health by looking at bone density in the heel by ultrasound. The best way to measure bone density is really with a special x-ray called a DEXA scan. We also care less about bone health in the heel and more about bone health in the spine and hip — places where a fracture is more dangerous. However, the general finding of better bone health in those who exercise has been seen throughout the medical literature, so I think we can still safely depend on the results of this study. Another potential limitation is that the patients they studied were all Caucasian females. However, there is no reason to presume that the research wouldn’t apply to healthy women of other ethnicities as well.

This study is so important because it really gives all of us such a reasonable goal. Can we give it our strongest effort for one to two minutes a day? I think we can. It also shows that if we make a small, measurable, but regular change, we can all dance, run, jog, jump, or hop our way to better health! The news these days is overwhelming in its awfulness. There have been horrible hurricanes, the earthquake in Mexico — and the incomprehensible shootings in Las Vegas. It’s been so awful, and so unrelenting, that it is hard to even process it.

Imagine processing it as a child?

Our first instinct is usually to shelter our children from the news and not say anything about it to them at all. That’s completely understandable, and if your child is very young or you are certain for some other reason that they aren’t going to hear about it, then not saying anything is a viable option.

But if they aren’t very young, or if you ever have the news on where they can see, or if they are ever in settings where people might have the news on or talk about it, it might not be so viable. If children are going to hear about something, they really should hear about it from you.

Also, as parents it’s important that we give our children the perspective and skills they need to navigate this scary world where, let’s be honest, bad things happen. The way you talk to children about tragedies in the news can help them cope not just now, but in the future.

The American Academy of Pediatrics has all sorts of resources to help parents talk with children about tragedies. Here are four simple things all parents can and should do:

1.  Tell them what happened, in simple terms. Be honest, but skip the gory details. Answer their questions just as simply and honestly. If you think — or know — that your child has already heard something, ask them what they’ve heard. That way you can correct any misinformation, and know not only what you need to explain but also what you may need to reassure them about.

2.  Be mindful of the media that your child sees. The news can be very graphic — and because the media are as much in the business of gaining viewers as of delivering news, they tend to make things as dramatic as possible and play footage over and over again. When the planes flew into the Twin Towers on 9/11, my husband and I were glued to the television, not realizing that one of our daughters, who was 3 years old at the time, thought that planes were literally flying into buildings again and again. It wasn’t until she said, “Are those planes going to come here too?” that we shut off the TV and didn’t turn it back on again until all the children were in bed.

3.  Make sure your child knows that not only are tragedies uncommon, but that you and others are always doing everything you can to keep them safe. Talk about some of the ways you keep them safe, ways that are relevant to the tragedy you are talking about. Make a safety plan as a family for things like extreme weather or getting separated. Help them think about what they might do if they are ever in a scary situation, and who they could turn to for help. Which leads me to the most important thing to do…

4.  Look for the helpers. The wonderful Fred Rogers often talked about how when he saw scary things on the news, his mother would tell him to look for the helpers, because there are always people who are helping. That may be the best thing we can do as parents: help our children look for the helpers. In all of the recent tragedies, as in all tragedies, there were so many helpers and heroes. When we concentrate on those people, not only do we give our children hope, we may empower them to one day be helpers too. In August, The New York Times published a guest op-ed by a man named David Roberts who suffered from severe chronic pain for many years before finally finding relief. The piece immediately went viral, with distinguished news journalist and personality Dan Rather posting it to his Facebook page with the addendum that it could “offer hope” to some pain patients. However, for many of us in the chronic pain community, particularly women, the piece was regarded with weariness and frustration.

The first and most prominent source of annoyance for me regarding this piece was the part when the author finally discloses his pain to his employer and it is taken with the utmost seriousness. He is immediately offered leave to find treatment, despite the lack of a definitive diagnosis. This stands in stark contrast to the experiences of many (if not most) women, where our pain is often abruptly dismissed as psychological — a physical manifestation of stress, anxiety, or depression.
Women with chronic pain may suffer more and longer than men

Consider this: women in pain are much more likely than men to receive prescriptions for sedatives, rather than pain medication, for their ailments. One study even showed women who received coronary bypass surgery were only half as likely to be prescribed painkillers, as compared to men who had undergone the same procedure. We wait an average of 65 minutes before receiving an analgesic for acute abdominal pain in the ER in the United States, while men wait only 49 minutes.

These gender biases in our medical system can have serious and sometimes fatal repercussions. For instance, a 2000 study published in The New England Journal of Medicine found that women are seven times more likely than men to be misdiagnosed and discharged in the middle of having a heart attack. Why? Because the medical concepts of most diseases are based on understandings of male physiology, and women have altogether different symptoms than men when having a heart attack.

