This is a sponsored post. Salix Pharmaceuticals provided me with a stipend and paid for my travel and accommodations related to the event described below. All opinions are my own.

“Painstipation,” or constipation caused by opioid pain medication in chronic pain patients, is an uncomfortable subject to consider, but it’s a really important topic to discuss, especially with your doctor. Those of us with rheumatoid arthritis (RA) (or other chronic pain conditions) sometimes take opioid medications to relieve RA’s painful, debilitating joint pain. But as beneficial as they may be, opioids may also cause opioid induced constipation (OIC).

Opioid pain relievers bind to opioid receptors, which in turn decrease pain transmission. Which is, of course, wonderful. Taken with care and as prescribed, opioids can help us maintain our quality of life.

Photo by hermaion on Pexels.com

But here’s the rub: opioids also affect the gut’s digestive and eliminatory processes, slowing or even stopping the normal movement of waste. The result? OIC, or “Painstipation.” Performing the usual activities that promote digestive health, like drinking more water, exercising, and eating plenty of whole grains and vegetables don’t always relieve this opioid-caused side effect. Even over-the-counter stool softeners or laxatives may not work.

I’ve taken opioid pain meds off and on for close to 30 years, and when I suffered from OIC , it was the pits. Lots of people suffer with this side effect frequently. In some cases, they may not be aware that the pain meds they’re taking are causing their Painstipation or they may fear changing or reducing their opioid pain medication, so they don’t bring up the problem with their prescribing physician.

Because, hey—it’s just constipation, right? Happens to everyone! Eat more fiber! It’s embarrassing!

I recently attended a Salix Pharmaceuticals event about OIC with several other chronic pain bloggers. The company presented findings from a national, 1-week online survey it sponsored in partnership with the US Pain Foundation, conducted by Wakefield Research. The survey evaluated responses from 441 US adults, aged 18 years or older, who were living with chronic pain, were on opioid therapy, and were suffering from OIC or “Painstipation.”

The survey findings showed that:

• 77% of these patients reported suffering from OIC for at least one year and 43% of these patients reported suffering with OIC for more than three years.
• 37% of these patients reported changing the dosage of their opioid medication to try to alleviate the pain or discomfort of their OIC.
• These patients reported waiting an average of 18 hours to have a bowel movement after taking constipation medication.
• 53% of these patients said they would have preferred for their OIC medication to induce a bowel movement in less than four hours.
• 47%—almost half—of these patients reported taking between 6 to 10 total prescription medications on a regular basis and 20% percent took more than 10 prescription medications on a regular basis.

Dr. Joseph Pergolizzi, senior partner and director of research of Naples Anesthesia and Pain Associates, spoke about OIC at the Salix event. He stressed the importance of discussing OIC with your doctor.  “Some chronic pain patients may not mention opioid induced constipation with their practitioner, so we need to have a ‘do ask, do tell’ policy. It’s important to realize that it starts with conversation,” he said.

Painstipation can make taking opioids miserable, even as they help us cope with RA joint pain. But there’s hope. Salix’s drug, called RELISTOR®, may provide relief from the symptoms of OIC for appropriate patients. Check it out:

        INDICATIONS

• RELISTOR® (methylnaltrexone bromide) is a prescription medicine used to treat constipation in adults that is caused by prescription pain medicines called opioids.
• RELISTOR tablets and RELISTOR injection are used to treat constipation caused by opioids in adults with long-lasting (chronic) pain that is not caused by active cancer.
• RELISTOR injection is also used to treat constipation caused by opioids in adults with advanced illness or pain caused by active cancer and who need increases in their opioid dose for pain management.

IMPORTANT SAFETY INFORMATION

• Do not take RELISTOR if you have a bowel blockage (called an intestinal obstruction) or have a history of bowel blockage.

