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Adrienne Dellwo

Hallucinatory Dreams - Part of Fibromyalgia & Chronic Fatigue Syndrome?

By August 11, 2011

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Very few sleep problems would surprise me when it comes to fibromyalgia and chronic fatigue syndrome, but a recent comment from a reader made me wonder -- is this yet another symptom that's just under-recognized, or is something else going on?

Yvonne wrote:

"[I'm] waking constantly night after night with stupid or scary dreams because the part of the brain that goes into REM sleep isn't working properly, so dreams become more like hallucinations."

I don't think what I sometimes experience is exactly like what she's describing, but sometimes I have dreams start in (or continue into) a semi-waking state, and it's difficult for my consciousness to separate dream from reality.

So what's going on here? Is this part of our illness? If so, it's not one that the medical community (even the ones who get it!) recognize, and it's not one I've heard of in the patient community until now.

What it does make me wonder about is narcolepsy. One symptom of narcolepsy is hypnogogic hallucinations, during which you can hear, see or feel things that aren't there as you start to fall asleep. They're often intense and frightening.

I suspect that this sleep disorder is far more common in us that we realize, and I've written before about how it could be easy to misdiagnose either narcolepsy or chronic fatigue syndrome as the other.

In studies, the narcolepsy drug Xyrem (sodium oxybate) is shown to be effective against fibromyalgia symptoms, and those results are reflected in the experiences of many people who've tried it. (The only reason the FDA didn't approve Xyrem for us was because of the associated dangers.) This suggests that something similar could be going on in the brain.

So I have to wonder -- how many of us who are diagnosed with fibromyalgia or chronic fatigue syndrome have experienced this symptom, or something similar? If so, have you ever been tested for narcolepsy? Leave your comments below!

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Comments
August 11, 2011 at 4:42 am
(1) John says:

My own experience with CFS began seven years ago with hypnagogic hallucinations and sleep paralysis episodes on a nightly basis. After two detailed sleep studies, doctors said I had a partial form of narcolepsy.

The studies showed that there was no slow wave sleep. I asked the doctor about fibromyalgia/CFS, and he simply said, “There is no such thing.” So began a frustrating experience with the world of medicine and its view of CFS.

Finally, this year, I was diagnosed at Mayo Clinic in Jacksonville, FL. And yet it was not an MD, but a PhD in the pain management office that recognized the pattern of symptoms I was experiencing.

I have tested positive for Epstein Barr virus last year and this year. From what I have been able to piece together, it is the viral load causing damage to mitochondrial DNA that is responsible for much of what we experience as patients.

August 11, 2011 at 11:17 am
(2) Hattie says:

Im expericing the same and Im here n Jax but cant afford 2 go to Mayo.I’ve told my doctors at Shands about not able 2 sleep and all the different pains in my body besids the disk degenation pain,plantar ficilitis,hypertension, depression,anxiety,etc. but they give me excuses like:I need 2 have another back surgery and losing weight(Im only 225lbs.)God Bless

August 11, 2011 at 1:02 pm
(3) Vatsal Thakkar MD says:

John, it’s unfortunate that you were told you have partial narcolepsy, no SWS, then that there was no connection being made to CFS/fibro. The lack of slow wave sleep could be driving the whole picture.

August 12, 2011 at 4:58 am
(4) Mindy says:

Dr. Thakkar, I have been diagnosed with Narcolepsey and Fibro/ CFS and I also Apha Wave Intrusion, The only medication I was given was Provigil to help with the daytime sleepiness. Is there another med that would be good for HS? Thank You!

August 19, 2011 at 9:46 pm
(5) Dana says:

Hi John
May I ask what treatment they put you on once you had a dx of Epstein Barr virus?

August 21, 2011 at 7:42 pm
(6) Mary-Anne says:

Hi John,
I can’t think straight because I’m crying! Ditto to everything you have said. I had Epstein Barr and kept telling doctors that I had never gotten over it. I kept saying if I could get a good night sleep and stop the crazy dreaming it might help. I was sent to a sleep clinic and told them that I never really went to sleep properly and the dreams felt like everything in them really happened. They were all about being attacked in some way and I could feel the pressure of a bullet or arrow or heat from a explosion. I would try to wake fully but I couldn’t move. I was told that it would be a good idea to see someone in mental health!!!
Thankyou for sharing.

August 11, 2011 at 5:43 am
(7) didy says:

i have sleep paralysis issues for almost 10 years. i have nightmares and i hate sleep time. i have continuous fatigue and pain in the body since 5 years

August 11, 2011 at 5:47 am
(8) Janet says:

I rarely remember my dreams. But the other morning I woke up, stretched, found all the hurty bits (that’s a technical term I use often), rolled out of bed, put my poor sore feet to the ground, wrapped up in my dressing gown, walked out of the bedroom – and woke up. I’d been dreaming and I had to go through the WHOLE process again! How happy was I?
I often partially sleep – that is, I am conscious throughout the night, I know what time it is and so on, but I can’t move and can barely feel my body.
Weird huh?

August 11, 2011 at 12:50 pm
(9) leorising says:

Hahaha, I often do that, at least once a week, I think — dreaming of waking up, then having to do it all over again. It’s especially bad when I need to pee, because it just gets worse over time. LOL!

August 29, 2011 at 10:02 pm
(10) Serena says:

I get this ALL the time. I’ve been furious at friends before who have hurt my feelings for days and then I’ll finally confront them about it and find out it never happened… it was all a dream. Or I’ll wake up and go to class or work or something and realize when i really wake up that i was never awake. I’ve gone to sleep, woken up in my dream, then gone to sleep in my dream after a full and and woke up in real life, I was off a day for almost a week. I used to be on sleeping pills but it totally zombie-ed me out so I asked my dr to take me off of them. Now I sleep like crap and feel exhausted but at least I’m not dreaming ten hours straight every night. Getting “stuck” in your nightmares sucks big time!

August 11, 2011 at 6:17 am
(11) Tim Perry says:

Ive had FM/CFS symptoms for about 4 years now. Strange dreaming has become very noticable in the last couple of years. Very vivid dreams. Occasionaly waking up and needing think briefly through the events of the dream to decide it didnt really happen. Sleepwalking 3 times. Hovering between dreaming and conciousness. Dozing off for a couple of minutes during the day and having vivid dreams that seem to last much longer

August 21, 2011 at 7:56 pm
(12) Mary-Anne says:

Hi Tim,
Ditto to you as well. I can be watching TV and nod off for a couple of seconds and dream in that short time.

August 11, 2011 at 7:26 am
(13) Nancy A. says:

Some medications that fibromyalgia patients take can be partly responsible for strange dreams and nightmares. This happened to me when I took Cymbalta. I took it for a month or two and had to quit because sleep was no longer a happy escape for me — it was literally a nightmare! I’m back on doxepin now. I still have vivid dreams but very rarely have disturbing dreams like that anymore.

August 19, 2011 at 8:05 pm
(14) fussbudgetsppp says:

Ever since I began taking AmbienCR(6.25mg) each night, I have experienced very vivid nightmares. I have always dreamed in color, so dreams seem real, but I have been having more nightmares that usual. Before I began taking Ambien I was in pain all night and when I did fall asleep, I sometimes woke myself up screaming or running out of the bed and halfway across the room. At least Ambien lets me sleep better than that! I have tried taking Lorazepam(1mg) at night instead and I am able to sleep without the nightmares. My primary care physician prescribes the Lorazepam for anxiety. My psychiatrist is responsible for the Ambien. He says that Lorazepam reduces anxiety and Ambien does not. But he says patients develop tolerance to Lorazepam quickly and then have to take more of it until they are in trouble. I am planning on discussing this situation with my primary care physician and see if he has some sort of solution. He only gives me 30 tablets per month, so I have been using Lorazepam at night when I have something coming up the next day and need to get better sleep than I do with the Ambien. DO NOT take both Lorazepam and Ambien at the same time(a warning from my psychiatrist).

I did have nightmares before developing Fibromyalgia and before taking Ambien, but they were never this vivid or so prevalent.

It seems like this is a mixed situation with no easy solution.

August 11, 2011 at 10:23 am
(15) Edward Omahkataayo says:

Tawnshi,

I have very weird dreams all the time, plus I guess what you would call waking dreams, sometimes these dreams are very scary or just plan weird. I also have the same dreams all the time. But the weirdest thing of all is I fall asleep all over the place, even while I’m walking, some times I will fall down and other times I will be sound asleep standing up in the middle of the floor, my wife sometimes finds me this way and wakes me. I have seen the doctors about this and they said I am not narcoleptic, and I went to a sleep clinic and was advised my problem came from Chronic Fatigue Syndrome, Fibromyalgia.
What do you think?
Marsi,
Ed

August 11, 2011 at 12:59 pm
(16) Vatsal Thakkar MD says:

Ed, what you describe sounds highly suspicious of cataplexy which is associated with narcolepsy. You should probably have a repeat sleep study w/ a neurologist (w/ an MSLT test).

