When you ignore pain because you’re used to it…

by Carolyn Thomas   @HeartSisters    June 23, 2019

I can’t be completely sure, of course, but I’m betting my next squirt of nitro spray that I am a world-class stoic when it comes to putting up with pain. I survived a ruptured appendix and a near-fatal case of peritonitis that kept me hospitalized for a month as a teenager. I popped out two babies the old-fashioned, drug-free way. I suffered a broken bone in a bicycle accident while commuting downtown, but still somehow climbed back on that bike in order to show up on time for the meeting I was heading to. 

And I put up with two long weeks of increasingly unbearable symptoms (including being unable to walk more than five steps at a time) after being initially misdiagnosed in mid-heart attack with acid reflux.

So I sat up and paid attention when I happened upon the Despite Pain blog post called The Problem with Being Used to Pain or Illness.  

This hit home for me because I’ve long harboured a secret suspicion that most “normal” people would be calling 911 for pain symptoms that I barely bat an eyelash over. In my case, refractory angina* caused by coronary microvascular disease (sometimes called “small vessel disease”) causes frequent episodes of intense chest pain (very similar to the symptoms of my 2008 heart attack, except embellished with shortness of breath and  bouts of truly crushing fatigue). I simply describe it as feeling like having a heart attack every day.

Like many people living with chronic pain, I have learned to tolerate what would be for others intolerable symptoms because pain almost feels “normal” to me.

It’s important to remember, however, that chronic pain IS pain, no matter how long we’ve had it. Symptoms like mine are always painful, and often quite scary, as Caroline Meadowlark reminds us. She became disabled at age 25 from Ehlers-Danlos Syndrome (a group of inherited disorders that affect connective tissues,  primarily skin, joints and blood vessel walls) – which is to say that Caroline knows pain. 

“You get used to it, modify your life around the chronic pain, and learn to function while in enough pain to send the average person to the ER. But it still hurts every single time.

“When you have chronic pain, you have to learn to listen closely to your body to try and distinguish between ‘good’ pain, like muscle burn or ache from exercise; ‘bad’ pain where an injury is occurring; and ‘neutral’ pain where something is just going to hurt no matter what you do.”

Thanks to my cardiac medications, including my trusty nitro spray (Don’t leave home without it!”), my TENS unit, and the skills/pain self-management education offered by our Regional Pain Clinic, I’m able to function most days, as long as I remember everything there is to know about managing chronic pain.

The author of the Despite Pain post is Liz, a woman who lives with a long list of painful conditions (e.g. chronic back and rib pain due to scoliosis, facial pain from trigeminal neuralgia, chronic headaches, osteoporosis, arthritis, Reynaud’s Syndrome, celiac disease and more). Liz describes how a serious case of acute pancreatitis that required emergency surgery was almost missed because pain seems so “normal” to her.

“When living with chronic pain or a chronic illness, patients are sometimes unaware of other health problems because they are so used to pain and feeling unwell. I am used to living with pain. I am used to feeling unwell. Because of that, I thought I was just having a bad day. But I had an extremely serious, life-threatening condition.

“My back pain was bad. That was ‘normal’. I had pain across the front of my body. Again, that was ‘normal’ as I live with rib pain. I felt very lightheaded, but my blood pressure is often low, especially when my pain is severe. I had stomach pain and was feeling generally unwell, but medication often makes me feel that way. I just wanted to lie down and sleep. Pain can be tiring, so that wasn’t unusual.

“There was no point in seeing the doctor, was there? I was in pain and feeling fairly unwell, but that was ‘normal’ for me.”

People who live with more than one chronic condition face the need to figure out which condition to blame for each serious symptom. Many of my readers have shared this experience. Pauline Lambert Reynolds, for example, wrote:

“I have had both acid reflux and coronary artery disease for at least 13 years now. So far, I have been able to tell the difference, even after 12 stents! If I have the slightest hint of chest pressure, I take a Tums. If I burp in five minutes, I’m okay. If it continues and I don’t burp, I take nitro. So goes my idyllic existence.”

Another example: Debbie Orth survived a serious heart attack at the age of 48. But five weeks earlier, she had severe symptoms diagnosed as acid reflux, confirmed by endoscopy. See also: “Dear Carolyn: ‘I Had Both Acid Reflux and a Heart Attack at the Same Time

But sometimes, it’s a brand spanking new condition sending us urgent messages that we choose to ignore. The very real possibility for those of us who get used to awful pain or other symptoms is the tendency to ignore potentially serious conditions.

So how do you know when to see a doctor if you are used to pain or illness? 

Here’s Liz’s list of suggestions from Despite Pain (thank you, Liz):

  • Learn about your condition so you know what to expect. If you have symptoms which aren’t normal for that condition, see your doctor.
  • Learn about your own typical symptoms. (Using a pain diary helps with this). If something is different from your normal, speak to a doctor. Give as good an explanation as possible. Tell the doctor everything, including the small details. Sometimes those small details are important.
  • If you feel that something just isn’t right, trust your gut instinct, and see the doctor.
  • If your best friend were to experience your symptoms, what would your advice be? If your answer is “See a doctor!”, take your own advice.
  • Don’t ignore new or worrying symptoms. Tell your doctor.

