Missed Diagnosis

My story of psoriatic arthritis was a mystery for many years. A connection was not made for many years. The arthritis I had was all contributed to osteoarthritis. The part that was and is still a little confusing is that I actually do have both. And for myself, it’s hard to know which one is affecting which part of my body.

Joint pain before skin symptoms

I am one of the few that had arthritis first then developed psoriasis many years later. So my psoriatic arthritis was running rampant for many years. My autoimmune disease process first reared up in my late twenties. I was diagnosed with fibromyalgia. About 7 years later I added Sjögren’s to that diagnosis. Then osteoarthritis. I developed severe spinal arthritis. I have had 5 back operations and I’m 58 years old now. I’m scheduled for my 6th spinal operation in June (an anterior discectomy, fusion and plating in my cervical spine).

Seeing a dermatologist

About 16 years ago my hands started peeling and getting really dry, cracking, bleeding, etc. My doctor treated it as dermatitis. When it never improved he sent me to a dermatologist and she diagnosed psoriasis and started me on medication. About a month into that treatment, while I was working, my thumb started to hurt intensely. It started to swell and continued to get worse throughout the day. I went to urgent care straight from work as the pain was excruciating by this time. My thumb had to be lanced and drained as I had developed an infection inside of it.

Psoriatic arthritis diagnosis

The doctor I saw immediately told me I had psoriatic arthritis. His wife also had it and he immediately recognized it in my hands. He sent a referral to be seen by a rheumatologist. That began my life with psoriatic arthritis. It had already done damage at this point since I was not treated correctly without a diagnosis for many years. I also developed osteoarthritis at an early age for unknown reasons. I was originally asked if I had ever been in an accident, been injured in sports, etc.... my answer was always no. So with arthritis of varying types, I have it in many joints. Adding in my fibromyalgia and Sjogrens, I’m pretty much a hot mess.

My symptoms with PsA

I’ve never had my psoriatic arthritis in remission. I’ve had it simmered down only to flare with a vengeance. I’m exhausted, tired, foggy, I hurt all over and my psoriasis has been persistently on my hands and feet. At times my feet hurt so bad I need a cane to walk. This makes exercising and just enjoying the outside hard. I have interludes where my feet though not gone improve some and in those moments I try to enjoy walks etc... Because of arthritis in my spine, previous fusion, etc. I have extreme back pain. I have a spinal cord stimulater implanted in my back to help with my pain. I also use narcotics and muscle relaxers as needed.

Going on disability with psoriatic arthritis

I had to stop working 7 years ago and go on disability. Life is definitely limited because of all this but being able to be on disability has definitely improved my quality of life. My story started when I was 27 years old and it is ongoing now at 58 years old. One thing I’ve learned is “you do it till you absolutely can’t anymore.” Every day you have to live your life the best you can. Every day you need to listen to your body and if it says enough then you have a down day and just rest. If you are hoping everyone that doesn’t have this will understand what your going through..... give that notion up. Most will never get it. Those closest to you will understand this disease but like I said so much of the joint part is unseen they don’t understand all the physical symptoms such as the pain, fatigue so many symptoms.

Finding the silver lining

You just have to live each day the best way you can. You have to put one foot in front of the other and keep on keeping on. I remind myself often that there are people far worse off than myself. People living with diseases, infirmities, conditions far worse. This encourages me to not give in and give up. I want to live my life to the fullest I am able. I thank God and ask him to give me grace and strength each day.

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