August 11, 2011 at 10:48 am
(17) Rachael says:

I too have had very frightening dreams, sleep paralysis, hallucinations (spiders) and have experienced The “Old Hag” Syndrome.

“You wake up unable to move, barely able to breathe… you feel an oppressive weight on your chest… and you sense some evil presence in the room… The old hag strikes!”

The phenomenon occurs to both men and women of various ages and seems to happen to about 15 percent of the population at least once in a lifetime.

http://paranormal.about.com/od/humanenigmas/a/Old-Hag-Syndrome.htm

http://en.wikipedia.org/wiki/Sleep_paralysis

August 11, 2011 at 12:42 pm
(18) Vatsal Thakkar MD says:

Very interesting board and replies. To all: I’m a psychiatrist in NYC and there is evidence that many ailments (such as CFS and fibromyalgia) probably stem from non-restorative sleep. It seems that many doctors either don’t know or care to know some of these links.

August 11, 2011 at 1:06 pm
(19) Vatsal Thakkar MD says:

Just wanted to add that chronic non-restorative sleep has been linked to: pain, fatigue, depression, anxiety, irritability, distractibility; as well as obesity, diabetes, and hypertension. Perhaps we need to be treating the potential sleep disorder?

August 11, 2011 at 3:21 pm
(20) Adrienne Dellwo says:

I definitely believe that many of us would feel better if our sleep disorders were properly treated. I know it’s helped me tremendously. ~Adrienne

August 12, 2011 at 5:04 am
(21) Mindy says:

Dr Thakkar, I assumed you were affiliated with about.com, Thank You for taking the time to read this and actually listen to us. I am very concerned that the medical community as a whole just brushes this off and it is a severe syndrome.

August 12, 2011 at 3:51 pm
(22) Dawn says:

I’ve had a sleep study done prior to being dxd with Fibro and one done 4 yrs later. The second sleep study showed that I don’t achieve REM sleep which I believe is true. I used to have very vivid bad dreams and nightmares prior to the the Fibro dx. Now I no longer dream, which in a way is a blessing. What can be done to get the REM sleep my body needs? Honestly at night the only way I can go to sleep is if I take 1 mg of Xanax. I’ve tried many prescription sleep aids and none of them work.

August 11, 2011 at 12:48 pm
(23) leorising says:

I had a sleep study done several years ago, and besides a mild sleep apnea, they found that I almost never leave REM sleep. I’m dreaming continuously, and I believe that my complicated and hallucinatory dreams are directly related to that. If I got down into deeper levels of sleep once in a while, the dreaming would be broken up. As it is, I have a long “story line” all night, and often wake up still trying to work out problems I encountered in the dream!

It’s like I’m working hard all night long. Not restful at all, no.

August 11, 2011 at 12:56 pm
(24) Vatsal Thakkar MD says:

Too much REM sleep at the expense of deep-stage sleep is a hallmark of narcolepsy. A sleep study with an MSLT the next day (to see if you go into REM when you nap during the day) is diagnostic for Narcolepsy.

August 11, 2011 at 2:23 pm
(25) leorising says:

Wow, thank you for that information, Dr. Takkar.

August 20, 2011 at 12:32 am
(26) Mary says:

leorising,
That is EXACTLY what I have been saying for YEARS. I feel like I work all night and get up exhausted. I have had one sleep study and they did dx sleep apnea but not nothing else.

August 11, 2011 at 1:54 pm
(27) Maria sc says:

I’ve had vivid dreams on an off during childhood, but once I was diagnosed with Fibromyalgia-the vivid dreams/nightmares are more frequent. It sometimes is so scary when I wake up and it feels like the dream actually happened and sometimes I have panic attacks right then because I cant tell what is real and not–mostly right when I wake up after a really vivid dream or nightmare. I’ve noticed that these happen when I have bad pain days or flare ups which is alot and worse in the winter months. I think this has to be related to Fibromyalgia because I didnt have these types of dreams as frequent as I do now.

August 11, 2011 at 2:08 pm
(28) fogmom says:

I have vivid dreams and nightmares. I seem to be awake but the dream continues. I’ve woken up my husband because I thought there was a man standing at our bedroom door. I’m sitting up and talking but I’m still seeing my dream. The stories of what I’ve done in my sleep go on and on. The thing is I’ve had these problems since I was a child. So is the dreaming problem a precipitator to fms, or coincidence. Or is it just the brain type is more susceptible.

August 11, 2011 at 3:15 pm
(29) Lisa Riley says:

I have been diagnosed with Central Sleep Apnea, Fibromyalgia and all the other lovely things that often accompany that. I rarely dream or remember them, however when I start to fall asleep during the day at inappropriate times, that is when it is hard to distinguish between dreaming and reality. They are so vivid and I am sometimes not sure if it really happened or not. I feel very confused and disoriented. I have even fell asleep while driving and in the middle of a conversation and I was the one talking. Now that I have started taking Nuvigil it doesn’t happen as often.

August 11, 2011 at 3:27 pm
(30) Pamela says:

I too have very vivid dreams/nightmares that continue after waking up and cause me to have severe panic attacks. I also seem to be awake all night ie:being aware of the time and aware of what is happening around me even though I am sleeping. It is a very strange and confusing sensation. Like Maria, these seem much worse when I am having a flare or there is intense stress in my life. The really weird thing I experience is that after I am awake the dreams continues in my head and the visions that were in the dream roll like a slot machine untill I am dizzy and light headed. It is very frustrating and disturbing. And no one can seem to explain why this is happening.

August 11, 2011 at 4:30 pm
(31) Rachael says:

As a child I had this bizarre, scary condition, that when under stress I would develop hallucinations, such as time speeding up; the clock ticking faster and faster and everyone talking fast and moving about quickly. Water would flow more rapidly and some objects would appear larger or smaller than they actually were. It would only last a short time about five to fifteen minutes, but afterwords I would develop a severe headache. This occurred about ten times during my childhood. I have since found out that this condition is a form of childhood migraine and it has a name “Alice in Wonderland Syndrome”. Lewis Carroll who wrote Alice in Wonderland was believed to be inspired to write the book by his own migraine experiences. I don’t know if childhood migraines relates to the nightmares and sleep problems I experienced later in adulthood, or if anyone else experienced this as a child. BTW, I have been a CFS sufferer for 25 years.

http://www.migraine-aura.org/content/e27891/e27265/e26585/e43013/index_en.html

August 11, 2011 at 5:35 pm
(32) caroline mc namee says:

I suffer from fibromyalgia and have done for two years but only found out about ten months ago what I had. I have very poor sleep pattern and dream the weirdest dreams and when i wake out of them takes me a while to realise they are not real. Sometimes my dreams are so real I think I am awake. I look at clock every hour on the hour and never feel like i have gone to bed.

August 11, 2011 at 6:55 pm
(33) Elle says:

I used to suffer from night terrors and sleep paralysis regularly, it has lessened now that I take sleep medication and Theanine. But holy geeze was it frightening.

August 11, 2011 at 8:42 pm
(34) sheri says:

I have dreams that when I wake up,they seemed to have really happened,I have trouble telling what is real and what isn`t,I also see things like people and animals that I`ve known but are now dead,I see them out of the corner of my eye,but only when I am really exhausted,I`m afraid to tell my dr. for fear he will think I`m nuts

August 11, 2011 at 10:43 pm
(35) Tammie says:

Actually this is so common with ME/CFS that there is a term for it :narcoleptiform sleep disorder or somethign very similar to that. Unfortunately I do not have the references I have read about this in front of me, but I have read the same or similar stuff from several ME specialists.

I do also know that the newest definition of ME (the international criteria) addresses sleep issues including circadian rhythm disturbances (and narcoleptics have those, too).

Insomnia is also very common among us and (believe it or not) people with narcolepsy…..awake all night, sleeping all day.

I have read a lot about this because I have every symptom of narcolepsy and my circadian rhythm is so messed up, it makes it impossible for me to function during normal hours.

August 12, 2011 at 12:46 am
(36) rob hynes says:

so absolutely low-priority symptom; hard to believe it warrants an article.

August 12, 2011 at 6:27 pm
(37) Diane says:

Rob, for those of us that experience these vivid, life like dreams on a nightly basis, it is not a low priority. I am grateful for this article to know that my experiences are not unique. I have been trying to deal with this for 7 years and my doctors just tells me its part of ME/CFS. The dreams are disturbing, stressful, extremely detailed and go on for hours each night.

