When heart disease isn’t your biggest problem

                                                    .           by Carolyn Thomas      

I did not see this coming.   I’d always thought that it would be heart disease that would do me in.  A year ago, when I noticed a deep pain at the base of each thumb, I figured I must have somehow injured (both) hands at the same time. When the pain got so bad I could no longer push-and-twist open the child-proof caps on the bottles of my cardiac meds, I asked my pharmacist to use easy-open caps for my drug prescriptions from now on. It took a while before the gnarled finger joints of both hands began to swell until they now resemble those of the Wicked Witch of the West.

I remember looking at my outstretched fingers one morning and wondering, “Whose hands ARE these?”       .   

I should have expected the results of my hand x-rays:  arthritis in the joints of my fingers, the same arthritis that had been diagnosed in the x-ray of my left knee, the cause of breathtaking new pain with each step during the past few months.

So when my family doctor recently asked about my ongoing cardiac symptoms (during our first in-person appointment since pre-COVID), I flicked my deformed fingers at her dismissively.  “Cardiac!?  That’s the LEAST of my problems right now!”

You know it’s bad when heart disease – our #1 killer! – begins to take second place to a new diagnosis. How can scary chest pain (in my case, caused by coronary microvascular disease) that’s been so pervasively overwhelming over the past 14 years of my daily life suddenly now seem hardly worth mentioning?  Well, my dear heart sisters, everything is relative. And distraction is powerful. As my late mother used to joke:  “Any problem in life will fade away by wearing shoes at least one size too small!” 

Over the years, I’ve gradually learned how to manage my daily cardiac symptoms, but I’m a rank amateur at coping with painful arthritis symptoms. It has occurred to me, however, that feeling overwhelmed by new pain is actually pretty normal.  The dismay of learning that yet another body part is now in trouble really sucks.

Our doctors call this state of having more than one serious chronic diagnosis at the same time “co-morbidity” or  “multi-morbidity” – or as I prefer to call it, “a living hell”. And in a cruel twist of fate, painful arthritis is surprisingly common among people with other chronic conditions.

According to the CDC, for example, while about 20 per cent of adults have arthritis, it’s even more common among adults already living with chronic conditions like diabetes or heart disease. In fact, about half of heart patients will develop arthritis. There is no cure for arthritis, but I’m told that, like many chronic conditions, it can be “managed”.  I think this means that one day, I will no longer feel the urge to poke out my own eyes with a stick. . .

Researchers have studied people living with more than one chronic illness, and as researchers like to do, they have come up with distinct categories of patients, along with clever names for each group. One often-cited study (Reeve & Cooper) on those living with“co-morbidities” identified three key categories based on how such patients viewed their personal experience of multiple chronic illnesses, and specifically how the daily presence of pain affected their quality of life:(1)

1. The “gliding swan” group (basically, the absence of significant health-related disruption;  “resilience”  was the keyword among these patients)

2.  The “stormy seas” group (significant health-related disruption; health care was the dominant narrative theme; “vulnerability” was the keyword here)

3. The “stuck adrift” group (daily life narrative was completely interrupted by illness or treatment burden, feeling bad  was the dominant theme; the keyword was “disruption”)

I’m a reluctant newbie to this arthritis world. Both “stormy” and “stuck” would be appropriate descriptors of the painful upheaval that this arthritis diagnosis has brought me. But my longterm chest pain of refractory angina?   Ironically, it’s now the “resilience” of that gliding swan category!

I’ve learned so far that there are two main types of arthritis. The kind I have is osteoarthritis (OA), the most common form, usually affecting the joints of the hands, feet, hips, knees or spine. As Canada’s Public Health Agency explains, it’s usually blamed on inflammation, genes, aging or sex. (Women are significantly more likely than men to develop osteoarthritis, most before the age of 65). Pain is caused by the break down of the joint cartilage (the tough material that covers the bones) or the underlying bone. I also learned that previous injuries or joint surgery (like the operation I had decades ago to repair a torn meniscus in my left knee, for example) can increase the risk of later osteoarthritis in that joint.

