I would like to take an opportunity to share my own health journey with you all. Also, I would like to highlight how long it takes to get a proper diagnosis of autoimmune diseases when you don’t fit the average mold. I am 35 years old, and I have multiple autoimmune diseases. My journey wasn’t typical of most, as it took many years to receive the correct diagnosis for my many ailments. It all began when I was nineteen years old, I had contracted a rare eye condition called iritis (inflammation of the iris, the colored part of the eye). That cleared up and all was well, after a visit to a local ophthalmologist. Until a year later when it came back again in the right eye, then the left. Again, it was treated, and all was well, it healed just as it was supposed to. Then a few years later it came back in my right eye and was a little harder to go away, but the ophthalmologist was persistent and finally it healed.
The doctor mentioned something to me that I found rather odd, he said, “I think you may have rheumatoid arthritis (A chronic inflammatory disorder affecting many joints).” I was twenty-one or maybe twenty-two, my first thought was are you crazy. I had trouble with my knee popping out of socket and some low back pain occasionally, but I’m not old, I thought. I never gave it another thought, I assumed he was a bit off to think someone my age could have arthritis. I had several more bouts with this condition over the years off and on, but any time he brought up rheumatoid arthritis I just passed it off.
Fast forward to 2013, I was twenty-eight at the time and as I had mentioned before I had trouble with my lower back. I never received a true diagnosis of what it was, but it started to get worse than ever. Also, my hands and finger joints begun to ache and swell, but it wasn’t until the following year it really began to take a toll on me. I had just finished a job as a waitress, and my eye condition flared again. It was back with a vengeance. It took a long time for it to heal. When my ophthalmologist suggested again, I might have rheumatoid arthritis I told him I thought he was right.
I began to research what rheumatoid arthritis was and my symptoms fit. My primary doctor checked my rheumatoid factor, but it was negative, they suggested I might have fibromyalgia (Widespread muscle pain and tenderness). In my mind that meant it wasn’t anything serious, because I had no idea what fibromyalgia really was, so I went on for a few more years like this. Struggling sometimes to complete even basic tasks like wash my own hair, and needing help dressing when I couldn’t use my hands properly.
After some time, I received a reprieve from my symptoms and decided to go back to school. Not long after I started school my body began waging war. I had a couple episodes where I couldn’t lift my shoulder over my head, my eye flared up again several times, and I got pleurisy (inflammation of the tissues that surround the lungs) it was so painful to breathe.
When school was over, I landed my dream job. Just before I began my job my eye flared up, this time it was keratitis, (inflammation of the clear tissue on the front of the eye (the cornea). Are you starting to notice a pattern with inflammation? Yeah me too!
Once I started working, my body became severely stiff, even when I sat for short periods of time; you can imagine how hard it was to get out of bed. I also had to deal with my feet joints being extremely tender when I first stepped on them in the morning, and sometimes lasted for several hours.
Of course, my eyes continued to decline. The iritis came back again, along with some sight loss. The ophthalmologist couldn’t figure out what was causing the sight loss, he was however, able to figure out that I had severe chronic dry eye. We began treating it with drops which helped, but my eyesight remained where it was. So, I was sent to see a specialist at a major university, and they couldn’t figure out what was causing the sight loss either, other than saying it had to be autoimmune related.
The rheumatologist that was treating me at the time checked for all kinds of autoimmune diseases. My blood work came back negative, and I was officially diagnosed with fibromyalgia. I sadly had to step down from my position and could no longer work due to the pain in my lower back. I was diagnosed with sacroiliitis (inflammation of one or both of your sacroiliac joints) it was very painful to sit in a chair. There were times when it felt like I was sitting on a knife.
My primary doctor and I felt that something else was going on besides fibromyalgia. By this time, I had a significant limp that wouldn’t go away due to inflamed toe joints, back pain, and stiffness. The physical therapist who was treating me recommended that I use a cane which helped tremendously with my mobility.
The following summer I had some skin rashes that just appeared. I went to see a dermatologist and was diagnosed with psoriasis (A condition in which the skin cells build up and form scales and itchy dry patches). I thought we had finally found the culprit for my joint pain, psoriatic arthritis, so I wanted to see a new rheumatologist. Someone recommended one not far from where I live. I called and made an appointment. She of course rechecked my blood work, and this time my ANA was elevated. I was officially diagnosed with (drum roll please) lupus, rheumatoid arthritis, and fibromyalgia. Medication was started and I am no longer on a cane. The flares still come, but I am better equipped to handle them because I know what the disease is that is causing it.
As far as my eyes go my ophthalmologist sent me to yet another eye specialist who has finally gotten a handle on the situation we still are unsure as to what exactly the primary cause of the sight loss is other than it has to do with my many autoimmune disorders. I do however have chronic dry eye, nerve damage to my optic nerve, glaucoma, dry spots on my cornea as well as scars, and my latest corneal edema (swelling of the cornea). My eyes are as close to perfect as they will get thanks to a wonderful and dedicated doctor.
Thank you for your time and I hope you find this interesting and educational. I also would like to apologize for the vague descriptions of the diseases mentioned, there is only so much space to write a lifetime of pain. This is a disclaimer I am not a medical professional this is just my story, what worked, and works for me. God Bless and keep on fighting warriors!
Signed a Fellow Warrior,