Robert 30 (Diagnosed at 28)
Please finish the following sentence: "Sjögren's has taught me..."
I am valuable to the people in my life, even when I am bedbound.
What are your most difficult symptoms?
Chronic whole-body pain, fatigue, heart rate, and blood pressure fluctuations (POTS). I started experiencing these when I was 15, but I only started developing dryness symptoms in my late 20s.
How has Sjögren's impacted your life (either physically, emotionally, financially)?
I transitioned from working in a high-intensity career and hiking mountains on the weekends to being unemployed and unable to leave the house on many days.
How do you effectively cope with the complexity of symptoms?
Strong family support, tolerance and acceptance of myself, finding joy in the small things within my reach.
What do you wish people knew about your Sjögren’s?
I cannot predict how disabled I will be day to day, so it's challenging for me to plan ahead. On some days, I'm in the gym with my physical therapist, lifting heavy weights. On others, I cannot get out of bed.
How do you incorporate self-care with managing Sjögren's?
Consistent physical therapy exercise when I can, rest days whenever I need them, and eating a mediterranean diet are my top three care tools. I also find opportunities to go on little adventures out of the house on my good days. When I cannot leave the house, I am intentional in finding something to do, even if it means listening to an audiobook in bed.
What is your go-to Sjögren's product?
Carifree maintenance rinse, or another fluoride + xylitol rinse.
What’s your best Sjögren’s tip?
It's better to listen to your body than try to fight it. Ignoring pain and unusual feelings will make everything worse in the long run.
What Topic would you like to Discuss?
POTS, Chronic Pain, and finding coaching for physical rehabilitation
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.
After experiencing a severe flare-up in early 2020, I became largely bedbound and lost most of my strength. At first, none of the Doctors I saw had useful advice on how to exercise with chronic pain and severe fatigue. One Doctor even told me I was hopeless if I couldn't follow his simple exercise protocol. After cycling through many practitioners for over a year, I found care providers willing to look at all my challenges, build a plan specific to me, and give ongoing support. Most importantly, they could show me how to do an exercise instead of telling me to do something without demonstration.
What do you wish you knew when first dealing with this symptom/situation?
Many published recovery protocols for POTS just focus on generic cardio exercises. Strength and stability are equally important, but it took me a while to find care providers who could give me a holistic protocol.
What are the top 3 over-the-counter products or tools you use when dealing with this symptom/situation?
1. Google Scholar is a great search engine for medical research. It helped me find POTS physicians who were interested in expanding treatment protocols.
2. Social media (Facebook, Reddit) can be a great resource for finding local provider recommendations. I found my PT group this way. Parr PT practices in Texas and Colorado and specializes in neurological conditions.
3. Some physicians post good advice on YouTube. For example, Dr. Robert Wilson at the Cleveland Clinic publishes exercise tips on his YouTube channel.
A caution: I think these are great tools to screen for ideas, but it's also possible to encounter really bad or irrelevant advice on these platforms. They work well if you have a professional partner who can discuss treatment ideas with you.
What is your best advice for another patient dealing with this symptom/ situation?
Search for a care provider who understands your physical limitations and is able to adjust treatment to your capabilities.
Robert 30 (Diagnosed at 28)
Please finish the following sentence: "Sjögren's has taught me..."
I am valuable to the people in my life, even when I am bedbound.
What are your most difficult symptoms?
Chronic whole-body pain, fatigue, heart rate, and blood pressure fluctuations (POTS). I started experiencing these when I was 15, but I only started developing dryness symptoms in my late 20s.
How has Sjögren's impacted your life (either physically, emotionally, financially)?
I transitioned from working in a high-intensity career and hiking mountains on the weekends to being unemployed and unable to leave the house on many days.
How do you effectively cope with the complexity of symptoms?
Strong family support, tolerance and acceptance of myself, finding joy in the small things within my reach.
What do you wish people knew about your Sjögren’s?
I cannot predict how disabled I will be day to day, so it's challenging for me to plan ahead. On some days, I'm in the gym with my physical therapist, lifting heavy weights. On others, I cannot get out of bed.
How do you incorporate self-care with managing Sjögren's?
Consistent physical therapy exercise when I can, rest days whenever I need them, and eating a mediterranean diet are my top three care tools. I also find opportunities to go on little adventures out of the house on my good days. When I cannot leave the house, I am intentional in finding something to do, even if it means listening to an audiobook in bed.
What is your go-to Sjögren's product?
Carifree maintenance rinse, or another fluoride + xylitol rinse.
What’s your best Sjögren’s tip?
It's better to listen to your body than try to fight it. Ignoring pain and unusual feelings will make everything worse in the long run.
What Topic would you like to Discuss?
POTS, Chronic Pain, and finding coaching for physical rehabilitation
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.
After experiencing a severe flare-up in early 2020, I became largely bedbound and lost most of my strength. At first, none of the Doctors I saw had useful advice on how to exercise with chronic pain and severe fatigue. One Doctor even told me I was hopeless if I couldn't follow his simple exercise protocol. After cycling through many practitioners for over a year, I found care providers willing to look at all my challenges, build a plan specific to me, and give ongoing support. Most importantly, they could show me how to do an exercise instead of telling me to do something without demonstration.
What do you wish you knew when first dealing with this symptom/situation?
Many published recovery protocols for POTS just focus on generic cardio exercises. Strength and stability are equally important, but it took me a while to find care providers who could give me a holistic protocol.
What are the top 3 over-the-counter products or tools you use when dealing with this symptom/situation?
1. Google Scholar is a great search engine for medical research. It helped me find POTS physicians who were interested in expanding treatment protocols.
2. Social media (Facebook, Reddit) can be a great resource for finding local provider recommendations. I found my PT group this way. Parr PT practices in Texas and Colorado and specializes in neurological conditions.
3. Some physicians post good advice on YouTube. For example, Dr. Robert Wilson at the Cleveland Clinic publishes exercise tips on his YouTube channel.
A caution: I think these are great tools to screen for ideas, but it's also possible to encounter really bad or irrelevant advice on these platforms. They work well if you have a professional partner who can discuss treatment ideas with you.
What is your best advice for another patient dealing with this symptom/ situation?
Search for a care provider who understands your physical limitations and is able to adjust treatment to your capabilities.