The other main type of arthritis is rheumatoid arthritis (RA), which unlike OA is an autoimmune disease.

I’ve spent the past few months trying to avoid putting weight on my left knee to help minimize the extreme pain of each step. This has meant some remarkable changes to daily life.These include using a cane, no longer walking my darling Baby Zack around the neighbourhood in his stroller for morning naps, avoiding stairs or standing, and not being able to join my walking buddies for our regular weekly walks. Instead, I’ve usually been collapsed on my red LaZBoy recliner, left leg elevated, ice packs alternating with my heating pad, my extra pillows, blankie and Extra-Strength Tylenol close at hand.*  So far, I’ve also finished off several binge-worthy NetFlix series in this position (which I acknowledge has also been a common pastime even among my non-arthritic friends and family during COVID).

BUT what’s this? Now I’m learning that what will help to reduce my arthritis pain is EXERCISE, not rest!  In fact, when I saw an orthopedic surgeon this past week to discuss my knee pain, the first option on his suggested treatment plan list was to have me fitted for a leg brace, “so we can get you back to your walking group as soon as possible!”   

Orthopedic surgeon Dr. Howard Luks reinforces that plan in his very helpful blog:

“Far too many people believe that arthritis is caused by mechanical wear and tear. Osteoarthritis appears to be caused by low-grade chronic inflammation. This is the same chronic inflammation held as a cause of other chronic diseases such as Type 2 diabetes, heart disease and fatty liver.

“It’s only natural that you might assume that your arthritic knee pain will worsen with exercise. Too many healthcare professionals counsel their patients to stop running, speed walking, elliptical, treadmill, etc. to ‘save’ their joints. Most of the time, you need to do just the opposite. The research over the years has been unequivocal.”

* IMPORTANT WARNING re PAIN MEDICATIONS FOR HEART PATIENTS

You may have read that the pain medication routinely recommended to address arthritis pain or any pain associated with inflammation, swelling or acute injury is the family of drugs called NSAIDs (Non-Steroidal Anti-Inflammatory Drugs). But according to Mayo Clinic cardiologist Dr. Rekha Mankad and many other experts, studies now suggest that this type of pain-relieving drug can increase the risk of a heart attack, stroke and high blood pressure – whether you already have heart disease or not, although the risk is greatest among those who already have heart disease.

NSAIDs are available over-the-counter or with a prescription. They include ibuprofen (Advil, Motrin IB, others), naproxen sodium (Aleve, Anaprox DS, others), diclofenac sodium (Voltaren, Solaraze, others), acetylsalicylic acid (Bayer, aspirin, others) and celecoxib (Celebrex).

If you need to take an NSAID, take the smallest dose for as short a time as possible to limit the risk of heart attack or stroke. Consider the topical form of the drug (cream, ointment, gel) which are reported to have fewer cardiovascular risks than the oral (pill) form of NSAIDs. Dr. Mankad warns that although NSAIDs are probably safe to take once in a while, serious side effects can occur as early as the first weeks of continuously using an NSAID and the risk can increase the longer you take it. If you are a heart patient, please discuss alternative pain meds e.g. acetaminophen (Tylenol) with your own doctor before taking any NSAIDs.

Learn more from Mayo Clinic about the NSAIDs warning here.

1. Reeve, J, Cooper, L. “Rethinking how we understand individual healthcare needs for people living with long-term conditions: a qualitative study.” Health Soc Care Commun 2016; 24(1): 2738.

NOTE FROM CAROLYN:  I wrote more about women’s co-morbidities in my book  “A Woman’s Guide to Living with Heart Disease.  You can ask for it at bookstores (please support your local independent bookseller!) or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from my publisher Johns Hopkins University Press (use their code HTWN to save 30% off the list price).

Q:    If you’re living with more than one chronic illness, are you gliding, stormy, or stuck? 

See also:

When you ignore pain because you’re used to it

Confessions of a non-compliant patient

Let’s all play Chronic Illness Bingo!

What other diagnosis doubles your risk of having a heart attack?

