Julie
Patient-to-patient topic:
Joint Pain & Sjögren's.
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 presented with severe joint and muscle pain, dry eyes, Raynaud's syndrome, and a strange rash. I was in a bad way by the time I was diagnosed. Best advice, keep on those doctors.. find someone who listens and puts the puzzle pieces together.
What do you wish you knew when first dealing with this symptom/situation?
I was very fortunate to get a PCP that listened to my complaints and ran the right blood tests. I saw a specialist and got the medication I needed to help control the disease and all the not-so-nice things it does to me.
What are the top 3 over-the-counter products or tools you use when dealing with this symptom/situation?
I require a prescription due to the severity of my Sjögren's. Ibuprofen is a good one to keep on hand, though. I have heating pads as well; those really help in the winter months when my pain is so much worse.
What is your best advice for another patient dealing with this symptom/ situation?
Find yourself a rheumatologist who will listen and find the medication that best helps your situation. Advocate for yourself, listen to your body, and report any changes or increases in symptoms.
Please finish the following sentence: "Sjögren's has taught me..."
I shouldn't have to "just live" with pain.
What are your most difficult symptoms?
Joint and muscle pain, Raynaud's, and dry eye.
What do you wish people knew about your Sjögren’s?
I wish my employer would be more understanding... This is a silent disease that can really change your life. I have real and debilitating symptoms.
How do you incorporate self-care with managing Sjögren's?
I still maintain my workout schedule, eat healthy, drink water, and try to manage the ups and downs as best I can.
How has Sjögren's impacted your life (either physically, emotionally, financially)?
It has been a large impact. My hand joints have deteriorated to the point of needing surgery. I have to hibernate during the winter months because cold weather is horrible for my pain and Raynaud's. I am single and very independent, so emotionally, this has taken a toll as I need to ask for help with more and more of my daily activities.
What is your go-to Sjögren's product?
Thera Tears eye drops.
What’s your best Sjögren’s tip?
Stay the course, eat right, exercise, and make sure you have the support of family and friends.
Julie
Patient-to-patient topic:
Joint Pain & Sjögren's.
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 presented with severe joint and muscle pain, dry eyes, Raynaud's syndrome, and a strange rash. I was in a bad way by the time I was diagnosed. Best advice, keep on those doctors.. find someone who listens and puts the puzzle pieces together.
What do you wish you knew when first dealing with this symptom/situation?
I was very fortunate to get a PCP that listened to my complaints and ran the right blood tests. I saw a specialist and got the medication I needed to help control the disease and all the not-so-nice things it does to me.
What are the top 3 over-the-counter products or tools you use when dealing with this symptom/situation?
I require a prescription due to the severity of my Sjögren's. Ibuprofen is a good one to keep on hand, though. I have heating pads as well; those really help in the winter months when my pain is so much worse.
What is your best advice for another patient dealing with this symptom/ situation?
Find yourself a rheumatologist who will listen and find the medication that best helps your situation. Advocate for yourself, listen to your body, and report any changes or increases in symptoms.
Please finish the following sentence: "Sjögren's has taught me..."
I shouldn't have to "just live" with pain.
What are your most difficult symptoms?
Joint and muscle pain, Raynaud's, and dry eye.
What do you wish people knew about your Sjögren’s?
I wish my employer would be more understanding... This is a silent disease that can really change your life. I have real and debilitating symptoms.
How do you incorporate self-care with managing Sjögren's?
I still maintain my workout schedule, eat healthy, drink water, and try to manage the ups and downs as best I can.
How has Sjögren's impacted your life (either physically, emotionally, financially)?
It has been a large impact. My hand joints have deteriorated to the point of needing surgery. I have to hibernate during the winter months because cold weather is horrible for my pain and Raynaud's. I am single and very independent, so emotionally, this has taken a toll as I need to ask for help with more and more of my daily activities.
What is your go-to Sjögren's product?
Thera Tears eye drops.
What’s your best Sjögren’s tip?
Stay the course, eat right, exercise, and make sure you have the support of family and friends.