Since my diagnosis in 2008 I have learned more about myself and the importance of the medical community. I was in the United States Marine Corps when I started to have symptoms in early 2006. Then my husband and I got pregnant and I had my daughter in late 2006. After two years of my health declining and negative tests I was finally diagnosed with Sjogrens Syndrome. I was medicated, blood tested every other day to week, x-rayed, CT Scanned, ultra sounded and so much more before receiving the diagnosis. In late 2008 I finished my contract with the military and went straight to college to earn my degree. My brain fog, extreme fatigue and joint pains made it hard for me to go to classes and work. I had to push through and endure for my daughter.
At first Drs tried many different medications. The primary medication for Sjogrens at the time was Plaquenil (Hydroxychloroquine), and as I understand I still is today. However, within hours of taking my first dose my skin turn yellow (jaundice) and my blood pressure dropped. I was rushed to the ER and was told I couldn’t take the medication anymore. After that my rheumatologist at the time decided that I was going to have to treat the symptoms as they came and couldn’t be put on medications.
It took ten years of specialists, tests and hardworking for me to get to where I am now. I have hypothyroidism as well. Before CoVid-19 my Drs were testing me and figuring out if I could have fibromyalgia. Unfortunately I am allergic or have negative reactions to many medications. I have 8 different specialists at the moment that I go to at the VA hospitals for specific ailments and symptoms.
My tips and advice for anyone who suffers from Sjogrens and have similar reactions to the medications is below. (ASK YOUR DOCTOR FIRST)
The gel prescribed for dry eyes isn’t helping or it can’t be used I use Lumify but that was after trying other drops that didn’t help.
I can’t use the medications, “candies” and other items for my dry mouth, through trial and error I now use ACT Dry Mouth and Biotene Mouthwash.
For my joint and muscle pain, I use Motrin and Excedrin. I also stretch and do simple exercises. You don’t have to suffer, if simple exercises is all you can do or just stretching then do that.
For IBS and weightless I don’t drink any soda or juice drinks, I drink water, teas and coffee. I do not exceed a cup of coffee or tea a day. I make my own homemade ginger ale, recipes available online. I avoid fast-food and I cook low sodium meals. The healthier we eat the better our health. I have episodes of bloat and swelling on occasion, especially during high levels of stress and anxiety, but I don’t change my eating habits or give up.
Coconut Oil, and lotions with coconut oil are my favorite. Cocoa butter works amazingly as well. Working Hands is the fastest working and helps with cracked skin as well. Swiss Navy brand is the best for intimate dryness.
I write everything down in notebooks and in my notes app on my phone. I use my phone calendar to keep track of my appointments and alarms for reminders.