My Sjogren's Journey
A Personal Reflection.
I remember the exact moment when I began experiencing systemic symptoms of Sjogren's. Prior to that, I had always had dry eyes and gum irritation, but those symptoms alone never prompted me to visit a doctor and were inconsequential compared to what came next.
In the Spring of 2010, I was in my second semester of graduate school and was suddenly hit with a wave of fatigue. I could not get out of bed and my face and sinuses became swollen. I would easily run out of breath, and the basic tasks of commuting to school or grocery shopping became insurmountable. I remember some nights of just sitting in my bed, immobilized, my body inflamed and achy, and feeling overwhelmed with anxiety. It was clear to me that something was very wrong with my body, but I had trouble articulating everything that felt wrong. It was almost as if I was suffering from a bad flu, except my nose was not running and my symptoms did not improve over time.
Struggling with Diagnosis
“It was not until five years after the first onset of my systemic symptoms that I was diagnosed, by pure chance, with Sjogren's.”
I immediately began visiting doctors. It was hard to describe that general feeling of malaise I felt, but I remembered telling my primary physician that "I feel sick without being sick." I thought perhaps it was some hidden virus or even cancer that was affecting my body. But all of the tests came back negative.
Around the same time, I also began experiencing recurrent sinus infections, which led to multiple courses of antibiotics, and yeast infections. I was referred to a slew of specialists. Because all of these medical conditions began at around the same time, I would tell my specialists all of my symptoms, including those that fell outside of their specialty, thinking that there may be some connection linking everything. It seemed too coincidental to me that everything should start to go wrong at the same time. But no doctor ever made any systemic connections; each specialist focused only on his or her specialty and referred me to another specialist for other symptoms.
I was referred to an ENT specialist, who noted inflamed sinuses but said it was probably seasonal allergies (I had never had seasonal allergies before). I was then referred to an allergist. At the allergist's office, I was diagnosed with allergy to dust mites and, for years, I treated my extreme fatigue and sinus inflammation as allergy symptoms. Families and friends were baffled at how extreme my allergy symptoms were, but my doctors maintained their opinions.
At one point, my symptoms worsened. It was no longer just fatigue and sinus pressure. I began feeling chest congestion and, at times, could not speak because clear phlegm would become stuck in my throat. Again, there was never a runny nose, and the doctors said I did not have bronchitis, but did prescribe me with an inhaler for difficulties in breathing. My symptoms did not seem to be contagious to my friends and would persist for months on end.
Then, came the pain in my abdomen. I was told it was heartburn, which seemed plausible enough, except for the fact that antacids did not help with symptoms. The pain tormented me for several weeks, with two ER visits, until I was finally hospitalized. At the hospital, a series of tests were performed, but the staff could not find a cause and suggested that my symptoms were psychological or stress-induced. I genuinely did not believe my every-day stress induced my illness, but rather the illness was causing my mental decline.
The doctors did not trust my judgment and referred me to a psychiatrist. At this point, I did need treatment for depression, because my condition had caused me to feel hopeless and anxious. There was a constant fear that I would feel sick again and there was never any certainty as to how long it would take for me to get better, if at all. The greatest despair came from not knowing what to do to fix myself. I felt broken. I had gone from a fairly healthy woman in my 20's to someone who was chronically sick. I would have brief spells of being healthy and having energy in between long flares of misery, but there was nothing I could do to control or appease the onset of symptoms.
It was not until five years after the first onset of my systemic symptoms that I was diagnosed, by pure chance, with Sjogren's. After my bout of stomach pain and hospitalization, I went back to my primary physician and again voiced everything that had gone wrong with my body, down to the last detail. She ordered an extensive blood test, which included an ANA test, on the belief that I may have rheumatoid arthritis as I complained of pain throughout my body and joints. My ANA came back positive twice (she ordered a second test because it was prone to false positives). From there, my doctor referred me to a rheumatologist.
Disappointing Responses from Physicians
At this point, I had accepted that my symptoms of fatigue and shortness of breath were allergy-related and was treating them as such. I had no idea what an ANA was or what a rheumatologist did. When I went to the rheumatologist, he strangely told me "it's probably not Lupus, it's probably just Sjogren's." My initial thought was "what the hell is Lupus?" I had never heard of any autoimmune disorders and no previous physician had ever suggested it as a potential cause of my systemic symptoms. I thought I was being tested for arthritis or joint issues.
After an extensive panel of blood tests at the rheumatologist's office, the specialist called me into his office and told me I had Sjogren's. But not to worry, it was only dry eyes and dry mouth. He then proceeded to prescribe me with Restasis for dry eyes and another medication for dry mouth; never mind that I had not complained of dry eyes or dry mouth to him (they were inconveniences that I never thought to treat medically). By this point, I had also told him about all my "allergy" attacks, yeast infections, and stomach pain in an attempt to be comprehensive and informative. He dismissed those symptoms as unrelated. Then, as he continued to use the word "autoimmune disorder," it clicked in my mind that since it had to do with my immune system, perhaps there was a connection to all of the other illnesses that I began experiencing around the same time.
The rheumatologist was so cavalier about Sjogren's symptoms that at one point I interrupted him to ask, isn't it possible that this autoimmune disorder is related to my other symptoms such as my "allergy" symptoms (which also involve an immune response)? He seemed flustered and conceded that Sjogren's sometimes had systemic effects on people, but did not elaborate on what those systemic symptoms were. He said, “if you believe you are suffering from systemic symptoms, then I can prescribe you with Plaquenil.” This was the first time I had even heard of Sjogren’s and yet my specialist was asking me if I felt my symptoms were related to Sjogren’s. I took the prescription for Plaquenil and never went back to that rheumatologist again.
I went from one rheumatologist to another, before I finally found one that was familiar with Sjogren’s and sympathized with my chronic symptoms. After a ton of research and experimentation, I began managing my symptoms with Prednisone and an anti-inflammatory diet, which I will discuss in my Blog.
Over the years, I also continued to see ENT specialists and gastroenterologists, only to be told "oh yea, I have tons of patients with Sjogren's; they're very prone to sinus infections and/or acid reflux." It frustrated me tremendously that all of the pieces of the puzzle were present from the beginning, but it still took five years for me to be diagnosed. The first two rheumatologists I saw never even suggested any connections between Sjogren’s and sinusitis or acid reflux.
Learning and Coping
Now, I am more aware of the ways Sjogren’s affects my body and have an arsenal of over-the-counter and prescription medications to help me cope with symptoms. But it continues to be a struggle to manage the fatigue and brain fog, as well as side effects from medications. I am still searching for meaningful patterns and solutions so that I can live a full life. I must say though, it has become easier and I have better adapted to my condition. At one point, I had resigned to my disability and given up on any meaningful solution. Today, I am more optimistic and more determined to not let Sjogren’s handicap my life.
Take a look at my blog to explore more details of my experience with various symptoms and coping mechanisms.