A little over a month ago I began having what I thought were carpal tunnel symptoms, mild numbness and tingling in both hands. I'd had this during pregnancy, but it went away. Initially, I ignored it, but it rapidly progressed to a lot of pain, particularly in my wrists. I saw a doctor who prescribed a splint and physical therapy on June 19. After a few days, my right hand, which was much worse, began to swell. I thought it was being caused by the splint. The numbness and tingling at night had progressed to severe burning and pain, waking me many, many times at night. Meanwhile, I was feeling very fatigued, but the interrupted sleep combined with the last week of school, 2 birthdays, and Daryl being out of town for 3 weeks in a row, led me to believe that it was being caused by those external circumstances.
The next week I saw my osteopathic physician for manipulation to help with the carpal tunnel. I mentioned my fatigue, along with a rash that I have had on my chest since April, that was small but had suddenly covered my entire chest, and the deep, dark circles that had suddenly appeared under my eyes. He ran a battery of blood tests. Several days later he called to tell me that everything was normal. I am hypothyroid and we both suspected that perhaps my levels had shifted and I was now undermedicated, but that was not the case. I left that morning, June 27, for a vacation in Telluride, CO with my family. I planned to see a neurologist upon my return to find out what I could do about the intense nerve pain I was having, which was still keeping me up at night.
A few days into my trip I got another call from my physician to tell me that he had just received the results of another blood test that took a little longer than the others, for an autoimmune disorder, and it was really high. The test was for antinuclear antibodies (ANA) and it was 2560, speckled pattern. Normal is under 40. I also had mildly elevated CRP and Rheumatoid factor numbers. At this point my right hand was so swollen I couldn't close it at all and it was also very weak. My left hand was also swollen but not as badly. The circles under my eyes were much deeper, and there was now some swelling under my eyes. I had a rough scaly rash on my elbows and numerous bumps, lesions, and calcium deposits on my hands. While the rest of my family enjoyed the great outdoors, mountain biking, hiking and white water rafting, I mainly rested and kept track of the new symptoms that appeared daily. We changed our plane tickets and came home a day early.
I saw my physician the next day, July 9. By this point my eyes were quite swollen and the normal creases that go from the inner eye down the cheek were purple and very deep. My eyelids and the area under my brows had turned a light brown shade. This is known as a heliotrope rash. My physician consulted with a rheumatologist, who told him what additional tests to run on me and suggested he start me on prednisone immediately, and promised to try and get me in his schedule within two weeks.
I dutifully donated my 8 vials of blood.
The prednisone has helped, reducing my symptoms but not eliminating them. It was frightening how quickly this all happened. Hopefully once the new lab results are in (next week) we will have a better idea what the illness is and how to control it. Possible diagnoses are things like rheumatoid arthritis, lupus, scleroderma, dermatomyositis, etc. The prednisone is just a short term solution to stop it in it's tracks. The rheumatologist is supposed be really good, really nice, and is a the father of a large family. I hope he lives up to my expectations!
Food and sunlight and hormonal changes are all known triggers for autoimmune flareups. My only theory at this point is that when we went to Florida in early April and I spent a week baking on the beach, it triggered this. That was when the first symptom, the chest rash, appeared. I have previously had sun poisoning, an allergic reaction to the sun, in tropical climates and that is what I thought it was except that it didn't go away and my skin gradually grew leathery in that spot. After 7 years of living in cloudy Michigan, perhaps that giant blast of sunshine was more than my body, which has previously shown sun sensitivity, could handle.
So if you pray, please pray that this is quickly diagnosed and it is not severe, and manageable. I am thankful that it occurred during the summer when my responsibilities are less and my older children can help more. I have had trouble doing things like changing diapers and snapping baby clothes, opening jars and bottles, clipping my fingernails, cutting food with a knife, etc.
And I'd be interested in hearing the story of anyone who has battled a similar problem.
Not Having Fun
4 weeks ago