21 thoughts on “When heart disease isn’t your biggest problem

  1. Hi Carolyn. Very sorry to hear about your OA. Hope that will get some relief soon. You’re right – some diagnoses put your cardiac issues on the back burner. I remember looking in the mirror at my body, when I received a new diagnosis and telling my body to stop – wasn’t the cardiac open heart enoughfor you?

    Recently, a large dog slammed me into a brick wall. My toes were broken (Ortho found another break higher in the foot). I have pain and severe bruising in my hip and shoulder. During this, I realized that the PAIN overshadowed my cardiac condition. Make the PAIN go away, is my new mantra!

    Carolyn – My best wishes and prayers go out to you. Hope that you get some relief soon. Your blog is important to me, I always look forward to receiving it. Thank you.

    Liked by 1 person

    1. Thanks so much for your kind words, Virginia. I loved reading your comment!

      The description of your brick wall accident (OUCH!) overshadowing your cardiac condition rings 100% true for me, too! Isn’t it ironic that the pain you’re experiencing in your foot/hip/shoulder – pain which is acutely bad, but won’t kill you – feels overwhelmingly more disruptive compared to cardiac symptoms – which CAN kill you?!?

      I hope your recuperation will be smooth and uneventful. Take care, stay safe – and watch out for big dogs near brick walls! ♥

      Like

  2. I really object to the set combinations of emotional state and physical state. My physical symptoms of various ailments are slowly increasing, and new ones are diagnosed, it sometimes seems, daily. My emotional state is totally separate.

    While I would never describe myself as a “gliding swan”, I know I’m very resilient in spite of health problems. My physical condition is always at least “stormy seas” but I don’t see that as vulnerability and can’t imagine why those two are linked. And my life is continuously disrupted by my medical conditions, but after the initial challenge of getting the condition diagnosed and symptoms managed, it’s just another piece of my life, certainly not stuck adrift.

    I can appreciate the disruption of chronic pain, as that’s a piece of my life as well, though not as bad as yours, for sure! Chronic pain may be the worst part of my life, though the least likely to kill me!

    But I know you’ll come to a new equilibrium, however that’s described, because, whatever else you may feel, physically or emotionally, YOU ARE RESILIENT!

    Like

  3. Hello Carolyn. Ever since I read one of your columns and identified with your experience of being initially misdiagnosed, I’ve continued to follow you.

    While I’ve developed disfiguring arthritis in my fingers and joint stiffness, I’m fortunate not to need a cane. However, while my cardiologist poo poos this, I’ve noticed changes in my joints that correspond to how often I’ve taken Hydrochlorothiazide (Hctz).

    Before my third heart attack, I would take it sporadically whenever my blood pressure was higher than normal. I noticed that the swelling in my joints came and went in direct relationship to whether I was on it.

    Now that I take it every day, my joints are extremely swollen and I have developed a “trigger” finger that will require surgical intervention. Have you come across any studies that link Hctz with arthritis? Also any studies that indicate arthritis is hereditary or familial?

    Liked by 1 person

    1. Hello Lillian – you’re smart to connect the dots. I’m not a physician, of course, but I have learned that a family history of arthritis (parents or siblings) may indeed be a risk factor.

      And “joint pain, stiffness, or swelling” are listed as potential side effects of the hydrochlorthiazide diuretic drug Hctz. A 2019 study published in the journal “Osteoarthritis and Cartilage”, for example, found that “among patients with knee osteoarthritis, the use of thiazide diuretics is associated with a higher risk of knee replacement surgery, possibly due to the effect of thiazide diuretics on bone mineral density.” We also know that diuretics can increase the risk of developing gout, a type of arthritis caused by the buildup of uric acid crystals in a joint.

      There are many other kinds of BP meds that aren’t linked to worsening arthritis symptoms. Talk to your doctor about choosing an alternative blood pressure medication. Good luck to you!

      Take care, stay safe. . . ♥

      Like

  4. I was so disappointed when my cardiologist told me not to use ibuprofen or NSAIDs. What am I to do for joint pain??

    This became more distressing with recent surgery when the surgeon said to alternate Tylenol and ibuprofen. Both surgeon and anesthesiologist were surprised to hear I couldn’t take ibuprofen because of microvascular angina. Is this a new recommendation?

