fibro cause theories, delta-wave sleep interruption, Xyrem

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musekill
New Member


Date Joined Dec 2008
Total Posts : 6
   Posted 12/5/2008 1:43 PM (GMT -7)   
Hey, so I've been reading some of the threads and I've bumped into a lot of theories on causes. I'm a bit skeptical of some of the theories out there. I'm wondering if theres people on here that have gone with the sleep idea like me and have anything to add to this...

I'm personally of the belief that fibro stems from sleep issues. I've thought this for years because it just made sense with all the research I've done over the years. Recently, my dentist actually wanted me to get a sleep study done because he thought I was grinding my teeth in my sleep. I told him I didn't. Well, I had the sleep study done this past August. The Sleep Tech was able to tell me I didn't grind my teeth, have sleep apnea or any of the other common sleep problems. I told him I could've told him that myself. Then I had the follow up. Guess what? The doc confirmed the guess I've had for years: delta wave sleep interruption. I got talking to him about this and it's relation to fibro. He said that most of his patients have the more common sleep issues. He said every once in a while he'll get a patient like me and that most of them have already been diagnosed with fibro or a lot of their symptoms fit fibro.

Growth hormone, which repairs muscles, is released during delta wave sleep, which could account for the muscle pain. Studies with rats have shown that sleep deprivation techniques, where they're not allowed to reach delta-wave sleep, reduces neuroplasticity in their brains: thus resulting in poor learning and memory abilities (fibro fog). And, of course, if you're not getting delta-wave sleep (restorative sleep), you're going to feel fatigued.

As for why the delta-wave sleep interruption happens? I don't know. Although I haven't spent that much time looking into it, I think scientists don't quite understand what regulates sleep cycles, yet. I do know serotonin is involved in the circadian rhythm (onset of sleepiness, length of sleep, length of wakefulness).


Questions
1) Has anyone else here been diagnosed with delta-wave sleep interruption?

2) Is anyone here on Xyrem? It's also know as sodium oxybate, gamma-hydroxybutyric acid or GHB. It's one of the few chemicals thats listed on two US drug schedules. It's street form, GHB ("date-rape drug"), is Schedule I, thus illegal. However, Jazz Pharmaceuticals, produces it under Xyrem and is FDA approved for narcolepsy. Theres some studies out there that suggests it promotes delta wave sleep. It's in clinical trials for fibromyalgia.
-Doreen-
Pre-Pharmacy Student. Retail Pharm Tech. Fibromyalgia.
MuseKill: the name I came up with for a personal domain when I was 15. At 21, I have no clue what it means. It's just my online pseudonym.
----------------------
The difference between perseverance and obstinacy is that one comes from a strong will, and the other from a strong won't. ~Henry Ward Beecher

Post Edited (musekill) : 12/5/2008 1:48:10 PM (GMT-7)


Jeannie143
Veteran Member


Date Joined Apr 2004
Total Posts : 6056
   Posted 12/5/2008 3:11 PM (GMT -7)   
The sleep problems may be like the chicken and the egg. Does the fibro cause sleep problems or do the sleep problems make the fibro worse? Lots of ideas about cause and effect, etiology of this disorder... Read some of the stuff by Dr. Richard Clauw from University of Michigan. He's really into this fibro research and pain control. Don't think it's only sleep disturbances... I've had it since I can remember at age 3...
~ Jeannie, Forum Moderator/Diabetes & Fibromyalgia
I know God will not give me anything I can't handle. I just wish that He didn't trust me so much. ~Mother Teresa