August 12, 2011 at 8:34 am
(38) Heather says:

Before I was on any medications for fibro, I would have these memories of conversations I had with my co-worker or my boss and I would act accordingly.

Imagine how upset/confused I was when my boss would say she never told me to do something that I REMEMBERED she said.

I finally realized I was DREAMING conversations so vividly, that I thought they were real. At that time, I would often close my eyes at night either feel like I was half-awake all night or I would close my eyes and it felt like seconds later, the alarm was going off and I didn’t feel at all rested. It felt like a joke.

I have one memory of a sensitive conversation that I don’t know if I ever had with a friend of mine. It wasn’t the kind of thing you bring up later and ask if it happened or not.

Well, I now have a sleep apnea and upper airway resistance syndrome diagnosis, but I had been tested for sleep apnea in 2007 and they said I didn’t have it. So, I’m still left feeling like something else could be going on. I’m a month into using my CPAP and I’m hoping I’ll soon get relief of my daytime fatigue. If anyone has any ideas on this, please share!

August 12, 2011 at 3:55 pm
(39) Lucy says:

I had bizarre dreams for years. then I realized I was also toxic on SSRI medications. When I stopped the SSRI, the bizarre dreams stopped as well.

I have sleep apnea but I don’t have bizarre dreams if I stay away from SSRIs and drugs that potentiate SSRI like Ultram.

So, the first thing I would look at for weird dreams would be medications.

August 12, 2011 at 4:00 pm
(40) Janet says:

I am so glad that you did this article. It’s one more of those “I’m not alone” moments.
Thank you, Adrienne, for the article and everyone else for sharing their stories.

August 12, 2011 at 6:02 pm
(41) Kathleen says:

I agree Janet! This is one of the many reasons I love this forum. It’s always so comforting to know you are not alone! Reading this all I could say was WOW! So many of these articles could have been written about me!
I, too, would like to say thank you Adrienne for always hitting on the topics that concern us the most. My dreams are so vivid it is like I am living them :(

August 12, 2011 at 4:35 pm
(42) Karen says:

I have been diagnosed with CFS, and I also have sleep apnea. I use a sleep machine at night, which is supposed to give me a better night’s rest, but I don’t find any difference.

What I am finding though, since I started to use the sleep machine, is that I get very long dreams. Almost like a movie, with a start and an end. I have always dreamt in color, so I can’t say if the colors look more vivid, since they really look the same. The big thing to me, is the way the dream runs on and on and on, and then I wake up. I sometimes think am I now awake or in a new dream. Then I realize that I am wide awake. And this can happen an hour after I have fallen a sleep, during my sleep, or just before I am supposed to wake up.

August 12, 2011 at 4:55 pm
(43) RAGdoll412 says:

As a child I used to have nightmares. But lately if I dream I seldom remember them. I frequently get sleepy during the day and if I am reading or watching TV I will doze off and my mind will keep on like I am still reading or watching TV but the information takes on its own distorted version of the actual information. Eventually my minds story does not make sense with the actual story and it brings me back to reality. I hope that makes sense because I don’t know how else to explain it.

August 20, 2011 at 8:18 am
(44) Shelly says:

Yes, it absolutely makes sense to me!!! Like you, I had many nightmare and night terrors as a child that continued into young adulthood.
I love to knit and crochet, often I will doze off in the middle of my work, thinking I am still awake and working on the piece, then come to and realize I wasn’t working on it at all!!! The same with the mind stories, when it starts to make no sense, I slowly come to and realize I had fallen asleep!

August 12, 2011 at 4:56 pm
(45) Susan Sumrall says:

After tracking my activities and way I feel each day for several months, I discovered that a flare/crash is coming if I experience wild,full color, vivid (I’m talking worthy of a Disney film) dreams for several nights in a row. Now, when these dreams come, I know I need to be extra gentle to myself and cut back on activities; this usually prevents the flare/crash.
I have been dealing with both fibromyalgia and chronic fatigue syndrome since 2000 after a bout with the flu.

August 12, 2011 at 7:48 pm
(46) Rita says:

I have had Fibro since the mid 90′s and only recently have begun having nightmares. This is a new symptom for me. I don’t know that the pain has gotten worse and or that my sleep has become more disturbed. These dreams are horrible. I’m also afraid to go to sleep at night. Not sure what is going on. Wondering if this maybe from years of pain and sleep deprivation finally catching up from me.

August 12, 2011 at 7:53 pm
(47) Carole says:

Yet again this forum has provided an opportunity to learn that bizzare symptoms are not mine alone – strangely comforting and very helpful information/ammunition to gather for future medical consultations. I now consider myself very fortunate as most of my dreams are not terrifying, but do take place in full technicolor and generally the story line has a beginning, middle and end. Whenever there is a change to meds, the frequency of dreams oscillates wildly for a couple of months and settles back down to the “normal” for me. I also experience waves (that might last months) of feeling that I have woken up every ten minutes the whole night.

August 12, 2011 at 8:10 pm
(48) Mbloom says:

I cannot stress enough that this should not be pooh poohed. For me this was as incapacitating as level 9 pain. Going from this kind of sleep to severe pain when awake is torture. The SSRI meds made it worse. Narcotic pain meds-especially the synthetic ones made it worse. And then comes the problem that the doctors are pretty much useless with this.
I have been at this more than 21 years now and have learned a few things that have been helpful for me. I will not do narcotics or SSRI. Low dose naloxone is helpful. Ropinerol is helpful. Xyrem resulted in me being awake and paralyzed. CPAP helped but not as much as the sleep specialist said it would. BIPAP and an oxygen condenser have been much better. I do not know that what works for me will work for you. That seems to be part of the quirkiness of our illness. I am glad we are addressing this. It does help to have others to chat with. I do not sleep well without L tryptophan and melatonin but with them sleep is nearly normal. Thank you Dr Thakker for your comments.

August 12, 2011 at 8:55 pm
(49) kathe says:

Like so many, I experience night after night, what seems like all night long, hallucinatory dreams that i remember for days. Sometimes they are scary and stressfull and I awake with heart pounding. Sometimes they are sad and i feel sad for hours. Sometimes they are just goofy. But they ALWAYS intrude on what little restorative sleep I can get and I’m ALWAYS exhausted from them. I also monitor and critique them while I’m having them. I’ve had three sleep studies over the years and also tried a day time sleep study for Xyrem/narcolepsy but I can never get to sleep well enough. Not at all for the day time study. I can’t tolerate any of the drugs for sleep–antidepessants, including trazodone, melatonen and other natural remedies. My diagnosed mild apnea turned out to be sinus congestion blocking my breathing pathways. It’s been 30-some years of insomnia–3-5, rarely 6, hours a night , and I and my fibrofog are desparate for restorative sleep.

I’d say ths is definitely a symptom–or cause– of FM. I wish it were a research priority. Thank you to Dr, Thakker!! Thank you, Adrienne, for this discussion.

August 12, 2011 at 11:10 pm
(50) Maria says:

I have definitely experienced the sleep paralysis. It was worse before I was put on anti-depressants, though.

August 12, 2011 at 11:12 pm
(51) Maria says:

I should’ve also added that I have had hypnogogic hallucinations.

August 13, 2011 at 5:03 am
(52) Colleen says:

I’ve been diagnosed with fibromyalgia and I was hoping the cymbalta that helped with my pain would work on the constant fatigue, but its only gotten worse. I think I might have CFS, but this post was interesting because I have an unusual amount of dreams that I remember and I always feel close to awake when I have them. I’ve always suspected that being able to remember all these dreams meant that I wasn’t sleeping well enough, but its interesting that this could be another symptom or clue rather to what the problem is. I’m always scared to bring up symptoms though because when you have so many (and dreams are a weird one…) the doctor starts to look at you like you are a hypochondriac…

August 16, 2011 at 10:30 am
(53) Heather says:

Colleeen, if you haven’t been checked for sleep apnea or seen a sleep specialist, I would urge you to get checked out. Your experience sounds pretty similar to my own and I’m diagnosed with mild sleep apnea. I remember my dreams because when I’m entering dream sleep (REM sleep), the muscles in my airway relax and block my breathing causing obstructive apneas. Just a thought. I’ve got a CPAP machine and I’m still adjusting to it, but I find it helpful. My pain is at a minimum and I’ve had restorative sleep but I think I have a huge sleep debt so after a month of using the machine I still have fatigue — but not the crushing EXHAUSTION I’m used to having! I’ve also been able to be more active.

August 13, 2011 at 8:10 am
(54) Joe Stoddart says:

I’m relieved to hear others complaining of these nightmare issues. For a long while now I often wake up in a most worrying way, not knowing where I am and thinking I have heard or seen things I know cannot be there.

