When you first get your diagnosis, it really is frightening. I remember thinking that I would not live to raise my children. It has been over 12 years now. On no meds and in remission. I remember being so tired and not being able to walk to the bathroom in the morning without holding to the furniture. I think I have had this disease since I was a baby, looking back at my hospitalization at 15 months and the strange unexplained symptoms I had off and on as a child. When I graduated from high school, my mother told me she did not think I would live to adulthood! But Here I am at 64, getting ready to go on Medicare in May!I have taking meloxicam, Celebrex, steroids for 10 years, and Plaquenil for 10 years. I had 4 children and worked as a nurse for 40 years, sometimes going in just because I refused to give up.
It would be easy for me to just tell you to not worry, but I know that will not do anything. There is a post below this one that has a study that is not so scary. It is a small study, but not done by some nutjob trying to sell some super pill. It may give you some hope and help you sleep at night. Good luck to you. Stick around. We learn a lot from each other.
Mary Ann

Thank you, Mary Ann! I am feeling better from yesterday. I realized my symptoms might never get worse. (I have fatigue and hearing loss but that’s all for now. Your message was very encouraging. I’m glad you are doing well under the circumstances!

Welcome, Cedar! I'm an old timer here, too. Fatigue and headache are my biggest enemies, but still 60, working full time, and doing some sports. Life is pretty good between about 8:00 AM-- an hour and a half after I get up-- and 3:00 or 4:00 in the afternoon. 8:00 to midnight is okay, but that is only because of Norco and cannabis oil on most days. There are some days when I do not need any painkillers, and I feel totally great without them, but I never know which days those are going to be.

The late afternoons are a little scary. This was not a good day, but the thing is, I'm always reasonably confident I will have 10 good hours in the day.

Yes, your symptoms may never get worse, mine have been stable for a while. Of if they do get worse, they may remit completely, and come back in a slightly different form-- that's a familiar pattern for many of us, with bad symptoms in our 20s, remission in our 30s, then it comes back in our 50s. For me, my 20s were about high fevers and pericarditis, 50s were the blood clots, and now it's headaches and fatigue.

What drives people crazy is not being totally sick and not being totally well and not knowing when they will be sick and when they will be well and getting all your friends and family to understand all that-- usually you only have to tell them ABOUT TEN THOUSAND TIMES!

But really, there's not much you can't do if you have one of the milder forms of this illness... you just can't do it for very long. And I sleep an hour or so in my office at least twice a week!

I was diagnosed in May so early days. The most frightening part for me is trouble with swallowing - I worry this will get worse. Waiting for a biopsy at present to make sure there is no underlying cancer as a result of the Myositis -this recent development brought me down for a day or two. Day to day apart from fatigue and muscle pain I am managing to work full time and carry on apart from not being able to exercise until all testing is completed. If no cancer found I can start further medication which should make me feel more human again.

Hi there and welcome. I’m curious about the cancer/myositis connection. Did you have specific differences that led them to believe you may have cancer? Or certain blood results?

I was diagnosed with MCTD in August so almost a year ago. Originally I only had Raynauds. Muscle involvement came within about 4 months. I have mild Polymyositis and am being treated with CellCept to get that under control.

I have developed vocal cord noduals, probably as a result of muscle tightness and voice abuse.

Doctors have not mentioned cancer, as of yet??

The meds I’m on are great so far!!