Just try to keep yourself as healthy as you can! Eat well, exercise, make friends, and dont skimp on sleep! See your Dr regularly and make sure you tell him your symptoms. I find that getting outside daily is a real help, but beware the sun! Wear sunscreen! When I feel bad, I try to get outside and take a short walk. If you hurt too much to exercise, go to an indoor pool and just move around. You can walk in the shallow end and swim gently in the deep. When you feel good, do more. As for the gloom and doom, the latest stats are great! Some were shared on here recently showing like 94% survival after 10 years. You also gotta remember, some of us with this disease are getting old and could account for most of the 6% which is no comfort to us, but might be for you! LOL! Oh, and laugh! I have not gone to a tear jerker movie in years. I refuse to watch them! Good luck!
Mary Ann

I could not have said it better, MT! Yeah, sometimes I wonder if our survival rate might actually be BETTER than the general population.

In this group, we've only lost a couple of people as far as we know in the last... man, is it ten years we've been coming here? (Of course, there could be others we don't know about, but it does not seem as if we are dropping like flies or anything.)

Agree on movies, too. I was talked into seeing Manchester by the Sea, and it was a fine movie-- but not for the holidays, and not if you are having a bad day with symptoms!

In contrast, The Arrival also strikes some very sad notes, but is ultimately a more hopeful movie, I felt. Actually, Manchester had some hopeful notes as well, it's just easy to miss them.

Hello! I've recently been diagnosed too! I am 24. It started with neck and back pain that I could not shake no matter what I did. Then I got the arthritis type symptoms in my hands, feet, and ankles. Mostly only thing I truly notice is the fatigue and feeling like I'm always in a fog and hard to focus. At my recent first rheumatologist appointment he said (like they did above) is stay healthy. Work out and get into it. Eat healthy and limit dairy, friend foods, and others that create increased inflammation. As you mentioned you dysphagia, I'm not sure. I experience daily frequent heartburn but am not noticing swallowing changes. I sometimes however get random shortness or breath when I try to take a deep breath. Anyways, just yesterday I remember feeling scared. Thinking... I am not myself. This isn't me. What's going to happen to me? But then I decided who knows how long I have and I just don't want to waste it feeling sorry for myself. I also recently cared for a patient who thought he was having a routine colectomy and the next day went to palliative because they found cancer all over his abdomen. Life can change so quickly. Make it what you can as best as you can :)

Hi everyone,
I'm newly diagnosed...last week. Been week and tired for a few years and couldn't figure out why. Now I finally know. I also have shortness of breath and some swallowing problems that have yet to be figured out. I know little about the disease yet, but am scared now that I'm reading these sights...you all are talking about surviving 10 years?? Is this a deaths sentence?

In the olden days, the average life expectancy was said to be about 10 years. We know now, that is no where near the truth, but that info still tends to be out there. Seems the life expectancy for over 90% of us is much longer than 10 years! Now, you have to remember that some of us are getting old and are in that equation also. You young ones should have a good long life ahead. So, take care of yourselves and get the most you can out of life! Mary Ann

Happy holidays to all, newcomers and old friends alike!

I'm 59, I've had this disease since I was about 15, I've had pericarditis and two blood clots, and now I am basically in remission (thanks to CBD -- more on that in the "Hope" thread) except for the dysphagia.

Now it is like I can feel the illness trying to flare, but the flare doesn't really take hold. Like, between flares I could sweep and clean the yard one day (two hours of labor, moving heavy outdoor furniture) and then go surfing the next day. On a bad day, I just need a recovery day in between... As recently as June or July, I might be sore all week from doing either of those things.

My new trick for dysphagia is: Eat when you can. Some meals, I have to give up before I am finished. Then, to keep weight on, when I can actually eat, I eat just a bit past the point of being full. This seems to help me keep weight on.

Staying active is absolutely key-- however:

<< random shortness or breath when I try to take a deep breath >>

This can be a symptom of pericarditis, particularly if you have chest pain, or a squeezing sensation in the middle of your chest, when you try to take a deep breath. You want to get this checked out ASAP, and ask them specifically to check for pericarditis, have them listen for a pericardial rub, sometimes only a cardiologist will be trained to hear it. It is absolutely controllable most of the time and if it's taken care of, it won't cause any lasting problems, but that should be looked at.

Until you know what that is, it is most prudent to avoid any heavy exercise, anything that could increase heart rate substantially.

Hey guys - I'm new to this forum - I was just diagnosed with Lupus SLE & MCTD about 3 months ago - my head is spinning with all that this (could) mean ... especially with having young children. Has anyone been prescribed something other than plaquenil and prednisone for MCTD?