MCTD Support Group
Mixed connective tissue disease (MCTD) or Sharp's syndrome is a human autoimmune disease in which the immune system attacks the body. MCTD combines features of polymyositis, systemic lupus erythematosus, and systemic scleroderma and is thus considered an overlap syndrome. MCTD commonly causes joint pain/swelling, Raynaud phenomenon, muscle inflammation, and scarring of...
I'm hanging in there, but it's getting really bad in the mornings with high humidity here in Southern California.
People don't think it's humid here, but I think it's the CHANGE-- from maybe 20% in the afternoon to 85 or 90% in the morning fog-- that causes the problems.
Last night, there were three episodes when I literally felt like I couldn't move-- it was almost like what I imagine Parkinsons would be like, but with more pain. It was like being locked into position-- like, pain is a 7 (on a 1-10 scale) in my current position, I know it will reduce to a 6 if I change position, but the process of changing position will entail a brief spike to 8.
At the third episode, I got out of bed, somehow got downstairs, and took an extra-large dose of CBD oil-- very low THC content, only 10%-- and two 500mg Tylenol at 5:30. Then I slept for another 5 hours and woke up feeling much better, though I'm still very, very stiff.
I could have worked today if I'd had to, but this was a little scary.
It's just fear. I can handle it... for now. Can't think too much about what I would do, or couldn't do, if it got worse.
No headache tonight so no painkillers, and they don't help that much for the aching either-- maybe a little bit, but they are best for the headache.
I don't know what this year's surf season is going to be like. I already decided to cut back a bit... anything over 15 days is good, I'm not going to try to body board 30 days like I did last year. I did 10 minutes on the elliptical, 10 swimming in the pool, 10 minutes of dumbbell work and crunches, and 5 minutes of walking up a steep hill with the dogs. Did not push very hard, maybe 65%. It did NOT make me feel any better today; I think it actually wore me out more, but I feel like I'll start having other problems if I skip too much exercise.
Hope the plaquenil kicks in for you, it does work well for some people. And be careful getting out of bed, particularly if it's dark; it is much easier to fall when you are that stiff. Hang in there....
No change in humidity this time-- and I do not think the flare was provoked by exercise-- I had a big workout day Sunday, but took it real easy yesterday. A similar big workout last week had no ill effect-- I built up to it gradually.
One interesting thing I noticed this time: The nights that I sleep BETTER-- fewer interruptions, etc.-- I tend to stay in one position longer. When I woke up for the first time at 6:00 AM, I was very conscious that I hadn't changed position in hours.
I guess I should be glad on those nights that the dogs keep jumping on and off the bed, or whine for me to change the water in their dish.
Could I check and refill their water dish that before bed? Probably. Could the dogs remind me to refill it at some reasonable hour, like 8:00 PM instead of 3:47 AM? Almost certainly. So maybe I'm glad we're all crazy-- that they sometimes bark at raccoons in the middle of the night, or I will wake up at 4:00 AM and have a snack.
I feel like I have a fever, too, but can't find the thermometer. Typical!
The heat and humidity here is awful! 91 today with a heat index of about 100 with the humidity.
Mary Ann