"People are like stained glass windows: They sparkle and shine when the sun's out, but when the darkness sets in, their true beauty is revealed only if there is light within."- Elizabeth Kubler-Ross


solar powered
Veteran Member


Date Joined Nov 2007
Total Posts : 538
   Posted 12/6/2008 11:10 AM (GMT -7)   
Hi Doreen. Yes I am on Xyrem and have been for almost 2 years now for fibro/delta wave sleep interruption. When I had my sleep study done, I had reduced stage 3 sleep and no stage 4 sleep at all plus alpha wave intrusions(no wonder I always felt like crap when I got up in the morning!) which the specialist told me was common in fibro patients. I tried other sleep aids first but they didn't help or caused side effects. The sleep specialist also believes that fibro is caused by sleep problems. He said that Xyrem helps to increase the delta sleep which is why he wanted me on it. I don't understand how it works but I do know that I sleep MUCH better since I've been on it and have had minimal side effects and no morning hang-over. My energy is up and my pain is down-not perfect but much better. Xyrem has its issues but it has been a God send for me. I really wish more people on here would get sleep studies done and consider using this med. Sleep is soooo important to our bodies and I think we need to do whatever it takes to get the best quality that we can. Anyway, if you have any questions about Xyrem, please go ahead and ask. I think I'm the only one here who is on it. Hope you have a good weekend.  Lisa

Kythe
Regular Member


Date Joined Jun 2008
Total Posts : 261
   Posted 12/6/2008 11:43 AM (GMT -7)   
That's an interesting theory, but I agree with Jeannie that it may be hard to tell which problem causes which.

It might be helpful to use a brainwave entrainment CD that focuses on delta waves while you sleep.
~Kythe
____________


Allergies, Asthma, Anxiety, Depression, IBS, PCOS, Fibromyalgia


K9
Regular Member


Date Joined Nov 2008
Total Posts : 263
   Posted 12/6/2008 12:31 PM (GMT -7)   
I wonder about that also...my rheumatologist, who diagnosed me with fibromyalgia was convinced that it comes from improper sleep. So she prescribed Amitriptylene for sleep, but I ended up sleeping all the next day as well...even on 2.5mg.

The thing is, I never thought of myself as a person with sleep problems. I always sleep. But perhaps it is, as you say, not the delta-wave kind of "deep" sleep that is needed.
I have Fibromyalgia, but nothing else!

I take Lyrica 150mg b.i.d.
Tramacet 75 mg for breakthrough pain

Tried amitryptelene 2.5 mg but it made me a zombie!


Waterbaby
Regular Member


Date Joined Aug 2008
Total Posts : 96
   Posted 12/13/2008 3:44 AM (GMT -7)   
I have had trouble sleeping for most of my adult life. I have always thought that the fibro came as a result of my sleep deprivation. I always had trouble getting into a deep sleep, but more often than not was just in a light sleep. Now since I am taking lyrica, amitriptyline, and ultram I sleep like a zombie. I really do believe that the fibro in my case anyway was brought on by years of insomnia.
bulging discs in neck & thoracic region, low back pain, arthritis in lumbar region, diabetes, high blood pressure, depression, anxiety,
meds: enjuvia, pristiq, actos, amaryl, lyrica, hyzaar, elavil, ultram
 
 
"Two paths diverged in a yellow wood, and I, I took the one less traveled by...And that has made all the difference."  Robert Frost


tyno3
Veteran Member


Date Joined May 2008
Total Posts : 1081
   Posted 12/13/2008 4:23 AM (GMT -7)   
I am totally convinced of the deep sleep deprivation theory, and the commonality of not having enough Human Growth Hormone available to repair strains, sprains and other injuries. Therefore (contrary to what the doc said about cry ä sprained knee, is just a sprained knee, you have no tolerance for pain", isn't exactly correct. Rather, six months later when my knee should be back to normal it feels like a firecracker going off behind my knee if the ground is uneven and my right leg goes down lower than left. I just wish there was someway to fix the human growth hormone issue w,o growing bigger than I am now. I'm a good sized gal.
Hypothyroidism, Fibromyalgia, Facet Joint Syndrome, High Blood Pressure, menopause, Migraines, Chest Pain, Anxiety and Depression/BiPolar II
Synthyroid .075mg., estradiol.5 mgs., Amyltriptilene, 100mgs, bedtime, Tylenol 3 PRN (six-eight, daily), Valium 7.5mgs. daily prn. Flexeril, prn (not so helpful), Zoloft,150mgs., Zomig approx. 12 per month, prn., Meds for High Blood Pressure, vary.


