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...
Greetings! I have been searching for anyone to relate and understand what the heck I'm going through. I still can't honestly say I've wrapped my head around it all, but here goes: I've felt not quite right for as long as I can remember. Migraines hit all of a sudden 10+ years ago. Former dr wasn't listening to me, kept saying I was depressed...NOT. Eventually got a diagnosis YEARS later of MCTD. Something is wrong with just about every area of my being! This stuff comes and goes and never at the best times. I feel like I have a doctor for every part of my body! Long story short, after the migraines appeared out of nowhere and I was admitted in the ER for a marathon migraine lasting 4 days that I couldn't control--a neurologist that kept me in the ER and didn't know me from Adam took the time to listen to all my symptoms and ran extra blood tests. He tracked me down a few days after I was discharged from the hospital and told me to get in to see my regular dr ASAP because while he was trying to figure out my migraine problem, he stumbled upon some strange antibodies that pointed to autoimmune disease. Well, well, well! A complete stranger took a moment to listen to me, consider that I am a normal person with some not-so-normal issues and an alarm goes off! My former dr of who knows how many years she treated me didn't care enough to take a few minutes to order a few more blood tests!! Seriously, Really???? To top it off, my former dr was pissed that the ER dr contacted her to tell about what they had discovered! I quit her like a bad habit and I haven't seen her since! Should have left her a long time ago. But now it's Migraines, MCTD/UCTD, fibromyalgia, frequency/urgency bladder syndrome, somethings weird with my ears--eustachian tube/sound decreases off & on, inappropriate sinus tachycardia, acid reflux, sleep problems, slightly abnormal pulmonary function tests, TMJ off and on, oh how could I forget the infamous FATIGUE that haunts me to no end! I think I'm having something called Raynaud's going on but it's not officially on my list of diagnosis yet. I'm trying to do better with keeping my feet and hands warm but my fingers and toes get white, tingly and numb even when it's not cold so go figure!! Bones feel like I've been beaten with a baseball bat they hurt so bad some days. I get hot for no reason, sometimes have a slight fever/temp. I have a support system of family and friends BUT they have no clue what I'm going through and don't GET IT when I can do something one minute and the next moment I crash for days after any little activity. I'm on plaquenil, nexium, venlafaxine, methotrexate, metoprolol, folic acid, vitamin d, gabapentin, vesicare, amitriptyline, celebrex, tramadol and some kinda sumatriptan for migraines I think. Was on prednisone but HATED IT! I'm not taking it currently. I was given a Kenalog shot and I was allergic to it--itched like a monkey for 2 straight months...good grief as my pal Charlie Brown would say! Some days it's hard to walk, write, bathe, dress, drive, work, cook, shop, be in public, get out of bed, do anything that requires movement or thought. I can't focus at times and when I'm in bed for a whole weekend, my family doesn't understand that I can't get through the pain and/or fatigue so in the bed I stay. Sorry for rambling. Just wanted to get as much info out to ya as possible to introduce my struggle thus far. It's a mixed blessing to finally get someone to listen, believe you and actually find some kind of diagnosis. Seems like they can't stop finding crap wrong with me, gee-whiz!! Any advice out there? This was a goal of mine, to find a good group of people that knows first hand what is happening to me. It's been 3 years since my diagnosis and I read up on what I can (never knew how scary the internet really was until I started trying to research this MCTD) but I feel like I don't have a handle on diddly squat! Please feel free to share thoughts, wisdom, advice, suggestions, comments and what life is like with all this stuff going on. I really appreciate anyone taking the time to listen to my story and I feel fortunate to have found this group.
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Thanks so much for the good word! Well I've found a Rheumy but I'm having issues with the weight gain and of course work is super stressful. I carry the health insurance through work & my family needs my income as I'm sure so many of us that are still employed feel forced to work to be able to go to the dr & afford meds that may otherwise be nearly impossible to do with the disgusting costs & outrageous red tape we endure just to get medical care. I really could use some suggestions to help with stress, figuring out simple ways to get exercise in my routine. I eat a decent diet but I feel I angry about the weight gain because nothing I do helps. I keep gaining weight despite how little I eat sometimes & despite eating healthy. I'm considering trying gluten free but don't know much about this. Does anyone have experience with massages and acupuncture to help alleviate PAIN & help with stress??? I need to work as long as my health allows me to at this point in time but how can I ease stress when I can't quit work? I hear getting disability is a beast!!! Help please!!
SpeechTeacher
It is really hard for family to deal with this. It changes your life, but it changes theirs as well. We all have to mourn our good health and they have mourning to do as well. Just explain when they ask, but don't dwell on it. They will finally get it. I don't talk about it much as my spouse gets teary eyed, but he doesn't push to do things like her used to. Now he will suggest a hike and I will go or not depending upon how I am feeling. It is OK.
As for the fatigue- It really is an issue. The beta blocker does not help. Mine was recently increased and I am wiped out! I am considered to not have active disease at present, but the fatigue is really limiting. The least amount of beta blocker, the better! I take it for tachycardia as well.
Being able to retire was the best thing I did. It allows me enough energy to exercise and get enough rest. Will I ever be able to get by on less than 10 hours of sleep at night on average? It is hard to work and do anything else when you are so tired.
As for massage, some swear by it. I had one massage and it was so painful I have never had another one. My muscle pain is manageable until I am touched on the outside of my arms, legs, or rib cage. Weird.
A regular schedule got me through when I was working. 8 or 8;30 bedtime, regular meals, short walks, and relaxation in the evenings.
I wish you luck on this journey.
Mary Ann
Thank you so much for your words of encouragement. It's a wonder the doctors haven't been reading info like this straight from the source! I never thought about it like that. It's like many physician's are out of touch with reality when it comes to patients! This completely baffles me. I forgot to respond to a question : I am a speech pathologist currently working with school children. So the memory fog, trouble concentrating and the full feeling in my throat when I'm eating/swallowing my food freaks me out! It is helpful to know I am not crazy & that others have experienced the feeling that those closest to us just don't get it but there is hope that over time they may understand a little more. Hope you all are having a great day!
Thanks
Speech Teacher1
I will definitely speak to the rheumatologist about my fingers & toes. I will be mindful about the weather since it's bound to get older. Thank you so much!
Soeechteacher1