It is nice to have you on board, but for a very sad reason. I just want you to know that things can get better. I am pretty much in remission and trying to get off the steroids I have taken for the past 10 years. I heard recently that Katalyz who has had MCTD since he was a teen, he is now in his 50's, is in remission. What you need to do is help yourself the best you can. This can send you into a depression which can spiral into making your disease worse. I find just getting outside for a little while every day is helpful, especially when I have a flare. Eating right, exercising to the best of your ability, and getting some social life are important. It is so hard to do when you feel bad. I myself have tendency to eat junk food when I feel bad- after all, dont I deserve a treat when I an not well? LOL! But then I feel worse. As for the exercise, sometimes it is a stroll around the yard or down the driveway and sometimes it is the elliptical. As for the social life, invite a few friends over for a movie night or go to a movie or dinner with friends or family. You dont have to club to let folks into your life. If that is an issue, look for a way to volunteer. Maybe you could take a few books to a shut in for your local library one Saturday a month. Not a lot of time and effort. You are a lovely girl, ( the age of my son!) but I see those circles under your eyes and the swelling in the lids. Make sure you sleep. If you are not sleeping, tell the Dr. I took a low dose tranquilizer for a couple of years that was a lifesaver. Keep in touch. And good luck!
Mary Ann

Eating right and exercising is KEY! I find if I start down the path of eating bad usually starts to make me feel bad. Have you also tried a gluten free diet? They say most people who have auto immune disease should try it. I am about 90% gluten free and the other 10% is when I am out at restaurants.

Usually, if you're really bad off you might want to take steroids. That always works but it's the last resort. How often do you have flares?

I was officially diagnosed with mctd in December of 2016. However I've known something was wrong since 1980 when I started having random joint pain and swelling that moved from hips, wrists, knees, shoulders, fingers, toes, etc. I was diagnosed with Ankylosing Spondylitis in 1992 after having a host of tests that revealed I am HLA-B27 positive. After many years of experiencing back pain I went to see a new rheumatologist and was told I did not have AS because my spine showed no signs of fusion at all so she started the tests again to find my true diagnosis. After listening to all of my MANY symptoms and doing more tests and xrays she gave me the diagnosis of mctd. I am now 59 years old. I have a few flares a year. I try to eat healthy and do some sort of no/low impact exercise daily. I also try to have a positive attitude. Currently I am on meloxicam daily, cyclobenzaprine, tramadol, and prednisone during flares, and toradol injections as needed. I also take meds daily for GERD and anxiety. The symptoms that bother me most are the brain fog, hip pain, random stabbing pain all over, night sweats, and muscle weakness. I'm happy to have found this group to share with and to learn from.

Welcome, Jack!
Mary Ann

Thanks for sharing. One of my eyelids swelled last year when I was first diagnosed. My skin pigmentation went from red to dark brown.

I am newly diagnosed too and I read your description and it was very similar to mine. I too am learning and try to take it day by day or it's overwhelming, with my overthinking and anxiety- adjusting slowly helps. Thanks for sharing and I'm happy to not be alone as well.

Looking at your pictures remind me so much of myself. I feel so vain because I will see. Picture of myself, with long hair, a smiling face, and think to myself, "I wish I were that pretty again." Some days I hardly recognize myself in the mirror. My rheumatologist has given me an "unofficial" diagnosis of MCTD but is running further testing and following me closely. I did test positive for the RNP antibody. I too have had issues with joints and chronic fatigue but always brushed it off as "mommy pains", until new symptoms started creeping in. I feel like I have some tightening of the skin on my hands, my feet, wrists and hands hurt, I have severe brain fog, raynaud'snphenomenon, tingling in hands and feet, horrible dark circles and my hair will not stop falling out. I feel so tired that I would stay in bed if my littlest was in school. No medications have been given to me at this point.. You are not alone!

I had been meaning to reply to this post for a while, and to thank you so much for posting those pictures.

During a flare-- in fact, a lot of the time-- my eyes look VERY much like yours in the top picture, particularly the left one. Maybe not quite as swollen, but similar. Because I am a 59-year-old man, I think that people think it's less unusual... we're supposed to look a little weathered, and lots of people have bags under their eyes, yeah-- but this is different.

SO many times I would go into my doctor and say, "Come on, man, look at me. This just isn't right." My left eyelid would be swollen almost half closed, and purple-brown above the eyelashes. They would say, "You have blepharitis, it's an infection, wash your eyelids with baby soap, use natural tears."

Yes, sure, so I would do those things (and I recommend them--- why not? It can't hurt, it's just time consuming) and say, "That only helped, like, 15%." And they'd say, "Well, do it five times a day." And it just wouldn't make that much difference.

