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Undifferentiated Connective Tissue Disease
Autoimmune Diseases | Last Active: Jul 26 3:41pm | Replies (34)Comment receiving replies
Gosh, I feel like I'm late to the party.....all the posts are from 2023! I was Dx with UCTD yesterday. For symptoms, I could cut and paste @marymaryoregon's post, they are so similar.
I told the rheumatologist that for all these years I thought I just had a collection of problems--saw an eye doctor for extreme dry eyes, used creams for dry skin, saw an ENT because I had trouble swallowing and a constant sore throat that turned out to be caused by GERD. Had constant stomach troubles that improved as I veered towards GF and the DF lifestyle. Saw my GP when I started hypothyroidism years ago, and for arthritis in knees and hip recently. I saw a hand specialist for my stiff hands..... Only after falling twice and getting referred to a neurologist for balance issues (and ultimately SFN) did I learn that I have something I've never heard of that could be causing it ALL! Go figure. I have high ANA, low platelets, tested positive for both lupus and RA, but don't really have either of those.
My GP put me on the Auto Immune Protocol diet and that has made a big difference with the neuropathy. My hands and feet don't burn and buzz as much now, but they are clearly worse if I stray into processed sugar, or ingest too much natural sugars (fruit.) Caffeine also seems to be a trigger, as does peanut butter. I would be interested in talking to anyone about this. And, how do we deal with having a problem that is largely invisible? People really do think you're making it up and my discoveries about food sensitivities are treated with scorn (by my husband) and disbelief (by everyone else.)
Thanks for listening. 🙂
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It doesn’t look like you’ve gotten any help with your questions.☹️ I have them also! I just got tests back that indicate I have SLE. I’m 72 years old and this comes as no surprise. My 37-year-old daughter has scleroderma. She started with a lupus diagnosis, which then changed to a mixed connective tissue disorder diagnosis and they have now landed on scleroderma. Her problems surfaced for the first time after the birth of her six-year-old son. She was asked early on by every doctor she saw if there was any autoimmune history in her family. She always responded no, though it had to come from somewhere. Well, it appears it came from me😭 I also suffer dry eye (Crazy how uncomfortable something that sounds so simple can be!), GERD, extremely dry skin, type two rosacea, and neuropathy. Honestly, that’s all I can remember right now, but I know there’s more. Because I don’t look physically ill, I know my husband is tired of my complaints and my friends and family don’t understand why I have to cancel plans at the last moment because I just don’t feel well and can’t really say why. Does any of this sound familiar? I’ve been reviewing all of my test results since I received them this afternoon. I know a call will be coming from my doctor any day now to go over them. One thing I can tell you for sure, your thoughts on food sensitivities are spot on. Because my daughter has suffered horribly, she has done a ridiculous amount of research. She changed her diet totally to try and fend off medication for as long as she could. She went completely plant-based for a year and had much less inflammation and pain. She did it as long as she could, but finally had to give into medication. Meal prep also became untenable with a husband and two children. They did not want to eat her cashew based sauces!🤢 so you are not crazy! What you put in your body has a huge impact on how much inflammation and pain you have. I hate the way these little boxes let me type so I will stop here and we can converse more hopefully! I’m sorry we’re both going through this! I have watched my daughter decline over the last five years and it breaks my heart. I hope we can all find the help we need.❤️