Glad to have you with us but sorry for the reason. I too am a nurse. I flirted around with this disease since I was a baby. In and out of remission without knowing why sometimes I was tired and hurt all over and feeling fine at other times. I was very active, hiking, kyaking, and was walking 2-3 miles a day at a rapid pace over hills when this hit. Started with plantar fascitis, a frozen shoulder, back pain and then hurting all over and really tired. I was diagnosed at 53 although I was told by a rheumatologist 20 years before that I had some kind of autoimmune disorder. I started on the steroids and then on Plaquenil. I also was pretty upset, thinking my life was over and I would not be able to raise my kids, but after awhile, I got to feeling better. I did pretty well for 10-11 years then recently went off all my meds as my Dr wanted to try this as he felt I was back in remission. So now I feel like I am back at the beginning. I have to say, it really is hard to accept this and any serious illness. You will need time to process this and really get a handle on the changes to your life. If you can get it under control, you will feel better emotionally. I finally have just decided to life do its thing and not to worry about tomorrow. It will be there or it wont. At least most of the time that works! LOL! Good luck and keep in touch.
Mary Ann

Hey you - welcome to the group! It's take a lot of courage to even write what you wrote. Whilst it's not a great situation to be in, The silver lining is that you've been diagnosed. In my case I had symptoms for 15 years on and off steroids before any diagnosis. When I first went on hydroxycholoquine (formerly branded as plaquenil) I felt better than ever - albeit, I screwed up by coming off it after my symptoms went and never got back. But if you find something that works and stay off it, make changes to diet (invariably helps to cut wheat/gluten/diary/smoking/alcohol) you could find you live a normal life. All the best!

Welcome-- reillysmom, and well said, MT and 1983! I really like MT's focus on all the things she's been able to do that she didn't think she could, and '83's comment about how much courage it takes to come here and talk about this. 83, I think you meant "dairy" not "diary!" Keeping a journal actually helps, dairy could be problematic. I do drink protein shakes to help keep weight on, but I think gluten and high-fat food are best limited, I don't drink, and I will add to the list: Processed meat. Yes, I still eat it, but I plan on sleeping for a while when I do.

The other thing that was critical for me was finding a job where I didn't have to work regular hours. I'm a therapist, so about 25 hours a week are a the office and the other 15 or 20 are paperwork at home. I almost always have a cancellation every day-- and during that cancellation, I meditate or sleep. It's a completely different way of living... much more dog-like. I don't know that it's a "normal" life, though I don't want to split hairs, because I agree with the spirit of what '83 said.

Then you have to learn how to avoid the isolation. I have about eight friends who are in rotation for long phone conversations, and I'm in AA so I get group interaction a minimum of two or three times a week. The hardest thing for me is group dinners because I have trouble swallowing and it takes me forever to eat-- but I can do that sometimes with groups of close friends who understand what's going on with my health.

Give your friends and family time. Some will get it eventually, some won't. Some will fall away for a couple of years but then tiptoe back into your life, and you can set up some new rituals and routines with them. With pity, sometimes you have to be assertive, sometimes forcefully. "Look, I love you, but seriously, cut the sh*t. This isn't helpful." When you find your strengths-- sports, hobbies, whatever-- that MCTD can't take away from you, you can excel at them, and people will remember you for that. Welcome!

I feel your pain. I am currently still classified as "Undefined CTD" but my derm suspects I have Discoid Lupus and rheum says I have Sjogrens. I am in my mid-40's, overall very healthy and highly active. The past three months have been like a disorienting nightmare that I am just emerging from. I went to the dermatologist about strange scars and spots appearing on my face and some burning, and now here I am. Most days I feel pretty good, and I am very lucky to have a supportive partner and friends. But fear of what the future holds keeps my anxiety just above the threshold of normal and I feel that I am always trying to keep this diagnosis from taking over my life. Especially when the plan is: lets wait and see if the Plaquanil and Elidel are going to make a difference. I have come up some things that help me:
- My face is affected. I try not to care. I smile and look people in the eye just as if it wasn't. It generally gets good results and frankly, I feel like I actually see people more than I used to.
- I have a thirty-second "elevator speech" about my condition that I use when people ask what's up. I say it and then I move on. I do not want to talk about my condition, I want to live my life. Talking about it is not going to change it. I save real indepth talking about it for the people who are my "support."
- I try to stay off Google regarding UCTD and DLE unless I am researching something specific that may add to my care.

Very glad to have found this group!

Welcome reillysmom, glad to have you on board.

