View Full Version : My fatigue is freeking me out

01-29-2012, 02:34 AM
I know that an autoimmune disorder can cause severe fatigue, but if I don't take medication, I have severe sleepiness, I can sleep, actually sleep, not just laying down, for 20-22 hours every single day.

Today, I woke up, and felt really sick, what a shocker! Well, I was hateful, grumpy all day, around 4, I ended up taking 2 different pain medications and 1800 mg neurontin, sure I'd go to sleep, but all I did was lay there about an hour, got back up, and actually for whatever weird reason, felt better. I should of passed out.. I don't get this.. I was actually able to study and that's been a big problem for me lately.. Too tired to concentrate.

So the excessive sleepiness, happened a while back, I first went off a muscle relaxant, then plaquenil, and then neurontin, for I was having side effects to everything. Went into my flare that I used to have constantly before I started taking plaquenil, and I could not stay awake.

I do not have abnormal blood work, just the positive ana and the antibodies to the disease..

Is this part of the disease, or some kind of weird reaction from medications to my brain !!!!!!!!!!! Freeking out!!

01-29-2012, 07:08 AM
Oh, I really feel for you, Shelby. I'm so sorry. The does sound freaky.
Everything about all of this is so freaky (I'm newly diagnosed).
I probably don't have anything constructive or helpful to offer except that I'm hearing you and I sympathize.

01-29-2012, 09:06 AM
Well, I should be happy they wake me up. I've had this happen multiple times. The reason I need neurontin to sleep is because I take medication. Same medication wakes me up during the day ?????????

I thought about asking a pharmacist, but they just go by what the side effects are listed to with medications and don't really give much information beyond that.

01-29-2012, 04:19 PM
I've been going though the same thing. I just cant sleep enough,I think I might be getting bed sores,ha. I thought maybe meds also even though I've been on them forever,but it doesn't seem to make a difference if I take them or not as far as sleeping goes, just the pain and other things I take them for. I can say and this is just from my experience,I have never heard a Dr. give Neurontin to sleep. When you first start it, it's great for nerve pain and to me it really got me moving around cleaning house but maybe that was from finally getting release from the headache I had for years,haha.But back to the sleeping thing,I have a family I should be taking care of,but like you I walk downstairs and go right back up and sleep. It's got to be something their missing. Hope you get rested,lol.

01-29-2012, 10:42 PM
I'm concerned that you have gone off of your meds - does your doc know and approve? Plaquenil is cumulative, meaning that it works best after it has built up in our bodies. You should be consulting with your rheumy about going off of your meds.
We all seem to have problems with sleeping - check out some of the old threads here. I used to pass out as soon as I hit the pillow, and didn't wake up 'til I had slept 7 hours or so.
Those days are no longer! I now have a difficult time getting to sleep, and I wake up every two hours all night, either to go to the restroom, sweating horribly, or having pain and leg spasms - sometimes all three at once! Once I do get to sleep in the early morning, I tend to have a very difficult time getting myself out of bed.
I guess that our bodies are telling us that we need to rest more to make up for the weird things that they are trying to fight.
Talk to your doc about your meds.

01-29-2012, 11:23 PM
charcross, oh my gosh. Sorry your having those type of problems. I'm worried about it. They need to scan whatever part of my brain affects sleep as something is seriously wrong when a person can sleep their life away. My insurance though, would be a joke to get them to approve that. My neuro already tried multiple times to get an MRI on my brain. They don't care what is wrong. My daughter could have appendicitis and they won't approve a CT for her. Stupid insurance company!

I get neurontin for sleep. Something I've discussed with my doctor. He also has me taking it during the day for nerve related pain. Good stuff. But I do wake up a couple of times during the night every night, I however, get a good nights sleep still yet.

I went off my medications last year, it's been awhile, I am back on everything now. The side effects were just too horrible to handle.

My ANA was 1:640 again last week. I don't feel like plaquenil is doing what it needs to to control the antibodies in my blood.. It's nice it keeps me awake, keeps me moving a little, I can do housework and go out sometimes, beats the alternative of sleeping 20-22 hours everyday, but I'm still exhausted and I'm getting sick of it.

I exercise a couple of times a week now, but I guess with chronic fatigue, I should be doing it every day. I also completely changed my diet to raw foods, eggs, whole grain bread, bottled water, and sometimes frozen food but not often. If I do go out of that diet, and eat something, like white bread, or processed food, I feel worse. I've been losing a pound of weight every single day, which I find amazing. I need the weight loss. I'm trying to give my immune system the support it needs to function properly. The medical classes I'm taking really help guide me through what I need to do. I don't know if it will make a big difference, but you don't know until you try.