August 13, 2011 at 8:21 am
(55) Emily says:

I could have been the poster child for this post. I suffer from everything you listed. Last night was a classic. I was dead tired, my eyes were burning, yet I could not sleep. I have Mania, as yet untreated bc too many other things are going on. Then when I did sleep I had the worst nightmares. The kind that could possibly be true so you can’t wake up for them which were symbolic of my friends abandoning me because I am so sick.

BTW, our drugs can do a major trip on us. I stopped all my sleep medications, they were making me go into a hypnogogic state before I even fell asleep. The only thing I am taking to sleep is Xanax and Benedryl.

August 13, 2011 at 9:35 am
(56) Shawna says:

First off, I haven’t read any of the comments yet so I can post what happens to me without being influenced by everyone else.
After taking Elavil for sleep for 5 years, it stopped working for me. During the night, I would wake up several times and even though my eyes were open and my body was moving around, the dream would still keep going, superimposed on my view of my bedroom. It was frightening at first but after a while, I came to expect it. Now I am on Trazadone, and thankfully sleeping through the night. Someday when it stops working, I will have to remember the hallucinations can occur so I’m not frightened again.
Now, I will go read the comments so I can say “Meee Too!!” ;-)

August 13, 2011 at 10:33 am
(57) Nitalynn says:

Trazodone is an antidepressant that is often given to help with sleep problems in fibromyalgia. Many years ago after having my now 30 year old son I suffered with post natal depression and was given it. I was really far down and no one was helping me remember to take my meds at first and I apparently missed several doses and went back to the doctor to be tested for level which were of course low so he doubled my dosage and at the same time my husband started monitoring my medications. I started having dreams like were mentioned. I went back to the doctor and he adjusted the medication downward and they went away. Too many or rather much of SSRI’s can cause a condition called Serotonin Syndrome. It would be good to talk to the doctor about possible drug effects, interactions first when you start having such problems.

August 13, 2011 at 3:11 pm
(58) Pashta says:

So glad to read these comments — like others, I thought I was alone in this. I was diagnosed with M.E. over 25 years ago. I have had sleep apnea tests, but nothing resulted from them. I also have night seizures that have never been diagnosed — although they don’t seem to be directly connected to the dreaming (just not getting enough sleep). My dreams often start or continue while I am awake (before sleeping or upon waking for a while) and aware of my surroundings — and as one person noted, then have odd dream-like episodes while awake (although I have learned to just accept them and get on with it). I also get confused upon waking, thinking that the dream is real and that “I must deal with … right away” — with it taking me 10-15 minutes to figure out that it isn’t. One thing I didn’t see commented on is actually ‘hallucination dreaming’. In mine, I am asleep, wake up, get up, discover that there is something wrong with my apartment, and then realize that I am hallucinating in my dream and need to wake up — and wake up, get up, discover that there is something wrong with my apartment, and then realize………………usually 6-8 times before I truly wake up. I get up, take Bach Flower Rescue Remedy, and walk around (settling into ‘normal reality’ for a while) and then go back to sleep — otherwise, I will likely go back into the hallucination-dreaming again.

August 17, 2011 at 11:12 am
(59) Kathy Wilding says:

Pashta, I was so relieved to see your comments. I have fibromyalgia and am very sensitive to medications. I don’t take any prescription meds. These dream-like episodes while awake have had me so frightened. I wondered if I was having a stroke or maybe the beginning of some type of dementia. Until I saw your comments and a few others I had no idea anyone else had experienced this. Thank you so much for sharing.

August 13, 2011 at 3:58 pm
(60) Cindy says:

I can’t remember when I didn’t have sleep problems. I have very vivid dreams, mostly nightmares. I did a sleep study and they said I didn’t sleep enough to get any information. But I’ve always wondered what the point of the studies are. I know I don’t sleep well. I take medication for sleep. What else can they do about it. Is there a point in getting another sleep study done?

August 13, 2011 at 4:22 pm
(61) Barbie says:

I don’t think of my dreams as nightmares. But I can be dreaming something get up go to bathroom and continue dreaming same dream. Also I can continue a dream story another time like a soap opera. Then cause this has been going on for so long I don’t know what I dream or if some thing really happened. My husband has to wake me up sometimes cause I’m sobbing also had dream where I think I’m awake then when I really wake up everything is different than awaking in my dream. LONG LONG time this has been going on. Did not think it had any thing to do with my condition. Interesting THANKS for all comments and this blog.

August 13, 2011 at 11:12 pm
(62) OzarksUSA says:

I’m 30 and I’ve had Ehlers-Danlos Syndrome (EDS) since birth and since childhood Fibromyalgia. They think that my EDS caused my fibromyalgia. I think I developed ME/CFS a year and a half ago, but my rheumy refuses to believe that a person can have fibro and ME/CFS.
My husband says I have brief periods of confusion in my sleep, but I don’t snore, stop breathing, kick a lot, etc. It is almost impossible to sleep without my Flexeril. When I sleep I wake frequently to pee all night and toss and turn all night long. I definitely don’t have sleep apnea or restless leg syndrome. I have very vivid and terrifying nightmares almost every night, though I don’t ever wake up feeling like I am restored. (I should add that I have PTSD.) I don’t think I hit restorative sleep. I sometimes call out or cry in my sleep because the dreams are so real. Sometimes I’m very close to consciousness (but not quite there) while other times I’m very much asleep. I fall asleep all day long, just an instant after I drop off, I wake with a start. I even fall asleep sitting up typing or drinking a soda. The next instant I’m awake, but I feel very startled. It’s weird, hard to explain. I think that about describes my sleep and it’s possible relationship to my fibro.

August 14, 2011 at 2:31 am
(63) Di says:

I was diagnosed with Fibromyalgia/CFS 3 yrs ago @ age 58. Through-out my life I was never much of ‘a dreamer’ just average I guess. For a few years prior to the diagnosis, although I seemed to sleep OK I did not wake up feeling as if I had slept @ all. When Fibro. was diagnosed I was given ENDEP 10 (Amitriptyline 10mg). I still sleep OK ‘ish but now have very realistic & vivid dreams, not necessarily scary but I feel that for the 7 hrs or so that I have slept I have lived a whole different life. When I wake up I certainly feel tired enough to have lived that other life. For me the nightly and vivid dreams seemed to start when I started on the ENDEP & I just assumed that was the cause, so it is interesting to read that so many others have similiar dream experiences but are obviously taking different/various medications.

August 14, 2011 at 11:27 am
(64) Heather says:

Trazadone… It helped me sleep but I had bloody, gory nightmares. When I woke up, I told myself, “it’s the medication – it’s just a dream.” Everything was so vivid! It was terrifying.

I was on it for years and after maybe a month or so, the really nasty dreams stopped. It eventually lost effectiveness for me and I took a “drug holiday” and used Restoril for about two weeks before going back on Trazodone.

It became clear that I’d need a higher dose of the Trazodone but the higher dose was causing hangover fatigue. So, now I’m on Restoril long-term which I don’t particularly want to be but that’s why I’m seeing a sleep specialist now. I am sure we’ll adjust my meds. I found out I have sleep apnea and I’ve been a month on the CPAP, which helps me. I’m trying to wean off meds, but doing better with than without. I see the sleep doc this week and we’ll talk. I’m eager to hear what she has to say.

August 14, 2011 at 9:06 pm
(65) Maria B says:

I am on aot of meds to treat alot of conditions that occured since I have had CFIDS (16 years). Wnever I remember my dreams they are always full of anger or fear. It didn’t used to be this way. I think that the nightmares are sourced in the meds, but right now I have tried a million meds for all my conditions and I need to stick to these for the time being. Fortunately this doesn’t happen all the time — maybe once every two or thre weeks.

August 14, 2011 at 9:32 pm
(66) Julie says:

I’ve run into this a bit lately and what I’ve found is that it’s a common side effect of several meds (usually listed as “vivid dreams”). It’s common with melatonin as well as with several other meds including a few different anti-depressant meds.

I think a lot of our common “symptoms” are side effects of some of our common meds.

August 15, 2011 at 9:37 pm
(67) Nicole says:

I’m a registered sleep technologist who also happens to have Fibromyalgia and Chronic Fatigue Syndrome. In my experience, people w/ Fibro, including myself, have too much REM sleep, and not enough slow wave sleep. REM is when you have most of your dreams, and you actually don’t remember your dreams unless you wake up while in REM. Since most people with Fibro wake up a lot, most people will feel like they dream a lot too. I myself was tested for narcolepsy after years of feeling tired all the time, sleeping way too much, having several vivid dreams every time I slept, and I started having uncontrolable sleep attacks. I ended up not having narcolepsy, however I was diagnosed with idiopathic hypersomnia…or in layman terms, I’m tired all the time, and there’s no indication why. Medications like Provigil and Ritalin can help with the daytime sleepiness, but it can be difficult to get insurance to pay for them unless you have a diagnosis of narcolepsy. Other than that, I have not been able to find anything that helps that side of things. Altough I have not tried using it myself, and am not incuraging anyone to use it illegally, according to experts, marijuana can increased slow wave sleep, and decreased REM sleep, but that’s in “normal” people, I’m not sure how it would work for people with Fibro. I hope this info helps!

