I think that is old info! Your longevity really depends on the severity of the disease. If it affects the lungs, yes, it is bad. But if not, well, you will live a lot longer! Cat has has it for 40 years. I was diagnosed 10 years ago, and dont feel like I am ready to kick the bucket anytime soon. Plus, I have had evidence of this disease for 60 years! It came and went! Sclaroderma seems to be the main factor in the lung involvement and even those folks dont always get it in the lungs! So, it is not always fatal. When I was first diagnosed, I had 2 pre teens at home, one with disabilities. I was worried about them if I was to die. I get it. But living from day to day is all we have. Just try to take care of yourself, eat right, exercise every day according to how you feel, and love your kids. No one has control, really. Most people just dont know it! Good luck.
Mary Ann

> It seems no one understands the pain the frustration the pure exhaustion of daily suffering and being tired ALL the time.

Sing it, sister. I have two teenage boys and have a daily commute of over 50 miles (one way). I just depleted all of my sick pay last week, so I can't take any more time off.

I was diagnosed a couple of years ago. So far, my symptoms are THE FATIGUE, severe Raynaud's, stretchy joints and very thin and sensitive skin, and fingertips being tough and callused (though I don't play guitar!).

I also have severe depression and thyroid issues -- it's so hard to figure out whether my fatigue is depression manifesting itself, or whether it's an MCTD flare-up. So frustrating.

My lungs are involved now on top of my joint inflammation is excruciating it's hard not to be depressed when we feel like we are missing out on everything with single mom life I feel like I'm not the best mom I can be and my poor kids are suffering because of my illness. It breaks my heart

I have been suffering with symptoms of periods of severe fatigue, can't hardly lift my arms or legs, can't even carry my purse and there is hardly anything in it for over 30 years. I am 53 yrs old and was a single mom to 3 kids and had days that I couldn't even get out of bed. It is very difficult for people to understand that some days you feel 90% normal and then you have days that you feel 0% normal and can't get out of bed. I have a younger sister that has lupus and she is on disability and uses a wheelchair to get around when she goes places. I have a handicap placard that I ONLY use when I absolutely can't walk very far, as I have issues with extremely high blood pressure out of no where and then it drops back down as fast as it went up. My lungs have been having issues off and on as well and I had Pneumonia 4 times last year but this year I haven't had it at all yet. I have tried not to get my self into a depression but sometimes I do get down. Hang in there and look for resources in your area that possibly can help with small things. My kids liked sitting by me in my bed and reading and we colored pictures when they were little. As they got older they would sit while I looked over school work and assisted them with papers that they had to write for school. I forced myself to go to all the school functions and sports practices and games.

Sometimes it takes every ounce of effort to even get out of bed, and there are days that I just give up and climb back in bed. I always use all of my sick time and vacation time every year due to illness.

Thank you all so much you have no idea how much it means to me that you share your struggles it's been so hard thinking I was the only one or that I was crazy n some of it was all in my head. It's difficult when people see me only on good days with makeup on n think oh she's fine they don't see the days on end when I don't even leave my home because it hurts to move. I don't have friends that's not an exaggeration I really don't have a single friend that I can talk to vent to or lean on I have my kids and that's it. And sometimes they just don't get it. I have made plans to see my sons new apartment 3 times and 3 times I had to cancel because the weather has got the best of me n he is mad at me now because I have not come. I still have 3 kids at home my youngest is autistic with ADHD and boy he keeps me on my toes. and I still have to be able to function enough to make dinner and do homework with them at the end of the day. Just the other day my daughter's teacher called me asking about my health issues because my daughter is sad that I'm struggling every day and I was offended like somehow she's accusing me of being inadequate when everyday I make dang sure they have everything they could possibly want or need. Thank you so much for letting me know there are other women out there who understand and can relate u have no idea how much that means to me. It makes me push forward when all I want to do is lay in bed (well in my chair that I sleep in I haven't slept in a bed in over 2 years it's too painful) n cry. Thank you all you are a God send. God Bless you all are wonderful.

I sure understand the pain and frustration that we all are going through. Know one really understand. WE hurt.!!! Sometimes it hard to get out of bed, but staying in bed hurts too. I can't just lie there , its a no win situation. The doctor says move but my body say really??? My hands have no strength and my feet hurt all the time..

And about the 10 year thing, I've read it many times too. I really hope its old infro...I'd like to stick around for a bit longer.. I've was diagnosed also 2 years ago and I'm not getting much better

There are newer studies that give better mortality and morbidity rates. I found a few that increase to 98, 96, and 88% survival at 5,10, and 15 years. One was a study of 280 patients over a 30 year period, which is still a small sample considering, but much better than the previous studies. It also describes co-morbidities that alter those findings.

Thanks, alwayspeachy!
Mary Ann