How acute understanding of chronic pain can improve lives

How do I know that my hip is getting better? My back is hurting more.

I know that sounds like a bad joke, but it really falls into the category of “funny ’cause it’s true.” It’s not actually funny, but laughter is a great coping mechanism. Sometimes I can’t tell if one symptom is getting better or if it’s just being overshadowed by another that’s getting worse. That’s the way it goes for many people living with a multisystem disease like sarcoidosis.

Sarcoidosis stems from systemic inflammation that can lead to pain throughout the entire body. It can also develop in any individual organ or system. For me, that includes my lungs (painful wheezing, especially in cold weather), nervous system (small fiber neuropathy, causing burning and prickling sensations), skin (erythema nodosum, causing painful lumps on my lower legs), and joints (arthritis).

As if that weren’t enough, I’ve also been diagnosed with chronic fatigue syndrome, chronic migraine, degenerative disk disease, endometriosis, fibromyalgia, gastroesophageal reflux disease, herniated disks, irritable bowel syndrome, osteoarthritis, multiple radiculopathies (pinched nerves), rheumatoid arthritis, sacroiliitis, and Sjögren’s syndrome, each of which causes pain in its respective area. I’m not exaggerating when I say that I live in pain every waking moment of every day.

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So when it comes to Chronic Pain Awareness Month, I’ve got a lot to celebrate. OK, maybe not celebrate. But chronic pain is something I’m acutely aware of, so I recognize the need for a month like this one.

To many, it may seem unnecessary — after all, everyone has experienced pain at some point. You walk by a coffee table and stub your toe. You take a sip of too-hot coffee and burn your tongue. You get a paper cut. Or a flu shot. Or fall and break a bone. Surely everyone knows what pain is. So what’s with this awareness month?

But that’s just the thing. Everyone has experienced acute pain, so they think they understand. But chronic pain is something else entirely.

The difference between acute and chronic pain

Acute pain is a reaction to a specific stimulus, like that stubbed toe or coffee burn. It’s how your body tells you that something’s wrong. Once the problem subsides, the pain fades away, and you go about your day.

Chronic pain, on the other hand, is pain that lasts six months or longer. It’s pain that lingers even after the injury has healed. Sometimes, there’s no initial injury at all. Chronic pain can be caused by conditions such as fibromyalgia, arthritis, and sarcoidosis, or even have no identifiable cause.

Just last year, the World Health Organization added chronic primary pain to its International Classification of Diseases (ICD-11), with its own diagnostic code. It’s heartening to see the medical community begin to catch up, but we’ve still got a long way to go.

The pain we feel can hit anywhere, anytime, at any intensity, for any duration. It can burn, sting, pinch, cramp, stab, or ache. It can feel like we’re stuck in a vise, getting electric shocks, or are going to burst from the pressure. There should be another word to embody the extremity and severity of chronic pain. It’s not enough to say “it hurts.”

When pain becomes chronic, it can affect every aspect of our lives. It can interfere with sleep, mobility, work, socialization, and even cognitive ability. We can literally be stopped in our tracks with pain so excruciating that we can’t even think. We may try pharmaceuticals, complementary and alternative therapies, lifestyle changes, or all of the above and still not get the relief we need. Naturally, that can affect our mental and emotional well-being, too.

Perhaps worst of all is the impact it can have on our relationships. When those around us don’t understand the difference between acute and chronic pain, they can find it hard to empathize with our situation. They may say something to the effect of, “I get it. I banged my elbow the other day, you know, in that bad spot, and it hurt for a good half-hour!”

As well-intentioned as that may be, they’re really showing just how much they don’t understand the difference. That can lead to frustration on both sides, as we feel that our loved ones are belittling our experience, and they feel like we don’t appreciate their attempts.

That’s why a month like this one is so important. In the short term, better understanding can improve our relationships and our quality of life. In the long term, it leads to steps like code MG30.0 in the ICD-11, recognizing chronic primary pain as a unique condition. That recognition can lead to funding for research, which can lead to better treatments that improve our quality of life, letting us feel like ourselves again.

Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sarcoidosis.