My name is Alex and I have psoriatic arthritis.
So many of you know me for various reasons, but by now the awareness of my migraines and how they’ve dramatically changed my life tends to be centered. My migraine journey is something that has evolved over time as my migraines have gotten worse. It’s hard to pinpoint it totally and say they developed when I was a teenager, because there were a few childhood migraine symptoms.
For what it’s worth, I’ll allow migraine to exist as a chronic condition that I developed. However, something else has lived in the background perhaps much longer than migraine.
In July of 2018 I wrote about my longstanding relationship with being the kid that was a klutz. (You can read it here, but I will repeat much of the information.)
I fell off a lot of things as a kid. Monkey bars. High school stages. Balance beams. I even tumbled down a few hills unintentionally. Sprained ankles were such a regular occurrence that they’d often get iced for a bit and ignored as the swelling would slowly go down.
I remember getting these odd little dry patches occasionally on my arms or legs.
As I ventured into middle school the klutziness continued, although the injuries weren’t always as clear. Sure, slamming my toe into a stool resulting in a broken bone made sense, but simply over-exerting my wrist causing the need for a hand brace that kept me out of my 7th grade keyboarding class, didn’t really add up.
When I injured a portion of my back at the start of my freshman year, I’d assumed I’d been carrying my backpack wrong and it was muscle strain.
Then my knee injury happened. My friend Zach had been goofing off when his backpack fell onto the center of my kneecap. My knee swelled up and I was in unbearable pain for months. I’ve had a lot of resentment for Zach since then because that incident set me up for a downward spiral of constant rehabilitation. Sorry Zach.
I saw a sports doctor at the time and had my first round of physical therapy. I would spend the next 3 years having every test done searching for any sign of damage that would explain the swelling and the pain. I had 2 more rounds of physical therapy. I had horrible steroid shots plunged into my knee. This process is likely to blame for the minor scoliosis I have in my back since over those 3 years I completely altered the way I walked.
No test or therapist ever had an answer for me, even some of the top specialists in the country drew a blank and told me that I likely would find relief when my growth plates were fully formed.
That was 2012. Every other week since then I have actively been managing a knee that swells up and down and aches from time to time. What if just one of those doctors or one of those therapists looked instead at the inflammation? Would the psoriatic arthritis have been diagnosed eight years ago?
Or perhaps in 2018, when I was wrapping my head around my weird body quirks.
I had seen a chiropractor – and although his treatment was reckless – his x-rays showed deterioration in the vertebrae in my neck. I took that information to my primary care doctor at the time who brushed off the x-rays and set me up to do physical therapy for my neck. Because my neck did hurt, and it was incredibly stiff despite my weekly massage therapy.
The physical therapist who worked on my neck had loads of observations regarding the pain in my neck, but also the distinct weakness of my left arm. At this point, my carpal tunnel had been aggravating me as well. The neck therapy did nothing to reduce the stiffness and pain I was experiencing.
The neck pain must have been connected to migraine, there was no other plausible explanation. Or could I have been diagnosed with psoriatic arthritis then with more careful consideration from my primary care doctor?
It wasn’t until something went very wrong this February that the puzzle pieces began to fall into place.
Interwoven with trying to rule out other causes for migraine symptoms over the last two years are all the hints that something totally separate was happening. The abdominal pain. The joint pain. The rib pain. The neck pain. My still swollen knee. The little scabs on my nose and in my ears.
I was undiagnosed the entire time and didn’t know it. The pieces were all there but the picture on the outside of the puzzle box was missing so they lived in an unmarked bucket.
Until a sharp pain woke me up sending an electric shock through my hand one night in February.
And shortly after, the hand swelled up and I couldn’t open it all the way:
A few weeks later, my Neurologist investigated my complaint, ordered x-rays and my path towards diagnosis became more direct.
The initial x-ray showed no signs of damage to the suspected pointer finger joint, but he referred me for additional follow up to a Rheumatologist.
Six months, 16 additional x-rays, 5 different blood panels, and one incredibly thorough doctor later and I received a diagnosis.
I sat in her office not knowing what to expect in my intake appointment. My blood work had shown inflammation markers, although the specific auto-immune panels were all negative. It was the first time I was receiving specialty care because my blood work wasn’t normal.
This Rheumatologist had a body shaped bubble diagram in addition to the ~10 pages of intake paperwork and more questions and inquiries than I’ve ever been faced with. We went over my primary concern of my hand, but also the lengthy history of other joint pain areas. We went over family history.
As she did a physical exam on each joint, questions continued. The place where my muscles connect to the bone on my elbows and shoulder that my massage therapist had regularly worked to loosen up were identified as areas of pain. The Sacroiliac joint on the right side of my back that I regularly bruise in my own attempt to loosen up was identified as an area of pain. My neck, and specifically where my neck meets my shoulders was identified as two points of pain.
These areas that I’ve spent countless therapy sessions trying to “loosen” or work out the “knots” are actually better communicated as places that are painful and bothersome. These are not, as many people describe, simply points where our bodies hold internal tensions.
She could feel inflammation in my ankles and my knee and could see puffiness in my fingers and hands that to me had always just been how my hands looked. Inflammation was also present in areas where pain was not.
She validated the fact that yes, my neck muscles can in fact predict the weather, because in her clinical experience this is normal for people who have arthritis.
My body shaped bubble diagram was quite filled in with notes scribbled all over.
Which brings us to diagnosis. Although we have one more rheumatoid factor to test, the presentation of my joint pain not being even on both sides, presenting along my spine (neck + SI joint + weird spot on back), and the identification of the scabs in my ear actually being psoriasis she settled on psoriatic arthritis. The final rheumatoid factor test will officially rule in or out rheumatoid arthritis.
For context, RA is often a symmetrical condition – if one wrist is affected so is the other.
Being an autoimmune disorder, this means that treatment must address the immune system. My doctor explained that with conditions like this, her main goal isn’t to address my pain but to suppress the disease to ensure that five years from now my joints haven’t broken down. This is a good goal in my opinion as the pain is annoying, but I want functioning hands for the rest of my life, not lower pain today.
And so, this weekend I started on a low dose of Leflunomide, an immunosuppressant designed to reduce my immune system’s response in a way that reduces the presence of inflammation, in turn reducing the impact and damage to my joints.
This is both exciting because there’s a treatment that can help me, but terrifying that in choosing to best manage my health I opt for a weaker immune system during a deadly pandemic… putting me front and center as a High Risk individual.
I feel like a puzzle that has finally been put together. But, I didn’t think diagnosis would be so full of grief.
I don’t know what this means as it relates to migraine or that disease. My initial understanding is that these are two very different conditions that come down from two different sides of my family. However, in understanding the role inflammation plays in migraine perhaps reducing the inflammation for this will be beneficial all around.
So today, we both meet my new friend, psoriatic arthritis, even though this friend has likely been along for the ride the whole time, it’s nice to finally meet you.
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