Hi, 24 year old female. I was diagnosed a year ago after 18 months of severe, sporadic and nonsensical symptoms of all kinds.
The most unforgettable, I would have muscle spasms. Sometimes just one or two muscles, various places. The scary part was when I had what I've taken to call full body-spasms. Literally, every muscle in every extremity would spasm, violently for several minutes. (Longest was approx. 45 mins. )

Doctors initially prescribed clonopine, which made the fatigue so much worse, but worked quickly and made life less embarrassing. Over time I've learned that standing for prolonged periods of time can trigger spasms. My last neurologist told me that the muscles would spasm because they were trying to force the blood to flow more regularly.

Honestly though, the ONLY thing that truly helped was consumption of cannabis. It's been my only medication (apart from occasional medicine for severe pains) for approx. a year now.

I have muscle spasms in my left thigh, usually when I'm trying to put socks or shoes on, it is excruciating! Also, that thigh feels weird a lot of the time, sometimes feels cold or numb, others it's weird to touch, feels like my skin is being sliced or burned.......

Thank you so much for your input and sharing your experiences. Nice to know I'm not alone but sad to hear of your sufferings. Have you guys read up on isaccs syndrome? Was wondering if anyone brought it up to their rheumatologist or neurologist?

I had eyelid twitching pretty bad in my 30s; still comes back every now and then, but nothing like what Teeh describes (that sounds rough.)

I also had terrible charlie horse calf cramps after both blood clots, though that has to do more with the blood clot than with MCTD-- in other words, MCTD was a very likely cause of the blood clot, but other people with blood clots also get charlie horses, even though it's not supposed to be something that happens with DVT. Those were really scary-- they would fling me out of bed, I would wake up on the floor or in mid-air screaming. (My dogs would freak out, and my wife, of course, would not wake up! Which is actually good, just weird. Dogs were just as helpful in that situation, and fell asleep again more easily than my wife.)

Cannabis might help with that; CBD would probably help a lot. Klonopin is fine if you're sleeping, but not for much of anything else. It's supposed to be the least addictive benzo, but many people say it's crazy habit forming, so just be careful with that.

@ Ephesians -- no, never heard of that BUT it's interesting that one of the tests that was used to diagnose me (initially with Lupus) back in 1974 or whatever was an electromyogram. And that was crazy positive, e.g., lots of extra muscle movement. And now that I think of it, yes, I think I did have leg twitching when I was an adolescent, with the fevers and muscle aches. That was so long ago, I had forgotten.

Thanks katalyzt, your muscle cramps sound very painful sorry to hear that. Fortunately I don't get too many of those! Can't stand Charlie horses. I had a real bad one behind my neck recently and I felt like my neck was going to pop in half.