    That said, not having the relief of NSAIDs does push me to do yoga and move more.

    Liked by 1 person

    1. Hello Sara – it’s very confusing to patients when some doctors appear to be unaware of which drugs should no longer be recommended for longterm use – especially for heart patients! I’m not a physician, of course, but my understanding is that NSAIDs are no longer considered appropriate for longterm use (e.g. for joint pain). But the Mayo Clinic site I quoted suggests they may be safe for “once in a while” or “lowest dose for as short a time as possible” – which likely wouldn’t make the drugs particularly effective for ongoing joint pain.

      This is NOT a new recommendation. The first official warning about NSAIDs was issued in 2005, after the NSAID called rofecoxib (Vioxx) was found to have caused over 140,000 heart attacks in the U.S. during the five years it was on the market. The year before, Vioxx had been removed from the market by its manufacturer, Merck. In 2015, the FDA strengthened existing label warnings that non-aspirin (NSAIDs) increase the chance of a heart attack or stroke. (Aspirin is also an NSAID but is not included in the heart attack/stroke warnings). NOTE: these warnings are based on NSAIDs in oral (pill) form. Studies suggest that topical NSAIDs (gel, ointment, cream) do not carry the same cardiovascular risk that the oral version of the drugs do. Ask your doctor about topical NSAIDs.

      Interesting that in the absence of the NSAID you wanted, you had to come up with non-drug alternatives. “Necessity is the mother of invention”, right? Take care, stay safe . . . ♥

      Like

  5. Just when I think I’ve had my share of stuff with the cardiac issue, then comes an MRI with lacunar ischemia–let’s say it plainly: a small type of stroke. Crud. Sigh. Grateful my only symptom at the moment is a little balance issue.

    Anyway, I know you will put your efforts into figuring this out like you did with the cardiac issues (so helpful, please keep going!)

    I want to share that several years ago through a work project I spent time with the department head of nutrition at a major university. I learned so much, and one of the things I recall she mentioned was they recommend avoiding “nightshade” variety of plants to keep inflammation down with arthritis. There are a bunch of very common ones like tomato, potato, eggplant and many more. Maybe a credentialed nutritionist who works with OA patients would be helpful.

    The other tip I have is less academic. It came from the checker at my grocery story who had such terrible knee pain she was worried about being able to do the job. She told me she started drinking tart cherry juice and it made a huge difference. I have these bad thumbs with the joints all swollen, so I think what the heck, and buy a bottle (no sugar added, no apple juice blend, just 100% tart cherry juice. And it wasn’t available at that store so she wasn’t pitching). Maybe it is the placebo effect, but my thumb swelling and pain went waaaaay down. So now it’s a part of my eating plan and I don’t need Advil (not that I could take it, but I’ve taken my fair share in the past). I’m so grateful for her comment.

    Good luck – I know you will find a strategy for relief.

    Liked by 1 person

    1. Hi Tomi – my wonderful readers are SO educational! ‘Lacunar stroke’ was a new term for me – so I looked it up. Just FYI for other readers, a Lacunar stroke is a type of ischemic stroke that occurs when blood flow to one of the small arteries deep WITHIN the brain becomes blocked. (By comparison, a stroke occurs when a blockage interrupts or prevents blood flow TO the brain). As you say. . . “CRUD!” Just what you needed . . . NOT!

      I sure hope your balance improves, and that will be the worst of it.

      I do remember reading something about the nightshade family of plants contributing to inflammation (that was when I wasn’t remotely interested in the subject of inflammation, I guess!) I shall look into that. And that tart cherry juice suggestion sounds delicious – I’m a farmer’s daughter and loved all kinds of cherries on our farm, the “tarter” the better. Thanks for that! Whether it’s placebo or not, at this point I’m willing to consider anything that might address the pain and swelling.

      Take care, stay safe. . . ♥

      Like

  6. Well, for heaven’s sake! Aren’t you the mind reader?! I’m gliding through my a-fib (with the help of our local a-fib clinic which is really responsive) but bouncing through the 3 characteristics as I deal with arthritis.

