Kali
Patient-to-patient topic: Joint Pain & Fatigue
My joint pain and fatigue came on quickly after my initial symptoms of dry eye. I spent over a year going to the ER and my Primary physicians for chest pain, shortness of breath, dizziness, pain, fatigue etc. Each time I was told that I was healthy and it was only anxiety. After my 8th ER trip, I made a PowerPoint for my primary physician listing my symptoms. Finally she said that it was warranted to do additional lab work. My ANA and Connective Tissue Antibodies test were off the charts, and I was sent to a specialist who validated all my symptoms.
What do you wish people knew about your Sjögren's?
It isn't just "dryness" it is a systemic disease.
How has Sjögren's impacted my life: I am a pretty active person, Sjögren's has taught me to pivot and find other activities that I normally wouldn't have tried. Emotionally, I feel stronger. Advocating for myself and really stepping into living a healthier life has made me feel that much more confident.
What do you wish you knew when first dealing with this symptom/situation?
Pain isn't normal and high fatigue levels are not you being lazy or unmotivated.
What advice would you give to other patients who are dealing with this symptom/situation? Your symptoms are valid, and your pain is valid. You are not weak, lazy, or anxious. Instead of stopping completely on every hard day, try to pivot to something else that feels better.
How do you incorporate self-care with managing Sjögren's? Learning to say no and make myself a priority was the biggest lesson after getting this diagnosis. I ensure I make time for sleep, exercise, my mental health, and a balanced diet.
What are the top 3 over-the-counter products or tools you use when dealing with this symptom/situation? Fish oil capsules (I freeze mine so that I don't get the aftertaste). Movement every day, whether that is a workout or even a walk, try to move for at least 30 mins a day. Hot compresses every night on my joints. I usually use a rice back on my shoulders, neck, elbows and hips.
What is your go-to Sjögren's product? Hot Rice Packs, Prescription Eye Drops, Bag Balm, Tylenol, Humidifier
What’s your best Sjögren’s tip? Find the doctors that will listen to you and want to help you. Don't let the pain and fatigue win.
Kali
Patient-to-patient topic: Joint Pain & Fatigue
My joint pain and fatigue came on quickly after my initial symptoms of dry eye. I spent over a year going to the ER and my Primary physicians for chest pain, shortness of breath, dizziness, pain, fatigue etc. Each time I was told that I was healthy and it was only anxiety. After my 8th ER trip, I made a PowerPoint for my primary physician listing my symptoms. Finally she said that it was warranted to do additional lab work. My ANA and Connective Tissue Antibodies test were off the charts, and I was sent to a specialist who validated all my symptoms.
What do you wish people knew about your Sjögren's?
It isn't just "dryness" it is a systemic disease.
How has Sjögren's impacted my life: I am a pretty active person, Sjögren's has taught me to pivot and find other activities that I normally wouldn't have tried. Emotionally, I feel stronger. Advocating for myself and really stepping into living a healthier life has made me feel that much more confident.
What do you wish you knew when first dealing with this symptom/situation?
Pain isn't normal and high fatigue levels are not you being lazy or unmotivated.
What advice would you give to other patients who are dealing with this symptom/situation? Your symptoms are valid, and your pain is valid. You are not weak, lazy, or anxious. Instead of stopping completely on every hard day, try to pivot to something else that feels better.
How do you incorporate self-care with managing Sjögren's? Learning to say no and make myself a priority was the biggest lesson after getting this diagnosis. I ensure I make time for sleep, exercise, my mental health, and a balanced diet.
What are the top 3 over-the-counter products or tools you use when dealing with this symptom/situation? Fish oil capsules (I freeze mine so that I don't get the aftertaste). Movement every day, whether that is a workout or even a walk, try to move for at least 30 mins a day. Hot compresses every night on my joints. I usually use a rice back on my shoulders, neck, elbows and hips.
What is your go-to Sjögren's product? Hot Rice Packs, Prescription Eye Drops, Bag Balm, Tylenol, Humidifier
What’s your best Sjögren’s tip? Find the doctors that will listen to you and want to help you. Don't let the pain and fatigue win.