Please see additional Important Safety Information below and click here for full Prescribing Information for RELISTOR tablets and RELISTOR injection

The Salix event was interesting—and not just because of what I learned about OIC and this drug. I also got to meet a few terrific fellow chronic illness/chronic pain ggers:  Charis of BeingCharis, Brittney of The Nerdy Nurse, and (for the second time!) Jenni of ChronicBabe. The four of us spent several hours together, playing with acrylic paints under the genial supervision and tutelage of renowned artist and teacher Michael Jacques, whose artwork is on display in the Renwick Gallery in the Smithsonian American Art Museum. 

Jacques asked each of us to pick out one of the survey findings about OIC in chronic pain patients—one that “spoke” to us particularly. Mine was this: “47% of the patients surveyed reported taking between 6 to 10 total prescription medications on a regular basis.” The finding resonated with me because while I don’t usually have OIC after taking opioids, I do take that many medications, and I have for years.

Once we chose our survey finding, Jacques told us to illustrate it with paint on canvas,

Painting by Leslie Vandever

using an abstract style. Since none of us had any experience with abstract painting, the ensuing session involved lots of colorful, messy paint, lots of conversation, and lots and lots of laughter. He’s a fabulous teacher. I learned more about the art of abstract painting during that one session than I have in a lifetime of creating visual art.

The result was, well, colorfully abstract, and each of us painted something unique. It was fun, and we presented our paintings to a small audience of healthcare practitioners following Dr. Pergolizzi’s OIC/RELISTOR® presentation that evening.

Now, a little more about RELISTOR®:

INDICATIONS

• RELISTOR® (methylnaltrexone bromide) is a prescription medicine used to treat constipation in adults that is caused by prescription pain medicines called opioids.
• RELISTOR tablets and RELISTOR injection are used to treat constipation caused by opioids in adults with long-lasting (chronic) pain that is not caused by active cancer.
• RELISTOR injection is also used to treat constipation caused by opioids in adults with advanced illness or pain caused by active cancer and who need increases in their opioid dose for pain management.

IMPORTANT SAFETY INFORMATION

• Do not take RELISTOR if you have a bowel blockage (called an intestinal obstruction) or have a history of bowel blockage.
• RELISTOR can cause serious side effects such as a tear in your stomach or intestinal wall (perforation). Stomach pain that is severe can be a sign of a serious medical condition. If you get stomach pain that is severe, does not go away, or gets worse, stop taking RELISTOR and get emergency medical help right away.
• Stop using RELISTOR and call your healthcare provider if you get diarrhea that is severe or that does not go away during treatment with RELISTOR.
• You may have symptoms of opioid withdrawal during treatment with RELISTOR including sweating, chills, diarrhea, stomach pain, anxiety, and yawning. Tell your healthcare provider if you have any of these symptoms.
• Tell your healthcare provider if you have kidney or liver problems.
• Tell your healthcare provider if you have any stomach or bowel (intestines) problems, including stomach ulcer, Crohn’s disease, diverticulitis, cancer of the stomach or bowel, or Ogilvie’s syndrome.
• Tell your healthcare provider if you are pregnant or plan to become pregnant. Taking RELISTOR during pregnancy may cause opioid withdrawal symptoms in your unborn baby. Tell your healthcare provider right away if you become pregnant during treatment with RELISTOR.
• Taking RELISTOR while you are breastfeeding may cause opioid withdrawal in your baby. You should not breastfeed during treatment with RELISTOR. You and your healthcare provider should decide if you will take RELISTOR or breastfeed. You should not do both.
• Also, tell your healthcare provider about all of the medicines you take, including prescription and over the-counter medicines, vitamins, and herbal supplements.
• In a clinical study, the most common side effects of RELISTOR tablets in people with long-lasting (chronic) pain that is not caused by cancer include: stomach-area (abdomen) pain, diarrhea, headache, swelling or a feeling of fullness or pressure in your abdomen, sweating, anxiety, muscle spasms, runny nose, and chills.
• In a clinical study, the most common side effects of RELISTOR injection in people with long-lasting (chronic) pain that is not caused by cancer include: stomach-area (abdomen) pain, nausea, diarrhea, sweating, hot flush, tremor, and chills.
• In clinical studies, the most common side effects of RELISTOR injection in people receiving treatment for their advanced illness include: stomach-area (abdomen) pain, gas, nausea, dizziness, and diarrhea.

