Vicky 39 (Diagnosed at 34)
Please finish the following sentence: "Sjögren's has taught me...":
To listen to my body and advocate for myself with doctors.
What are your most difficult symptoms?:
Sjögrens, Chronic pain and fatigue, RA, fibromyalgia
How has Sjögren's impacted your life (either physically, emotionally, financially)?:
Sjögren's has impacted my life every way possible. I've had multiple flare-ups that have left me bed bound. Had to leave prior jobs because of physical limitations, which left me financially unstable and emotionally in and out of depression.
How do you effectively cope with the complexity of symptoms?:
I take each day as it comes. My symptoms have a wide range and I have to do what's best for me. Use eye drops, try to stay active even if it's just a tiny bit, rest when I need rest, and take my medication without fail to prevent flare-ups.
What do you wish people knew about your Sjögren’s?:
I wish people knew it's invisible. Sometimes even tests come out normal and no-one can figure out what's happening.
How do you incorporate self-care with managing Sjögren's?:
At least one day a week sometimes multiple days I don't do much, I rest, relax, moisturize, drink water, meditate and keep stress at a minimum. It's my best care regimen.
What is your go-to Sjögren's product?:
Voltaren for when my joints swell and ache badly.
What’s your best Sjögren’s tip?:
Find ways to reduce stress.
What topic would you like to discuss. Please list one symptom (dry eyes, fatigue, joint pain, etc) or situation (being a student, filing for disability, dating, working etc) to discuss in the next few questions::
Joint pain
What do you wish you knew when first dealing with this symptom/situation?:
Stress is a major trigger.
What are the top 3 over-the-counter products or tools you use when dealing with this symptom/situation?:
Voltaren
Tylenol arthritis
And synthetic gel tears
What is your best advice for another patient dealing with this symptom/ situation?:
Not all providers understand the real complexity of Sjögren and that's its more than just dry eyes and mouth.
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.:
The worst pains that affect me happen in my joints. I've been held in the hospital for this pain multiple times and they can never figure out why. My blood work usually indicates swelling but it's hard to see because it's in my joints and not on the surface. Not being able to walk or move and losing strength is debilitating, but it's not forever. Everyday is different. I look forward to each good day I can get.
Vicky 39 (Diagnosed at 34)
Please finish the following sentence: "Sjögren's has taught me...":
To listen to my body and advocate for myself with doctors.
What are your most difficult symptoms?:
Sjögrens, Chronic pain and fatigue, RA, fibromyalgia
How has Sjögren's impacted your life (either physically, emotionally, financially)?:
Sjögren's has impacted my life every way possible. I've had multiple flare-ups that have left me bed bound. Had to leave prior jobs because of physical limitations, which left me financially unstable and emotionally in and out of depression.
How do you effectively cope with the complexity of symptoms?:
I take each day as it comes. My symptoms have a wide range and I have to do what's best for me. Use eye drops, try to stay active even if it's just a tiny bit, rest when I need rest, and take my medication without fail to prevent flare-ups.
What do you wish people knew about your Sjögren’s?:
I wish people knew it's invisible. Sometimes even tests come out normal and no-one can figure out what's happening.
How do you incorporate self-care with managing Sjögren's?:
At least one day a week sometimes multiple days I don't do much, I rest, relax, moisturize, drink water, meditate and keep stress at a minimum. It's my best care regimen.
What is your go-to Sjögren's product?:
Voltaren for when my joints swell and ache badly.
What’s your best Sjögren’s tip?:
Find ways to reduce stress.
What topic would you like to discuss. Please list one symptom (dry eyes, fatigue, joint pain, etc) or situation (being a student, filing for disability, dating, working etc) to discuss in the next few questions::
Joint pain
What do you wish you knew when first dealing with this symptom/situation?:
Stress is a major trigger.
What are the top 3 over-the-counter products or tools you use when dealing with this symptom/situation?:
Voltaren
Tylenol arthritis
And synthetic gel tears
What is your best advice for another patient dealing with this symptom/ situation?:
Not all providers understand the real complexity of Sjögren and that's its more than just dry eyes and mouth.
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.:
The worst pains that affect me happen in my joints. I've been held in the hospital for this pain multiple times and they can never figure out why. My blood work usually indicates swelling but it's hard to see because it's in my joints and not on the surface. Not being able to walk or move and losing strength is debilitating, but it's not forever. Everyday is different. I look forward to each good day I can get.