JustTina
Regular Member


Date Joined Dec 2008
Total Posts : 23
   Posted 12/13/2008 8:40 AM (GMT -7)   
I've had two sleep studies in the first I did not get any stage 3 or 4 sleep. They said I did better in the second study with the hose up my nose but did not tell me how much. I'm really dissatisfied with the aftercare of the sleep clinic I went to & my GP is sending me to a different place. I think I need something to help me sleep at night on top of the CPAP. In fact the CPAP made me feel worse & I stopped using in about 3 weeks ago after I woke up with chest pain.

Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 12/13/2008 8:57 AM (GMT -7)   
I was going to have a sleep study done quite awhile ago but never did. I am curious how I really sleep at night and if it has anything to do with the fatigue. After the holidays I may go ahead and have one done for my own curiosity.
 
When all this started for me I was having horrible anxiety and I don't know if that can cause sleep problems or not.
 
luv and hugs
Marlee
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches and Tramadol
 
Co Q 10, Super B Complex, Extra B12, Multi vitamin


CathyA
Veteran Member


Date Joined Mar 2005
Total Posts : 1431
   Posted 12/13/2008 9:21 AM (GMT -7)   
When I had my last sleep study a couple years ago, I had alpha wave intrusion, very little stage 2 sleep and absolutely no REM sleep. I also had about 30 apnea/hypopnea events per hour. I've been using a cpap machine for about 2 years now and I do feel better. I don't have that "I'm going to collapse right here and now" feeling any more. I refuse to have another sleep study, so I don't know if I'm really doing any better, but I do feel better. My numbers on my machine each morning are fairly good.
When I mentioned Xyrem to my sleep doc, he sounded like he didn't want me messing with it.........but he doesn't seem to know much about a variety of things. Did you have any sleep apnea/hyponea during your sleep study?

RedDiane
Veteran Member


Date Joined Jun 2007
Total Posts : 906
   Posted 12/13/2008 10:45 AM (GMT -7)   
I've had two sleep studies and now am on a CPAP. Lyrica has really helped my sleep--I don't wake up more than once or twice in 10 hours of sleep. But I don't feel any better during the day. Still just as tired/exhausted. I think the deep sleep deprivation and HGH are at least very instrumental in fibro, if not the whole problem. I am glad more research is being done on sleep. I've had these problems for 24 years now. Diane
Fibromyalgia since 1984, Sjogren's, Hashimoto's Thyroiditis, Auto-immune eczema, GERD, osteoarthritis, IBS, RLS, sleep apnea


tyno3
Veteran Member


Date Joined May 2008
Total Posts : 1081
   Posted 12/13/2008 2:23 PM (GMT -7)   
i wonder about a sleep study and if I may have apnea or hypoapnea. i do know i catch myself through-out the day, not breathing. It's like I have to consciously remind myself to breath. I wonder if this happens at night. I have been informed by my son's that I snore. This has only been going on as long as the Fibro (since mid 90's). I wonder about the sleep study because I have difficulty letting go and falling asleep in different locations. For example, when we travel, first night in strange place i don;t sleep well at all. However, by 2nd night, I'm ok. problem when you're traveling, you rarely spend two nights in one place. So I generally find one type of motel with all the same room layouts so i have a better chance. getting to the root of all this would improve my life immeasurably. Knowledge is power, power fuels change. Something I'd like to do, change from that tired old lady look back into a slim, well attired, bright and rested woman, with diginity. Fibro steals dignity. How many parties i have attended where I turn into a cranky pumpkin at 9:00 or earlier, and excuse myself. of course everybody says, no stay, it will get better. It won't get better for me. I have to rush home to my electric throw, my Bed Buddy and my heating pad. No-one in my family understands at all. I think they think it's because i don't drink alcohol. I can't given my meds.

Hypothyroidism, Fibromyalgia, Facet Joint Syndrome, High Blood Pressure, menopause, Migraines, Chest Pain, Anxiety and Depression/BiPolar II
Synthyroid .075mg., estradiol.5 mgs., Amyltriptilene, 100mgs, bedtime, Tylenol 3 PRN (six-eight, daily), Valium 7.5mgs. daily prn. Flexeril, prn (not so helpful), Zoloft,150mgs., Zomig approx. 12 per month, prn., Meds for High Blood Pressure, vary.


