Hi everyone! New to the forum, hoping for support that I can't get IRL. I recently started seeing a rheumatologist and got the Sjogren's diagnosis. Between the pain and fatigue flares (you have no reason to hurt and be tired! You work at a desk all day!) dry mouth (you're just dehydrated, drink some more water!), and dry eye (it's because you stare at a computer all day!) I feel like everybody is judging me without understanding. It's really frustrating and demoralizing.
Currently on 3 meds, eye drops, and what I like to call my "medicinal gum" (Spearmint chewing gum LOL). We're also playing the "let's adjust the meds!" game, because I started having ugly side effects at the higher dose, so we're trying to find the right dose level. Its been a rough few months, you know?
Welcome to the community Kade. I'm sorry you have chronic pain. I don't have Sjogren's so I can't help you there. Others here do. I have fibro so I can relate to your pain. I hope you find what you need here.
Hey Kade, welcome to the forum, I can totally agree with what you’re going through I myself have Sjogrens Syndrome and it is really affecting my joints right now and my fatigue is through the roof, most likely my flair up is from going to a cold 🥶 climate to a really warm-hot climate in one day and all the stress, as far as the people who judge you, I always ignore them because it’s my body not theirs and sitting at a desk all day IS tiring for people with chronic pain and those who suffer from autoimmune disease, Just be you and the ones who really care will stick around and support you, Love and prayers Kade, I’m here if u need to talk!😘👌
Welcome to the community Kade. I'm sorry to hear you have these diagnoses. It takes time to learn how best to cope with any medical problem, no matter what it is. And it takes times to learn to ignore ignorant & uncaring, judgemental people. Learn everything you can about Sjogrens and educate others by referring them to websites and books. Sjogrens foundation is awesome, and I've been a member since 2013.
I too have Sjogrens & fibromyalgia, along with hypothyroidism and a long list of other chronic pain issues. After getting diagnosed with Sjogrens I realized I'd been suffering symptoms for over 30 years at a mild level. It took a mass growing in my body to send my body's autoimmune system into the gutter, and most of my medical problems truly took hold (ie, Sjogrens Fibromyalgia and hypothyroidism & AI skin issues).
I've been on plaquenil since 2013 when Sjogrens was officially diagnosed. And up until last year I was handling the pain pretty good. When my Sjogrens flares up I get tiny pinprick blisters ("burning mouth") in my mouth that preceeds all over pain increase in my joints (which at first was a few joints but has since spread to most of my joints), and then fibromyalgia flares up with muscle pain & extremely painful tender points all over. Sometimes the flares last 3-4 days, but in the past 12 months the flares are lasting 7-10 days. I'm easily fatigued whether in a flare or not. And I keep oral thrush in my mouth & throat too, which my dentist prescribes "Magic Mouthwash&" to help treat severe symptoms. I have developed trouble swallowing pills due to throat dryness. And my IBS-C has worsened due to the increased Sjogrens symptoms. I drink on average 120-140 ounces of water every day because if I don't I can't go to the bathroom. My body needs that much water and I still have mouth eyes nose & throat dryness. I've learned to pace myself throughout my day, resting between activities. Whether it's shopping for groceries, getting my shower and dressing and styling my hair (I'm growing out to pull into a ponytail for ease), or sitting and paying bills, they all exhaust me just the same. This is just a little example of my coping with Sjogrens.
Sadly, once you have one autoimmune issue you can develop others, and many of them share common symptoms. My advice to you would be take every day one at a time, even one hour at a time. And rest when you need to, even if only 10-15 minutes. My rheumatologist said when my body is fatigued I should take it easy, and then catch up on good days, which is what I try to do. Sleeping soundly is non-existent now, which is another reason resting periods are important (naps or not). There are several of us here who have Sjogrens so feel free to reach out with specific questions or for suggestions. I'm sending you hugs love and prayers for strength to get through this! And remember you aren't alone, this whole community is here for you! 🙂❤🙏🌼
Hi all! Thanks so much for your kind words. They're really helping.
Flappy - Plaquenil is the one we're tweaking right now. It makes me laugh that it's an anti-malarial. My fiance likes to tell me "well, at least you'll be fine if you ever go to Africa!" And yeah once I started looking in to Sjogren's, I realized that I've been having the mouth and eye symptoms for years, but they kept getting written off. It wasn't until the fatigue and pain set in that anyone took it seriously.
I got approval this morning to have a heating pad in my office for my legs, which helps some. Unfortunately, my job takes me into court a lot, so I can't take it with me everywhere I go. 😕
As an aside, does anyone else use mobility aides on the bad days? I have a cane when my legs act up, but it's been getting worse lately and I'm sorely tempted to talk to my doctor about a wheelchair part time. I'm kind of scared to, though, because she already gave me the "use them or lose them" speech and told me to get my happy butt to the gym (my words, she was more professional than that! 😂).
Kade that is funny about the antimalarial med because I laughed & told my husband if we ever travelled where malaria is at I wouldn't have to worry about it!
I have used a cane for several years now, as well as a rollator. And in big stores like Walmart or Kroger I use motorized carts when they're available. If I ever need a wheelchair we will have to move because our house has narrow halls and doorways. One time I had severe vertigo and head an appt I couldn't miss, so I used 2 canes to stay balanced while walking. Of course my hubby was there to help too. But the doctors laughed and told me I should buy a walker for days like that. I bought a rollator instead.
I've eyed walkers and rollators, but I'm not sure how good they would be for me, because balance isn't my problem; weight bearing on my legs is where I struggle. Resting them helps for a while, but they just start back up again as soon as I start walking.