Hello,
I completely understand.
Do what you can, and listen to your body. Everday is different, and just because you couldn't today doesn't mean tomorrow will be the same.

I am sending you all of my love.
Welcome to this group. I hope we can give some light to you.

❤ thank you aeilanikai. Some days you just have to let it all spill out. It gets to heavy to carry alone. People love you and try, but they don't understand it.

Of course, I'll always be here.
Its nice to spill out sometimes, and necessary if we want to stay sane lol

I remember at 15 years old, the first 12-15 months with this illness, the leg pain was just horrific. It just felt like electricity was running up and down my calves and thighs (and it looked like that, too, when I had an electromyogram.)

That phase, though, was only about a year and a half.

I never felt the muscle pain and fever was connected to exercise, but... I never exercised during a flare, so I wouldn't know, I was in bed, often with a fever. So I don't know if it's a good idea to try to exercise through the pain, or to get heavy exercise during this phase of the illness. I would definitely try to keep moving as much as possible.

Between episodes, I think I actually had a few short ski trips... eh, maybe one or two short ones, and I don't think I skied nearly as hard then as I do now. I was much less into sports back then.

In my early 20s, with the pericarditis, I had to be very careful, and there were a few periods when I could only do half of a hike with friends-- I would just wait for them at a scenic spot and write in my journal.

Hang in there, I hope this phase of the illness passes quickly. I'm trying to remember if anyone here has said, "I've had burning in my legs for the last 10 years," and that doesn't ring a bell.

My shoulder, and ear (strangely) still hurt like hell sometimes in the morning, but that always goes away about 10 minutes after waking up and moving around.

I responded to this a week or so ago, and it is gone....again, so here goes. Normal post exercise pain is gone in 24 to 48 hours. When it consistantly is bad and stays around, then that is not normal. You need to slow your exercise down when this happens. Could be a flare, but you are doing more than your body wants to do . You do not get stronger if you are hurting yourself. We have to push to get stronger, faster, loose weight, or whatever, but your body should be able to recover. If the pain remains, you are not repairing post exercise and can make yourself weaker. I am not saying for you to quit...far from it! But slow down. Give your body time to recover. Change to exercise that is a little more gentle and then build back up. Last year, I was in remission. I felt pretty good. For 6-9 months I did the elliptical 3-4 times a day at a good clip for 20 min and then spent another 45 min doing weights and floor exercises. I saw the difference, then, something changed. I think I came out of remission. (I see the rheumy tomorrow.) I started hurting all over. Trouble walking, fatigue. Stiffness all day. Joint pain and muscle weakness. I had to go back to pool exercise. Now, I think I will need meds again. That is right, I was off all my meds for over a year! This disease gets worse than better. You kind of have to roll with that, even if it is frustrating. Just remember, 'no pain, no gain" is not the way to go!
Mary Ann

PS- Every morning I wake up with a list of "want to's" for the day. Most evenings I am not happy with what I have accomplished. I also wish I was that person in my head.
Mary Ann

I recently recvd the diagnosis of MCTD and they want to place me in Plaquenol. Does anyone take it and what were your results/effectiveness?

I recently recvd the diagnosis of MCTD and they want to place me in Plaquenol. Does anyone take it and what were your results/effectiveness? It is quite nice to hear your stories and to know I have hope. Apparently o have had this for a while and went undiagnosed.

Plaquenil was a wonderful help for me for 10 years. Then I had to stop taking it because of some problems that may or may not have been caused by it. It takes a good 3 months to work to start with. You must be patient, but because it takes so long to kick in, sometimes you dont realize the benefit you are getting. I was very surprised to find out how much pain it was taking care of when I had to go off it. Remember to eat with it. I am talking about a meal! And eat, take a pill then eat another bite. It takes care of the nausea. I had nausea for the first few weeks I was on it, but that went away. I hear that is a common thing. Good luck.
Mary Ann