Determining the best Sjögrens Syndrome products to use for dry eye, dry mouth, (and other challenges) is such a personal process. We all have varying degrees of challenges and different products work better for some people than others. But asking each other “What are your favorite products” is still one of the most common conversations I have with other patients. You never know when someone has tried something new that works for them and could also work for you!
This post is about the best products that work for me. I have focused mainly on some supplements and items for dryness. Addressing pain and fatigue will be a different post.
Take a look and see if some of these ideas might help you. And if you have tried products that you like even more, please do comment and let us all know about them! I have added Amazon links to this page as an Amazon Associate. This allows me to make a small fee if you purchase the product from my reference and link, without cost to you. I do this to help me with the costs of running SjogrensLife. I hope they help you as much as they help me! (more…)
My friend Sarah Schafer, a Sjögrens patient and an MD, wrote a message on the Sjögrens List Serve that I thought should reach a wider audience. Her thoughts on autoimmune fatigue are valuable and her personal experience with fatigue echo the experiences of so many Sjögrens warriors! I also have fatigue and mostly give up social activities in the evening so that I can work most of the day (not a quality-of-life choice I like). So I think I will look more closely at these tips from Sarah…
Sjögrens fatigue – and all autoimmune fatigue – is a clinical conundrum. No one really knows the cause, although there is some interesting research being done by a neuroscientist in Alabama who may shed some light on the underlying cause soon.
Fatigue is unrelated to blood tests (e.g.- sed rate, SS-A) etc, or even severe organ system involvement. The study I posted recently (article titled, “Fatigue in Sjögrens: A Paradoxical Response. Decreased pro-inflammatory cytokine levels tied to higher levels of fatigue”, by researcher Wan-Fai Ng from the UK) showed a surprising inverse correlation with fatigue and some inflammatory chemical levels in the blood. This is the opposite of what you would expect, which goes to show, we really don’t know. Fatigue is a prominent symptom in Sjögrens (70% disabling) and other autoimmune diseases.
Fatigue is my worst symptom. It is what most keeps me from having a better quality of life, despite many other serious symptoms.
I spend a lot of time trying to learn best practices for caring for my Sjögrens so that I can live well today and prevent as many medical issues as I can in the future. In fact, I would say that I’m very well-educated in product options, tips and medications. This doesn’t mean that I always practice perfect self-care discipline, but I certainly know what I should be doing.
Oral healthcare has not been an area where I have been lax! I use my Sonicare toothbrush, xylitol toothpaste and mouthwash, prescription fluoride toothpaste (and leave it on), and I use MI paste (calcium phosphate creme). I take Evoxac. I see my dentist three times per year and I brush after meals. And of course, I have xylitol mints throughout the day.
I have had one cavity the past twenty years…until now. I was horrified when my new dentist said:
“You have fourteen cavities that we need to fill, and the sooner the better!”