Ask The Advocate: Real PsA Diagnosis Stories
For those with psoriatic arthritis, the condition can change how you live your life every single day. This condition is the center of the wheel that outreaches to all different aspects of life: physical and mental health, family, friends, and career.
If you're looking for a community that understands, then look no further.
Advice from our advocates
Our amazing group of psoriatic arthritis advocates answered a few questions to share their experiences and tips with the community. In this “Ask the Advocate” article, we asked our advocates to share their personal diagnosis story and their journey to treatment.
Response from Leanne Donaldson
I'm always fascinated by the whole, "Hindsight is 20/20" thing, and especially so when it comes to my psoriatic arthritis. For many of us, there is a difference between the symptoms that ultimately led to diagnosis and all the symptoms that in hindsight, were signs along the way.
The actual symptoms that led to the eventual diagnosis were the traditional pains in my hands and feet, especially my feet on the bottom in the morning. It was like walking on glass those first 20-30 steps in the morning. However, the giant piece of the puzzle of my psoriatic arthritis diagnosis was hearing loss. No ENT could tell me why I suddenly developed pain and hearing loss in my ears.
Some of my psoriatic arthritis symptoms go even further back to high school when I was diagnosed with inflammatory asthma. Now in hindsight, it is pretty clear to me that was my initial PsA presentation with inflammation and tightness in the chest. I was a very active child and played many sports so any joint pain I had was always written off as "overdoing it on the field."
That is one of the many hurdles of psoriatic arthritis. Presentation of symptoms, symptom onset, and pretty much every part of this disease for each individual is so varied. It wasn't until I was an adult and been through two ENT's, my primary care doctor, and my second rheumatologist that my current doctor was able to pull all of the pieces together of my psoriatic arthritis puzzle.
One day, I looked at my fingernails and noticed my fingers were crooked. I called a rheumatologist immediately because I already was diagnosed with psoriasis.
Response from Elizabeth Medeiros
I was only a toddler when I developed juvenile psoriatic arthritis. My mother said my leg would turn in and drag when I was tired, and I was always very stiff. While my mum did try to find help for me, many doctors didn't take my case seriously because my symptoms were mild.
However, it got worse with age. At age eight, I was hospitalized due to a severe flare in my hips. Later, I developed psoriatic nails and pain and stiffness in my spine, too. After seeing multiple orthopedic specialists, I was diagnosed with JPsA by a pediatric rheumatologist.
It was such a relief to have answers for my pain. Finally, someone confirmed what I was experiencing wasn't all in my head or a cry for attention.
Response from Alisha B
I've been 90% covered with psoriasis since I was 7 years old! It came after a bad case of chickenpox. It triggered my immune system into havoc and my body has never been the same. When I was 15 I experienced pain in my right knee.
At the time I never attributed the pain to PsA, I just figured maybe I was moving too much or it was due to cold weather (which is brutal in Michigan.) In adulthood, my dermatologist suggested that my symptoms were PsA and to see a rheumatologist.
Response from Joel Nelson
I first experienced symptoms when I was 10 years old, a few months before my 11th birthday. I was out with my family for a day at the beach and on the way back to the car, I noticed that I was struggling to keep up with the pace of everyone else. My left hip was aching and it felt like I was wading through water with one leg. I mentioned it to my parents but none of us thought anything of it. Two weeks later, the pain had become a real problem.
It took two years for me to get a diagnosis of juvenile idiopathic arthritis. Many things were considered only to be ruled out. From growing pains to Osgood-Schlatter Disease.
I had some pretty horrific experiences during those two years. From being asked by a doctor if I was ‘putting it on for attention’ to being put in traction and hanging weights off my legs to try and fix the problem! My arthritis didn’t back then, nor ever has presented in blood tests. The physical signs of arthritis were there but no inflammatory markers in tests.
Shortly after the diagnosis, I was told I also had ankylosing spondylitis aged 14. This was difficult as for two years, doctors had told me I would ‘grow out of it by 18’. Psoriatic arthritis came later in my early 20’s but looking back it was always there. I had a number of rashes through my teenage years that I was too embarrassed to tell anyone about.
When I went to my local doctor, I was told it was thrush and prescribed creams to treat a fungus, which made it much worse. Years later a rheumatologist told me it would have been psoriasis all along.
Ask The Advocate Series
This is a journey that many psoriatic arthritis patients follow, taking their conditions and their understanding of them into their own hands.
We are so grateful to have this particular group of advocates on Psoriatic-arthritis.com and build this community of shared understanding, support, and knowledge together. For more patient and advocate insight, we encourage you to check out our entire Ask The Advocate series.
- Ask The Advocate: The Importance of Psoriatic Advocacy
- Ask The Advocate: How PsA Impacts Daily Life
- Ask The Advocate: Psoriatic Treatment Experiences
- Ask The Advocate: Coping With Psoriatic Pain
- Ask The Advocate: Advice For The Newly Diagnosed
Where to learn more psoriatic diagnosis stories
Learning more is as easy as signing up for our email list. Our collective voices have a huge impact, and we hope you will add your unique voice. The best part? Your journey living with psoriatic disease is all you need to get started!
Do you have a sleep disorder (eg. insomnia, sleep apnea, RLS) in addition to your PsA?