A Diagnosis In Progress
"Why does it always look like I have been kneeling?" A question I asked myself every single time I have looked in the mirror since childhood. Of course, as a child, there was an explanation. In 3rd grade, I developed rashes in my scalp and all over my body. I was diagnosed with psoriasis in my scalp and Neuro-Dermatitis. A course of prednisone, and a promise that I would never have a problem again from a multitude of dermatologists led us to naturopaths, homeopaths and just plain complacency. Mostly, I just had to deal.
My journey to a psoriatic arthritis diagnosis
In my later 20's I finally figured out with an allergist that some of my problems were from allergies. Then I got a great dermatologist who said I had Psoriasis, Sebbhorrea and Eczema.
Blood work showing a high rheumatoid factor
After having my son at 35, I was at work, I am a teacher, and a co-worker said "what happened to your elbow?" I had no idea what they were talking about. I looked and had a bruise the size of my hand on and around my elbow. It didn't hurt at all. It went away. I ignored it until it happened again. I went to my doctor who suggested it was a reaction to Advil. I insisted on blood work. My Rheumatoid Factor came back through the roof.
I went for my first Rheumy appointment. I had very little to no other issues. So I was dismissed and told I may develop something in the future. Who knows???
Finding a new rheumatologist
I started to focus on diet and tried to learn what I could about Rheumatoid arthritis. Then I had these odd lump pop up on my right-hand knuckles. I went back to my dermatologist who said I likely had Dermatomyositis. I asked who HE recommended as a Rheumatologist. I was aware that he had an auto-immune disease and maybe could suggest a good one. So he sent me to a veteran Rheumatologist! This doctor and I went through all the symptoms and aches and pains and issues. He said it was likely not Dermatomyositis because it was asymmetrical. I was dismissed after a big course of blood work all of which came back normal except for the RF.
Finding an allergist
I found an allergist! A great one! Found out that I also have PRESSURE-UTICARIA which is basically hives that pop up when pressure is applied. What a Godsend that was! Anti-histamines added to the routine of medications. Now with BP medication, cholesterol medication, Cymbalta, and asthma medication, what was the big deal to add one more.
Emotionally drained while dealing with a flare
The pandemic hit, and let's face it, for teachers it was toxic. I have never felt so emotionally toxic in all my life. Between trying to work with my son on his homeschooling, being in meetings constantly, and preparing work for my 200 music students, grading it, being available for their and their parent's questions, I was doing my best under duress. I started to get trigger finger and psoriasis broke out badly on my right knuckles. The knuckles started to swell. And the fatigue was debilitating. I have had fatigue for years, but this was so difficult.
Finally a psoriatic arthritis diagnosis
I went back to the doctor and was sent back to my rheumatologist. Psoriatic Arthritis was the diagnosis. Finally, a diagnosis. But still I have so many questions. Why do I have this high RF? It is 79 when normal is under 18. I also developed a tremor and went to a neurologist for that as well.
Searching for ways to manage symptoms
I am 43 years young. I am healthy but fall into the obese BMI despite others saying there is no way I do because I am an average size. I am now trying hard to follow the Wahls Protocol and find the best thing about 9 cups of vegetables a day is how full I am and how the fatigue is really under control. I do not enjoy eating meat and am struggling with that a bit. I prefer a vegan diet. But I do notice that grains inflame my issues.
I feel like my story is FAR from over. I feel like there is more to come. More info. More healing. More discovery.
Day to day I don't know if my sore neck is from sleeping poorly or from arthritis. My sore back, from the fibroid on my uterus or from arthritis? And at my age and with my level of resilience, doctors are apt to say let's just monitor. I am grateful for this as well. I do not want to trade one issue for another. But at the same time, I want to be on top of the right issue.
A wish for more psoriatic arthritis awareness
We are pioneers in a way. I certainly feel that way with my skin issues. Chronic problems with no answers. And the best person to research and advocate is myself. It just feel very lonely. And I wish our care model was more holistic, to listen to the patient and connect the dots, in the medical community.
I am so glad to have found this community and hope we can all grow in knowledge together.
Do you have a sleep disorder (eg. insomnia, sleep apnea, RLS) in addition to your PsA?