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...

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Advice

11_2016
11_2016

Hello!


Just looking for some suggestions/advice for my follow up (2nd appt) with rheumatologist in a couple of days. I have noticed the past month my fatigue has been absolutely overwhelmimg. I feel like I just can't think... like I forget so easily.. cannot focus. This seems to me to be the most concerning symptom. The body and joint aches do not seem to concern me as much. Also, it seems my hands Hoare showing signs of raynauds. They are randomly pale, pale and blotchy purple, and mottled looking at times. Also, I've noticed I feel like my heart is skipping beats and it causes me feel the need to "catch " my breath.  Just so uncertain what to expect from here.. if this is just a "flare". I make like work I am not by any means bed ridden but it's everything I have to make it work many days. Thank you so much in advance!!

CarolG
CarolG
I am sorry you are having a difficult time. I flared towards the end of the summer and work was extremely difficult. Just managing through the day was hard. I was very fatigued and live in the South where it was very hot and humid. Most days I felt leveled from the heat making my MCTD symptoms worse.

Before your appointment, make a list. Be sure to include all of your symptoms. I know getting extra rest always helps me.

It is very scary not knowing what to expect with the rapid heartbeat and catching your breath.

Good luck and let me know how it goes.
apaige
apaige
I also had fatigue in the beginning. Have they checked your thyroid? Along with all of my other medications, I take a thyroid one on top of everything else. Also, for the Raynaud's, I just switched medication actually on Monday and my fingers are not turning colors as much or as often. My rheumatologist put me on a vasodilator.
11_2016
11_2016
Thyroid levels were normal. Just recently started noticing color changes in my hands mostly with stress. My hands always ache so I'm not sure if the raynauds or just an arthritis type thing. Its not painful or unbearable just noticable.
apaige
apaige
That is how mine started out. At first they would just change colors, but now when they turn white sometimes they can be very painful, so painful I can't even do my hair. When they change colors, I found it best not to touch anything cold... my fingers end up almost sticking to the cold object
11_2016
11_2016
This diagnosis is the most frustrating things everything is so uncertain and so hard to control... :(
11_2016
11_2016
He is starting me on the plaquenil. Reading about this drug makes me rather hesitant. Ask for the brain fatigue he said that I need to continue on my workout plan strengthening my muscles and also eating a well-balanced healthy diet. Also suggested making sure that I am challenging my brain to keep it well conditionEd.
MToennis
MToennis
Make sure you take ti in the middle of a meal. I experienced nausea for the first 2 weeks, then it was fine. I have heard others say the same. Eating before and after the pill helps protect your stomach. I liked Plaquenil but no longer take it. Also, remember it will be as long as 3 months before you get the full effect, so dont get discouraged!
Mary Ann