August 15, 2011 at 9:54 pm
(68) GinaG says:

I have had hypnogogic hallucinations, although I don’t have them on a regular or even frequent basis. My main issue with dreaming is that I have extremely vivid, detailed, lucid dreams that play out like movies in my head. I move from participant to observer to participant, and often feel unrested because I’ve been “doing things” all night. Anyone else experience dreams of this type?

August 16, 2011 at 12:30 pm
(69) Kathy Wilding says:

I was elated to see your comments on dreams. I have had similar episodes for the past few years. I have had hypnogogic dreams. But what frightens me the most is when I am awake and working, driving or whatever and it seems as if I am remembering a dream. I never doze off during these episodes. They are never dreams about places or things but about trying to figure something out that is just nonsense. I feel as if I’m in a trance. It seems as if these episodes last a few minutes but it may not be more than a minute or two. They seem very vivid at the time but when it stops I have no idea what it was about. Does this sound familiar to anyone?

August 16, 2011 at 5:33 pm
(70) bonitta says:

When I first started getting sick I had hallucination like dreams. Terrifying dreams and I would wake up partially and be unable to move. (Frozen in fear?). I have been tested for narcolepsy and it was negative.

August 16, 2011 at 5:45 pm
(71) Mbloom says:

I think that testing of sleep is good but since it only captures one point in time it will not tell everything. Perhaps we are tested on a good night or perhaps we do not sleep the same at the sleep testing.

August 19, 2011 at 3:33 pm
(72) shastadaisy says:

Before I was diagnoised with FM, I had been having really bad dreams. It was like I was awake but I was asleep and I was frozen. I couldn’t move and I was trying to scream. I’d wake myself up screaming. This was during the time my husband was traveling a lot and I was home alone in a new city in a really big house. I just thought I was scared of being alone. It wasn’t until I went to a sleep doctor and he was asking me if I had bad dreams. I was shocked that he knew that. I had a sleep study and was dignoised with narcolepsy and sleep apnea. One symptom of narcolepsy is hypnogogic hallucinations, during which you can hear, see or feel things that aren’t there as you start to fall asleep. They’re often intense and frightening. Since I’ve been on a CPAP machine and medication to help me sleep, I haven’t had the nightmares.

August 19, 2011 at 3:55 pm
(73) becca57 says:

I have had fibro and myofascial pain syndrome for years. The dreams started when I took first Lyrica and later Savella. They were so disturbing I stopped the meds against the doctors advice. Believe it or not, I have found as much relief from the pain with essiac (an herbal tea) than any of the fibro meds. The dreams stopped, my BP went down and I wanted to remain on essiac.The doctor didn’t like that, and had his nurse inform me to make an appointment in one year. Prior to that he saw me eat least every 6 months.

August 19, 2011 at 4:29 pm
(74) Karen H says:

You could be writing about me. I have been diagnosed with FMS about 17 years ago but symptoms go back much longer, I’m 55 now. I am hypothyroid (Hashimoto’s Thyroiditis,) restless leg syndrome (since teens) myoclonic jerks, total sleep dysregulation, nightmares and as I fall of to sleep, it’s not just that feeling of falling but faces and objects rushing around me, sometimes violent images. I suffered repeated awakening with sleep paralyses a lot when I was younger. Lately during the day I often get this feeling I have just ‘broken a dream,’ or I am dreaming momentarily. Sometimes I fall asleep for hours in the day and am difficult to rouse. Other times I have severe insomnia. Because I have had bouts of elation and depression since teens, once diagnosed bi-polar but now recognised as having complex PTSD, these symptoms have generally been put down to emotional stress or side affects of medication but from what I have read today I am going to make a list and see my Doctor again. I have subscribed to this newsletter for a very long time, it is really useful. Thank you so much for keeping us informed.

August 19, 2011 at 4:40 pm
(75) mamamull says:

Somteimes I have lucid dreams – dreams that I am aware enough to change the direction – kind of logical moment in the midst of dreaming.

I also have very vivid dreams when my brain shuts down from a migraine – some of them have been vivid enough for me to write stories about – unfortunately – I am not a novelist

I don’t have many nightmares, just some very negative ones where I feel degraded

The funniest dream sequences were when I kept being naked in my dreams – so I wear a t-shirt now — my hubby says as long as I don’t sleep with an umbrella that he is ok with me wearing even more clothing

August 19, 2011 at 6:32 pm
(76) Dave says:

While on Ambian for sleep difficulties related to CFS, I actually got up in the middle of the night, mixed some paint and painted part of a room. The next day I went to do the task and saw that it was done. The only way we figured out that I had done it was that I had paint on my robe. I also frequently had extremly vivid dreams while on Ambian. I tried many different things and in lots of combinations and after 2 years of little quality sleep I now use Neurontin and Traxadone for as nothing else works for me without creating side effects.

August 19, 2011 at 7:07 pm
(77) Lucy says:

I poasted an earlier comment abouit dreams but now that I have read so many of your comments I realized something.

I had vivd, recurring and often frightening dreams as a child starting at a very young age, maybe 3 years old. they usually involved an escape theme, including escaping from my abusie and alcoholic mother. They seemed to fade away as I got older and stopped altogether after I escaped the parental home.

Now I have had fibro diagnosed for 10 years but was probablt around for another 10. The SSRI medications really brought the dreams on like gang busters. I think I have at times also experienced the waking dreams some have described. I am on CPAP for sleep apnea and that has helped my sleep.

However, the best thing I have found so far for asleep is marijuana. Where I live, medical marijuana is legal. I use it in capsule form since I have never smoked. On it I get 6-7 hours of sleep. Without it I may get anywhere from none to only 2-3 hours. Combined with Rozerem I get a reasonable if not perfect restorative sleep.

Be forewarned…if you have been on SSRI or sleep drugs like Ambien for awhile, it is a nightmare to widraw from these medications. I cold turkeyed and had almost a week of no sleep and felling like I wanted to crawl out of my skin. Truly awful.
Thanks to everyone for sharing. I now know more about the dreaming I experience.

August 22, 2011 at 1:25 pm
(78) Betty says:

I have had for years what I would call “sleep explosions”. Right as I start to fall asleep I hear the absolute loudest explosion sound you could ever imagine, everything from a gunshot right in my ear to a crane falling right on top of me. Does anyone else ever have this?

August 28, 2011 at 4:09 am
(79) Kati says:

I read this and thought wow! This is so interesting to be mentioned on your site and completely relates to me. I am 29 years old and was diagnosed with Fibromyalgia 1 year ago but I have suffered from many things since I was a child, and I now know is in relation to the fibro. I have had migraines, Ibs, and hypo tension(dizzy spells/blackouts), since I was a little girl. Also in my teen years I was diagnosed with TMJ, Ulcers, Spastic Colon Syndrome, Scoliosis, Asthma/Allergies, etc. Now when I was 24 I started having extreme sleepiness that would occur any time and any where! I would fall asleep walking, standing, sitting, driving, at work(while walking or sitting), etc. I was so tired I would sleep anywhere from 12-30 hours in a row and the doctor who observed me thought I had narcolepsy. He treated me with Provigil. I felt as if I was being attacked by a force, a sleep sickness monster that was sucking all the life out of me. It was horrible! This went on for a year before I got any better but i also started having tachycardia from the Provigil. I experienced the hypnogogic hallucinations only twice while having the problem but I was also up all night before it happened and it happened right as I dosed off. It happens because the brain gets stuck in between sleep and wake cycles, your brain accidentally wakes you up while going in to dream state instead of keeping you sleep as it should. It was later ruled out to be chronic fatigue syndrome instead of narcolepsy after testings.
I have no idea if narcolepsy has anything to do with FMS but it wouldn’t surprise me. I also have a Chiari Malformation of the brain stem that has been linked to FMS as well. I have every possible symptom of fibro and condition that could be part of the cause. It now makes sense to me as to whats been going on with me all these years. I pray they find a cure for us:-) -Kati

December 27, 2011 at 7:55 am
(80) Beach Resort says:

It’s really a cool and helpful piece of information. I’m happy that you just shared this helpful information with us. Please keep us up to date like this. Thank you for sharing.

December 27, 2011 at 7:57 am
(81) web design says:

Its like you learn my mind! You seem to know a lot approximately this, such as you wrote the guide in it or something. I think that you just could do with some p.c. to power the message home a little bit, however instead of that, this is great blog. An excellent read. I will certainly be back.

