Get under your weighted blanket and grab a cozy drink. My chronic pain story is a long one! And yes, I’m about to get spicy…

Travel back in time with me to about 2010 when my spine twisted so severely that it pulled my left rib out. The cause? Scoliosis and Kyphosis… and trying to do too many sit-ups, if I’m being honest (har har). I’ve been dealing with back pain ever since.

Somewhere along the way, the pain became my daily companion, and eventually reached chronic levels. Then in October of 2019 I was hit by a car while crossing a city street and landed on my back. To this day I have residual injuries from that traumatic event.

After the rib incident, I sought treatment for my back pain from my doctor. My well-meaning chiropractor at the time told me that if I didn’t seek treatment, I would likely have trouble walking by the time I was 30. My doctor instructed me to write directly to my healthcare provider. I spent hours composing a detailed letter, pleading to receive treatment. But still I was denied care because my condition was “not severe enough” and was “life long.” Ultimately because my condition couldn’t be “fixed”, my healthcare provider refused to invest in helping me feel better because it would cost them too much money in the long-run. Huzzah, Capitalism rears its ugly head!

When my back pain worsened around 2017, I brought my mom with me as moral support to my doctor’s appointment and demanded I receive care for my back. My (new) doctor acted confused that I had been denied care in the past and I finally began a life-changing journey of consistent Physical Therapy that has made a world of difference.

“But Kaïa,” you ask, “isn’t this blog about AuDHD, not chronic pain?” Well, yes. But the two are linked. And boy, what a relief it was to learn that! Let me tell you why…

A particular doctor’s appointment will forever stick out in my mind because for years the information my doctor gave me puzzled me. After another round of spine x-rays, my doctor remarked, “Looking at your x-rays I see no reason why you should be experiencing such a high level of pain. The degree of your spine’s curvature is so small that patients like you typically experience no pain.” She wasn’t denying my spine was abnormal, or trying to dismiss my pain, she was merely making an observation. But it led me for years to wonder why if my scoliosis and kyphosis were both mild, they were causing me chronic pain?

It wasn’t until I received my AuDHD diagnosis that I uncovered the answer. As neurodivergents we possess a hyper-sensitive nervous system. We’re also prone to hyper-mobility. As a result people who are neurodivergent are more likely to also deal with chronic pain.

I’ve been dealing with my back pain for roughly 13 years now. I’ve put in a lot of determination, commitment, time, energy and yes tears to get where I am today. It’s been an exhausting journey that has tested me. I’d like to say that I’ve done the hard work so now I feel all better. “Ok, bye guys, this blog post is all done!” But it’s not that simple.

Is my body stronger? Yes. Is my back straighter? Hell, yes! Is my body more resilient? Most of the time. But for every bit of progress I make, another year passes, my body inevitably gets older, and the pain grows a little more. So my progress is more akin to keeping pace with my changing body, and slowing the degradation of my condition.

And that’s where I’m at today in my chronic pain story.

I want to share the treatments, mindsets, strategies, and tools I’ve implemented (and accumulated) in my 13 year journey. These are the things that have worked for me and it is my hope that they’ll work for someone else too.

If you’re dealing with chronic pain or caring for someone who is, know that I see you, and I want to help you. No one should have to carry the burden of chronic pain alone. It’s already a heavy enough burden for one person.

I’ll be honest though, I’ve been reluctant to write a post like this, even though it continues to be a topic I want to write about. Please remember, I am not a doctor, and this is not medical advice. We are all unique, and what works for me might not work for you.