My theory is, washing eyelids doesn't really address the problem. It's a more complicated inflammatory process, and I feel like tissue inside my eyes is swollen, too-- maybe tissue inside other parts of my face and forehead as well that no one can see. There may be stuff inside my skull that's swollen, too, but you can't see it, can't measure it.

THAT is were my headaches start, and for me, that's the toughest symptom to deal with. The joint and muscle pain, for the moment, I can control with CBD (cannabis oil) or, for whatever reason, I can stand the pain.

I will try to post a picture of my own if I can figure out how to do it. (Do you have any tips on how that works?) I bet a lot of us have similar eyelid issues.

can you please share your email id on omkar.bagde@gmail.com

Really glad I stumbled upon this website/group today. I was diagnosed by my RH dr at the end of April 2017, thankfully someone finally listed to me and didn't just brush me off like everyone else. I am 40 but even as a kid I complained of fatigue and joint pain, I was tested for lymes disease because we lived in a rural area but that was it - they just said "oh it's just growing pains". Over the last 10 yrs I have been telling my PCP that my knees are really bad and I generally hurt all over, she tested for RA and when it came back negative shot my right knee with a steroid and said there you should be better. I have battled anxiety and depression for probably the last 15 years, the anxiety getting worse. I finally switched PCP and now love my new dr she listens and she is the one that sent me to the RH dr who also listened and figured out why I feel like I do. I was a relief to know I wasn't crazy but now it's also scary as hell because I know I have MCTD and I need to learn as much as I can about it. Doesn't help the anxiety much 'eh.
Sorry for the book. I didn't mean to babble. It's just nice to have found a "safe haven" of sorts.

Welcome, Kitten!
Mary Ann

Hey there-new to all of this as well. Because I'm new I feel like I don't really know alot. I can tell you that my "healthy eating" has helped me a lot. I refuse to call it a diet because it is simply watching what I eat most days and then 2 days a week saying, screw it :). I am not on medication yet as my first appointment with rheumy is not until end of June. Do you take supplements? I have seen a lot of improvement just through the supplements I take. We are all different but I am glad it is stopping the pain at least for now. I also get a lot of swelling but mine is in my legs and feet. Do we all swell up in different places? I am not sure. Hang in there and know that people on here are really caring and will be here as you go through this.

The more I read, the more I see that there are many if us out there with this diagnosis. Thank you for sharing so we can all learn as we go from each other.

I am couldn't be more grateful to have found this group of support.
I am new to MCTD and have been experimenting, and researching on my own. I read with steroids to avoid your regular carbohydrate and starches and sugar down to minimum because steroids will produce sugar for you, To avoid osteoporosis taking calcium and Vit-D so usually take more yogurt Triple 0 by Danon as it has fiber, other yogurts cause me constipation. Olive oil has helped me a lot (1-2 teaspoon). Phylum Husk is said to be another really good for you. So basically eating clean and exercise as mentioned above by MToennis 03/20/2017 (and exercise has helped with me heart beating faster to slow down because I also have thyroid and mixing those two even with an hour or 2 gap with some side effects).
Stay away from much salt (limitations), sugar, and fats. I have swelled up cheeks even being on a high dose of steroids. Eating right and exercise keeps the swelling low but not gone, and other good feelings, and forcing yourself to stay alert and focused as brain fog is every day and constant which I am not used to it and it bothers me alot, and now I need more sleep then ever before as I get fatigued easier (steroid makes me sleepy more). My hair and my skin are oily, and internally I feel oily after taking steroids. My pimples now pop up anywhere rather some specific usual places.

I am couldn't be more grateful to have found this group of support.
I am new to MCTD and have been experimenting, and researching on my own. I read with steroids to avoid your regular carbohydrate and starches and sugar down to minimum because steroids will produce sugar for you, To avoid osteoporosis taking calcium and Vit-D so usually take more yogurt Triple 0 by Danon as it has fiber, other yogurts cause me constipation. Olive oil has helped me a lot (1-2 teaspoon). Phylum Husk is said to be another really good for you. So basically eating clean and exercise as mentioned above by MToennis 03/20/2017 (and exercise has helped with me heart beating faster to slow down because I also have thyroid and mixing those two even with an hour or 2 gap with some side effects).
Stay away from much salt (limitations), sugar, and fats. I have swelled up cheeks even being on a high dose of steroids. Eating right and exercise keeps the swelling low but not gone, and other good feelings, and forcing yourself to stay alert and focused as brain fog is every day and constant which I am not used to it and it bothers me alot, and now I need more sleep then ever before as I get fatigued easier (steroid makes me sleepy more). My hair and my skin are oily, and internally I feel oily after taking steroids. My pimples now pop up anywhere rather some specific usual places.