Morning Habits with Ankylosing Spondylitis

What does rheumatoid arthritis (RA) feel like? The short answer is: It’s more than just joint pain. But here is my longer answer.

We all experience pain at some point in our lives — maybe we’ve fallen off our bike, got hit by a ball while playing sports, cut ourselves while cooking, or got decked over the years by our siblings. Pain comes in many different forms. We try our best to avoid pain — unless we’re a boxer, into S&M, or looking to get a new tattoo, but at least that pain has an end, right?

Well, my pain doesn’t go away, in fact, it’s quite progressive. Since my mid-twenties I’ve been experiencing chronic pain — among other surprising symptoms — due to the systemic autoimmune disease rheumatoid arthritis. My journey with chronic pain is a long incurable one that requires different medications and self-care strategies to find some quality of life.

Don’t let misconceptions fool you. Arthritis is more common than you think — for any age.

More often than not people are surprised to find out I live with a chronic illness. They’re even more surprised when I start to describe what my chronic illness does to me, because I look healthy and young and there are many misconceptions about what arthritis really is. More often than not, I am told I am “too young for arthritis” or “it could be worse.” I’m also met with “oh, my grandmother had that in her finger.”

I can assure you that rheumatoid arthritis is more than joint pain and it definitely impacts on not only the elderly.

Rheumatoid arthritis is not just arthritis.

There are more than 100 forms of arthritis. The most common type is osteoarthritis, which is a “wear-and-tear” kind that comes after an injury or old age (or, in my case, as a co-occurring condition with my RA). While osteoarthritis is a serious condition that can severely impact someone’s life, it’s not rheumatoid arthritis.

Rheumatoid rhymes with hemorrhoids because it’s far crappier to live with.

When you look up the symptoms of RA on medical websites, you usually see a list like this:

  • Tender, warm, swollen joints (typically in symmetrical joints on both sides of the body)
  • Joint stiffness that is usually worse in the mornings and after being inactive
  • Fatigue
  • Fever
  • Loss of appetite

But the same inflammatory process that affects my joints can also cause problems for my eyes, lungs, skin, heart, blood vessels, and other organs. Inflammation is extremely bad for your entire body, not just your joints.

When I was diagnosed five years ago — at the age of 29 — I finally had a name for the downward spiral it felt like my mind and body were diving into. I knew a little about rheumatoid arthritis because my aunt had it, but a diagnosis helped me understand that those weird symptoms I was experiencing weren’t all in my head or something I could just push through.

To find out what a disease is really like, read patient perspectives to get the full understanding.

How can someone truly understand what it feels like to live with a chronic disease from some bullet points and vague words in areas where we’ve all probably all felt pain at one point or another?

Rheumatoid arthritis is often an invisible illness. It’s naked to others but consuming to us living with it.

Listen to those who walk the arthritic walk and talk the talk as an advocate. No one can tell you better than someone who has a lived experience.

Five years into this diagnosis but more than a decade into a life with chronic pain, I know pain isn’t the only debilitating symptom from rheumatoid arthritis. There is also fatigue, cognitive dysfunction, lowered immune system (which makes fighting off infections harder), damage to our organs, and the emotional toll of living with chronic illness.

That’s just a handful of the things that people living with RA experience on a regular basis. But at any given point I am experiencing some sort of discomfort somewhere in my body either caused by disease or the medications I take to treat it.

I would describe living with rheumatoid arthritis more like:

  • Burning, throbbing, gnawing, aching joint pain all while someone has your extremities in a vice trying to turn and twist them into a new direction
  • A hangover without the fun night
  • A constant nagging flu
  • Overwhelming debilitating exhaustion that feels like a concrete wall stopping you from completing the simplest tasks
  • Not doing much but feeling as though my body has run a marathon
  • My thoughts feel like they are swimming in a thick fog, leaving me forgetful and often feeling like I’m losing your mind.
  • While I am only 34, I feel like I am 87 and have more in common senior citizens than most people my age
  • As though my body were a human Rice Krispies square (every time I move it snaps, crackles, and pops)
  • Feeling like the Tin Man from The Wizard of Oz with how stiff I consistently feel

Chronic illnesses are like chips, you can’t just have one. They like to bring uninvited friends to the party in your body.

Rheumatoid arthritis likes to come with “friends” — these are comorbidities, or other diseases, that want in on the action inside my body. I also live with fibromyalgia, osteoarthritis, Raynaud’s, myeloneuropathy, and endometriosis. That’s just my combination so far. Many others with rheumatoid arthritis have other conditions like diabetes or Sjögren’s syndrome among other serious diseases.

Every case of RA is different, but each of us has a lot of similarities too.

Because I live with so many conditions, it can be a challenge to pinpoint which issue is causing my pain, although a rheumatoid arthritis flare can be detected through blood testing, visible swelling (although not always), and keeping a symptom journal.

After five years with this disease, I’ve learned how important it is to track all my symptoms because of how progressive RA is — and how important it is to understand your symptoms to fully manage your disease.

Note: You can use our ArthritisPower app to track your symptoms and disease activity and share your results with your doctor. Learn more and sign up here.

Not Sure What’s Causing Your Pain?

Check out PainSpot, our pain locator tool. Answer a few simple questions about what hurts and discover possible conditions that could be causing it. Start your PainSpot quiz.

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