February 1, 2012 at 11:37 pm
(82) Cate says:

It’s redundant but I have the exact same thing going on. Had night terrors as a child-could not be woken up from them. Have PTSD from serious childhood emotional/physical trauma. Have seen vision/talked to the dead/most of my life. Have had chronic pain for last 2+years-doctors says it’s all in my head. Recently sleep disturbances have gotten more frequent and more bizarre. Hard to function in waking life. Having lots of lucid dreams & dreams of being taken over by entities. Tired all the time. Doctors treat me like I’m a lunatic. I just want answers. Want relief. Thank you all for posting. At least I don’t feel as alone.

April 9, 2012 at 7:23 am
(83) Marian Dixon says:

Yes just searching on the Web for” bad dreams and Fibromyalgia” . i have been having these weird dreams for about 6 months now every single night. it contributes to bad sleepless and restless nights , and leaves me irritable tired and not being able to do anything for weeks and months . I am eager to know if this is part of Fibromyalgia and indeed wont be too surprised if it is. Good luck to you all who are in the same boat as i am . I know exactly how you feel. Marian

May 11, 2012 at 10:37 am
(84) Hayley says:

Does this sound familiar to anyone? It’s happened to me three times before that I will wake up in the middle of the night, and, I don’t know how, but I will see things that aren’t there. My eyes are open, I’m looking around my room, and I always see people, as clear as day. Not just figures or shadows, but very realistic, detailed people. One time it was a person that I kind of knew in real life. The first two times it happened, I ran out of my room, and then I realized that I had been dreaming. The first two times, I only saw the people for about 2 seconds. The last time it happened, however, (I was asleep in my basement) I woke up and watched two people run across the far side of my basement and stop behind a ladder. I watched them for a good 30 seconds. The weird thing about this one was that, while I was watching them, I didn’t think it was anything out of the ordinary. I have no idea what my thought process was or why, but I just casually watched them. And I was still watching them stand behind the ladder when they just disappeared. It was only then that I realized I had been dreaming, and also become terrified at the fact that I watched something that looked so realistic for about 30 seconds, that wasn’t actually there. You said in your article that, upon falling asleep, it can be difficult to distinguish dreams from reality. That happens to me as well, but it seems as if this is on a completely different level. I have never been diagnosed with anything, but I did have night terrors as a child, and I always dream very vividly. Does this sound familiar to anyone? I would love to know what it is.

May 21, 2012 at 7:30 pm
(85) T says:

I’ve been diagnosed with fibromyaglia 2 years ago. Since then I read words that aren’t there. This is terrible when I’m at work. My job consist of being responsible for people’s lives & when I make a mistake because I seen something that wasn’t there I’m upset with myself. Not only do I look like I don’t know how to do my job, but I also come across as being a lier, which is not like me. I check my work at least 3 times but I still have the same issue. Is this part of my condition?

July 30, 2012 at 4:16 pm
(86) julie says:

it seems that for the past 8 months that i have been having very loud nightmares, my sons girlfriend thought i was being attacked in my bed,he said dont worry mum does that all the time!!!
i never thought anything of it until i recently went on hols with 3 friends,they said i terrified them so they eventually shook me and i stopped, all i need to know is why is it happening and why dont i wake up or even remember

October 25, 2012 at 9:03 pm
(87) Lisa says:

When I was living in our other house I would wake up screaming, seeing someone standing there, once a person sitting at the end of my bed. Another time two young children standing side by side standing right in front of my face. The last, at that house was this lady that was crunch down in the corner then stood up and came straight to my face then faded upward towards the ceiling. She was so terrify. I was able to see every detail. At that point I started prying. since that house I move. Other things did happen in that house that was un-explained. I have had it happen to me three time in the new house. I have been here for three years now so I guess once a year is livable. I don’t take drugs of any kind. I sleep fine and very happy person. So the things I have read about this doesn’t fit. I never had this through my whole life. I’m 44 now and thing has been happening to me for about 5-6 years now.

November 29, 2012 at 12:53 am
(88) Lisa says:

I also have CFS and have been having very strange and scary dreams. As soon as I turn the lights out I start hearing things like people talking or a radio of some sort, which will lead into a nightmare and then to wake up in a panic. I really wish I could talk to someone without feeling crazy. It’s getting hard to go to bed at night. So if there’s any suggestions for a restful nights sleep.

December 1, 2012 at 6:36 am
(89) Mario says:

I have extensive disk damage and always in pain. I don’t sleep for more then 2 hours at a time most nights. I have chronic fatigue.
I hallucinate as I fall asleep or wake up thinking I’m doing something else until I try to feel the object or something in the environment that’s not real, then its like my brain realizes I’m not there and I wake. Day dreaming does the same too. It feels like time travel or an alternate universe I go too.
Its getting annoying.

December 22, 2012 at 11:00 am
(90) Richard says:

I have been feeling a but under the weather and last night i had a nightmare and woke up still in the nightmare, so it was like hallucinations, and i was almost sick due to being frightened. I then walked around the house and washed my face and got back into bed. Gradually the hallucinations decreased in intensity and I fell asleep again. I’m 17 and this has happened a few times before for example when I had sickness and diarrhoea i woke up from a dream and thought that my legs were snapped so they were facing the other direction.

February 11, 2013 at 10:28 am
(91) Verity says:

I am so grateful to have found these posts, I thought I was going insane! I have mentioned some of my symptoms to my rheumatologist and sleep study psychiatrist and have gotten some strange looks from both so I was afraid to push the issue. I have fibromyalgia (1997) lupus (1998) hashimoto’s (2010) sjogren’s (2011) rheumatoid arthritis (2012) along with some other lesser illnesses. Needless to say I have been taking a few medications, new ones added with each illness. My strange sleep issues began a good while after I began taking plaquenil and I thought it was to blame for those symptoms but I stopped taking all my meds except ultram er and the sleep issues have become life encompassing. Sorry to have written a book here, I am just hoping this might help someone else.
I sometimes fall into a deep profound sleep within a second of closing my eyes, and start dreaming. I can close my eyes and start dreaming but am not completely asleep, too, in that I’m dreaming these vivid dreams that I think I’m awake and doing the things I’m dreaming. I’ll be aware of the sounds around me, the tv voices, the dogs barking, people talking, but I’m also dreaming. I have been known to talk to people who ask me questions during these dreams, and sometimes I have memory of it and sometimes I don’t. The thing is, when I wake up I’m completely disoriented and it is frightening. So even though the tv is on and I was hearing the tv, for example, I won’t know where I am or what is going on. This has been becoming a serious issue. I feel better, at least, to know I am not alone with some of these symptoms. Thank you.

April 25, 2013 at 6:47 am
(92) Lucy says:

I have had a very bad night with what felt like constant vivid nightmares of giant tsunamis. I was afraid but asleep at the same time. Today my fibro is much worse than usual, i expect because i got even less deep ‘short-wave’ sleep that usual. From what Ive read of Xyrem it sounds like it could be a life-saver for fibromyalgia sufferers(perhaps literally, as how many of the community have attempted suicide?) and i am annoyed that is is not prescribed for fibromyalgia. It seems that the lack of deep sleep is finally being seen as an important contributor, or even cause of symptoms, but this is not translating into adequate treatment. If anyone says the words ‘sleep hygiene’ to me again I will explode!

May 1, 2013 at 2:43 am
(93) Kathryn says:

I was diagnosed with EDS many years ago & also the “overlapping” conditions FMS, CFS & Hashimoto’s Thyroiditis. Sleep has ALWAYS been an issue- insomnia, sleep walking/talking/rocking (more frequently in childhood ) , vivid dreams, depression & anxiety. I have always wondered if the sleep disorders were the “chicken or the egg.” I am certain that early and/or repeated trauma is a huge component in the onset of the syndrome. I am also a LMT & treated hundreds FMS patients – the “density” of the connective tissue actually FEELS different upon palpation by a sensitive & experienced therapist; AND many are still un-diagnosed and sadly, disbelieved by an MD.

May 10, 2013 at 4:11 am
(94) Claire says:

I have been diagnosed with ME and FM, and this vivid scarey dreams are have been a constant in my life for about 20 years. I have no concept that I am dreaming and everything seems extremely real. My partner quite often needs to wake me up for grinding my teeth due to stress.

May 10, 2013 at 11:51 am
(95) Sue says:

“Hypnagogia is conducive in the production of psi states (all kinds of so called paranormal phenomena) and vice versa.” It’s a state in which religious and mystical events can be had and is experienced by mystics, mediums and psychics. After 13 yrs of having ME, fibro and what I thought was associated sleep disorder, I now know since attending a Spiritualist church for healing, that what I experience is a spiritual problem and I now take steps to protect myself before I go to sleep.

