Originally Posted by Glojer
Neveragain, did you have a thyroid bloodtest done? That is a very important thing to have done and to work on if your numbers aren't good. If you have the test or have had the test, you need to get a copy of your bloodwork and read it for yourself and do some research. Many docs just go by what the lab says, and if it shows in range then they say you are fine. You also need more than just a TSH done, you need the Free T4 and Free T3. They all need to be in range. I only bring this up because of how much you want to sleep and then of course the fatigue, which doesn't go away totally for me even when my thyroid is at optimum for me. Then of course the pain for me is worse when I am hypothyroid. It is amazing how some of us really need to have our thyroid numbers good to be able to get the fibro under as much control as is possible. This is just a suggestion. I am dealing with VitD deficiency, hypothyroid, and now I have learned another little goody that some times having a low ferritin level can be a problem. I have yet to look into the ferritin thing.
I totally relate to your fatigue and sleeping all the time. Oh and yes I agree, sleeping too much does make you feel worse. I have said that for years, but when you are so tired and fatigued it is hard not to sleep. My solution was the thyroid.
My 2 cousins, my 2 sisters, & my brother, and I, have all been said that we are genetically cursed that we will end up with this supposedly rare thyroid disease that our grandfather had that all of his grandchildren will end up getting. This doctor, in my opinion, was a little bit too sure of herself. My older sister is the only one with the thyroid disease at this point. Yes I have had my thyroids checked, and they are okay. I just don't think I should be second guessing what my doctors seem to think is normal in range but thank you for the advice. Maybe I will consider going to this doctor and getting checked sometime in the future though. She wanted us all tested by her, guess it couldn't hurt anything looking into it. But I have really never heard of, except by word of this doctor, that there is a such thing as a rare type of thyroid disease.
On the days that I really oversleep, are the days, I think dying would be easier than living. In fact, when I was in my bad mood, in one of the earlier posts, it was one of those days.
I know exactly what you mean, and I know it's difficult to fight not taking daytime naps, or to stay in bed half the day, or even to get up of the morning, because you know it's going to just be another day of chronic fatigue & pain. Who looks forward to that? I sure don't. But that has to be one of the worst things you can do to yourself. There are days, that I have slept 20 of 24 hours. I don't work so I don't have a job to get in the way of when I want to sleep, & housework, it can always wait until I have a little more energy. Sleeping longer does not in any way shape or form make you more rested or promote more energy. Weirdly enough, it has the exact opposite effect. The days I oversleep, are the days I feel my very worst. When I wake up in the morning, I don't get up, I do whatever I can to fall back asleep, even though sometimes it's really difficult.
This ebook I bought online, basically talks about your 5 stages of sleep, and explains when you oversleep, why you are causing yourself unnecessary sleep fragmentation, it has you to chart down how you sleep every night for about a week, then you can determine through a chart they provide how much sleep a night your body needs, then you take that information to make a schedule of how long you are going to sleep during the night, and go to bed the same time every night & get up the same time every morning, and stick with it. It's claim is to stop fatigue and bring on alot of energy by doing so. Now I honestly don't think that's true, but I think the program can be helpful at least.
I may never be able to properly go through my stages of sleep and feel completely rested, I've been told I wake up 150 times a night (unaware), and I have mild sleep disordered breathing, that gets worst during REM sleep. Like an idiot, I sold my CPAP. Every time I wake up, it is while I'm in the middle of a dream. There is no way my sleep will ever be too restful without that CPAP. But I really hated that thing. They claim if you don't go through the stages of sleep properly, it can make you feel awful. I think when you wake up in the morning, you are supposed to be back in stage 2 sleep. I am always in stage 5.
Another problem I've had is repeadedly waking up during the night, being aware of waking up, that is in itself, quite horrible in the way it makes you feel. Sometimes I was going to sleep by 6 or 7 PM. Big NO NO.
The past two nights, I have fought this whole oversleeping thing, and it's not easy, but I will just watch movies until midnight hits around, or like last night, me & my daughter just played board games until that time rolled around, anything to get my mind off of the whole "sleeping" thing, I go to sleep around midnight, and amazingly can sleep till around 6 am without waking up. I'm used to waking up like 11pm, 1 am, 2am, 3am, 5 am (I'm sure you get the point) but it really makes a difference. I go back to sleep 1/2 hr to an hour later and sleep till around 9am. By the time I go to sleep I am exhausted but I have been waking up with more energy than I have had in a very long time. I'm still tired but nothing NOTHING like I was. I can do my housework without making myself in total misery from not wanting to do anything whatsoever.
This has been so horrible for me and consumed my life so badly, that I mind as well be paralized from head to toe in a wheel chair. The only person I know who has these same type of problems I do, is my mom, and she at least has a known cause for her troubles. But she still however has the get up and go to make herself work. I can't even do that and she's twice my age.
I used to not even believe in CFS or FMS. The whole thing of it existing but no blood test can prove it, with no cause, no cure, but the worse I would get, and the harder I'd try to figure out why, only to land on my face, the more I'd believe it has to be real. The only reason my doctor diagnosed me with Fibromyalgia was because he didn't know what else could be wrong. My rhematologist argued it was early stages of Lupus, but I really don't believe that. There's still doctors that don't believe that Fibromyalgia is for real. After 12 years though, I have had a serious change of heart.
Someone with Lupus, can at least say, I know why I feel horrible. With Fibromyalgia, there's a big question mark ????????????????????? as to what is the cause behind it. There's no explanation whatsoever. It's really horrible to have something consume your life so bad that you can't even function, to not get a reasonable explanation as to why. I thought it was worse. I never considered myself to be the lucky one, but I am. I mean, someone with Lupus may know why they are sick, but there's nothing they can do, to ever get rid of that. With Fibromyalgia, you at least have a fighting chance. It isn't like they know why you feel this way, is it? Who's to say it's not curable?
I have went through tests after tests after tests. I'm sure alot of you know exactly what that's like. Trying to find that answer to come up with absolutely nothing. In my opinion, this is telling me, that this illness has to be coming from my lifestyle choices. I have physical health problems, but I don't think anything wrong with me explains these kind of problems. Even if doctors can't explain it, there is a reason behind Fibromyalgia. No one could feel that horrible without a cause.