Note: Edited/updated on May 6, 2020.
From time to time people ask me about the products that work for me personally to help manage my Sjogren’s Syndrome and other ailments. Usually this request is from another Sjogren’s sufferer or sick person. Some of these products might help others as well. I decided to include this in my blog website for ease of reference in future sharing. Of course, especially in Sjogren’s, what works for one person is not the best choice for another. And of course I am not a medical professional and this is just one lay-person’s experience and preferences. Please consult your own doctor for medical advice. Some people believe in or like one substance over another (for instance Xylitol is debated). But here is a list of good products that help me personally. I will likely keep adding to the list as I recall more things. It is a terrible injustice that these products are all “over the counter” and thus are not covered by most health insurance plans. They are expensive and need to be used liberally to help alleviate the pain and problems of Sjogren’s Syndrome and other maladies. Please note I avoid all Pharmaceuticals as much as possible and try to use natural remedies because I am usually allergic to Pharma drugs and they are usually toxic and have bad side effects.
For dry eyes: Refresh Tears. I don’t care for the various gels or ointments. Whatever eye drop you choose, most all Sjogren’s sufferers agree they must be preservative free. Use liberally as often as needed. Anything with preservatives burns and hurts my eyes. For me, I use 3 times at night and seldom need them during the day.
For dry eyes: Rebecca’s Rice Baggy from The Dry Eye Shop. These can be warmed or cooled to place over the eyes to soothe and heal. You can put essential oils on the bags for use over closed eyes. (If essential oils get into your eyes they will burn and hurt a lot. I personally have gotten oils in my eyes, however, and though the pain was excruciating, it actually helped and did not harm my eyes.) If you use essential oils around the eyes, use them with great care and discretion. (Lavender, Peppermint Oils) I like NOW brand essential oils available at New Seasons Market or online. If you can afford it use Young Living or doTERRA high quality brands, though I personally find NOW brand just as effective.
For light sensitivity: I wear hats with a brim (baseball type caps best) as sunglasses don’t really work for me over-top of my regular prescription glasses. Custom goggles are recommended for Sjogren’s sufferers (to avoid wind which causes pain) but I have never sprung to spend the money on these.
For dry mouth: I can’t tolerate saliva substitutes. I like Allday Dry Mouth Spray which contains 44% Xylitol from Elevate Oral Care, LLC. I get it either from Epic Dental or Amazon online. I usually need two rounds of about 12 sprays each overnight.
For dry mouth and to control my nail biting impulse: Epic Dental Sugar Free Cinnamon Gum (and they have other flavors). It contains Xylitol.
For sluggish bowels and digestion (IBS/SIBO): I have tried so many things, and nothing really provides a cure, but some products help. I’ve taken Iberogast herbal liquid remedy. I took it more often than advised, a strong dose 3 times daily. This product was somewhat helpful (I think). I’ve gotten it from Amazon. I also use a generic brand of MiraLax as sparingly as possible for relief from acute constipation. I have found nothing able to cure my SIBO/IBS. MiraLax does work well for constipation.
For Hashimoto’s Thyroiditis (hypothyroid): Armour Thyroid taken in split doses morning and late afternoon. You must get this from a naturopathic doctor. Traditional medical doctors tend to prescribe Synthroid which did not help me. There is a compounded type of thyroid medicine that my naturopathic doctor tried on me which caused severe anxiety in me and upon research it is a common problem. I will try to find out what the term is for that type of thyroid medication.
For hormonal insufficiency: I see my naturopath who does blood work to determine the amount of various hormones needed in a prescription compounded HRT troche.
For MTHFR genetic mutation / folate: Deplin which is an expensive prescription from my naturopathic doctor.
For controlling histamine intolerance (MCAS?) / “allergies”: Nettle herb. I believe this has been helping me; still evaluating this. Many people also report getting relief from season nasal allergies with this herb. I get Nature’s Way brand with the green cap from Fred Meyer.
