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 got diagnosed with mctd 7 months ago. I immeditely left school and began doing classes online. I am on medicine that has done wonders for me but I still can't shake the serious brain fog, I cannot remember anything. It has really gotten in the way of my studies to the point where I can't even imagine being able to finish school. I am on the page of getting my GED to save myself from a year and a half more of constant frustration. Has anyone else been in this situation? How did you deal with your brainfog?
Mary Ann
Brain fog can be really distracting-- I went through grad school in my 50s, and it was very, very hard to study when I felt like I was in the aftermath of a mild concussion and my head was wrapped in cotton. Here are some quick points about brain fog:
* Exercise usually helps, but not always, (if you can manage it.)
* Brain fog feels worse than it is. I have done presentations where I felt like I didn't know what was going on and couldn't remember what I was talking about, and people told me I was killing it.
* Avoid or eliminate any recreational use of drugs and alcohol-- this helped me a lot.
* Do not panic if, for example, you can't remember where you are at an intersection that should be familiar. Symptoms do come and go... the disorientation with my brain fog was really alarming five years ago, and now it's almost gone, like Mary Ann says, it mostly returns when I'm super exhausted.
* Yes, sleep whenever practical or, better yet, meditate. I seem to get about an hour's worth of rest for 20 minutes of meditation, or otherwise inducing in a 'twilight' state between waking and sleeping (without drugs.)
* I cannot prove it, but I think brain fog affects memory retrieval more than memory storage though it affects both. When studying, you do have to work a bit harder to store the information. Use two methods-- say, reading notes and highlighting, and when studying, add a third-- maybe flash cards or a list of mnemonic devices.
* Then, you have to have a certain blind faith that you're gonna be able to recall the information. You just have to believe it, tell yourself, "I know this, the information is there." Relax as you do this, lean into it. During tests, definitely leave some questions for later, do the easy questions first.
* Finally, my own experience is that executive functioning is really not impaired. My instincts in an emergency-- so far-- have been bomb-proof. Reaction time in the car is still good.
* In other words, it feels like your brain is just not working at all, but when you dig into it, you may be surprised to find out how much functioning is intact.
* Try not to panic. And man, is it easy to panic!
Hang in there, and sorry we do take a while to respond sometimes, hope that's helpful.
Best of luck!