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Can Anyone Possibly Sleep THIS Much
13 Replies
vavaughn - March 25

So right now my Fibro is absolutely flared up. It is probably the worst flare that I've experienced. During this time, I have done nothing but sleep. For four days, I slept 20 out of 24 hours. As anyone slept this much during a flare? Does anyone have any suggestions how to keep from getting to this point?


January - March 25

LOL! Yes! Once, I collapsed during a "vacation" and slept for about 40 hours straight. As I get older I need at least 10 hours a night, sometimes more.

The important thing to know is that we may LOOK like we're sleeping, but we don't get "normal" refreshing sleep. This is a MAJOR symptom of fibro, and is at the root of many other issues. Please tell your doctor asap, and get some meds to help you get the deep sleep you need. Amitriptyline and Ambien (Zolpidem) are two that may help; you might have to experiment to see what works for you. Along with my sleep meds, I take melatonin and a little niacin. There are some other ideas posted.

Sufficient rest is crucial for us. Right now, if you need to sleep 20 hours, do it. Listen to your body, and don't push yourself. When your brain is sleeping properly, you won't be so exhausted. Take care!



I wish I could sleep that much. I used to go back and forth between sleeping all the time and never sleeping. Now I am back to not sleeping good at all. Even with Ambien I don't sleep well..Sometimes I fall right asleep and wake up an hour later or so. Other times it does NOTHING to me..

I also try Muscle Relaxers to help me.. Someday I will find something that works well. January is right, it is something that take times and different meds to find what "works for you".

Hang in there and listen to your body! If you need to sleep, then sleep! :)



vavaughn - March 25

January -- How did you get others to understand this amount of sleep?


January - March 25

Sad to say, I didn't. And I learned to not worry about it. Eventually, life will throw them a curve ball too - and then they will understand illness. Until that happens, they will just look at you and say "lazy."

All you can do (IF they're open) is try to educate them - explain that the MAJOR symptoms of fibro are (1) SLEEP DISORDER, and (2) widespread pain - and THIS IS NOT VISIBLE like a physical deformity is, but it's just as real and maybe even more disabling. You have to keep reminding people that even though you look fine on the outside, you are exhausted and hurting and this is not going away. (I WISH the TV ads would do a better job of telling the truth about fibro! That's where most people get their mixed up information! Take Lyrica and you're back to a normal active life! NOT!)

Show them some applicable threads on this site. Maybe your doctor could talk to them, and family therapy is a good option too. But it all comes down to this: you must take care of yourself. If someone is giving you a hard time, you don't need the added stress. Please do NOT allow them to abuse you. Tell them to bug off. Tell them to get educated. Shut the door and sleep when you need to. Don't let their ignorance make you feel bad about yourself! You have a real medical issue.

I've had fibro for decades. My "family" and some "friends" were incredibly rude, judgmental and unsupportive - they didn't know anything about what I was dealing with, and never bothered to learn. I have happily waved "bye-bye" to all of those people. Their loss! The people around me now are the ones who really do care about me.

Don't worry about justifying your need to sleep to anyone - just sleep. Your body obviously needs it. Hope you can get some meds soon, I think that will help you out. Also, I hope you've had a good diagnostic workup, as severe fatigue is linked to many different diseases, not just fibro. Take care of yourself.


vavaughn - March 25

Thank you January! I still have feelings of guilt of not contributing to the household or being an active girlfriend. My boyfriend tries his best to understand but is pretty quite it about it. Fibro has cost me so much...I just don't want it to cost me the one I love!


vavaughn - March 25

January -- as for the work-up just started with a new rheumatologist and had the full work-up there were some abnormalities that point to an inflammatory disease. We are trying a new medication for 2 weeks, re-testing my inflammatory levels and sed rate to see if the new meds work. If they do, it will indicate that I need to go on an RA med. The strange thing is I tested negative for RA so the high inflammatory markers and sed rate is confusing my rheumatologist. Thank you again for the "permission" to take care of myself!


mdak - March 25

vavaughn- I was laughing because I just got out of bed myself. All week I have been sleeping extra hrs. I did some fun things which required to use my muscles a lot and I have a sore throat. When I use my muscles to this extent, it makes me so tired. Iknow we dont sleep like normal people. I dont take anything for sleep. I hope next week to get back on track and set the alarm clock. I was wondering if your FM flares up like mine when you use your muscles a lot?


January - March 25

Hi vavaughn - about the boyfriend - and just relationships in general. Counseling is a wonderful teaching tool, and I highly recommend a few sessions. It can help you both learn to express your own feelings and expectations and really "hear" what the other is saying. Most people think they have these skills, but they don't, and communication gets muddled especially under stress - and it's the most important thing!

As for the inflammation. Before you start on a nasty RA drug - especially if you test negative for RA (!!??) check some other things. One thing I highly recommend (and I'm on a crusade about it, so you can read posts on here and also go to celiac forums which are better than websites) is getting checked for celiac and gluten intolerance. I was SO incredibly ill - and had high inflammation markers in my bloodwork. NO DOCTOR ever mentioned celiac to me - I read about it in a Wall Street Journal article on chronic pain! I healed myself enough that some of my doctors became open to learning about it. My rheumy now tells his patients about going gluten free. The diet was tricky to learn 5 years ago (there's more information and support now) - but after a couple years, my pain level was much better! And all my bloodwork went back to normal.