Katted
New Member


Date Joined Mar 2005
Total Posts : 12
   Posted 12/13/2008 4:55 PM (GMT -7)   
Fibromyalgia is caused by or the result of a sleep disorder. I have read research that say if people are deprived of sleep for about 3 days they will start to show symptoms similar to FMS. That doesn't mean they actually develop it, but they show similar symptoms. That indicates to me that the sleep disruption with Fibro contributes or causes the symptoms, though of course what causes the sleep disruption is debateable, extremely debateable.

I am 23 and have spent the past five years with all sorts of doctors trying to confirm/treat my Fibromyalgia. I have the tender points, the super sensitivity to pain and touch, and the fatigue, sleep problems, the super pain is my main problem.
I went through a bout of severe depression, temporary, and gone, its been a year and a half since full recovery. I mean of severe depression, not the regular blues.

Point is, months later, I found myself still tired, unable to do regular activities and of course, sleeping awfully. The pain I have learned to deal with, I tough it out and ignore it, luckily it is my only pain illness, so its not debilitating. However, I became increasingly sleepy, unable to wake up, napping all the time, I could sleep forever, and I thought it was the regular fatigue of Fibro, so I kept upping or lowering my medication (i mean with my dr) and on and on, I tried a Neurological Chyropractor (a PHd in Neuro. Chiro, go figure -> which by the way i reccomend as a great treatment for fibromyalgia, not the adjustments (those suck), but the eye-lights, oxygen therapy and ultrasound therapy), and a psychologist (people are always saying fibro. is depression, but after severe depression you can tell the difference)...but it was getting worse.

Finally I did a sleep study (THANK GOD). I thought it would confirm the sleep disorder that is associated with FMS, the disruption of deep sleep by 'awake' brain activity.
These were my results:

Narcolepsy without Cataplexy (that means without falling down when you laugh, etc)
Periodic Limb Movement Sleep Disorder (dancing around all night like a crazy person)
AND
Insomnia due to Fibromyalgia, go figure.

The Narcolepsy alone does not explain the Fibromyalgia ridiculous sensitivity to touch, pain (small pain feels like horrible pain, which has led to an awesome tolerance of bad pain, as it feels the same as small pain since you can only feel so much pain...), and over sensitivity to light, noises etc etc.
And I didn't have Narc. symptoms a few years ago.

So, did the FMS bring on the Narc or encourage it?
Did I have Narc. and FMS but couldn't tell the difference?
Now should I doubt the FMS? But then the Narc doesn't explain the super sensitivity (which sucks, of course).

I know this sounds rude, but I am grateful to find out that I have a disease like Narcalepsy that people understand, so I don't have to convince them of the problems with FMS (which of course, they attribute to laziness, or diet, or me not trying hard enough), and can just lump it all together with something that other people recognize).

So, I recommend a sleep study, at least to confirm the Fibromyalgia sleep disruption, because your sleep is awful, and you can find out why, they can't lie to you or tell you you aren't having bad sleep, because if you are it will DEFINITELY show up in the study.