You are encouraged to report side effects of prescription drugs to FDA. Visit www.fda.gov/MedWatch/ or call 1-800-FDA-1088.

Please click here for full Prescribing Information for RELISTOR tablets and RELISTOR injection.

For product information, adverse event reports, and product complaint reports, please contact:

Salix Product Information Call Center

Phone: 1-800-321-4576

Fax: 1-510-595-8183

Email: salixmc@dlss.com

My hands were giving me some guff recently (as they do). I was wearing my favorite compression gloves already, I’d applied over-the-counter lidocaine cream, and I’d swallowed a dose of acetaminophen (Tylenol). This was on top of the fistful of other prescription drugs I take, every day, morning, and night, to treat my RD.

But none of them were making a dent in my hand-and-wrist pain.

I have a prescription for an opioid pain reliever, but taking it is always my last choice, after everything else I try fails. So, I left that little white pill in its bottle while I considered my other options.

If you’re reading this, you probably cope with the frequent joint pain caused by rheumatoid disease (arthritis), too. And if you’re like me, you go through all kinds of gyrations before finally succumbing to swallowing an opioid.

But on this recent day, I wasn’t ready yet to take the strong stuff. My hands hurt—a lot—but they hadn’t hit pain pill level yet. I wanted to be “good.” I wanted to use “alternative methods.’ After all, our government and our doctors tell us earnestly that these are, by far, much better ways to treat our intractable chronic pain.

I went into the bathroom and ran the sink full of the hottest water I could bear. I submerged my hands, past my wrists, halfway up to my elbows, sighing as the heat suffused my skin and warmed them down to the aching bones. I closed my eyes. Mmmm.

Of course, standing at the sink halfway up to my elbows in hot water gets old within a minute or two. It’s b-o-r-i-n-g, right? And, because I wasn’t moving, the balls of my feet started to ache. Then my ankles joined the chorus, with my Achilles tendons singing soprano. Unbelievable!

Well, I pulled my hands out of the soothing, hot water, dried them off, and drained the sink. Now what? I paced for a while, gingerly, before flopping into the recliner with my Kindle. Maybe, I thought, I can lose myself in a good book and forget—at least for a while—that my hands hurt.

“Reading is a wonderful distraction from pain! Yes! You know it is, and you can do this! It will work!” my Always Optimistic Cognitive Behavior Therapy Self said, trying not to be snarky. So, I opened a recent purchase: a new book about Robert Kennedy. He was assassinated in 1968, not long after he started his campaign for President. I was 12. I remember the news on television, the horror and sadness in the journalists’ faces and voices, and the somber hush in our living room. Another great man, gone.

Anyway. Time for a trip down Memory Lane—a perfect foil for pain. And so it was, until it came up on time to make dinner. Now, I love to cook, but the fun goes right out of it when it hurts to prep the meal. Forget chopping. Forget lifting heavy pots. Fuggedaboudit.

I hate to admit it, but I gave up, then. I went back to my room and took a pill. As I did, though, I remembered my old paraffin bath. Now there’s a great, if temporary, way to soothe away joint pain! I’d put it away last year, during the hottest part of the summer, unable to bring myself to immerse my hands in hot wax when the patio plants were frying and the asphalt was melting in the sun. But now it was damp and cool outside, winter’s equivalent around here. That deep, penetrating heat on my hands and wrists would feel heavenly!

But where did I stash my paraffin bath? I looked everywhere I could think of, but I couldn’t find it, not in cupboards, in closets, or under the bed. It was nowhere.

By then, though, the pill was kicking in. I’d like to note here, just in case anyone’s feeling all judgy and calling me an addict: there is no high. Taking an opioid pain reliever makes me feel just the same as taking OTC acetaminophen–except between a half an hour and 45 minutes after taking it my nasty joint pain fades away into the background. Oh, it’s still there. I’m aware of it. But it doesn’t live in the front of my mind anymore, which means I can get on with living my life, minus moment-to-moment pain. I can cook a meal, do chores, do most things.