5 Treatments I Actively Pursue:

  1. Chiropractor: Cupping, Taping, E-Stim, Graston.
  2. Physical Therapy
  3. Pain Therapy
  4. Acupuncture
  5. Regular talk therapy

5 Mindset Shifts I’ve Made:

  1. People are probably going to gaslight you whether they mean to or not. Try not to let it discourage you in your pursuit of treatment.
  2. Our minds are powerful tools! Addressing mental health issues is important in decreasing your pain levels. When we are joyful, our bodies stop paying as much attention to pain, and our pain decreases!
  3. Know that you are an imperfect human (we all are) and you can only do so much. Some days I may not have the physical or mental energy to complete all of my PT exercises, and that’s ok. I am an imperfect human doing my best! As my friends at Center For Body Trust say, “Aim for a C-” and whenever you can reach for that A+, great!
  4. Be respectful of and gentle with your body.
  5. Recognize that there are activities you can no longer do comfortably. I used to love running and jog around my neighborhood. But my body can no longer support this activity.

21 Strategies & Tools I Implement:

  1. I don’t know what I would do without my foam roller. It’s the most powerful tool in my arsenal and I have even shoved it into my suitcase on occasion when I travel.
  2. Don’t be afraid to ask someone you trust to help you self-advocate for the care you need!
  3. You can switch doctors if your needs are being ignored. I switched doctors when I was originally denied care, and found one who (shocker!) actually provides me with care.
  4. Motion is lotion! Exercise often (but within reason) to strengthen the muscles that specifically support where your pain lurks. A huge part of my journey to less pain has been building muscles all over my back to support areas where my spine makes my body work too hard.
  5. Drink lots of water. Did you know that when you’re dehydrated your pain levels increase?
  6. Use the spoonful of sugar strategy to help you get through less appealing tasks. But remember, to be kind to yourself and rest if you’re in too much pain to take on that task today!
  7. Delegate painful tasks to others. My partner has kindly taken on cleaning chores that are now too tasking for my body.
  8. Be ready for anything! Did your shoulder suddenly start throbbing yesterday and it still hasn’t stopped? Adjust your physical therapy plan to focus on exercises and stretches that target your shoulder.
  9. On that note, exercise the pain out! It blew my mind when I learned that gently exercising a troubled muscle usually makes it feel better because using the muscle forces it to release tension.
  10. Go on a gentle calming walk. Go breathe in that tree air!
  11. You can eat ginger to soothe nausea and take a magnesium supplement to ease pain.
  12. Biofreeze is your friend! Other icey/hot balms like Tiger Balm and Bengay are good too!
  13. Having a massage gun and/or a hand-held (plug-in) back massager around for emergencies can eliminate a lot of pain!
  14. I keep a TENS unit around for days when my pain is high. A TENS unit is like a portable, at home E-STIM machine that you wear under your clothes. I actually wore mine to a wedding, under my bridesmaid dress because I knew I would be standing all day (something that is really challenging for my body).
  15. Distract yourself from the pain. In too much pain to leave your house comfortably? Call or video chat with a friend or family member to seek emotional support and distract yourself from your pain. No energy for socializing? Watch a TV show or movie, or listen to a podcast or favorite playlist to distract yourself. Music is especially healing for me and I have a specific playlist for each of my different moods.
  16. Socialize in-person too! Feeling connected to other humans and fostering good mental health is an important step in reducing your pain.
  17. Snuggling with a pet is also considered medicine in my book! Growing up, my parents always referred to our cats as “nurse kitties” whenever someone was sick.
  18. Take a hot shower to calm your angry body.
  19. Drink tea. It’s like a warm shower for your insides? No. Just me? Ok.
  20. Something I’m trying to be better about is meditating more regularly. My ADHD hates meditating though, whereas my Autism loves it. I use the insight timer app (because it’s FREE). But the Calm app is good too!
  21. I sleep in a nest of pillows. I don’t know how else to describe this… But I have a pillow for each arm to rest on when I lay on my side, and a pillow that goes between my knees. I joke that it’s my “princess and the pea” situation.

It can take years to finally successfully manage chronic pain. I’m not sure my pain levels today (though still a constant companion) would be considered “chronic”. So rest assured, the effort is well worth it, and yes, you too will get there someday.

I believe in you!