To return to the issue of chronic pain, 70% of the people it impacts are women. And yet, 80% of pain studies are conducted on male mice or human men. One of the few studies to research gender differences in the experience of pain found that women tend to feel it more of the time and more intensely than men. While the exact reasons for this discrepancy haven’t been pinpointed yet, biology and hormones are suspected to play a role.

As for Roberts, his lab tests yielded no apparent findings to explain his back pain. Eventually he enrolled in a program through the Mayo Clinic that treated chronic pain as “a malfunction in perception,” that is, a self-reinforcing addiction to and dramatization of pain.

The solution, as Robert explains, was: “…don’t dwell on the pain, and don’t try to fix it — no props, no pills. Eventually the mind should let go.”
Treatment must be individualized

This tactic may have worked for the author, but I doubt it would work as well for many of us women with clearly definable conditions like rheumatoid arthritis, multiple sclerosis, and chronic migraine, or sex-specific diseases like endometriosis. In my case, ignoring the heavy bleeding and cramping I experienced every month (often multiple times a month) and the daily gastrointestinal distress I had for years did not make the attending pain go away, despite the repeated dismissals I received from doctors. Trying to ignore the pain didn’t stop endometriosis from strangling my large intestines and adhering my ovaries and fallopian tubes to my colon. To gain actual relief from that agony, I needed surgery, and I might need it again. Likewise, ignoring my back pain does not stop the nerve compression that contributes to sporadic incidences of severe cramping and involuntary muscle twitches and jerking in my right leg. What I do need are doctors willing to listen, empathize, and work with me to identify the most appropriate treatment plan that will minimize my pain and address the underlying condition as best as possible.

While I congratulate Roberts that he was able to put away his “props” such as his ankle braces, those of us with genuine degenerative conditions like arthritis and connective tissue disease need such aids to stabilize our joints and prevent further damage and further pain. I would implore those in the medical community for whom the Times piece resonated to understand that applying blanket solutions to chronic pain may not work for many pain patients, as the vast majority of us are women. In fact, since most studies on pain have focused on men, broadly applying their findings to everyone can be dangerous, and reinforces the same gender disparities from which they arise. The result of that would inevitably be that many more women stand to die or suffer in silence, without accessing the treatments they require and deserve in order to find adequate relief.In August, The New York Times published a guest op-ed by a man named David Roberts who suffered from severe chronic pain for many years before finally finding relief. The piece immediately went viral, with distinguished news journalist and personality Dan Rather posting it to his Facebook page with the addendum that it could “offer hope” to some pain patients. However, for many of us in the chronic pain community, particularly women, the piece was regarded with weariness and frustration.

The first and most prominent source of annoyance for me regarding this piece was the part when the author finally discloses his pain to his employer and it is taken with the utmost seriousness. He is immediately offered leave to find treatment, despite the lack of a definitive diagnosis. This stands in stark contrast to the experiences of many (if not most) women, where our pain is often abruptly dismissed as psychological — a physical manifestation of stress, anxiety, or depression.
Women with chronic pain may suffer more and longer than men

Consider this: women in pain are much more likely than men to receive prescriptions for sedatives, rather than pain medication, for their ailments. One study even showed women who received coronary bypass surgery were only half as likely to be prescribed painkillers, as compared to men who had undergone the same procedure. We wait an average of 65 minutes before receiving an analgesic for acute abdominal pain in the ER in the United States, while men wait only 49 minutes.

These gender biases in our medical system can have serious and sometimes fatal repercussions. For instance, a 2000 study published in The New England Journal of Medicine found that women are seven times more likely than men to be misdiagnosed and discharged in the middle of having a heart attack. Why? Because the medical concepts of most diseases are based on understandings of male physiology, and women have altogether different symptoms than men when having a heart attack.

To return to the issue of chronic pain, 70% of the people it impacts are women. And yet, 80% of pain studies are conducted on male mice or human men. One of the few studies to research gender differences in the experience of pain found that women tend to feel it more of the time and more intensely than men. While the exact reasons for this discrepancy haven’t been pinpointed yet, biology and hormones are suspected to play a role.

As for Roberts, his lab tests yielded no apparent findings to explain his back pain. Eventually he enrolled in a program through the Mayo Clinic that treated chronic pain as “a malfunction in perception,” that is, a self-reinforcing addiction to and dramatization of pain.

The solution, as Robert explains, was: “…don’t dwell on the pain, and don’t try to fix it — no props, no pills. Eventually the mind should let go.”
Treatment must be individualized

This tactic may have worked for the author, but I doubt it would work as well for many of us women with clearly definable conditions like rheumatoid arthritis, multiple sclerosis, and chronic migraine, or sex-specific diseases like endometriosis. In my case, ignoring the heavy bleeding and cramping I experienced every month (often multiple times a month) and the daily gastrointestinal distress I had for years did not make the attending pain go away, despite the repeated dismissals I received from doctors. Trying to ignore the pain didn’t stop endometriosis from strangling my large intestines and adhering my ovaries and fallopian tubes to my colon. To gain actual relief from that agony, I needed surgery, and I might need it again. Likewise, ignoring my back pain does not stop the nerve compression that contributes to sporadic incidences of severe cramping and involuntary muscle twitches and jerking in my right leg. What I do need are doctors willing to listen, empathize, and work with me to identify the most appropriate treatment plan that will minimize my pain and address the underlying condition as best as possible.