For controlling histamine intolerance (MCAS?) / “allergies”: I am presently trying Advanced TRS from cosevatrs.com which is Zeolite made clean in a lab. It is supposed to bind and remove histamine and heavy metals and other toxins. I took this product for quite a while and I believe it was helpful but it is hard to know how much good it did. It may help with histamine and toxicity generally.
Anti-inflammatory: Pure Encapsulations Curcumin 500 with Bioperine; Holy Basil and other herbs. (It is difficult to evaluate how much these really help; they are purported to help reduce inflammation.)
Sugar Substitute: Stevita Spoonable. It contains Stevia and Erythritol. I get it from Stevia Smart online.
Bladder problems: Poise Ultimate Absorbency Regular.
Migraines and Headaches: Peppermint Oil, with a carrier massage oil (I like NOW grapeseed oil) used liberally on my scalp and face will usually kick out a migraine or headache.
Sinus congestion, colds, infections: Peppermint and Eucalyptus Globulous Oils with a carrier massage oil (I like NOW grapeseed oil) used liberally on my face and sinuses and chest really help alleviate sinus clogs. This can be intense, but it works really well.
Nose bleeds: Frequently use a Vitamin E Ointment with a little lavender oil in it and administer in my inner nose with a Q Tip. (The ointment I’ve been using is no longer available.) If a nose bleed won’t stop, use a generic brand of Afrin spray (which is a decongestant) and it will quickly stop the bleeding. Do not use these sprays regularly but only on occasion when needed.
Dry Skin: Liberal use of NOW Grapeseed Oil with a combination of essential oils, especially Lavender. Pelindaba Lavender Lotion (from Pelindaba Lavender Farm).
Dental Problems: (Big sigh.) Epic Dental Fluoride Free Toothpaste; Water Pic daily; frequent brushing and flossing; Reach Woven Dental Floss; Swish and Rinse frequently with water with 2 drops of peppermint oil (hold in your mouth as long as you can, then spit out); rinse daily with 50% water and hydrogen peroxide. Do mercury free composite fillings. Consider dental compatibility testing if you are allergic or sensitive to various metals and materials. [I need to insert the name of the lab that does this.]
GERD: I hope and believe Iberogast mentioned above may be helping this. Drink a lot of water. Do not eat late in the evening. (Pharma drugs do not solve the underlying cause and will need to be taken for life so I don’t consider those.)
Cold extremities feet, hands (Raynaud’s and Neuropathy): Heat Holders socks, gloves, hats. Super high quality, comfortable, and very warm.
Aching muscles/bones/joints/stiffness: Epsom salt baths with as many essential oils added to the water as you want/enjoy/can tolerate.
Fatigue: sleep and rest. Acceptance. Learn to embrace self care. Stop overdoing and take care of yourself. I have not found any product that can help with this debilitating issue.
Mental depression/anxiety, mood swings, etc.: sleep and rest. Meditate on pre-memorized Bible passages that bring comfort and strength. Pray for God’s mercy. Remember it will pass. Let your Christ believing prayer partners who are safe and trustworthy know. Do not isolate.
Structural Body Damage / Pain relief: I avoid Pharma drugs especially NSAIDs that do not relieve pain for me and cause stomach pain. Use essential oils and Epsom Salt baths as outlined above. I use acetaminophen (generic brands of Tylenol) sparingly only when needed with a lot of water and preferably with food to avoid kidney and liver damage. I have not yet tried CBD oil but may consider it in the future if needed as a last resort. Heating pads help with structural body and muscle/bone/joint pain. I personally do not use ice/cold anymore as my doctor says it causes my immune system to shut down and not heal the structural body injury. I do chiropractic like adjustments with my naturopathic doctor and massage therapy when I have acute re-injuries and can afford it.
Dysautonomia / Autonomic Nerve Damage: Drink more water and eat more salt.
For hearing loss: I need to get a hearing aid. Will update if I find one that works. To date I have not sprung to spend the money to get a hearing aid. I am advised by multiple people that Costco has good, affordable hearing aids and they will let you test them out while you shop in the store.
Hair loss: I’ve not tried to fix this. I should and will update later. Meanwhile I wear hats a lot which are required for my light sensitivity anyway.