As a medical student, I was not prone to diagnosing myself with the “disease du jour.” A distance swimmer and triathlete, I imagined myself to be one of the least likely people to develop a chronic disease in the prime of my life. But it happened.
In retrospect, there were warning signs. My eyes had been dry and irritated since adolescence. An unusual fatigue had been building for years. At age 44, following a minor surgical procedure on an injured disc, my health disintegrated suddenly and rapidly. I developed overwhelming fatigue, constant migraines, abdominal pain, nausea, and diarrhea. It felt as though every cell in my body was soaking in a toxic marinade. At first, this seemed to be caused by a medication reaction. Yet the puzzling array of symptoms worsened as the months went by.
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None of my doctors suspected Sjögren’s syndrome, despite a suggestive history, including punctual cautery for severe dry eyes, chronic sinusitis, muscle pain, and stubborn tendonitis affecting multiple joints. After an unremarkable gastrointestinal workup, I was told that I probably had a severe form of irritable bowel syndrome. It was obvious to me that something much more serious was going on and it was not just affecting my gut.
One year into this ordeal, I had done enough research to suspect Sjögren’s as the probable culprit. Despite testing negative for Sjögren’s antibodies, I insisted on a rheumatology referral and a minor salivary gland biopsy. The biopsy was abnormal, yet it was discounted because of a low focus score. Despite an unclear diagnosis, I started prednisone. In just a matter of days, my gastrointestinal symptoms remarkably improved. So much for irritable bowel!
I have had the good fortune to work with an excellent rheumatologist who was willing to treat me in those early years as “probable Sjögren’s,” based on the clinical picture. Seven years into the illness, a second salivary gland biopsy confirmed my diagnosis.
The Problem with Diagnosis
Most people in my situation would have been told that they did not have Sjögren’s. I know women with similar stories who were told their symptoms were due to stress or menopause (90% of patients with Sjögren’s are women). Because depression, thyroid disease, celiac, and fibromyalgia are common comorbidities in patients with Sjögren’s, they can distract providers from looking for an underlying cause that connects the scattered symptoms.
My delayed diagnosis is typical. According to a recent study by the Sjögren’s Syndrome Foundation, the average time to diagnosis is 4.7 years. Because symptoms are heterogeneous, the diagnosis often takes time and thoughtful coordination of care. This approach does not fit in well with our current medical system of fragmented care and 15-minute appointments. If Sjögren’s is diagnosed, there are no standardized clinical practice guidelines, which places clinicians in the frustrating position of lacking good evidence-based tools for management.
Eye doctors need to be more aware of the possibility of Sjogren’s. When a patient complains of dry eyes, don’t just say ” my eyes are dry, too” as my doctor did.
Thank you for this article, many can say that this fits them to a T. I have pushed myself for years and finally I talk to my doctor about it and after tests and biopsy was it confronted. My ppl look at you and say you look fine only to not know how your feeling inside and how much you push yourself. So many out there are struggling and don’t know about Sjogrens. I for one had never heard of it until I was told about it. Prayers for all those out there undiagnosed. Kathleen Barnes
We have many of the same symptoms. Have you seen any progress?
I’m tired of seeing Sjogren’s described as dry eyes, dry mouth.
Let’s get this description changed to the reality of what Sjogren’s is.
Even the Mayo Clinic doesn’t have it right. There’s never going to be a serious research on Sjogren’s to help us with the severity of the Chronic pain, Chronic Fatigue. Sjogren’s is 50x’s worse than “Fibromyalgia”.
I have, Sjogren’s as Primary (and I will say, it’s worse than Lupus), RA, Lupus, Neuropathy, Sciatica, Osteoarthritis, Spasmodic Dysphonia, COPD, emphysema, Hypothyroid, Anemia, Depression, Anxiety attacks, and much more. Right now, I am in so much pain that just writing is killing me.
Stop putting Fibromyalgia as more serious than Sjogren’s. Fibromyalgia is a term someone threw out there in the medical world for muscle pain. I had more pain playing volleyball when I was a teen.
It is demeaning the way Sjogren’s is defined as. Where’s the research to help me, us? My health is declining. I keep having new problems discovered. Due to that and all my doctors, I continue to be sent for new tests and now doing Chemo infusions.
When the Sjogrens Foundation’s primary fundraisers are “sip-ins” and their literature primarily highlights dry eyes and mouth you can’t fault others for not understanding that Sjogrens involves much, much more. I belive the foundation needs to reevaluate their PR focus drastically.
Why is nobody studying LDN (low dose Naltrexone). That is like a miracle drug for ftigue and brain fog.
Thank you!! Ive been searching, waiting, hoping for an article that doesnt dwell on the damn “dry eye, mouth crap! Im so sick of every research leading and emphisizing it! My eyes are pretty normal, though teeth are rotting out of my head no matter what. The fatigue, apathy, depression and pain have taken every vestige of life from me. Bless you for putting it out there SS is SO much more!
So as a physician would you recommend John Hopkins? I know Sjogrens can’t be cured, but can the debilitating fatigue, neuropathy pain, other pain and general feeling if malaise be treated. I’m barely able to stay working full time. I then go home to bed before making supper and I avoid social outings because I don’t know how I will be feeling. Before Sjogrens I was The Crazy Aunt, Crazy Grandm, Hard efficient worker. Walked 2x/day and full of life.
I thought I had not only Sjogren’s , but a form of Acute Visceral Porphyria: The acute symptoms I have, still not diagnosed, but evaluated by a Hematologist, keep me undercover in the house during the day. I use nightlights at night, where my world is dark and manageable. Night has become my day and day, with the exception of medical/dental appointments, has become my night. I sleep until noon, or 2 pm and go to bed in the morning a 3 or 4 am.
No depression. I know both soft and severe clinical depression (s). Light, no matter its source can be savage. Dark bathes me in a solace. I miss many hours of a measure of accomplishment. Classic sicca symptoms. Like so many, add Neurologist, Psychiatrist, five Rheumatologists in five years, Ophthalmologist. 1991Sulfa antibiotic: CREST ( systemic sclerosis limited), and how that’s been debated. Iknow I’m not the only one yelled at by a Rheumatologist, nor summarily excused by another, that is, fired by one. Have rheumatology records to fax or mail to a Sjogren’s Specialist at JHUH in Baltimore. My records in reference to my attacks are referenced as “attacks” of panic. Well, I have other records that speak respectfully to my medical symptoms, and to myself as a person suffering with a chronic ailment (s). We will prevail. We are making a difference.
Thank you,
Should it be of consequence to any one person, or others: The above remark concerning “attack” of panic, was written by my current Rheumatologist and entered into my most current medical records from her office.
I hope to reconcile my attack symptoms at Johns Hopkins, through the clarity voiced by my other specialists, toning down the quoted “attack” of panic” remark of the other.