Patient-to-patient topic:
Sjögren's Neuropathy.
What do you wish you knew when first dealing with this symptom/situation?
Sjögren's neuropathy can present in many different ways, it's not just numbness.
What are the top 3 over-the-count products or tools you use when dealing with this symptom/situation?
Ice, NSAIDs (with GI prophylaxis), and shoe inserts.
What is your best advice for another patient dealing with this symptom/ situation?
Take a pro-active approach because falls and broken bones are no fun. Use the cane, walker, wheelchair - these are tools for us!
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'd been diagnosed with RA for many years, but that didn't really answer the neuropathy, specifically dysautonomia, symptoms I was experiencing. These symptoms were debilitating from weakness to overwhelming fatigue to chest pain and even passing out. Finally Sjögren's showed itself in labs, and this answered a LOT of questions. From symptoms to diagnosis took 10 years with lots of falls, syncopal episodes and even a pacemaker. My pulse was 19 when I went to surgery. They told my husband to call my parents and to get the kids from school, it was very scary...But a good journey and a hard journey can be the same journey. #goodhardjourney
Please finish the following sentence: "Sjögren's has taught me..."
...to let go of things I can't control. This has been so, so liberating.
What are your most difficult symptoms?
Debilitating fatigue, low BPs, neuropathy in my feet, blurry/double vision. There are many more, but these are probably the worst.
What do you wish people knew about your Sjögren’s?
Sjögren's is always - always - systemic.
How do you incorporate self-care with managing Sjögren's?
I use the rule of 3's. I'm driven by accomplishment (which isn't necessarily a good thing), so I do 2 things, then rest. Then 2 more things, then rest. Or have 2 busy days, then a rest day. Sjögren's doesn't always allow this, but this is always my goal.
How has Sjögren's impacted your life (either physically, emotionally, financially)?
The most stressful part is dealing with the US Healthcare system and fighting insurance/PBMs. The admin side of sick is challenging. Physically, I have to re-define my normal in an ongoing manner. I no longer work due to disability, this has been hard in many ways. The loneliness of chronic illness took a while to get used to. My vision is not great and I no longer drive at night or on bad days, which is quite inconvenient. The unpredictability of Sjögren's has caused me to avoid making definite plans with hard dates/times, which prevents continuing things like playing the piano at church. The consistency just isn't there anymore, this has been hard. But I've also learned many good things along the way, like empathy, how to be a good listener, and the beauty of interdependency on others. This has helped me move past the limitations of self-sufficiency, which was a stronghold that needed to be broken. Those have been good parts of this journey.
What is your go-to Sjögren's product?
Mestinon
What’s your best Sjögren’s tip?
Consider Sjögren's and staying as healthy as possible to be a part-time, and at times, full-time job. Prioritize it. Make time for it. Sjögren's will require this of you.
Patient-to-patient topic:
Sjögren's Neuropathy.
What do you wish you knew when first dealing with this symptom/situation?
Sjögren's neuropathy can present in many different ways, it's not just numbness.
What are the top 3 over-the-count products or tools you use when dealing with this symptom/situation?
Ice, NSAIDs (with GI prophylaxis), and shoe inserts.
What is your best advice for another patient dealing with this symptom/ situation?
Take a pro-active approach because falls and broken bones are no fun. Use the cane, walker, wheelchair - these are tools for us!
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'd been diagnosed with RA for many years, but that didn't really answer the neuropathy, specifically dysautonomia, symptoms I was experiencing. These symptoms were debilitating from weakness to overwhelming fatigue to chest pain and even passing out. Finally Sjögren's showed itself in labs, and this answered a LOT of questions. From symptoms to diagnosis took 10 years with lots of falls, syncopal episodes and even a pacemaker. My pulse was 19 when I went to surgery. They told my husband to call my parents and to get the kids from school, it was very scary...But a good journey and a hard journey can be the same journey. #goodhardjourney
Please finish the following sentence: "Sjögren's has taught me..."
...to let go of things I can't control. This has been so, so liberating.
What are your most difficult symptoms?
Debilitating fatigue, low BPs, neuropathy in my feet, blurry/double vision. There are many more, but these are probably the worst.
What do you wish people knew about your Sjögren’s?
Sjögren's is always - always - systemic.
How do you incorporate self-care with managing Sjögren's?
I use the rule of 3's. I'm driven by accomplishment (which isn't necessarily a good thing), so I do 2 things, then rest. Then 2 more things, then rest. Or have 2 busy days, then a rest day. Sjögren's doesn't always allow this, but this is always my goal.
How has Sjögren's impacted your life (either physically, emotionally, financially)?
The most stressful part is dealing with the US Healthcare system and fighting insurance/PBMs. The admin side of sick is challenging. Physically, I have to re-define my normal in an ongoing manner. I no longer work due to disability, this has been hard in many ways. The loneliness of chronic illness took a while to get used to. My vision is not great and I no longer drive at night or on bad days, which is quite inconvenient. The unpredictability of Sjögren's has caused me to avoid making definite plans with hard dates/times, which prevents continuing things like playing the piano at church. The consistency just isn't there anymore, this has been hard. But I've also learned many good things along the way, like empathy, how to be a good listener, and the beauty of interdependency on others. This has helped me move past the limitations of self-sufficiency, which was a stronghold that needed to be broken. Those have been good parts of this journey.
What is your go-to Sjögren's product?
Mestinon
What’s your best Sjögren’s tip?
Consider Sjögren's and staying as healthy as possible to be a part-time, and at times, full-time job. Prioritize it. Make time for it. Sjögren's will require this of you.