Ashley
Patient-to-patient topic:
Sjögren's and Pushing for Diagnosis.
In a few short sentences, please tell us your story with this symptom and anything additional for advice for another patient going through something similar.
I had neuropathy for 25 years and thought daily burning pain was a normal human experience until my 20s. My pediatrician when I was 7 said it was just “growing pains.” In 2023, I finally got diagnosed with small fiber neuropathy, which was then idiopathic, so they couldn’t find the cause. Doctors didn’t seem determined to help and insisted that I’m young and can bounce back. I kept pushing for answers, and a year later, at my request, I got a biopsy of my lip and was diagnosed with Sjögren's. My lifelong fatigue and neuropathy finally made sense.
What do you wish you knew when first dealing with this symptom/situation?
Not everyone has pain!
What is your best advice for another patient dealing with this symptom/ situation?
Don’t give up! 25 years later, I have my answers.
What are the top 3 over-the-counter products or tools you use when dealing with this symptom/situation?
Menthol, sleep, and heading pads.
Please finish the following sentence: "Sjögren's has taught me..."
How determined I am.
What are your most difficult symptoms?
Fatigue, neuropathy, tooth damage, dysautonomia.
What do you wish people knew about your Sjögren’s?
It’s not just dry eye. It’s a serious autoimmune disease.
How do you incorporate self-care with managing Sjögren's?
I try to give myself compassion. None of this is my fault, and I’m doing my best. I remind myself that I figured the diagnosis out so I can do hard things.
How has Sjögren's impacted your life (either physically, emotionally, financially)?
I’m 32 and have five chronic illnesses. It’s to keep up socially and financially on top of working when you have debilitating fatigue.
What is your go-to Sjögren's product?
Heated eye masks (for dry eyes) and ice caps for migraines.
What’s your best Sjögren’s tip?
Find time for enjoyment.
Ashley
Patient-to-patient topic:
Sjögren's and Pushing for Diagnosis.
In a few short sentences, please tell us your story with this symptom and anything additional for advice for another patient going through something similar.
I had neuropathy for 25 years and thought daily burning pain was a normal human experience until my 20s. My pediatrician when I was 7 said it was just “growing pains.” In 2023, I finally got diagnosed with small fiber neuropathy, which was then idiopathic, so they couldn’t find the cause. Doctors didn’t seem determined to help and insisted that I’m young and can bounce back. I kept pushing for answers, and a year later, at my request, I got a biopsy of my lip and was diagnosed with Sjögren's. My lifelong fatigue and neuropathy finally made sense.
What do you wish you knew when first dealing with this symptom/situation?
Not everyone has pain!
What is your best advice for another patient dealing with this symptom/ situation?
Don’t give up! 25 years later, I have my answers.
What are the top 3 over-the-counter products or tools you use when dealing with this symptom/situation?
Menthol, sleep, and heading pads.
Please finish the following sentence: "Sjögren's has taught me..."
How determined I am.
What are your most difficult symptoms?
Fatigue, neuropathy, tooth damage, dysautonomia.
What do you wish people knew about your Sjögren’s?
It’s not just dry eye. It’s a serious autoimmune disease.
How do you incorporate self-care with managing Sjögren's?
I try to give myself compassion. None of this is my fault, and I’m doing my best. I remind myself that I figured the diagnosis out so I can do hard things.
How has Sjögren's impacted your life (either physically, emotionally, financially)?
I’m 32 and have five chronic illnesses. It’s to keep up socially and financially on top of working when you have debilitating fatigue.
What is your go-to Sjögren's product?
Heated eye masks (for dry eyes) and ice caps for migraines.
What’s your best Sjögren’s tip?
Find time for enjoyment.