I found my paraffin bath today. I’d tucked it into the compartment inside a footstool, which seemed like a perfectly good, out-of-the-way place for it at the time. Now it’s back on my desk, the wax is slowly melting, and I’m looking forward to dipping my hands into it later, again and again, until I have thick wax gloves of warmth on them. It will help soothe today’s wrist and knuckle pain.

I also found my old book of Tao sayings, perfect for peaceful meditation as I wait for the paraffin on my hands to cool. Meditation is helpful in coping with pain, too. Doesn’t have to be all woo-woo, just a few minutes of quiet, like temporarily taking a gentle step back, out of the rushing world. I always end a little stronger, a little more hopeful, and a little more optimistic, even if I still hurt.

Which I do, often. I have RD. It’s incurable. That’s just how it is. And this is my RD toolbox. What’s in yours?

Just a little mental drenching …

I’m a winter-person. I’ve always loved chilly weather and wild, rainy storms. Even after my rheumatoid arthritis (RA) diagnosis 30 years ago, when I lived in cold, dark, wet Northern Germany, I loved the winter weather. My joints didn’t care whether it was sunny or sleeting – they flared either way.

These days, I live in Northern California and I still have RA. Winters are short here, but now, when the barometer changes abruptly and the sweet, much-needed rain falls, my joints hurt more than usual. I love living in Northern California anyway.

But there’s another sort of rainy-season, one that can be much harder to cope with at times. It’s the one that sometimes comes when my RA symptoms worsen. This dark season exists only in my mind. My mental barometer shifts, it gets dark and dreary, and the soul-rain falls. And falls …

… and falls. It feels like it will never end.

When the soul-rain comes, I struggle more with my RA, resenting each joint twinge or throb, each bout of no-reason-for-it fatigue and malaise. My old, die-hard optimism fades as my mood plummets. Why me? I wonder. Why did I get this stupid disease? What did I do to deserve this?

And finally, how long will this last? Can I live with this forever?

It’s a fact: coping with an invisible disease like RA ain’t for sissies. It’s hard. It forces us to live with its often-invisible symptoms nearly every day of our lives, whether we like it or not. We might have stiff, aching joints, and feel fatigued, exhausted, or ill, but we still somehow get up each morning and go off to work or proceed to whatever we need to do each day. RA doesn’t pay the rent, buy the groceries, or keep the house tidy. That’s up to us no matter how rotten we feel. And because we may not be comfortable talking about how we feel to our employers or to others, we often bear our frequent pain alone, in stoic silence, and without their knowledge or support.

So really, it’s no surprise when the soul-rain drenches us. We can’t control it any more than we can stormy weather.

But like the weather, soul-rain storms always clear up, too. For me, sometimes it’s in a matter of hours, but other times it can take days or even weeks. Eventually, though, the storm passes, even if the cause—my RA—doesn’t, I just tell myself tomorrow will be better. If it’s not, then maybe the next tomorrow will be, or the next and so on.

I don’t blame myself for an occasional rainy-day-of-the-mind, but I don’t just sit around just waiting for them to lift, either. I use several tried-and-true tools to make enduring the soul-rain—and the pain—easier. Sometimes, these tools can even encourage the storm clouds to move along, so…

… Move yourself. If you’re able, step outside a few times a day and take a brisk walk. It doesn’t have to be a long one. But just the act of changing your surroundings, moving your body, breathing deeply, and taking in the sights and sounds around you can help lift your spirits. Notice the flowers, the trees, the changing colors of the season, the birds. Greet anyone you pass with a smile, and while we’re talking about that …

… Smile. Sure, I know. It’s tough to do when you’re feeling down but do it anyway. Turn up the corners of your mouth. Go to a mirror and practice smiling. Seek out others who smile a lot and smile with them. Watch a funny movie, or read a funny book or website and laugh out loud. I know it sounds nuts, but there’s real science behind this advice: studies have shown that when the muscles of your face curve your lips into a smile, your brain releases chemicals that help, physiologically, to lift your mood.[1] So, do it! Smile—even if it makes you laugh—and then …

… Distract yourself. When we hurt, it’s easy to fall into deep puddles of despair. The best way I’ve found to wallow out of them is to distract myself. There are lots of ways you can do this: read a good book; listen to your favorite music with your full attention; watch an absorbing movie or TV series; bake some cookies; fix something that needs fixing; spend time on a favorite hobby; or try a new one. Anything that takes your mind off your pain and discomfort will work!