Btw, I'm new here too, so Hi! :D

tyno3
Veteran Member


Date Joined May 2008
Total Posts : 1081
   Posted 12/14/2008 7:04 AM (GMT -7)   
Hello and welcome. This forum has helped me a lot because after being told repeatedly "ït's all in your head", I tended to begin to believe. I came here and discoved Chutz's list of symptoms (top two threads), very helpful, and then I went down the list : yup, got that, and that, yup, yup, yup......... So, was I relieved to find out that I'm not crazy, or a drug seeking junkie, or imagining this in order to get attention, rather, there are reasons why I feel this way. I also did a major go round or six, where I was so depressed, the doctors either would not or could not help me. One anti-depressant I was on, Lexapro, I believe, was a sugar pill. It did diddly. At least it had no nasty side effects, It didn't have any effects at all.So, I admire you for doing the research. What conclusions did you draw vis a vis how to fix your sleep so it's not terrorism in between the bedsheets. I know, I get up at least once sometimes more, during the night to remake my bed. I get these really sore spots where my body touce any wrinkles in them. The fleece sheets are so taut, I don't run into the issue of my skin breaking down (like bedsores trying to take hold) The new sheets are almost to small for the bed, but, they don't have any wrinkles. I'm (with doctor's approval) trying to find a solution to how to get to sleep and worse still how to avoid waking up at two or three AM and not being able to fall bck to sleep. I do have amyltriptilene on hand, and it does put me to sleep after about two hours but itgives me carb cravings and cotton mouth. The next day I feel like i was on a three day bender. (I don't drink, at all). I do get valium, 5mgs. at bedtime but it isn't doing the trick. I can fall asleep with it but I always wake up in the middle of the night. I also have muscle relaxers, flexeril. I can take thid with the valium and sometimes i'll sleep through. I'm on so many meds, it's embarassing. I am on at least seven. Nice to hear from you. Sorry this hit you so young. Maybe, though you'll find some answers for all of us.

Hypothyroidism, Fibromyalgia, Facet Joint Syndrome, High Blood Pressure, menopause, Migraines, Chest Pain, Anxiety and Depression/BiPolar II
Synthyroid .075mg., estradiol.5 mgs., Amyltriptilene, 100mgs, bedtime, Tylenol 3 PRN (six-eight, daily), Valium 7.5mgs. daily prn. Flexeril, prn (not so helpful), Zoloft,150mgs., Zomig approx. 12 per month, prn., Meds for High Blood Pressure, vary.


mixxie
New Member


Date Joined Feb 2009
Total Posts : 1
   Posted 2/27/2009 6:27 PM (GMT -7)   
Hi fellow Xyrem users:
Today was my first day on Xyrem. It tastes nasty!! Does anyone have tips on making this taste better or tolerable?
So I know I was supposed to wait until bedtime to take it but I couldn't stand the suspense and wanted to know if it would really make me sleep.
I took it about 12:30 this afternoon and no it didnt make me sleepy at all. I felt a slight bit of euphoria about 2 hours later and that lasted about an hour or so. It's about 6:20 pm now and I just took another dose.
I am a recovering addict, my pain DR. had me on:

Fentanyl Patch (50 mcg)
Soma 350mg 4 X per day
Actiq (fentanyl lollipops) 90 per mo. (450 mcg)
Lortab 10 mg. 90 per mo.
Xanax about 10 per day
Phenergan 50 mg 3 X per day
Restoril 60 mg every night for sleep
plus a bunch of other meds.
It got to where none of this stuff would work for me.
My diagnosis is:
migraines
fibromyalgia
depression
neuropathy
anxitey

So now, I am only on Prozac, Wellbutrin XL, Phenergan, and the Xyrem. Oh yeah, the Xyrem makes me want bootie.
I do miss the Opiates and the Benzodiazepenes but I guess I just have to deal with it. Good luck to all of you~!
Mixxie ( I would save an animal before a human any darn day) skull skull skull skull skull skull skull skull

solar powered
Veteran Member


Date Joined Nov 2007
Total Posts : 538
   Posted 2/27/2009 6:49 PM (GMT -7)   
Hi Mixxie and welcome to the "club". My sleep specialist told me that it was OK to mix the xyrem with diet sprite or something along those lines as long as there is no sugar and of course no caffeine instead of water which the directions say to use. It makes it much easier to deal with. You said your first dose didn't make you sleepy. Just remember it may take time for the doctor to get just the right dosage for you. It is a powerful drug so please use it only as your dr. tells you to. Nothing to mess around with. It has helped me quite a bit so I wish you much luck with it also. Lisa
Life is the ultimate contact sport. Train accordingly and play hard.


