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Hi all, I’m new here. I’m upset, sad, confused...but glad I have some answers. Here is my story. I’m married with 4 kids, 33 years old. I’ve felt off for the past few years. Last May, 2018, I went in to my doc for extreme fatigue, hair loss, excruciating neck pain, weak arms, numbness in my arms, legs, hands and feet, daily headaches and dizzy spells and my skin burning, itching, like it hurt to be touched. My doctor called for an MRI and when things came back fine he dropped me. Nothing...no… read more
Yes, I was diagnosed with mixed connective tissue disease as well. I'm always in pain, even with treatment. I always feel like I've been hit a dozen times with a sledgehammer. It's not impossible to live with, but it does make things harder for me now. I can't do the things I used to because I'm always hurting, tired, or sore. My rheumotologist told me birth control and silica were triggers, which I didn't know about. He also said MCTD usually targets the heart. Though it's rare, he said it happens if it doesn't respond to any of the treatments. I unfortunately already experience a lot of heart palpitations and had a seizure despite being on Plaquenil for several months. So I'm hoping next time I see my rheumotologist, they add something else.
I also have to be mindful of my diet, and even a lot of "healthy" supplements make me feel worse. I tolerate turmeric, ginger, fish oil, and pumpkin seed oil. A lot of other spices I used to tolerate like black pepper and cinnamon now trigger rashes or hives. I drink nothing but water to stay hydrated. I also cut back on salt and even more so on sugar. If your body feels tired, never try to overdo it. Try to do things at your own pace, even if it means slower. And if there are days where you're in too much pain to do something, rest first. A lot of times I have to put off stuff because I'm physically unable to do it at that moment. I hope you begin treatment soon and start to feel some relief 🙏
@A MyLupusTeam Member I've been on Plaquenil for roughly 4 1/2 months and still feel pain most days. It's most likely that I just haven't reached remission. Two months ago when I had my blood drawn again, my ANA was still positive I'm assuming that meant I was still active. I'll admit I still beat myself up because I feel like I'm never doing enough to control my symptoms and get better. I'm always blaming my diet, even though it's already squeaky clean, and I don't eat anything processed anymore and very very rarely fast food. I just have to accept that it's out of my hands at a certain point and I can only do so much. I just make sure to eat well, stay somewhat physically active, but not go overboard like I used to, and get plenty of sleep every night. Everyday does feel like a flare to me, but there are days where the pain is way more intense and those days I try to be mindful of and avoid as much as I possibly can.
Thank you for your response. I feel so lost, there isn’t a lot of info or people with MCTD that I can find. I’ve given up alcohol and sun. I’ve always only drink water, about a gallon a day...and eat very healthy. It’ll just take some time to get used to “this new life”
With your MCTD are you ALWAYS in pain? I’ve read with Lupus there’s flares but I feel like my symptoms are all day everyday?
many of us have multiple auto immune diseases. My first rheumy told me I had mixed connective tissue disease. I have not been told that since. I was very ill at the time I was dx'd but the Lord put me in remission for 15 yrs and I only now am having a polymyositis flare. That's a muscle disease that is also auto immune. Don't despair, fight for your life. You can have good days and maybe years. So hang in there. There's another young mother just joined maybe you all can get together on line and compare notes. Read through stories and see if anyone you relate @A MyLupusTeam Member
Yes I have MCTD as well. It’s all that you named. The worst!
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