We all know having CF is hard, for many different reasons. Physically, one of the most difficult aspects of having CF for me is joint pain.

It’s been more difficult than the two major back surgeries I had and even more intense the time I had to have the hole for me feeding tube reopened with no anesthetic, nothing to numb the area, and nothing for the pain. But that’s a story for another day, a rather interesting and wild one!

Back to the joint pain. Here’s what I know. CF related arthritis (or CFRA as I’ll refer to it in the rest of this post) is rare. I’ve been told it’s even more rare to have it as bad as I do. Overachiever over here, ha! We don’t have a lot of research around CFRA. 

And the little research we do have is old and outdated. We don’t know a whole lot about why it happens and we don’t have a lot of great treatment options. It’s an inflammatory type of arthritis, which means it won’t destroy the bones or joints of those affected, which is like the one good thing.

My story with CFRA starts when I was 16. I was getting ready for my first back surgery (for scoliosis) and needed to stop taking the ibuprofen I was prescribed, way back when, because it can thin the blood which isn’t ideal when you need surgery. This was a treatment back in the day, or maybe it still is and I’m unaware, to help with the inflammation in our lungs, or that was the hope.

Shortly after stopping the ibuprofen I woke up  one morning in an incredible amount of pain. Every joint in my body was inflamed, stiff, and oh, the pain! To be honest, I was pretty terrified as I’ve never experienced anything like that in my life. I don’t recall if CF arthritis was mentioned at this time, but I was told to keep taking the ibuprofen once I was cleared after surgery. I remember someone also mentioning it could have been a reaction to abruptly stopping the ibuprofen.

Once that flare ended though I really didn’t have much joint pain. And when I did it was pretty minimal and usually just in my hands. At eighteen when I transitioned to the adult CF clinic is when I first recall hearing of CF arthritis. They did bloodwork and x-rays to rule anything else out. I eventually stopped taking the ibuprofen, with the support of my CF team, after learning how horrible it can be for your stomach. And still, the joint pain was pretty minimal.

Fast forward to three years ago when I started experiencing intense, incredibly painful, and more frequent joint pain. It was our first winter since we’d moved back to Utah. I thought it was my body acclimating, which was much more difficult for me with all my health issues.

But the joint pain came back with a vengeance the next winter. And this winter has been even worse. In fact, this past year has been the worst. The flares come more often, last longer, and can be much more intense and painful. These flares don’t just stick to the winter season anymore either, though they are definitely more intense in the colder months.

The pain is in all my joints, from my jaw to my toes. It gets bad enough I can’t get in or out of  bed, dressed or undressed, or do many seemingly easy tasks, that we all take for granted, without the help of my husband.

I’ve had to learn to rely on my husband, and family, more and more. And as someone who is fiercely independent, it hasn’t been easy. I haven’t been able to hike as often as I’d like. I’ve been wanting to try snowshoeing since we moved back to Utah, but it hasn’t been possible. 

I haven’t even been able to really do yoga for almost a year, which has been heartbreaking. And the few times I’ve tried, a flare hit me the next day.

The past couple of months I’ve had to purchase a shower chair which brought feeling of defeat and anger, even though it turned out to be the best thing. I also just had to apply for a permanent disability parking pass. Something I thought was years down the road and would happen because my lungs were no longer working as well.

Just last week I experienced pain from a flare that far surpassed my already very high level for pain tolerance.

Treatments for joint pain come with side effects, just like treatment for most anything, but some of these side effects include a suppressed immune system ( I don’t have to tell you all why this is less than ideal) and can also thin blood which is very real concern as I’ve had some issues with hemoptysis this past year. I’ve tried all sorts of prescribed pills, creams, and salves, all the over the counter options, supplements, dietary changes, and so far nothing has helped.

The pain is horrible and intense. There really are no words. But it’s also been mentally defeating. I’ve been depressed at times and have also felt like all hope was lost.

I feel like I’ve lost a big part of my independence. I can’t do some of the things I love so much, or can’t do them as often. It’s even affected my work as a nutritional therapist, which isn’t ideal when you're a solo entrepreneur.

CF is hard. All of it. Life with any chronic illness is hard. For me it’s also been a reminder to hold on to hope and to find the joy in each day. Some days that’s easier than others, but I always try, because it helps me get through some of the more difficult times.

 Therapy helps too, by the way. Big advocate for therapy, because mental health is just as important as physical health.

I’ve also learned that this pain doesn’t make me any less of a person. Needing help doesn’t make me any less of a person either.

As hard as this has been, I’m now in space where I can be thankful for all the things my body CAN do, big or small. I’ve learned it’s okay to ask for help and rely on others. I’ve gotten really creative with finding new ways to do things. I’ve learned to really truly appreciate the small things. There are also a lot of things I don’t take for granted anymore, like being able to stand up without assistance. I was able to share my story, via pre-recorded videos, at this years North American Cystic Fibrosis Conference, hopefully encouraging researchers and making CF teams more aware. By sharing my story I’ve also unintentionally been able to help others with joint pain learn that CFRA is actually a thing. So many have reached out saying they had no clue their joint pain was due to CF so they never mentioned it to their teams. I’ve become more patient (and could get even better at this) and understanding of others.

If you’re struggling too, please know you aren’t alone. And please make sure you are taking care of your mental health along with your physical health!

 

Help Others Live STRONGER and LONGER- 

   

   

 

Aimee Lecointre is 33 years old with CF and is currently living in Salt Lake City, UT. She is a certified Nutritional Therapy Practitioner and registered yoga teacher. She is passionate about helping the CF community through movement and nutrition. In her free time you can find her hiking the beautiful mountains in UT, creating in the kitchen, doing yoga, skateboarding, writing, or reading! She’s a  yoga teacher with CF Yogi, a virtual yoga studio for people with CF. You can visit her website at www.thenourishedbreath.com, follow her on Facebook at The Nourished Breath or find her on Instagram @thenourishedbreath

 

 

 

 

***Views expressed in the CFLF Blog are those of the bloggers themselves and not necessarily of the Cystic Fibrosis Lifestyle Foundation*** 

***Please speak with your physician before making any changes to your CF management***

 

To receive an e-mail notification and link to the new CFLF blog post each week please e-mail erin@cflf.org to be added to our list.