July 4, 2013 at 9:35 pm
(96) webpage says:

I’m gone to convey my little brother, that he should also go to see this webpage on regular basis to get updated from most recent news.

July 17, 2013 at 10:33 pm
(97) Tiffany says:

I’m not sure if this is the right site or not, but, I have been on ambien off and on for a few years (31) and now I also take 10mg of leaxapro a day started it in jan 13. I have always had good dreams and some I could remember and some I couldn’t, but since like the beginning of this year, it has gotten bad. I can try to explain it and it just makes me sound crazy. I will be fully awake talking to my dad about something that happened in our office a few days before and he would tell me tiffany we never had a conversation like that, I would argue with him and say there is no way I dreamed that, I can tell word for word what said,, what we were wearing, and eating., so in actuality I did dream it, it never happened. And this has been happening more and more, and at first I just thought ok wow I have some real dreams. But now it’s stating to get to me like last night my husband came home late from work, and he asked who I was,on the phone with I said my nephew he is upset I will off the phone in a. Second. Then I get of the phone and my husband asks I long was on the phone it was 2 in morning, so I told him that my nephew posted something on Facebook and being upset, I told to call if if wanted to. We went to sleep in the morning I was like that was weird joesph calling me that late, while my husband was putting on socks and was like that. So I layer back when I got up I checked my phone log and sure enough I never talked to him, looked at his Facebook nothing on,, so now I’m like holy cow I dreamed that and brought my phone into the dream , well then this evening I talking to my husband about this and that is when I found none of it happened, he said when he got home I was asleep and don’t

July 17, 2013 at 10:34 pm
(98) Tiffany says:

remember talking about joesph.bbut this is what’s driving crazy, not really crazy but I have memories and I will have them for weeks and then that’s when I find out that my memories are true they were dreams. I have been doing it more and more and I’m starting to wonder what is going on with me. I don’t like it at all. My dreams are messing with my reality sometimes
Any help at all I would be very gratefully

Sorry I has to cute it, into 2 post

July 21, 2013 at 8:37 pm
(99) Charlie Jaye Holroyd says:

I get this regularly, when I’ve had a lack of sleep. I usually hear family members shouting my name from outside my bedroom door. Also I have seen figures say on the edge of my bed, the first few times it happened I thought they where ghosts, until I did some research on the hallucination. I also tend to find when I’m having one of these dreams, or should I say nightmares, I can never move my body, it’s like I’m paralysied.

August 31, 2013 at 4:14 pm
(100) John Porter says:

I wish someone could help me understand what is happening to me. It seems like every five or six months I have a day that is just horrible. Every couple of hours I have an episode that last for a minute or two. Its so hard to describe. I rarely remember my dreams but when this episode happens its like all at once I recall all these dreams I have had. They are not bad dreams but when it happens it makes my ears ring, my sight gets dark, I feel nauseous, and when the episode subsides I feel drained and just weird. Its scary and I wonder if something is really wrong with me. Maby this is a warning of a larger problem.

September 5, 2013 at 5:55 am
(101) Laura says:

I just had the freakiest Dream ever. It was like as you say, I was trapped in Between waking and sleeping, so it felt incredibly real. It was also like hallucinating, I saw and heardmy son (who is currently with his childminder). And then I could hear him but not see him, I see my arm either, could see right through it. I’ve had dreams like this before, especially when I’m really exhausted. It’s so incredibly stressful and I feel like I’m trying to wake up. In the past I’ve known I was trapped in that strange not asleep but not awake state, but this time it felt like I was awake.

September 9, 2013 at 10:36 pm
(102) Marcy says:

I don’t know if this has anything to do with what you’ve written, but literally just 10 minutes ago I was sleeping, and I was on my back and I felt something holding my thumb, and at first I was panicked and said “get the **** off me.” (Pardon my French) then I was like “oh crap, this could be my 4 year old brother!” So I said his name, (I was also holding my cat, I could feel it perfectly; then no one said anything so, I repeated his name then whatever it was started moving towards my head bringing my thumb with it, so I stuck my other hand out to feel what I thought to be my brothers face and something felt evil, cold damp skin, and sharp teeth and bit me! Then I woke up scared, out of breath and basically like I was gasping for air coming out of water. I had to think about it before I realized it was a dream? What do you think that is? The past few days I’ve awoke crying too. -THANKS

October 3, 2013 at 5:45 pm
(103) Esther says:

I went through the whole cycle of diagnostics for narcolepsy a few years ago (mainly due to vived dreams, starting on the border of awake/sleep, remembering up to +- 50 dreams a night on occasion, often awake, extremely tired, falling asleep during the day when actively working).
…….
No narcolepsy.
Now, a few years later when a lot of other symptoms have become more apparent (muscle pain, tendon pain, muscle weakness, stiffness and cramps, hair loss, depression, hard time concentrating, mood swings etc etc) I was diagnosed with fibromyalgia.

I still have the whole dream complex. I noted that it gets worse when severly stressed for a longer period of time and the sad thing: the more tired the more dreams/hallucinations -> the more dreams/hallucinations the less (usefull) sleep -> the more dreams/hallucinations. Really hard to break the cycle. Nobody still knows how this is possible.

Many dreams are very scary or emotionally ‘heavy’: I dream things I wish I could never imagine, terrible things, and the feeling I have in the dream I (unconsciously) take with me all day.

Done with the dreams, done with the pain and most of all, done with the people who decide that its all ‘in your head’, that when they say it doesnt excist or dont talk about it (even the ones closest to me!!) it will go away! Wtf!! Much rather would have a broken leg or something (much less complicated and all anyway but mainly..) it is visible!!!!!! People can understand you cant use that foot. That it hurts. Fibromyalgia and whatever is causing the dream thing, nobody sees but me (and other who suffer the same).

Denying it doesnt make it go away :( Trust me, I wish it was so…

October 7, 2013 at 5:03 am
(104) Leatherdruid says:

I have had been diagnosed with fibro for years and had many sleep issues but relatively few that are dream related. I was reading the comments because I keep falling asleep at inappropriate times and have mini sessions that seem like narcolepsy which is what I was researching. I did not think the two could be related but much to my surprise I may have to talk to my doctor after reading all of your comments.

I was surprised by the amount of dream issues many fibro sufferers are having mainly because I have so few of them. I am not sure if this is connected but I trained myself when I was younger to practice lucid dreaming. It is the ability to consciously recognize when you are in a dream state and I have practiced it since my childhood.

Sadly the information I had was printed in the early 80′s and I don’t remember who was the author so I don’t know what information is currently available on the subject but I do know it is something that anyone can train themselves to do.

I know it has helped me throughout the years to ameliorate the many negative dreams and sleep disruptions I was experiencing while I was growing up.

The training was relatively simple if I remember correctly. It mainly consisted of constantly assessing whether you were awake or asleep and why/what the difference was between the two on a consistent basis.

It did take me a few months for it to kick in but I will never forget the first night when I routinely assessed my situation only to realize that something wasn’t right which meant that I was dreaming which was immediately followed by the realization that I was consciously aware even though I was asleep!

I don’t know if it will help anyone else but it can’t hurt to give it a try.
Besides dreams can be a lot of fun when you’re in control of them. I made many Bugs Bunny/Road Runner moments with nightmare creatures after some practice.

October 7, 2013 at 5:45 pm
(105) Matt says:

Somedays if I have done football training or if I have done something memorable but not important (eg. help cousins move house) that night i wake up in the middle of the night and i am half awake but still dreaming and i dream about the activity i did that day. For example, 2days ago i had football(soccer) training and that night i woke up and was thinking i was sitting in the changing rooms doing core exercises but i still knew i was in bed and i tried to sleep in the changing rooms like i did on my bed. hard to explain i know but if someone can explain to me what this is……THANK YOU!! <3

October 13, 2013 at 4:39 am
(106) chris lafrancesca says:

hi i dont know why but when i do sleep , i am swinging my fist, like in the dream fighting off someone in the dream also therevery viloent, getting stabbed killing some one else, someone breaking in the house,i face attacker ,sometimes im hitting my wife and i dont have a clue, can you fill me in on my disorder

December 9, 2013 at 10:02 pm
(107) Journey4Susan says:

I have had so many similar experiences as many of you. I have recently been diagnosed with Narcolepsy, was diagnosed with CFS many years ago and have mild obstructive sleep apnea. I was having severe sleep paralysis when I was diagnosed with Narcolepsy. I have had sleep problems for years but didn’t know they were problems. I have just dealt with the tiredness and refuse to give up. I have astral dreams that are like out of body, I can see the whole room, walk around the house (or hotel as I’ve done in the past). Somebody earlier said something about seeing the clock…I know what you mean! It’s very frustrating to be asleep but feel like your awake and doing things. I’ve not experienced sleep walking that I know of. I wanted to comment on leatherdruid -I also have worked to be able to asses in my dreams if I’m dreaming or awake. Then I can control my dreams and if it’s a sleep paralysis, I can talk myself awake. This has been helpful for my husband as I’ve been known to “be asleep” and say ,”Wake me up.” with my mouth paralyzed, so it’s like a ventriloquist talking. Freaks him out! So I learned to control my dreams. Occasionally, I can’t, but I’ve become pretty good at it. I’ll count that as lucky. I take Provigil and Pramipexole for restless leg that causes insomnia. This condition is very frustrating and perplexing. I wish you all the best and will follow for tips and advice!

