Navigating Rheumatic & Autoimmune Conditions

A few years ago, I presented with blurry vision and a weird sensation of people moving away from me while I looked at them. The best way I can describe that it was like forced-perspective and, the longer I looked at someone/thing, they jumped backward. It was a very odd sensation so I went to my ophthalmologist and he diagnosed me with severe eye due to secondary Sjogren’s. We began drops and he gave me other tips on how to manage my dryness and the symptoms receded. And, since then, my Sjogren’s really hasn’t been too much of an issue… Until last year… Symptoms of secondary Sjogren's syndrome Even with the drops, my eyes felt dry and itchy. The veins were prominent and red. My eyes were puffy and uncomfortable. But, it didn’t stop there. Now, I was experiencing Sjogren’s symptoms everywhere. My skin was cracking and my mouth was sticky. My throat was perpetually sore. I barely had saliva and I experienced another surge of cavities in my teeth. I have experienced these symptoms before when my Sjogren’s flared (usually, in tandem with a rheumatoid arthritis flare), but it was not that perceptible in the sense that I sort of noticed it but it didn’t bother me. For the first time, in December 2019, I weathered a severe flare with the above symptoms but to. the. extreme. A severe flare with Sjogren's syndrome I couldn’t swallow, my nose and sinuses bled, my head ached because my sinuses were so dry. My skin cracked and bled, I applied lip balm and it immediately disappeared. My lips were bruised. I had canker sores in my mouth. It actually felt like the moisture was being pulled out of my body. It was a very weird sensation. I drank more water, but it was just siphoned away. I moisturized like mad but I might as well have been rubbing water all over my body. I felt like a reptile left out too long under a heating lamp. The symptoms simply went away And, then, one day it went away as quickly as snapping my fingers. I felt plump again. My skin returned to normal. My sinuses were no longer bleeding and I could actually swallow (and food didn’t feel like it was scratching the inside of my throat). What triggered that Sjogren's flare? We still don’t know what triggered it or why it went away. My RA was not particularly symptomatic at that time and the Sjogren’s flare didn’t really coincide with anything (period, sinus infection, change in dietary habits, etc – and you KNOW I keep tabs on everything so I would have noticed any trends). And, really we don’t know what else we could have done to treat it. I kept my water intake up, I moisturized, I wore sunscreen, I used my humidifier, I used my drops and rinsed my sinuses. What else was there to do but weather this storm? It was so uncomfortable I never experienced it again and I am happy about it. I remember texting my cousin saying I wanted to scratch my skin off because it was so uncomfortable. I guess it was one of those funny things that happen with rheumatoid arthritis sometimes. Usually, I can figure out the cause of a particular symptom but, 1 out of 10 times, it pops up out of the blue. Do you experience excessive dryness? What brings you relief from it? This article was originally written by Monica Y. Sengupta and published on our sister rheumatic community, RheumatoidArthritis.net. [lead_gen showIfLoggedIn="0" campaign="shortcode_posts" source="site"] The journey to receiving a lupus diagnosis can be a long one. The symptoms of lupus can be nonspecific and overlap with many other conditions. Because of this, it can take years, many doctors’ appointments and several misdiagnoses to finally land on the correct issue. We recently surveyed hundreds of people with lupus for our 2020 Lupus In America survey and the results were quite interesting. We asked about different aspects of life with lupus, including the path to diagnosis and other co-occurring health conditions. Some common responses we had are below. Other health conditions alongside lupus Of all survey participants, 99 percent had at least one other medical condition alongside their lupus. The most common of these was arthritis (osteoarthritis or wear-and-tear arthritis), allergies, depression, and chronic pain. All of these were experienced by roughly half of the participants. Other common co-occurring issues included neuropathy (numbness, pain, or tingling in the extremities), fibromyalgia, anxiety, insomnia, and weight issues (being overweight or obese). These were experienced by over 40 percent of all participants. Several other conditions were also mentioned. The following were experienced by at least a quarter of all participants: GERD (acid reflux) Dental issues High blood pressure Irritable bowel syndrome Migraine Rheumatoid arthritis Sjogren’s syndrome Asthma High cholesterol or triglycerides Osteoporosis Chronic fatigue syndrome Thyroid issues It is also no surprise to see several autoimmune conditions experienced alongside lupus since these types of issues often occur together. Some of these commonly co-occurring conditions include rheumatoid arthritis, Sjogren’s syndrome, thyroid issues, ankylosing spondylitis, psoriatic arthritis, vitiligo, Celiac disease, multiple sclerosis, and inflammatory bowel disease. About 7 percent of participants had also been diagnosed with at least one cancer, with skin cancer being the most common. Being initially misdiagnosed Since the symptoms of lupus can overlap with other conditions, landing on a lupus diagnosis can take some trial and error. About 4 in 10 participants (40 percent) said they had been initially misdiagnosed with another condition before finally being diagnosed with lupus. Some even had multiple misdiagnoses beforehand. The most common misdiagnoses were fibromyalgia, rashes (or other skin conditions), rheumatoid arthritis, and chronic fatigue syndrome. These misdiagnoses were experienced by 30 percent or more of participants. Other frequently experienced misdiagnoses included thyroid issues, eczema or atopic dermatitis, heart conditions, blood disorders, or kidney issues. Seeing multiple doctors to finally figure it out These misdiagnoses and puzzling symptoms can lead to many different doctors’ appointments. Only 9 percent (almost 1 in every 10) participants needed to see 1 doctor get their official lupus diagnosis. About 60 percent saw between 2 and 4 doctors to get their diagnosis, and 10 percent saw 10 or more doctors. The most common tests used to diagnose lupus included: Antinuclear antibody blood test (ANA) Complete blood count (CBC) Physical examination or clinical examination Other blood tests including tests called CRP, ESR, and complement tests (all involved in the immune system response) Medical history Urine test These results make it clear that the path to diagnosis may often be a rocky one with many twists and turns. What was your path to a diagnosis like? Did you receive any misdiagnoses or struggles along the way? This article was originally published on our sister rheumatic community, Lupus.net. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"]

Navigating Rheumatic & Autoimmune Conditions

Dry, Cracked, and Very Parched

The Strobe Light of Chronic Illness – How Others See Only Small Snapshots

Other Health Conditions Experienced Alongside Lupus

Ask The Advocate: How PsA Impacts Daily Life

Post-Activity Stiffness and Psoriatic Arthritis

Finding a Good Rheumatologist

Brain Fog: The Impact of RA on Mental Functioning