While I congratulate Roberts that he was able to put away his “props” such as his ankle braces, those of us with genuine degenerative conditions like arthritis and connective tissue disease need such aids to stabilize our joints and prevent further damage and further pain. I would implore those in the medical community for whom the Times piece resonated to understand that applying blanket solutions to chronic pain may not work for many pain patients, as the vast majority of us are women. In fact, since most studies on pain have focused on men, broadly applying their findings to everyone can be dangerous, and reinforces the same gender disparities from which they arise. The result of that would inevitably be that many more women stand to die or suffer in silence, without accessing the treatments they require and deserve in order to find adequate relief.In August, The New York Times published a guest op-ed by a man named David Roberts who suffered from severe chronic pain for many years before finally finding relief. The piece immediately went viral, with distinguished news journalist and personality Dan Rather posting it to his Facebook page with the addendum that it could “offer hope” to some pain patients. However, for many of us in the chronic pain community, particularly women, the piece was regarded with weariness and frustration.

The first and most prominent source of annoyance for me regarding this piece was the part when the author finally discloses his pain to his employer and it is taken with the utmost seriousness. He is immediately offered leave to find treatment, despite the lack of a definitive diagnosis. This stands in stark contrast to the experiences of many (if not most) women, where our pain is often abruptly dismissed as psychological — a physical manifestation of stress, anxiety, or depression.
Women with chronic pain may suffer more and longer than men

Consider this: women in pain are much more likely than men to receive prescriptions for sedatives, rather than pain medication, for their ailments. One study even showed women who received coronary bypass surgery were only half as likely to be prescribed painkillers, as compared to men who had undergone the same procedure. We wait an average of 65 minutes before receiving an analgesic for acute abdominal pain in the ER in the United States, while men wait only 49 minutes.

These gender biases in our medical system can have serious and sometimes fatal repercussions. For instance, a 2000 study published in The New England Journal of Medicine found that women are seven times more likely than men to be misdiagnosed and discharged in the middle of having a heart attack. Why? Because the medical concepts of most diseases are based on understandings of male physiology, and women have altogether different symptoms than men when having a heart attack.

To return to the issue of chronic pain, 70% of the people it impacts are women. And yet, 80% of pain studies are conducted on male mice or human men. One of the few studies to research gender differences in the experience of pain found that women tend to feel it more of the time and more intensely than men. While the exact reasons for this discrepancy haven’t been pinpointed yet, biology and hormones are suspected to play a role.

As for Roberts, his lab tests yielded no apparent findings to explain his back pain. Eventually he enrolled in a program through the Mayo Clinic that treated chronic pain as “a malfunction in perception,” that is, a self-reinforcing addiction to and dramatization of pain.

The solution, as Robert explains, was: “…don’t dwell on the pain, and don’t try to fix it — no props, no pills. Eventually the mind should let go.”
Treatment must be individualized

This tactic may have worked for the author, but I doubt it would work as well for many of us women with clearly definable conditions like rheumatoid arthritis, multiple sclerosis, and chronic migraine, or sex-specific diseases like endometriosis. In my case, ignoring the heavy bleeding and cramping I experienced every month (often multiple times a month) and the daily gastrointestinal distress I had for years did not make the attending pain go away, despite the repeated dismissals I received from doctors. Trying to ignore the pain didn’t stop endometriosis from strangling my large intestines and adhering my ovaries and fallopian tubes to my colon. To gain actual relief from that agony, I needed surgery, and I might need it again. Likewise, ignoring my back pain does not stop the nerve compression that contributes to sporadic incidences of severe cramping and involuntary muscle twitches and jerking in my right leg. What I do need are doctors willing to listen, empathize, and work with me to identify the most appropriate treatment plan that will minimize my pain and address the underlying condition as best as possible.

While I congratulate Roberts that he was able to put away his “props” such as his ankle braces, those of us with genuine degenerative conditions like arthritis and connective tissue disease need such aids to stabilize our joints and prevent further damage and further pain. I would implore those in the medical community for whom the Times piece resonated to understand that applying blanket solutions to chronic pain may not work for many pain patients, as the vast majority of us are women. In fact, since most studies on pain have focused on men, broadly applying their findings to everyone can be dangerous, and reinforces the same gender disparities from which they arise. The result of that would inevitably be that many more women stand to die or suffer in silence, without accessing the treatments they require and deserve in order to find adequate relief.

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