Many of us have had this disease for a long time. My advice is to just take care of yourself. Eat right, exercise, and work on keeping your mind in order. Stress is a killer and will bring on a flare which means your symptoms get suddenly worse. It is easier to get into a flare than to get out of one. I suggest yoga and relaxation exercises to learn body awareness and how to cope with stress. Take your meds, watch how much alcohol you drink and just do all the things you have been told healthy folks do. I started having symptoms at about 15 months. I had a sickly childhood with strange problems like blisters on my feet, mono twice, light sensitivity so bad that I could not see when I went outside. I had a healthy period in my teens and early 20s. I went to my first rheumatologist at around 30 but went into remission before I was diagnosed. Over the years, the pain and fatigue came and went. I was often told that I was sleeping my life away. At around 50, it all really erupted and I was finally diagnosed at 53. The Dr said I was developing lupus, but I have not yet although I have many symptoms. I am now 64 and have a lot of joint pain but my organs are OK. I have a low white blood cell count and a rash a lot of the time and am very tired. But, I married, went to school, worked as an RN for 40 years, had 4 children and just lived. You can do this too. Just take care of yourself.
Mary Ann

The best advice I could give you is listen to your body and understand that you have limitations now.

I'm 24, when I first realized something was wrong I was terrified. I did research for months, went to every doctor I thought could help. Got tests and re-testing for months.

The hardest part for me was accepting that I had limitations. That things I could do effortlessly before would require focus and more effort now.

Exhaustion and pain were my major factors. I wake up tired and still fall asleep anywhere if I'm given the chance to relax.

MCTD is genetic. My aunt spent a decade and a half looking for answers, but lived a very active and successful life during that time. She's in her 50s now and still fairly active.

Although no doctor confirmed it, we believe my grandmother had it as well, she to be 82.

This diagnosis is not a sentence. Your body will tell you what it needs and wants. Just listen. Have your most patient doctor go over symptoms and possible ways to adapt to them. You'd be surprised how easily manageable it can be.
All the best,
Tristan

Hello everyone,

thank you so much for your answers.
You don't know how good it feels to see you (with similar conditions and limitations) doing well in life. I was afraid not being able to.
I thought I was just, as you said, "sentenced".
I am glad to see that you are still succesful, that you still have goals in life and that the desease never was the main-thing in your life.

honestly, I was lucky I had the first symptoms and a month later I already was on meds.
And it seems to be all good since then.
But only the fact that i am sick, that I do have a desease, made/makes me crazy.

If it wasn't for the pain in my hands I wouldn't notice anything. My head is the biggest problem, I am thinking too much.

sometimes I see the good sides of this.
I've seen my body always as a tool, as something that I wanted to use to "get things".
there was never a real strong connection between my body and my mind.
But I start developing it.

I just wanted to thank you 2 again.
Best
Ani

(there could be some spelling/grammar mistakes, I am german)

I was diagnosed 2 weeks ago. I started on Plaquenil and after only a few doses I felt so much better. Then after one week it didn't seem like it was working. I have to wait 5 more weeks to see The Specialist and I'm really frustrated. If there's any information that we can share I would appreciate it

Hey, Mamalama. Welcome! To give you some info, Plaquenil is a long acting drug. It take 3 months or so to really get into your system. About the time you think it will never work, it does! It also is supposed to help keep down organ involvement. You have not been on it enough time to judge how it works. One problem with it is stomach upset. Always take it with food. If you take it in the middle of a meal, it really helps! Remember to get your eye exams. The eye side effects usually do not occur until you have been on it for 5 years or so but can happen at any time. I took it for 5 years and did not realize how it helped me until I started having problems and had to go off it. There is still no certainty that it was the Plaquenil that caused my problems but the Dr said better safe than sorry! Anyway, eye exams every 6 months are a must with a visual field study. My opthamologist said there is a new test for ocular Plaquenil toxicity which is better, but I dont know the name of it. I think it involves photograping your macula. So, dont give up yet! And good luck.
Mary Ann

I was just officially diagnosed today: July 11. 2017. However, I had examined my lab results from a previous doctor and my mom also had this disease, so I had my suspicions. I was not happy with a previous doc and I had a gut feeling didn't know what he was doing. I went to a highly rated newer doc today and let him look at the results and tell me what he saw. He confirmed my suspicions.

I'm not afraid or worried, but relieved that I know what is going on with my body. My biggest complaint is the all over body pain and swollen, knotty fingers. Tramadol seems to do the job for me. My plan is to listen to my body and eat healthy foods that fight inflammation. I also want to get back into yoga again.

I cared for my mom in my home for 4 years. She also had this disease, and lived to be 88 years old. She did suffer a lot in the last 3 years due to the inflammatory arthritis and neuropathy in her legs.
She was not diagnosed until she was in her 80s. I'm glad I know now what is going on, and not getting sick when I am older and having to figure out what the problem is.

I think positive thinking is so important! Sending healing love to all.