Ask for a celiac antibody blood test now, before you quit gluten. There's also a genetic test. The supposed "gold standard" in medicine is a biopsy of the small intestine. However, I've read that is erroneous! The small intestine is pretty long, and you can have patches of inflammation anywhere - they could take biopsies from healthy areas and say you don't have celiac when you do! So even if you're negative on tests, that doesn't mean you're clear. You could still have a gluten problem. I think the best way to find out is to try the diet. If you get better - there you are! It is super healthy and sure won't hurt you. A great book is Dangerous Grains by James Braly, MD and Ron Hoggan. They list many pages of diseases linked to gluten intolerance. The medical community treats the symptoms of these diseases, but never gets to the root cause! Google "Dangerous Grains" to get started.

Celiac is thought to be so "rare" in the US that it isn't even taught in med school. Some of the latest research I came across says that gluten problems may affect 1 in 7 people! I think this is one possible root cause of fibromyalgia symptoms in certain people, and I think it is responsible for the explosion in obesity - because that's another symptom most doctors don't know about. Your body is starving so it hangs on to everything.

Your doctor is probably ignorant about it, and will refer you to an ignorant GI specialist - so learn all you can before you go. If they even know the word "celiac" they will think it is a GI disease of diarrhea and weight loss, occurring mostly in children. In fact, it is an auto-immune disease of the small intestine and you can go years with NO GI SYMPTOMS. Or you can have "weird" symptoms, oddly like many fibromyalgia symptoms -- unexplained PAIN of various kinds, migraines, severe fatigue, bad teeth, depression, mood disorders, thyroid problems, osteoporosis, infertility, brain fog, dementia, IBS, and skin rashes which are often misdiagnosed as shingles. In fact, there is a skin rash called dermatitis herpetiformis that looks like shingles, but is caused by an allergic reaction to gluten. Another major sign of gluten intolerance is if you get sore red cracks at the sides of your mouth. Another is if diabetes runs in your family. There are so many diseases linked to gluten intolerance or celiac disease. I believe it lowers your immune system and makes you vulnerable to other things too. Since your intestines absorb the nutrients your body needs to function - and since gluten sets up patches of inflammatory reaction that prevent absorption of nutrients - your body, over time, becomes deficient of more and more nutrients, vitamins and minerals. Any system in your body can break down, and will. Because, left untreated, celiac disease is fatal. The treatment is relatively EASY - a strict gluten free diet and extra vitamins and minerals.

Sorry this is so long! I'm a broken record about this disease. I'm angry that I was in poor health my whole life and no doctor ever thought to check me for this! PAIN is a major symptom! I was at the doctor's office the other day and the nurse who checked me in said "celiac? - never heard of it."

I posted all that because it might help SOMEBODY. I don't know if that's what is wrong with you, but it's worth getting checked, since you have unexplained inflammation. Maybe you don't have RA at all! Hope not! Good luck with it.


Noca - March 26

I went 4 days this previous week sleeping 20 hours or so each day. I was completely exhausted coming off 5 days straight of Addy.


kvc33 - March 26

I can't believe that so many people, especially doctors don't know about celiac disease and gluten intolerance. Where I live we have gluten-free bakeries and restaurants! I was shocked and dismayed to see a recent Dr.OZ show with so-called new age health care practitioners recommending diary and grains as a part of a healthy diet. They are so behind the times it isn't funny. I recommended that an overweight friend of mine go gluten-free, she lost ten pounds in two weeks, plus she no longer feel like there is something stuck in her intestines. Flour and water make glue!


January - March 29

kvc - I've heard that before, and it's a good thing to remember about the "GLUE" in your intestines that is caused by GLUTEN! It's so true!

I think I used to like Dr. Oz when he first started on Oprah. But what the heck is up with him? He has dumbed his show down to something I can't bear to waste time on. He could be using his forum to really teach people about their bodies and about medicine. Instead he's turned it into a ridiculous parody of a game show with cabbage and string beans! - doesn't want "scare" anybody by using a real medical word! I keep thinking maybe his viewers could LEARN that big long scary word if he'd just TEACH them.

I refuse to watch him at this point because he is insulting everyone's intelligence. (God help us all if America is really THAT dumb!) And yes, he toes the party line and "plays the game," himself. A shame, when he could be doing so much more.


axxie - April 2

I understand you INPAINDAILYJC, I was sleeping good when I was on amitriptyline then I got weened off of them and put on Ralivia for pain and hormones. I take nothing else and I find that is enough for me, the new doctor that I have say's for many of the women who are menopausal the best treatment is hormones. It regulates your sleep and that helps with reliving your pain and so you can get by with just with a long pain management such as Ralivia time released. I also have a breakthrough prescription when just what I takes doesn't take care of the pain. I have been able to return to work full time, I'm still tired but feeling much better no antidepressant and I feel I'm contributing member of society.


axxie - April 2

Ah let me try this again, my doctor say's that women who are menopausal or after and have fibro the best treatment is to be put on hormones and a long lasting pain drug. So after the antidepressant and everything else I took for my fibro, I am now just taking hormones and 1, 100mg Ralivia which is a time released pain med. If I find that I have those bad flares, I have other pain meds that I switch too and leave out the Ralivia because of the side effect.

So far, it's been almost a year, and I was able to return to work part-time and then in January of this year I am working full time.

I know because of factors some doctors will not treat women with hormones because they say you have a 5% chance of cancer, but it beats being in pain and not being able to follow your family and feeling depressed etc.

I still deal with overall pain, but much less intensity and don't have any depression result of the hormones. It also helps to regulate sleep which promotes with restful sleep, that deep repair sleep that you need.



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