    I remember vividly the crazy “bone-spur” that suddenly, painfully popped up on the base of my thumb. Jar opening is such a bother – not only pain, but real weakness in my hands. And then an MRI showed the mighty Art in my upper spine. Flippin’ ‘eck!

    Surprise, surprise: blood tests have shown a low-level chronic inflammation for about 10 years.

    I can attest to the “keep moving” philosophy. Even though I hurt in many places and spend a lot of time in my red leather recliner, I don’t want to give up my regular exercise classes (now brought to us on Zoom from our instructor’s spare bedroom) because they deal with mind and soul as well as body – a COVID godsend. I switched to low impact moves and that works.

    Just yesterday I had a flare-up in my back and it became a chair day with my friend the heating pad and Tylenol. This morning I did a class and now I feel Grrrreat! OK, lots better.

    I know it seems completely counter-intuitive but it works. Baby steps.

    Liked by 1 person

    1. Hello Deborah! “The Mighty Art” – is that what I have to call it now?! Upper spine definitely sounds painful. . . Flippin’ ‘eck! indeed!! 😦 I too remember that first recognition of the ‘bone spurs’ that seemed to have changed the geography of my palms into strange pointy weapons, and also changed my once-strong fingers into weak little appendages overnight!

      I know I’m in the “baby steps” stage right now – with a whopping dollop of denial thrown in. The more I learn, the more I realize how those 2-3 months I’ve just spent curled up in my red leather recliner trying to find a position that might somehow relieve my knee pain did NOT help me, and in fact may have simply made things much worse because of how very de-conditioned I’ve become.

      I have to say that I’m so encouraged by the many helpful suggestions from others in the same boat – this morning, for example, one of my readers told me via Twitter about the “Classical Stretch” Full Body Pain Relief workout that she had discovered on PBS. I then found it on YouTube and did the 30-minute workout this morning – the first organized ‘class’ I’ve done in months, and carefully led by an excellent instructor. And I could do it without hurting my knee, or any other body part. Why wasn’t I doing this months ago?!

      Thanks for leaving a comment today, and good luck with your back, Deborah. . . Take care and stay safe! ♥

      Like

  7. Carolyn: A godsend…your post this morning struck so many responsive chords, and after reading it, I felt so much better about the seemingly sudden deluge of aches and pains in my knee, hip and thigh…

    Thank You so much for this post!

    Liked by 1 person

    1. Hi Sharon – your accurate description of “seemingly sudden” is what really knocked me off my feet (literally!) It was almost as if one day I was happily pushing a baby stroller during my very brisk daily 90-minute walk while our Baby Zack napped – and the very next day I could hardly figure out how to lift my leg out of bed without howling in pain! One day my fingers looked like they had always looked, yet the next day, I noticed that they looked like somebody else’s hands! How does this happen?!

      It was also a big reminder about aging – a topic which had never bothered me at all until now. I’d always thought arthritis happened to very elderly people, NOT to people like me. So I was shocked to learn that arthritis is not typically a wear-and-tear condition of feeble seniors, but as the CDC points out, the majority of people with arthritis are UNDER 65 years old. And rheumatoid arthritis, can develop at any age – even in children. Lots to learn…

      Take care, stay safe. . . ♥

      Liked by 1 person

  8. Stormy stuck person. Atrial fibrillation, coronary artery disease, Type II diabetes, arthritis. It seems like my days are filled with pills and finger jabs.

    Diet? I’m down to eating dirt at this point. Everything else is off-limits.

    When I was suffering from crippling sciatica (and had been for a couple of years), I cam across the Egoscue Method for dealing with those kinds of pain. It’s really common sense, in a lot of ways. The body is made to move. If it doesn’t, bad things happen. If, as you describe, you sit around avoiding pain, what happens is that your body starts to compensate — you favor your right leg when the left knee hurts, for instance. Over time, your bones realign as they attempt to compensate. More pain ensues. You exercise less.

