First of all….
What is Sjögren’s?
It’s basically a type of autoimmune that basically just means that my immune system tends to attack everything producing liquids in my body and dehydrating me.
How do YOU experience Sjögren’s?
So, I grew up with it and only found out when I took a detailed health exam along with my husband because he never took one ever in his life. The exam included a test of my liver functions, and they found a possible autoimmune reaction and told me to get further tests. I honestly thought it was a false positive because I grew up with it, so I guess I never felt like anything was wrong with me. Only after I tested positive, a lot of things clicked and I realized there’s some stuff about me that was “weird”.
So here’s the symptoms I have…
- “Medical Bad Luck”
I’m prone to all the medical worst case scenarios. I caught mumps after my MMR vaccination, and caught rubella years later as an adult. I caught typhoid fever from one exposure to someone with typhoid. I’ve gotten amoebic dysentery. I’m prone to infections & can catch a cold from a baby. A flu can morph into a serious sinus or ear infection that requires specialist care.
- Slow Recovery From Illnesses
Typically, it takes me weeks to months to recover from the flu. The longest it took me to recover from a flu was 6 months.
- Chronic Exhaustion
I used to fall asleep everywhere. I could even fall asleep standing up in a club. Never thought something was wrong though, I just thought that I was lame and get tired easily.
- Chronic Constipation
Up until I was 24, I thought it was normal to poop only once every 4-5 days. I mean, no one ever goes up to you going, “Hey, how often do you poop?” So I never knew it was weird. I only found out this was not normal when my friend was freaking out over her baby not pooping that day. I asked her, “Do babies poop every day?”
She went, “Er, people poop everyday. How often do you poop?”
She told me to go to a doctor ASAP when I told her, so I was given magnesium, digestive enzymes, probiotics & HCL supplements. I still only poop once every 1-2 days, but that’s way better than usual.
- Swollen Saliva Glands
I’ve gotten really bad swollen saliva glands since I was a kid. They’re typically treated with antibiotics or in really bad cases, the doctor has to make a small incision to relieve the swelling.
- Chronic Muscle Pain
I never even realized I had chronic muscle pain until I got medicated and realized my shoulders, neck and back feels so light and amazing.
- Dry Mouth
When my doctor asked me if I had dry mouth, I said no because I genuinely believed I didn’t have it. Turns out I did. I only found out a few months ago (2 years after my diagnosis) that normal people didn’t need to drink water to help them swallow their food. Again, it’s one of those things you don’t think of asking because it seems normal when you’ve always done it all your life. I mean, I know I drink more water than most people, but I’ve always thought it was a preference thing. And I assumed that’s why you’re served drinks with your food: to help you swallow it.
- Dry Skin
Even though my skin is so oily, I can see it’s dehydrated from within and it often gets to the point where my lips and the sides of my nose will crack and split. My skincare routine is basically that of a 40 year old’s. I’ve always had to use body butter on my legs, because just using body lotion gives me crocodile skin.
- Loads of Cavities
Sadly, I’m very cavity prone. I always thought it was because of my love for desserts though.
What medication are you on?
I’m on 1 tablet of Plaquenil daily. It used to be 2, but luckily I’ve gotten my stress levels managed and I can move it down to 1. I’m very lucky my Sjögren’s is mild enough that I don’t need steroids.
I suspect I have Sjögren’s. What do I do?
Go to a specialist and get tested. Just warning you, the blood test requires 8 vials of blood, so if you have low blood pressure like me, you may want to bring someone with you. I was really dizzy afterwards.
I’ve been diagnosed with Sjögren’s. Now what?
Talk to a specialist! Personally for me, if I have to have an autoimmune, Sjögren’s is mild enough that it’s tolerable. Your doctor will prescribe the right medication and it may take a while to figure out the right amount. Here are some things that I personally feel is important to talk to your specialist about once you’ve been diagnosed with Sjögren’s:
Supplements You’re Taking
Some supplements react badly with autoimmunes. I was taking colostrum supplements, which is really useful for boosting your immune system, but unfortunately, Sjögren’s gets worse with a boosted immune system. I was also taking these Japanese collagen drinks that tastes soooooo good…but turns out some people with autoimmunes have bad reactions to collagen supplements, so I had to stop drinking that just to be safe.
Sjögren’s pregnancies are riskier than normal pregnancies, so definitely let your doctor know what your plans are!