Hello Autoimmune Warriors! I hope you’ve all had a great start to April, despite the coronavirus pandemic that we all find ourselves in. April is actually Sjogren’s Syndrome awareness month, and as such, I wanted to share my own story battling this autoimmune disease here on the blog as well as on social media.
Current age: 27
Age when diagnosed: 20
City/State: San Diego, California
Please finish with the following sentence: “Since I was diagnosed with Sjögren’s, I have learned…”
…that self-care is extremely important when you have a chronic illness. After I was first diagnosed, I continued to push myself physically, academically and professionally the way I would have pre-diagnosis. But it’s really important to listen to your body and take it easy sometimes, even if that means it will take longer to accomplish your goals.
What are your most difficult symptoms?
Right now, joint pain, particularly in my hands, is my most challenging symptom. However, eye and mouth dryness, fatigue, and brain fog have been difficult for me as well.
How has Sjögren’s affected your life and how have you been able to effectively cope with the complexity of symptoms?
It takes me longer to accomplish tasks than it did before, due to chronic pain and fatigue. I have to go to the dentist a lot to take care of my oral hygiene, and I see different specialists for each of my symptoms. I also take various medications to cope with symptoms like dryness and joint pain. Other than taking medications, I cope with the symptoms by connecting with others living with the disease on social media and through my blog, autoimmunewarrior.org.
What do you wish people knew about your Sjögren’s?
It’s not just dry eyes and mouth, and even those symptoms can be debilitating if they’re severe enough. This disease involves the whole body, and it’s a lot more than just a small ‘nuisance’, which is what it’s often portrayed to be.
Given recent global events amid the coronavirus/COVID-19, do you have any specific concerns because of Sjögren’s?
As part of my treatment plan, I take immunosuppressant medication, which I’m afraid puts me at greater risk of not being able to fight off an infection, like COVID-19, if I were to catch it.
What’s your best Sjögren’s tip?
Find a team of medical professionals, including a rheumatologist and dentist, who are knowledgeable about Sjogren’s and have experience treating this disease specifically. Unfortunately, based on personal experience, I’ve found that few medical professionals are truly educated about the impact that Sjogren’s has on patients, so it’s important to connect with those that really understand the complexity of the disease and how it manifests.
Thank you for reading my story! If you’d like to learn more about how I was diagnosed with Sjogren’s, please visit the following article: My Struggle with Autoimmunity: Part 1.
If you’d like to share your own story, please visit the This Is Sjogren’s webpage on the Sjogren’s Foundation website to learn how you can be a part of the #ThisIsSjogrens awareness campaign.
sending you love…….please keep safe!
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Thank you, same to you!
Hi Isabel: Thank you for sharing your story, I can relate to some of your symptoms. Maybe others can share their symptoms, and how they cope with SJ flares. I was diagnosed on 2/21/20 with Sjogren’s by my GP on the spot. I also have Hashimoto thyroiditis and had Mono 3 times in the last 7 years. I am not getting treated yet b/c of Covid-19. I will see a rheumatologist who specializes in SJ, and neurologist after. I have basic symptoms and others that overlap with other autoimmune conditions, or are complications of Sjogren’s. My lips are extremely dry, peeling and bleeding frequently. I have dry eyes, mouth, sores, a thrush infection in November, itchy skin/rash, and rectal bleedings since May 2019. After seeing many specialists and having all kinds of tests and procedures for the bleeding, my GP diagnosed me with SJ w/ a + ANA, and every symptom on the list. I can’t sit for long b/c I spasm, bleeding begins, and throbbing pain follows. I don’t have incontinence, but my muscles in the lower abdomen don’t work properly due to a pinched L5 nerve(found on MRI 3/9), it triggers spasms when sitting or standing symptoms, but the bleeding is probably SJ (dryness). Also diagnosed with pelvic dysfunction (1/13/20), I did physical therapy (rectal surgeon) for it. Thanks to my PT, she made me persist and she wrote a report letting my doctor know I had a neurological issue, and probably an autoimmune one. I still was able to force myself to work out 4-6 days a week until a month ago. I had to isolate due to the virus. Like you, I am extremely fatigued, my hands also hurt and are very stiff. My sternum and neck sometimes are also swollen and I feel a sharp pain and pressure in my chest, almost like a tight hug or stab above my stomach. Also my Aquiles tendons hurt, making it difficult to go for walks, work out, or get out bed (started on12/19 on and off). When I was finally getting answers, I had to put it all on hold. All I can do is take over the counter pain killers, and some supplements. I am looking forward for this pandemic to be over, so I can receive the appropriate treatment and a definite diagnosis. I work very slowly b/c with physical fatigue comes mental exhaustion, fogginess, and an inability to focus. I am working on my dissertation, but for this year it had to be placed on the back burner, and the days I have strength, I work on it, slowly. I am still hanging on, working still, teaching online. Stay safe and be well!!!
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Thank you Marcela, and I’m sorry to hear about all of your Sjogren’s symptoms, I can definitely relate. Yes, when the pandemic is over, I hope that you can work with the specialists to get a definite diagnosis and treatment plan. It may be frustrating right now, but with the right expertise and treatment, things will improve.