I have been waking up a couple of times a night and finally just give up around 5 am and get out of bed. I have also had headaches now for about 3 weeks. I am finding them aweful, I don't normally get headaches. Don't know if it is the illness or what the heck it is. I would like to see what others think too!

Although everyone experiences different symptoms with this disease I too suffer from ongoing headaches and now sleeplessness. In fact that's how my symptoms started almost three years ago - with seemingly relentless headaches.

Since I was officially diagnosed with MCTD I have been on a non stop (but slow tapering) course of Prednisone as well as an inhaled steroid called Flovent. Both of these steroid classified drugs can cause sleep problems.

I simply asked my Dr. if he could prescribe me something to help with the sleeplessness. My physician prescribed me Trazodone which is prescribed for both sleeping and anxiety and I have been sleeping much better.

However, one side effect I've noticed is that I have the craziest dreams since being on it. A quick net search confirms that others experience this side effect as well but in my opinion crazy dreams are better than the alternative, not sleeping. I would talk to your Dr. about options for helping you to sleep better.

Glad to see I'm not alone or crazy. I swear the doctors and specialists are not aware of all the symptoms and side effects of this disease. A lot of times I leave their office shaking my head. The last time I was in the hospital they said I had a blood clot so they started giving me blood thinners. 2 days later a new doctor came in and said sorry, because you have MCTD your blood work sent us on a wild goose chase, you have a lung infection instead. She told me I needed to remind hospital staff that blood tests performed on people with MCTD are sometimes faulty and will lead them in the wrong direction. Like I was suppose to know this. I thought they were the experts. Thanks for the responses. Terry

Hi terry, i use amitryptaline for sleep, it also helps with pain. i have felt better since sleeping better. i had forgotten what it is was like to get a good nights sleep. Yes a lot of doctors know little about these illnesses...and the symptoms. i have finally found a good doctor after 11 years and its just great to finally find someone that knows what your talking about. good luck

I am going to a new doctor on Wednesday, I'm hoping he knows more about MCTD than the last one. I will ask him for something to help me sleep. Thanks for the info. Terry

I find it is very helpful to keep to the same routine as much as possible......going to bed at the same time and getting up at the same time. It all helps to keep your circadian rhythim in balance.....of course if you cant sleep that point is kind of moot. Even once you start taking something to help you sleep it would be beneficial to try to keep your routine the same.
i also use lavendar to help me relax and fall asleep.

good luck and peaceful dreams

I get stunner headaches and they say not due to Lupus/MCTD?.?.?
I notice I do not get them near as frequent or intense away from the office so I wonder if it is related to stress.?.?
I also use lavender, and all kinds of tricks and such to induce peaceful sleep, even hypnosis. Staying on a routine being very key for me as well.

Another issue is computer usage and fluorescent lighting, particularly if you have dry eyes. Avoid these as much as possible-- for me, this is a bigger problem that stress. Stress causes headaches, but not like this. And there now is no job where you can avoid being on the computer.

They will also tell you that it's crazy to prescribe painkillers for dry eyes and the awful stinging sandpapery feeling in your eyes, forehead, etc. I do find that they help, and they probably allowed me to stay in the workforce longer-- I could stand the pain in the afternoon because I knew I could kill it later in the evening. But you have long-term concerns about liver damage if they contain Tylenol (many do) and dependence and addiction issues.

My advice would be to stay off them as long as possible, but at around age 45-55 it gets too hard to work a full day-- much less do paperwork at night. I would post here more often if my eyes were not so trashed.

Your input has been much helpful. The last thing I want to do is take more medication, I will try the lavendar and get myself into a better routine. When I was working it was a lot easier to keep a routine. Now I'm just trying to get through the day, boredom makes for a very bad routine. Winter is tough, I can't go outside because my joint seize up, I lose the circulation in my fingers. I'm trying to find something to do everyday to keep my mind and body occupied which becomes very tiring. On a brighter note, I've taught myself to sew and made new pillows for my bed. Not bad for a tomboy, eh. Terry

I also live in Canada and am at home on sick leave right now. I am finding this winter the most brutal on my body ever, like you tlfj, my reynauds is horrible, I have bandaids and cortisone cream on my fingers, when I go out I never take my mits off cause my fingers are white and look dead, it is quite gross. My sleeping is horrible - the 25 mgs of prednisone I blame it on. When I was off in the spring I could at least go out until I got tired, but this winter stuff...there are days that I don't even leave the house. And being off work I am so lonesome, I feel forgotten by the people at my workplace, my husband told me that would happen, so like you, I really need to pick up some kind of a hobby. Once the winter passes I will start to join the real world again. Leanne

Leanne,
I take adalat for my raynauds and it has helped a lot. My fingers no longer go white, the adalat forces blood to fingers which in turn will stop the tissue damage. I was taken off prednisone due to skin rashes and sores so I take methotrexate and plaquenil. As for the winter, all we can do is hope for an early spring and get back in the garden. Terry

I also take adalat, she wanted me to double it up for the winter but .... 2 gives me headaches so I only take one. It has been so cold here though, I think I will have to take 2 a day, maybe if I take one in the morning and one in the afternoon. Even the door handle on the screen door has to have a sock on it so I can let the dogs in and out. I have a couple of really bad fingers right now and even the cortisone cream isn't helping, I think I must have froze a couple of spots and they will just have to dry up and peel. Oh well, I do live in Saskatchewan...get used to it I guess.

Cat my daughter in law takes Omega 3 for her eyes ,the doctor was amazed at the change she actually gets water back in her eyes .she takes liquid in big doses Ill ask her how much .Costco had the liquid one time. Anyway she cant take her Omega 3 either when she was pregnant or nursing so she is suffering ,she has glasses of course cause she cant wear the contacts and shes lost alot of vision,she also gets the herpes simplex sores around her eyes ,