… Unclutter your head. The easiest way to do this that I’ve found is to allow myself to simply sit still and be present, right here, right now, and not lost, wandering and alone, in some frightening future, near or far. After all, there is only now. The past is over. The future is unknown and uncontrollable. So, for a minute, or five, or more if you can, first recognize your pain. Note carefully where it is and how it feels. Accept the fact of it. Then move your attention elsewhere: to your heartbeat, to your breathing, to how your hair feels as it grows. If your pain or some other thought or worry comes to mind, notice it, then gently push it back into the ether. Bring yourself back to the present. Focus on the air flowing over your skin. If your tongue is clamped to the roof of your mouth, relax it. Breathe. Be. The simple trick here is to put your mind at ease and notice the small gifts the world has to offer. Once you’ve mastered these small practices, repeat them whenever you get a chance, and you might notice a break in your mental storm clouds—and the glimmer of hope that comes with it. Again, this is something I found that works for me!

… Reach out to others. In my decades-long journey with RA, one of the most important things I’ve learned is that hiding my soggy mood from my family and friends for more than a day or two just serves to double or even triple-down on my misery. Not only do I resent the pain and other symptoms my RA is doling out, but I resent that the people closest to me haven’t even noticed the raincloud that’s following me around. Now I’m really in the doldrums. Don’t they even care? Of course, they do. But they have their own problems, worries, and lives. Like it or not, none of us are telepathic, so it’s unfair for me to expect my family and friends to be tuned into me all the time. But how do I tell them how bad I feel? Won’t they think less of me? That I’m just being whiny? Here, again, the best way forward is the shortest way. “My RA is making me feel sorta low,” I say. “I get so frustrated and hopeless sometimes! I could really use a hug/a listening ear/a pep-talk/all of the above.” Talking it out means airing it out. People who don’t live with this disease 24/7 can have some surprisingly promising ideas on new ways to deal with it. Or, if nothing else, they might offer to keep you company as you take a walk, watch a movie, or prepare a meal. Another thing that can help? Listening to their problems in return. Everyone needs a sympathetic ear now and then and hearing you are not the only one with bad days helps.

 … And a couple more: If you’ll share this post with others in your life or online, it might help improve their general understanding of invisible illnesses—RA included—and about the importance of emotional self-care. And you can check out the Joint Decisions Facebook page at https://www.facebook.com/JointDecisionsRA for more information and resources about living with RA.

Used alone or together, these tools work for me when my RA and my emotions combine into the soul-rain. I hope they’ll work for you as well. Finally, remember that your doctor can help, too. Talk to them about these things. There might be a new treatment for your RA you haven’t tried yet, or you can ask about other practices that might help lift your dark, dreary mood. Together with your doctor, you will find the best way out of the soul-rain and back into the sun.

Note: This post was sponsored by Joint Decisions, an educational initiative developed by Janssen Biotech, Inc. that empowers people living with RA to take a more active role in the management of their disease and have more open and honest conversations with their doctors. Janssen compensated me for the time I spent collaborating on content for Joint Decisions, but all thoughts and opinions presented here are my own. All thoughts and opinions presented here are not the thoughts and opinions of Johnson & Johnson and should NOT be taken as medical advice.

[1] https://www.psychologytoday.com/blog/cutting-edge-leadership/201206/there-s-magic-in-your-smile

Illustration courtesy RheumatoidArthritis,net

I believe the two most disheartening words you can hear from a doctor are “chronic pain.” As in “You have chronic pain.”