    We are meant to move, and our body needs to be aligned, shoulders, hips, and feet. So I did the five simple exercises they recommended for sciatica–took me about 10 minutes a day–and I swear to you, my sciatica was gone within three days. They have Youtube channels with exercises for all kinds of skeletal problems.

    I cannot recommend the Egoscue Method more highly.

    Liked by 1 person

    1. Hello Wendy – thank you for your comment, especially given your extensive personal history of co-morbidities. Thanks also for mentioning your experience with the Egoscue Method, which I’m not familiar with until today – but will look it up.

      Our bodies are absolutely meant to move. Which is why it’s so distressing to STOP moving because it hurts so much to do so. Until very recently, I did believe that, as Dr. Luks wrote, I was somehow “saving” my knee joint by not putting weight on that painful knee – which is of course wrong. I’m now spending time exploring the joint-friendly ways I can resume exercising. We live and learn.

      Take care, stay safe. . . ♥

      Like

  9. How about; gliding until a storm hits, then stuck until the docs and I figure out what’s next? So alternating gliding, stormy and stuck depending on the state of each Co-morbidity.

    But what I’ve learned is to try to stay centered in my belief that I am not just my body and its painful parts. Our mind stirs up reactions and emotions that cause us all kinds of increased suffering over and above the physical pain; “What is this? Why is it happening? I don’t think I can stand this. Will I ever be better? Oh no, there’s that pain again,,,I wish it would go away.”

    So I spend time on reading and exercises to calm my mind. Also, instead of being angry at the body part of the day, I talk to my parts and thank them for all they have done for me. Yup, I’m weird.

    But it makes my days glide most of the time and gives me a solid plan for the next storm.

    May Blessings and pain relief come your way!

    Liked by 1 person

    1. Hello Jill – I really like your overview of “gliding until a storm hits, then stuck until the docs and I figure out what’s next?” That’s so true. . .

      In 2014, I wrote a post (and included it later in my book) that echoed your sentiment (not weird at all!) of thanking your parts for all they’ve done for you (The Day I Made Peace with an Errant Organ”)

      But it took me some time – and lots of supportive help – to come around to that kind of serenity focused on my heart.

      Right now, those reactions and emotions around these new arthritis symptoms are indeed swirling. For example, when I first realized I could no longer open my pill bottles (and that symptoms were getting worse, not better), it was a very short road to worrying about what else I’d soon be unable to do. It made perfect sense to me that if I’m no longer able to open pill bottles myself, how long will it be until I’m no longer able to lift a watering can for my balcony plants? Or tie my own running shoes? Or safely carry my grandbabies?

      These are all realistic possibilities, not just reactive emotions – because I knew I’d need to start planning for such eventualities, with whatever help or mobility aids or short cuts I can figure out. For some of us, it takes longer than others need to ensure whatever practical solutions we can find before being able to arrive at that calm mind.

      Take care, stay safe out there. . . ♥

      Like

  10. This sounds so familiar! My cardiac event was last March and was all-consuming with uncontrolled angina until only recently.

    In June, they did a head/neck CT to rule out a dissected artery. Ends up my arteries are ‘fine’ but I have severe arthritis in my neck.

    Since then, the pain has also increased in my lower back and hips, and I now have pain in my hands. I have trouble holding jars to open them. I am waiting to start work with a physio and to see a rhumatologist (and a neurosurgeon for my neck). I have been treating this with tylenol (I am quite concerned about NSAIDs), heating pads, Feldenkrais treatments and resistance exercises to help reinforce my muscles and stabilize my joints.

    This health stuff is a full time job. Stormy seas with the occasional calm waters.

    Liked by 1 person

    1. Thank you Dima for sharing your experience here. You are so right: “this health stuff is a full time job!” Sometimes it all seems TOO MUCH, doesn’t it?

      I’m so sorry that you are suffering through this new arthritis diagnosis, and hope your ongoing treatment plans will help to reduce your symptoms. I’m keeping my gnarly fingers crossed for you…

      Take care, stay safe. . . ♥

      Like

Your opinion matters. What do you think?

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s