Image: Ulrike Leone, Pixabay

* Refractory angina pectoris: defined by the Canadian Cardiovascular Society as class III or IV angina that typically does not respond to conventional medications, lifestyle modifications, or invasive cardiac treatments.

NOTE FROM CAROLYN:  I wrote much more about identifying cardiac symptoms in Chapter 1 of my book, “A Woman’s Guide to Living with Heart Disease”. You can ask for it at your local library or favourite bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from my publisher, Johns Hopkins University Press (use the code HTWN to save 20% off the list price).

Q:  Have you ever blamed an existing condition for new symptoms that had nothing to do with other diagnoses?

See also:

10 thoughts on “When you ignore pain because you’re used to it…

  1. Hi Carolyn – very interesting post. I also hear this from my patients when I ask why didn’t you seek help sooner when your symptoms first started? They frequently respond oh I didn’t think it was that serious, I just thought it was _______ (fill in the blank, one of the chronic illnesses they’ve lived with for a long time).

    Liked by 1 person

  2. In my thirties I took part in a headache study at the local university. That was when I learned that not everyone has a bad headache all day everyday.

    I couldn’t remember not having a headache, even as a child, so how was I to know it was not normal? A referral to a neurologist led to a diagnosis of migraines and the idea that it was possible to be migraine-free.

    That was not a smooth or easy path.

    A little later I was also diagnosed with chronic fatigue syndrome and fibromyalgia.
    When heart failure caused increased fatigue and reduced stamina when I was in a job doing irregular 12 hour shifts (day and night), of course I couldn’t recognize or differentiate the symptoms.

    Like

    1. Wow! I’m trying to picture a little Jenn as a small child having non-stop headache pain and thinking that this was “normal” to live like this – for decades! So awful…

      You also raise an interesting point here: when day-to-day life changes are happening (like working irregular 12-hour shifts), no wonder you blamed things like fatigue and reduced stamina on factors like long days (or nights) at work! This reinforces the importance of trusting your gut feeling when something is just not feeling right…

      Like

  3. I have both Hypertrophic Cardiomyopathy(HCM) and Coronary Artery Disease (CAD). Differentiating my GERD from cardiac pain is fairly easy for me, but differentiating some other new heart pain from my ongoing HCM is trickier.

    My HCM Pain is generally relieved by an extra dose of short acting verapamil. Once back in 2011, I was having persistent chest pain unrelieved by usual meds, low BP….tired… nothing too unusual for me – went to work anyway (of course).

    Several people commented I didn’t look well and someone finally convinced me to see a doctor as it was the evening of a 4 day holiday weekend. I walked 3 blocks to the Doctor’s office and was promptly put in an ambulance and returned to the hospital where I worked…

    Everyone thought it was a heart attack but it turned out to be Takotsubo syndrome, brought on by the nebulizer treatments I had been taking for asthmatic bronchitis.

    My left ventricle had blown up like a balloon, my cardiac output dropped to 30% and I had a huge clot in my left ventricle….. Saved from a stroke by blood thinners.

    A couple years ago, the only difference I noticed in my usual chest pain was that I developed sharp pains between my shoulder blades…. which I never had before. My cardiologist trusted my differentiation from my usual pain and sent me for a cardiac Cath. They found a 90% lesion in my circumflex artery, and placed a stent.

    Yes, knowing your normal pain well and acknowledging changes that need investigation can save your life!!!

    Liked by 1 person

    1. Hello Jill – that story of your Takotsubo diagnosis is a great example of how delicate the balance is between recognizing a new cardiac symptom compared to what you’re used to (even allowing us to go to work!)

      Thank goodness for your colleague who managed to convince you to see your doctor! (You just know that if something’s going to blow up, it will be on the eve of a long weekend, right?) And thank goodness your cardiologist trusted your instinct and experience and referred you to the cath lab.

      Thanks for sharing those informative examples with us!

      Like

  4. Thanks for sharing my story and link to my post.

    After publishing my post last week, so many chronic illness sufferers told me that they’d had similar experiences. It really is quite worrying. We get to that stage of accepting this normal that we don’t realise when it’s not normal.

    Liked by 1 person

    1. Thank you so much Liz for weighing in here, and thank you especially for your blog post that inspired me to write this. As you described your pancreatitis crisis, there were several points at which it was tough for you to identify new symptoms as an actual threat.

      Living with chronic pain is almost as dangerous as not being able to experience pain at all. I listened to a radio interview recently about people with congenital analgesia, a condition in which they are somehow unable to experience any physical pain, and are in constant danger of being terribly burned or injured because they can’t feel the warning signs of pain. Although not as dramatic, the chronic pain patient’s tendency to “accept this normal”, as you say, can be equally threatening!

      Liked by 1 person

Leave a Reply to Despite Pain Cancel reply

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 )

Google photo

You are commenting using your Google 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