Or worse, “You just have chronic pain.” This was what a rheumatologist, one of the rotating team of doctors I see these days, told me recently. The reason? My hands hurt even though my lab tests looked fabulous and there was no visible swelling or redness in my joints. This doc didn’t know why, so he said, his frustration with me plain in his voice, “You just have chronic pain.”

Ah. Well. That explains everything.

Please read the rest at https://rheumatoidarthritis.net/living/weasel-words/ .

Hi, gang!

I hope you don’t mind, but I’ve been creating more artwork over the last several weeks and like all artists, I want to show it off to someone other than my mother and my cats. Thanks for being there, for caring, and for your encouragement. Really.

This slideshow requires JavaScript.

[Editor’s Note: This post was first published recently on the excellent RheumatoidArthritis.net website. You can read it, and many other posts by myself and an incredibly informed tribe of RD bloggers/writers by clicking right here. Thanks!]

Discovering that you have rheumatoid disease is a life-changer. First, isn’t all this weird joint pain something that only old people have to deal with? Arthritis—sheesh! Break out the stinky deep-heat ointment and grab a cane!

An RD diagnosis and all that it means

If you’re a young or young-ish person, say in your 20s or 30s (I was 31 at diagnosis), the news that you have arthritis is a real shock. Learning that it can distort your joints to the point of disability over time is frightening and sobering.

Discovering that this particular type of arthritis may adversely affect other parts of your body—your heart, lungs, or vascular system, for instance, is also scary. And that there is no cure for RD—yet!—is terrifying.

RD treatments can be scary too?

All that’s enough fright for anyone, right? But wait, there’s more. Now add to all of the above the fact that the drugs that treat RD sometimes cause unpleasant or even, well, nightmarish side-effects. Even … cancer.

Whoa! Flood the moat! Pull up the drawbridge! Bar the doors!

There’s no point in pretending that the powerful drugs we use to slow or stop the progression of this disease aren’t potentially dangerous. They are. But here’s the thing: the danger they may pose is very, very small. It varies from dose to dose, from person to person, and from case of RD to case of RD.

My own rheumatologist, when I shrank from the long list of scary-sounding side-effects of the first drug he prescribed, reminded me that without treatment, I could expect the disease itself to be plenty scary enough. Untreated RD can attack not only the synovial joints, causing severe pain and disability, but the linings of the heart, lungs, and veins, causing terrible, disabling illness and even death. RD can affect the eyes, causing vision loss or blindness, as well.

Risk posed by RD treatments is small

Taking the drug with its very small side-effect percentages seemed more worth the risk after I thought about it. And when I considered the fact that almost none of the side-effects were life-threatening, debilitating, or disabling, taking it seems like a no-brainer. So I did.

It turned out that I did suffer some side-effects from the drug—the more common ones of fatigue and malaise. Since they didn’t fade away, we decided to discontinue the drug and try something else. It worked.

I’ve experienced a few side-effects since then. For instance, I’ve slowly lost (and regrown), over a long period of time, nearly a whole head of hair. The new hair came back in curly, where it had once been straight, and brown, where it had once been blonde. Neither change bothers me. I’ve always wanted curly hair, after all. And I’m not sorry that no one ever mentions “blonde moments” around me anymore.

Now, if I make a mistake, it’s just that. I like it.

I’m not saying you shouldn’t be cautious and learn everything you can about the drug or drugs you take for your RD. You should. I take three traditional DMARDs, an injectable biologic, and an NSAID, myself, and believe me, I googled. And googled. And I think that it’s because of these drugs that I’m still able to type, to walk, and to live a relatively normal life. I don’t like to think about how things might be without them.

Now, it’s true that some of the drugs used for RD may cause various cancers in tiny percentages of patients. But there is some good news on that front. A recent study of RD patients showed that treatment with methotrexate and TNFi (TNF inhibiting biologic medications) didn’t increase their chances of contracting malignant lymphoma.¹

Another recent study showed no increased risk of melanoma among RD patients taking a considerably long list of the RD drugs, including TNFi’s.²

Not being so afraid of the Big C is a relief. Knowing that my RD is under as much control as I can manage is a relief, too.