Vince 23 (Diagnosed at 18)
Please finish the following sentence: "Sjögren's has taught me...":
How resilient and strong I am. To stand up for myself and not give up, even when I struggle with daily symptoms.
What are your most difficult symptoms?:
Joint, muscle and neuropathic pain, Raynaud‘s and exhausting fatigue.
How has Sjögren's impacted your life (either physically, emotionally, financially)?:
It impacted me emotionally due to the physical symptoms! Pain and Fatigue can make everyday life very difficult. It‘s hard to accept and to move on especially when a new symptom pops up or your body changes due the disease. It took me a long time to accept Sjögrens and to move on
How do you effectively cope with the complexity of symptoms?:
I had to learn that my symptoms can only be controlled through medications and every symptom needs a special care.
What do you wish people knew about your Sjögren’s?:
Sjögren is so diverse, always systemic and much more than just "dry eyes and mouth." It‘s a complex disease with different symptoms and the struggle is real with the pain and fatigue!
How do you incorporate self-care with managing Sjögren's?:
Lifestyle changes (sleep, diet, exercise)
What’s your best Sjögren’s tip?:
Keep faith and believe in yourself! Take care of yourself, listen to your body and find a good rheumatologist who will provide you with comprehensive care and support so that you get the best possible treatment. Every one of us deserves that!
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:
Muscle and Neuropathic pain
What do you wish you knew when first dealing with this symptom/situation?:
What was going on me?
What are the top 3 over-the-count products or tools you use when dealing with this symptom/situation?:
Plaquenil, healthy diet & eye drops
What is your best advice for another patient dealing with this symptom/ situation?:
You are more resilient than you think!
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 was 15 when my symptoms like muscle and neuropathic pain started and was unsure what was wrong with me. I was very lucky to have a good rheumatologist who diagnosed Sjögren's with a lip biopsy.
Vince 23 (Diagnosed at 18)
Please finish the following sentence: "Sjögren's has taught me...":
How resilient and strong I am. To stand up for myself and not give up, even when I struggle with daily symptoms.
What are your most difficult symptoms?:
Joint, muscle and neuropathic pain, Raynaud‘s and exhausting fatigue.
How has Sjögren's impacted your life (either physically, emotionally, financially)?:
It impacted me emotionally due to the physical symptoms! Pain and Fatigue can make everyday life very difficult. It‘s hard to accept and to move on especially when a new symptom pops up or your body changes due the disease. It took me a long time to accept Sjögrens and to move on
How do you effectively cope with the complexity of symptoms?:
I had to learn that my symptoms can only be controlled through medications and every symptom needs a special care.
What do you wish people knew about your Sjögren’s?:
Sjögren is so diverse, always systemic and much more than just "dry eyes and mouth." It‘s a complex disease with different symptoms and the struggle is real with the pain and fatigue!
How do you incorporate self-care with managing Sjögren's?:
Lifestyle changes (sleep, diet, exercise)
What’s your best Sjögren’s tip?:
Keep faith and believe in yourself! Take care of yourself, listen to your body and find a good rheumatologist who will provide you with comprehensive care and support so that you get the best possible treatment. Every one of us deserves that!
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:
Muscle and Neuropathic pain
What do you wish you knew when first dealing with this symptom/situation?:
What was going on me?
What are the top 3 over-the-count products or tools you use when dealing with this symptom/situation?:
Plaquenil, healthy diet & eye drops
What is your best advice for another patient dealing with this symptom/ situation?:
You are more resilient than you think!
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 was 15 when my symptoms like muscle and neuropathic pain started and was unsure what was wrong with me. I was very lucky to have a good rheumatologist who diagnosed Sjögren's with a lip biopsy.