December 23, 2013 at 2:14 am
(108) suzyk says:

Hi, I too have exactly the same problem as your reader. I have extremely vivid dreams I am aware that I am dreaming therefore not fully asleep sometimes I can control my dreams a little and steer them in the direction I want to go. I used to call my dreams my 2 day warning system as I used to start having wild dreams 2 days before a flare, unfortunately my fibromyalgia has deteriorated the last few years and now I the dreams coincide with the flares and are much more frequent.

January 29, 2014 at 12:53 am
(109) sleepyinbama says:

I was diagnosed with both fibromialgia and chronic fatigue, malaise, depression, etc. Then, my Dr suggested narcolepsy. I was sent to a sleep clinic. Was positive for both narcolepsy and catoplexy. I have very vivid, lucid dreams. I stay in an almost constant dream state, When I wake up, I sometimes can’t separate what I dreamed from what is real. I will think it actually happened. In my dreams, I travel through time, I can go to my past, change the outcome of my dreams…I have full control of my dreams. It seems like I go places, almost as if my soul leaves my body and roams freely while in my unconscious state. My dreams are just as real as my wakeful life. It’s as if my conscious mind and my subconscious mind have become as one. All the memories from the past that I had burried have come back, and I relive them again. This is crazy, then again, sometimes amazing. In my dreams, I can face my fears, retrace the years….just like that song “silent lucidity”. It now makes perfect sense to me. I live it.

February 9, 2014 at 5:21 am
(110) Marcus says:

Hey I need help..You know sometimes i see some really vivid dreams about some people whom i dont recognise…it’s totally like déjà vu or something…and when I am walking on the streets sometimes i see the people who are exact same from my dreams! I mean exact! For instance i saw a dream in which i meat this girl…and today i really met her..please i am curious!
Thanking you in advance

February 11, 2014 at 1:01 pm
(111) sherry says:

I also have fybromyalgia and CFS. I do have really horrible dreams but only when I don’t take m6 depression and anxiety medicine. I wonder why that is? I take nafasadone and trazadone. Not sure which keeps the bad dreams away but I think it is the nafasadone which used to be called serzone and they don’t prescribe it to patients anymore. My dreams can be stepehn king movies. I tell my soon to be husband about the dreams and it freaks him out. Lol I. Forget about them if I don’t talk about them so that is good but when I wake up it is sometimes hard to know if I’m still dreaming and my brain thinks it really happened n scares me a lot. What are your thoughts?

February 15, 2014 at 3:35 am
(112) Mandie says:

For quite awhile now my husband has been waking up in the middle of the night and talking about his work. He is a parts deliverer and he will wake up talking about orders some guy gave him and he even asks me questions about what these people in his dream are saying? Idk what this is….but it’s happened more than a handful of times. He is awake while he talks and asks questions…he sometimes gets mad when I tell him he’s in bed and it’s so and so time. I don’t know what to do or think, does anyone know what this is? And why it’s occurring?? It kind of scares me.

February 19, 2014 at 7:09 pm
(113) naomi says:

I have narcolepsy and fibro. The narcolepsy was actually dx’d when they did a sleep study trying to dx fibro sleep issues. I broke the record at the center for how fast one enters REM! Since then I have learned to embrace the weirdness that comes with dreaming/sleeping/narcolepsy. I don’t let myself get anxious over the dreams that seem real (i call them Groundhog Day dreams) or the dreams that are super hallucinatory. I’ve learned to enjoy them. After all, they are like my own big budget Hollywood movie, but even better because they feel so real. Like going to a haunted house or something. Other people have to pay for that kind of entertainment – I get it for free! The ones I can remember I share with my family and we get a big kick out of them!

February 27, 2014 at 1:03 am
(114) lshcharmed says:

I am 54 this past nov 20…I have read some of everyone’s and skimmed some of everyone hears sleep / dream issue’s. I need to chime in. I was an abused child beaten ….things thrown over my head…dragged up steps by my hair cause I skipped out to see a rock concert all from age 13-20 till I fought my owIn father and mother physically for it to stop..
.I always believed in god and prayed if I ever had a child please let be a girl and while yes I had a girl at 28 years of age upon marrying my H.S. sweetheart. I had vivid dreams then but I also drank/smoked pot etc to heal the hurt I felt almost daily. I always thought gifted with some of my dreams.
I

February 27, 2014 at 1:06 am
(115) lshcharmed says:

continued—-
am ok but was associated with Harley guys and oh well I was raped as well during those days. so this is what I am leading up to.
..I dreamed the death of my husband the first nite I stayed with him upon our engagement toghethr. and sadly it happened ….I had the baby 1988 aug perfect beautiful girl…..lost my husband 11 months later. So this is what I have to say about not sleeping/ dream interpretations I didn’t sleep for 2 years carrying the baby and then the care of her after. I was alone…with PTSD. repression. and hanging on by a thread emotionally…I walked into a medwell loosing my memory like who I was …our names ….places….I was so stressed without no sleep/ no rem/ it was killing me. I would have ended up with . a bad case of amnesia if I would not have gotten help that day. \

February 27, 2014 at 1:07 am
(116) lshcharmed says:

I=finally—
was then in 3 sleep studies/ not able to exercise for horrible pain that settled into my body after horrible delivery of the baby. 4th degree lacerations/ hysterectomy and some healing from that.\
I was diagnosed 6 years later with fibromyalgia/ repression/ ptsd/ no rem at all or deep sleep. which is the opposite from some of u all here. Since I am disabled with sever fibromyagia/arthritis/bursitis/ spinal degenerative discs/ knee replacement. / a spine operation soon ….I know after all I have been through 3 death experiences. I know I take dreams very seriously
. I have been taking ambien since 1994 when it came on to the market and it saved my life. I respect it and take it only to sleep for 8 or more hours. I do not go have a drink/ whatever people think to do that they shouldn’t is wrecking what this drug is all about. It has worked for me for 20 years now. I don’t get the halluciations, form no sleep day / nite.
It was the only thing that saved me. I take paxil…and morphine now hoping to get back on fetynal soon patches that allowed me to live life some. again and help my girl get back to college cause she is 25 already and needs that paper..
We just lost a tiny ferel kitten that died to sickly and didn;t make it., plus my other cat passed of old age.,, and we had mya our spec 7 toed solid black beauty like her 2 sister’s and one brother while mom is 4.5 pounds.
Our baby mittens visited me the day after and stayed a while and that was really neat for her young life to show us she is okay now.
I do dream sometimes but not often but I take them seriously. For all who suffer with fibromyalgia / and all that goes with it don’t be afraid to try drugs till u find the one that will work the best then things will be good ad it can be…..thanks for reading hope I helped.

March 2, 2014 at 11:44 am
(117) Phyllis says:

I too have fibro and am experiencing the same thing. I do not take meds of any type. Its really hard to separate what is real and what is dream.

March 21, 2014 at 4:15 am
(118) Wendy says:

I have many short dreams through the day, I can be just sitting at work typing or at home standing doing the cooking and I suddenly start a dream, realise I am dreaming and jerk myself out of the dream, I never miss a beat, just go on with what I was doing. It’s getting me down, I keep wondering when I’m going to drop a saucepan or stuff up my work. Up until now I’ve never dropped anything. I am on many drugs for severe pain from rheumatoid arthritis.

April 6, 2014 at 9:56 am
(119) thepowerofluciddreams.weebly.com says:

However, if you really want to speed up the learning process, there
are audio CDs available that enable you to
experience lucid dreaming in just days. Pick one of the repeated elements of
your dream and whenever you experience that same thing
in your waking life, stop and ask yourself, _Am
I dreaming. And in Astral Projection it is probably more
productive to explore the other realities that already exist, relatively unhampered by specific desires for self-fulfillment.

April 21, 2014 at 5:36 pm
(120) florida air conditioning repair says:

When a central air conditioner is operating, hot air inside the property flows to the furnace through the return-air duct. The hot air is moved by the blower across the cooled evaporator coil in the plenum and is then delivered by means of ducts to cool the property.

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