A Years-long Journey to Find Answers and Relief
Last updated: February 2022
My PsA story isn't unusual. I started feeling pain and dismissed it as just having done too much. But then the pain continued for days. Then weeks. Then months. But was it really all that sudden? Did I just suddenly start having pain in my 30's? Were there symptoms I'd missed? How long had I truly had this disease without knowing it?
Looking back on my health history
There's actually no answer to that question. I suspect it started when I was a teenager, but some symptoms could also have been my comorbidities, especially dysautonomia. I remember never being able to run the mile during gym class because my knee would hurt. As a teenager, knee pain isn't supposed to keep you from doing things.
In my 20s, I had back pain that would cause me 2-3 days of bed rest. I was caring for my son, so getting a full day of rest, even when his father was home and could have helped me, was impossible. Then there was trying to work.
The impact of chronic pain on work
I recently looked over my job history. It spans 21 years. In those 21 years, there were so many gaps in employment that I never made enough to actually make a living. I realized that I'd lost a lot of those jobs due to various flares of different issues, things I later found out were symptoms of PsA.
My doctors dismissed my pain
It wasn't until just before I turned 30 that things got bad enough for me to question what was wrong with me. But it was dismissed by my doctor as being weight-related. At 410 lbs, I had to agree with her. I started trying to lose weight. I was fairly successful. In September 2014, I started to lose weight. By January 2016, I had lost 32 lbs. It wasn't a huge amount, but at 378 lbs I felt like I could at least see myself getting to a weight that would stop my pain.
Life after my separation
Then my separation happened. I left an abusive husband and found myself suddenly homeless. I made sure my son had a safe and stable home and moved into a share house. The depression and anxiety of the next 3 months meant I couldn't eat. I lived off protein shakes. I lost 40 lbs. But even at 338 lbs, I still was in pain.
I had no car, so I walked and took public transit everywhere. That meant trying to do all of my errands in one day so that I could spend the next few days recovering. I told myself that it was still because of my weight. But I saw my ex-husband doing the same thing as me. And at 500+ lbs, he definitely had more weight to contend with. Yet he was doing them just fine and didn't need to rest. At the end of 2016, I was able to move home, after my mom kicked out her abusive boyfriend.
Then psoriasis appeared
It wasn't until 2017 that I realized my pain wasn't getting better, but worse each year. I went to a new doctor, and like so many others, he told me it was just my weight. He sent me for blood work and said it was all normal. In 2018, I lost my mom. Soon after my body seemed to go into overdrive. I had pain everywhere and it was getting worse.
I suspected fibromyalgia was the cause, until in December 2018 when my skin suddenly started itching at patches of psoriasis started showing up. I didn't know what it was at first, but I realized soon that it was spreading. I had previously had a rash both in my groin and under my breasts. I thought it was just a heat rash or a fungus. But as my psoriasis spread, I started to research more. I found out that the rashes were a form of psoriasis. It was at that point that everything made sense.
I started trying to get an official diagnosis of psoriatic arthritis in 2019. I met my husband at the end of the year and he encouraged me to keep pursuing it. Then covid hit. My doctor's office was closed for months, before finally starting a virtual appointment. But again, my pleas for them to diagnose me or at least send me for testing were ignored.
Finally, a psoriatic arthritis diagnosis
In late 2020 into early 2021, my psoriasis went into overdrive. The only areas of my body without scales or rashes were my head and upper back. I got an appointment with a dermatologist who, through a virtual appointment, diagnosed me with dermatitis. After months of treatment with her failing, I was able to see my primary again. I showed her my psoriasis and begged her to send me for blood work and x-rays. It was this that finally got her to refer me to a rheumatologist. I was officially diagnosed with PsA in July 2021. They immediately started me on prednisone and soon after folic acid and methotrexate. Then they got approval for my biologic.
I've now been on my biologic for 5 months. My skin is mostly clear, though I'll get a few small scales popping up sometimes. Unfortunately, it hasn't stopped my pain. The only pain med I take is Naproxen. I take it daily. I no longer work and have been waiting on disability approval. I have a hearing in May, which should yield an approval, as the judge on my case is very sympathetic. My husband helps me with daily tasks that I find difficult or impossible to do on my own. I've gained back all of my weight, plus more, thanks to a combo of steroids, stress, and the inability to exercise on a regular basis.
Social and community support makes a difference
Through all of this, I felt very alone. It wasn't until I found this community after my diagnosis that I felt fully seen. My husband and my best friend are the only people close to me that fully understand what I go through, but they could only sympathize because they don't experience my actual symptoms. This community and all of your stories have inspired me to share mine.
If you've made it to the end, thank you. I know this was a long story. I hope it gives someone who is still waiting on a diagnosis hope that one day they will get it. I also hope it helps others who are still struggling with coming to terms with their diagnosis to know that we're in this together and we can lean on each other when things get rough.
Do you usually need to recover from a vacation?