The Road to Diagnosis

“Hope is like a road in the country; there was never a road, but when many people walk on it, the road comes into existence.”
-Lin Yutang
green rice field

Photo by Johannes Plenio on

If you have an autoimmune diagnosis, there is a pretty good chance that, like me, your diagnosis story is long and winding like a country road, with just as many bumps and potholes. My symptoms began as early as my teens. Because of the nature of rheumatoid arthritis (RA), it is hard to say when my normal “growing pains” became not growing pains at all but signs of a waking autoimmune disease. My knees began to really bother me sometime in middle school. My wrists by age 19. Perhaps I had JRA all along. It is hard to say now. What I do know is, the signs were there for more than a decade before my diagnosis. That is over a decade of silent destruction, misdiagnosis, and probably worst of all, improper treatment plans. I cringe to think of the number of times I engaged in therapies that are absolute NO’s for anyone with RA. Had I known sooner, I would have done so many things differently.

It all began with pain and occasional swelling in my knees. As a growing teen with flat feet, who hated wearing appropriate shoes for flat footed folks, my doctor, my parents and I all agreed, it was probably just growth and flat feet. Now, mind you, I have not grown so much as a ½ inch since that time. But, at the time, the diagnosis seemed to fit. So I took ibuprofen, iced as needed, and learned to live with cranky knees.

Next came wrist pain. Like the knees, it came and went. Sometimes there was swelling visible. At 19, it became debilitating enough to interfere with work, so I went to the clinic to have it checked out. The Dr listened to my complaints of pain and swelling, somehow translated that to numbness and tingling, and diagnosed me with carpel tunnel syndrome. He recommended I not use computers as much. I laughed because 19 year old me spent next to no time on computers, but assumed it must be something else I was doing, likely at work, so I took the diagnosis, and did the prescribed physical therapy. I would go on to be misdiagnosed with carpel tunnel syndrome 4 separate times by 4 different physicians. In fact, it was the constant misdiagnosis of carpel tunnel that kept me pushing for the right answer in the end.

Within two years of that carpel tunnel diagnosis, I was diagnosed with rotator cuff tendinitis followed by tendinitis of the elbow. Both were attributed to my work as a cashier as was the flare up of my “carpel tunnel syndrome” that occurred at that time. More physical therapy chased with ice and ibuprofen. Braces for the wrists, which were now both troublesome.

Approximately three years later a bad step on the mudflats leads me to wrench my knee and lands me in the er. This is the first time a doctor sees the damage RA has been causing. Unfortunately, neither he nor my physician at the time saw what they were seeing. That ER docs comment haunts me. Hind sight being 20/20 and all, I know that was my first chance to know my body was attacking itself. The proof was right there in black and gray. As the ER doc informed me my knees looked like those of a “40 year old football player”. That made me wonder. That should have made my physician wonder as well, as I was a not so athletic 24 year old. My physician decided that the knee issues were due to the fact that I was overweight and had strained them in the field. He prescribed rx strength ibuprofen, recommended that I lose a few pounds and advised me to limit activities that put a lot of strain on the knees.

And so, life went on. I had periods with not much pain and swelling and periods where it would come back. Knowing my body got cranky, I just allowed it to be. It is crazy the amount of discomfort a person can have and tolerate when they think it’s just how it is. Eventually, the wrists flared up to the point that they could not be ignored. I went to the dr, he confirmed my earlier diagnosis, talked about surgery as a possible solution and sleeping in braces. The braces helped some, until they didn’t.

Fast forward a few years and several job changes. I’ve had a few more flare ups of “tendinitis”, another diagnosis of carpel tunnel, and my first 3 autoimmune diagnoses (Poly Cystic Ovarian Syndrome, Gestational Diabetes, and Hashimoto’s Syndrome). I’ve taken countless doses of ibuprofen and been in physical therapy several times, for various body parts. I take a job in animal care that is intended to be a stepping stone. It’s a step that will actually end my career. (Oh that hind sight can be so enlightening but also hard to swallow.) I go into the job fully aware that it is demanding and repetitive. “Knowing” I have carpel tunnel and will have to take care, I am sure I can push through, prove myself and make the move to research (and a less physically demanding job). I’m tough and hardworking. I have no doubt I can do this. How wrong I was.

The issues started pretty much immediately. My hands of course, were the first to complain, but I expected that and knew well how to treat those symptoms, so I ignored that and carried on. Soon other things began to join the chorus of pain. In the short 2 years between starting that job and receiving a proper diagnosis I would be seen and treated by 3 different doctors for practically every jointed part of my body. I would spend countless weeks in physical therapy for everything from my neck and shoulders to knees and feet. I would begin to see a chiropractor regularly to manage the symptoms of a physically demanding job. I would unknowingly, under the care of well meaning professionals, do everything someone with RA should not do. And the prize at the end? Disability.

It was during this time that I finally began to realize that something larger was happening in my body. The day I knew for sure was the day my primary physician diagnosed me with bilateral carpel tunnel syndrome and bilateral tarsal tunnel syndrome. It seemed both my wrists and ankles were having the same issues. And so I started asking questions. I asked my doctor if inflammation could cause that. I asked if there could be an underlying cause. Instead of the surgery he was recommending, I finally got the referral I’d needed. Three months and one little blood test later, I was diagnosed with Rheumatoid Arthritis. Unfortunately, damage had already been done and I was well on my way to disabling symptoms. Within 6 months I would have to leave my job. A year after that I would begin to accept that the temporary setback I saw RA as was not so temporary. It would take a lot longer to accept that I am disabled by it. As a matter of fact, I’m still working on that one.

One Comment on “The Road to Diagnosis

  1. Pingback: The Road To Disability – Tenacious ME

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