Your MCTD flare seems to have come out of the blue ... but as you get more familiar with the insidious nature of MCTD (and reading posts on this board will help you to realize this) - you will find that some weird unexplained medical condition - night sweats, very unusually cold hands, swelling of the ankles, etc. - was likely nascent MCTD.

Changing diet to less processed more whole food, less (or no) meat and dairy protein... veggie proteins work wonders ... adding in anti-inflammation foods/supplements like turmeric ... really makes a difference. As does regular exercise, mediation and sleep routines.

Good luck on your journey ... I pray you will see improvements and remission.

Thank you all for taking the time to answer me. I have been doing some better. I finally got an appointment with a rheumatologist, albeit not until November. Until then I'm just patching it up around the seams with prednisone. I'm still taking 10mg a day. Sometimes it feels like I don't even need it I feel so good, and then other days I can barely roll out of bed. The unpredictability is killing me. I have all these things I want to do, but I have to prioritize and accept that I probably won't get to do them all. I work 6 of 7 days one week, then off the next week (12 hour shifts), I love my schedule because I love having that whole week off, to travel, work a second more fulfilling job, etc. today, I never really got out of bed. I slept through the eclipse.
I've always been a pretty content person but this is taking a toll. I don't want to add antidepressants to my drug regimen but I have to do something to pull me out of this hole. I'm praying my mental health recovers as my body does. I also feel guilty, like I should quit whining about it, I Know there are people who have worse symptoms and diagnoses than I do. Thank you all for listening.

Hope your flare has completely died out... but in case it's still a roller coaster ride.....

Have you tried journaling you days? What you eat, what you did (time outside in sun, exercising, play), alcohol consumption, etc. it may be a way to find clues as to why your flare is worse some days/times than others.

Hi reillysmom2. I just joined the group today. I was diagnosed with MCTD about 4 years ago. This was after 4 years of my doctor telling me I was just getting old, or it was from having so many kids (5 at that point, 6 total). I was in my early 30s at that time. I just turned 40 this year. I, like you, am a very active person. I love to bike ride and woodwork. This all started after I was bed ridden in a hospital for 1 month with my twins. They were born 10 weeks early. They are healthy active 8 year olds now. I on the other hand have good and bad days now. When I left the hospital, I had gained about 30-40 pounds. I had never been able to gain weight, even when pregnant, so this was my first sign that something was wrong. I just got worse over time. Now, I struggle with the fact that I can't do the things I used to be able to do. I can only ride my bike about 2-3 blocks before I feel like my legs are going to fall off. I'll get up out of bed and my legs give out. I have ended up on the floor a couple of times. My husband kind of gets it. He tries to be helpful. Most of the time I just try to focus on life and not think about it. It will always sneaks back in though, when I can't do something I used to be able to do. There are a million things people will say to make it better, my suggestion is to find what takes your mind off it and focus on that. We can't change what we have, but we don't have to give up on living because of it. I can't always do the things I used to do, but I still try. I do what I can and come back to it when I get more strength. Keep your head up, stay strong, and live each day to the fullest.

I just joined the group today. I live in a place where medical care is sketchy. I have a pretty well paying job and it scares me to think what will I do if I can't work and pay for my medicine.
It's such a relief to find this group. I'm not crazy. The hair loss the bad days when you forget where the car keys are. When you can't wake up. And you need to ask for help opening jars. Those impossible stairs. Or family and friends wondering what a put on you are doing. Sigh. Thank God I'm not crazy; I know now cause reading a lot of the posts here I'm relieved I'm not alone and I'm not crazy

Not to hijack Reillysmom's thread, but welcome Helloworld!

Most of the expense of this illness, for me, is simply my health insurance premiums and the cost of cannabis oil, which runs about $230 a month.

Funny about waking up... for me, that's not the problem. It's a happy day I'm comfortable enough to sleep more than about 6 and a half hours, but getting out of bed-- that's a different situation entirely!

Crazy how similar your story is to mine. I was just diagnosed in December with MCTD. I too went in a pretty vigorous bike ride and had horrible pain the next day. Tests showed a torn labrum in my hip. Didn’t get better so blood work was done showing positive ANA and RNP. I went to Mayo a month ago for a second opinion. They confirmed the diagnosis. I can tell you that paleo autoimmune helps. Beyond that, I’m new to the journey but here is you want to chat.

Were you on Cipro, Levaquine or some other fluoroquinolone antibiotic before your initial symptoms? Could have been triggered by these? Cipro and others are over prescribed for UTIs and are very dangerous. They have an FDA black box warning. The highest warning by the FDA.