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 would like to know if there is anything I can take for it. Usually when I feel so weak and exhausted, my Doc books me into hospital, puts me on a cortizone drip for 3 to 4 days and does infiltration before I leave. This helps for about 4 to 6 weeks with pain and within 3 months I am back at being exhausted. I dont want to go on a drip so soon again (was on one 4 months ago). I have been battling with headache the past month. I wake up with one and go to sleep with it. I have tried several pain pills, from migraine mixes to grandpa powder....it results in pain relief for 20 min to max 2 hrs. Did a brain MRI and there is nothing wrong (I have a brain after all! :) it is apparently a side effect. I am just battling to concentrate at work with the exhaustion and headaches. I rest at night and week-ends. I have a very peaceful life, however I rest week-ends, feel great Monday mornings and by 12 I am back to square one. Can anyone give me some advise and info please.
As for exhaustion, I juice everyday (LOTS of dark green veggies and only one fruit) and I reaaaaaaaaaaally feel like it helps me tremendously. I was off juicing for two weeks couple months ago, and I DEFINITELY felt the difference in my body. My body was hurting and aching, I was fatigued, I had brain fog, and I felt really heavy, sluggish and like crap.
I think on a previous post somewhere, someone mentioned something about a gluten-free diet. Some say it's a fad and others say it works.
I would highly recommend looking at your diet and changing it. It's really hard to actually eat the entire amount of veggies and fruits on a daily basis so that's why I juice them.
Good luck!!
-Marianne
Mary Ann
It helps chatting about it and knowing there are people out there that feels just as exhausted! How do you manage with work? I have a high profile job and I think this is starting to weigh me down, but you do know how it goes, tomorrow or the next day is a good day again and then you just carry on.
Ya, pizza and any food with nitrates-- like packaged ham-- will give you that awful battery-acid-in-the-eyes headache. When I get regular exercise, it really helps me as well.
Norco (hydrocodone) has helped me a lot, I don't seem to develop much tolerance to it even using it once a day, and my liver numbers still look great.
The thing to remember about the mid-day headaches is that they feel worse than they are. Cognitively, I only drop about 15%, though it feels like I've lost half my brain function You just have to fight your way through them, and the exhaustion, until you get your second wind or you can take meds in the evening.
Feeling like you have to be 100% all the time is really the dark side of the American Dream. It's nonsense. I used to buy into the idea that we all had to be super alert and multitask at work all the time. Now I'm convinced that having that attitude causes brain damage, maybe helped bring on this illness to begin with.
But I hear you. In the mornings, I feel like Batman. By 2:00.... yecch.