Pain & PKD: The Invisible Truth

This week (November 6-12, 2022) in Canada it's National Pain Awareness Week (NPAW)--a time to raise awareness of chronic pain and the impact it has on the 1-in-5 Canadians who live with it.

If you (or someone you love) has Polycystic Kidney Disease (PKD), chances are you're familiar with the concept of chronic pain.

Let's talk about it!

The interesting thing about Polycystic Kidney Disease is that it manifests in different ways for different people and "pain" isn't so clearly defined. There are really obvious challenges that come at the later stages of the disease (dialysis, transplant) but patients also have a lot to contend with in the healthier years leading up to this.

There may be discomfort, a feeling of nagging fullness, sharp pains, aching pains, cramping, and so on. The toughest part? These sensations can't always be confirmed or explained, leaving PKD patients feeling lost & confused.

I've personally gone through a rollercoaster this year when it comes to physical pain manifestations, so I know how tough it can be to manage.

To be clear, I do not feel pain every single day, but it rears its ugly head often.

I'm currently in Stage 2, with large kidneys that are full of marble-sized cysts. My kidneys take up a lot of space in my abdomen which leads to a whole slew of complications for me on a regular basis. I have learned to live with this reality and I still go about my day with a smile on my face, but it's not easy.

On top of this, I'm getting to the age/stage where new, acute pain is showing up.

In the Spring, while out for a run, I had my first kidney cyst rupture and ended up in the hospital. That pain was more intense than anything I'd ever experienced (other than labour) and to make things worse, I had chronic swelling, pain & discomfort for the next 8 weeks (ugh!!)

My mental health really took a blow and I spent months trying to get back to "normal." The trouble was that even after this event, when everything looked "fine," I was still hurting.

So, if you feel like your pain isn't well understood, let me tell you, I get it!

Here are some of the other types/instances of chronic pain I often experience as someone with PKD (maybe you can relate!)

• GI/gas pain in the morning, especially if I've accidentally slept on my stomach and everything got squished (this is a combination of trapped gas + pressure on the kidneys)

• an aching feeling after I've warn high-rise jeans for too long, putting pressure on my abdomen

• an aching feeling after a long drive, sitting with a seat belt on for hours

• an aching feeling after exercise, especially if I twist or bend to the side

• nagging pain when I'm sick or dehydrated

• discomfort in/around my liver

• a feeling of general abdominal fullness that ruins my appetite

• I have to add mental "pain" here as well because anxiety & depression go hand-in-hand with chronic disease and it deserves acknowledgement

I'm often told that my symptoms are just because of the sheer size of my kidneys. Regardless of the reason, I get the sense that PKD pain is not well understood.

So, I want to shed light on the truth by speaking about the everyday challenges that aren't often discussed by medical professionals. As a community, we need to speak up about our experiences to help better inform the future of our care and to empower those around us.

My sincere hope today is that by reading this, you feel comfort in knowing you're not alone. I wish I had a magic wand to wave here, but instead, I can offer words of encouragement & validation.

I hear you.

I feel your pain.

You're not alone.

Stay tuned for some tips & tricks for managing chronic PKD pain with healthy lifestyle changes.

XOXO

Ciara Morin

Registered Holistic Nutritionist (RHN), real food advocate, PKD warrior & advocate