redheadmom
New Member


Date Joined Oct 2009
Total Posts : 2
   Posted 10/15/2009 8:44 PM (GMT -7)   
I've been diagnosed with having no deep sleep at all, with alpha wave intrusion into delta wave sleep.  In fact, my sleep doctor told my fibromyalgia doctor that in his 20 years, I have the worst case he has seen.  Together they came up with two sleep regimens.  Neither regimen works completely well.  One regimen includes Xyrem plus two other sleep medicines.  The other regimen includes Trazodone plus several medicines and nutritional sleep supplements.  Xyrem worked well for about four months, then worked off and on.  Lately, it is not working well at all.  The other regimen keeps me asleep, but the quality of my sleep is not that good because I feel rotten most of the time and have low grade fevers and low blood sugar.  I am currently searching for an accomplished sleep doctor who might be able to further help me, but am not sure that I can find someone.  If you have any further questions, fire away! I'm not sure what else to tell you

TreeBo
Regular Member


Date Joined Aug 2009
Total Posts : 114
   Posted 10/16/2009 4:11 AM (GMT -7)   
I have never had a sleep study done, but I know for a fact i don't sleep. No matter what time I go to bed I get up in the morning feeling like I was run over by a truck. I am often restless and have night terrors. I have been reluctant in the past to take any meds that mess with my brain. I had a bad experience with anti depressants, and now I am afaid that I may become suicidal if put on any meds. I am still waiting for more conclusive answers about many of these meds befor trying them. I am considering tryin Amitryptolene though. I have heard many good things about. I just have to get over my fear of meds.


Treebo.


redheadmom
New Member


Date Joined Oct 2009
Total Posts : 2
   Posted 10/16/2009 10:39 AM (GMT -7)   
Treebo,
 
I'm not sure why you have not yet gotten a sleep study; maybe it's a financial reason.  In 2008 I had a sleep study done at a reputable center and my insurance paid almost the full price.  I had been following the medication and supplement treatment regimen from Dr. Jacob Teitelbaum, who I consulted with for fatigue and fibro.  Finally, in 2008 my fibro doc in Cleveland said to me, "You've been doing everything you should be doing, I think you should consider a sleep study".  So after 20 years of being ill and getting no relief, I did the study.  They can test for up to 60 or more different sleep disorders.  I learned I had two sleep disorders, sleep apnea and also I got no deep sleep (alpha wave intrusion into delta wave (deep) sleep.  The CPAP mask made some difference but did not solve the whole problem. I then asked that they prescribe me Xyrem, which I learned about in the "Fibromyalgia Aware" magazine.  Dr. Scharf in Cincinnati has done clinical research trials on Xyrem with narcoleptic and fibromyalgia patients, and he has testified before Congress on this controversial medication, speaking of its usefulness with these patient populations.  I was so miserable that I could not do nothing, I had to try this treatment regimen.  I hope you will do something about your sleep problem; of course you must be personally convinced before you choose to do anything. cool

MrsIdaho
Regular Member


Date Joined Oct 2009
Total Posts : 21
   Posted 10/16/2009 11:38 AM (GMT -7)   
I am wondering if this is part of my problem too. I just had the oximeter test done last week and do not have results yet. I am taking Flexeril (muscle relaxer) and a potato/sweet potato at bedtime (read Potatoes not Prozac) and I had a good rest last night and woke up feeling very clear headed (surprise shocked ) today.
Hopeyou get some input and help tongue
Luke 13:33
 
Diabetes/Hypothyroid since 2006, Fibromyalgia 2009


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 10/16/2009 12:32 PM (GMT -7)   
I suffer with frequent bouts of insomnia and I have for years before all of my fibro
symptoms showed up. I was in grade school when I started having sleep issues. As a kid
my mom just told me I worried too much. I also have autoimmune diseases and research
hasn't come up with a definative reason for the cause. My theory is that these disorders
are tied into genetics and that circumstances and enviroment can trigger the onset.

Robin
MCTD, Fibromyalgia, Raynauds, Osteoarthritis, Osteoporosis, Degenerative 
 Disc Disease, Hypertension, Migraines and Pseudothrombocytopenia MEDS: Methotrexate, Savella,Flexeril,Diltiazem, Boniva, Vitamins 

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