If you’ve read my story, you’d know that fatigue is a serious issue for me. I can be completely tired, ready for bed, will probably doze off at any point but when it’s actually that time to lay in bed and sleep; my mind will not shut up! I can not sleep. I’ve been on Ambien in the past after I experienced infant loss but I am not any longer. Does anyone experience this? Does anyone have any tips? It’s kind of like my mind will not relax and since I started Plaquenil I feel anxiety at my resting point.
Then the headaches, I've experienced headaches for some time now.. does seem to be getting worse. Are headaches and Sjogren's combined at all?
Last night I just cried and cried until I fell asleep. it's awful
So sorry about those headaches. Seems so many of us with autoimmune get headaches of different types. Some migraines, some Trigeminal neuralgia, sinus/allergy headaches...
Sleep problems have plagued me since the onset of these diseases. I cannot sleep a regular schedule, and that is tough with a child. Oh, you can try ot get the child on your schedule, but then when school starts for them, they have a terrible time readjusting.
As for migraines, many of my friends on the Fibro site get Botox shots, and swear by the effectiveness.
I occasionally get neuralgia, am experiencing it right now, as a result of the barometric pressure being so low and all of the rain! Feel as though I've been clubbed on the lower back of my head! Heat is about the only thing that helps me!
What does your Dr say about the intensity of these? What is he doing for you, told you?
I hope you can get some answers, some relief, and a CT scan! I think these need further investigation!
Kay
I too sleep awful… Im sooo exhausted and my body wants to just lie there but nope nothing happens, just lay awake…i do try to nap though as often as i can but even if i dont i still cant actually sleep much when the moon rises. As for the headaches, well i noticed too for me, that my headaches seem much worse and even make me sick to my stomach when i get them…mine seem to be directly in the back of my head/neck, right on the beginning of my spine in the upper neck… Ive tried ice, it helps a tiny bit but nothing i take or really do helps the terrible headaches i get when i do get one. I just try to sleep it off and wait it out. i hope they can figure out what brings them on.
My headaches were getting awful and I attributed it to the inflammation in the membranes around my brain. My BRAIN felt sore! I know the dryness of Sjogren's can affect every mucus membrane in the body, including the brain, heart, and lungs. I have been on Amitriptylin (very low dose) for 2 weeks to see if it helps, and go back to the dr. in a month for re-evaluation. So far, it seems to be helping. I have a friend who has been on it for years for migranes, and she was helped as well,
"I have been on Amitriptylin (very low dose) for 2 weeks to see if it helps ..."
My wife's doctors suggested very low doses of Adepsique. It's a combination of Amitriptyline, Diazepam and Perfenazin. Each of the three is used to counter some of the negative effects of one of the others. It was originally used as an antianxiety drug. We live in Mexico, so I don't know how available it might be up north. It does seem to help. Some nights, but not all, she can get a little sleep. She tried Stilnox (Zolpidem) for a short time, but didn't react well to it. It actually resulted in hallucinations. Now that was scary!
The fatigue is still there, and she sleeps a lot during the day, but now she sometimes has stretches of four or five days where she can get out of the house and enjoy herself.
So sorry to hear you're suffering like that. The fatigue adds to the emotional weight of this thing. I've had years of interrupted sleep and the mind spinning at night. Or if I do sleep at night, its not really restorative. I've heard the same from Sjoggies on a couple of different message boards.
I've also heard lots of people with SS being plagued by migraines also. I would bet it's related. And I get the barometer related headaches, pressure and overall pain. I wish the research would look at that. Interesting that some of you get headaches that start at the base of the neck on the back of the head. Me too. I wondered if it was a fluid lack at times also.
I just started Plaquenil 2 weeks ago and I sleep harder now than I did. Not necessarily anymore restful yet but its something. However, it has messed with my eating too, so it could be whatever is going on in my system as it adjusts to it. Are the docs saying anything helpful? Please keep us posted.