fibro cause theories, delta-wave sleep interruption, Xyrem

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.

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-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.
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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)

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

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.

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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!

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 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.

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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.

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

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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

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

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Fibromyalgia since 1984, Sjogren's, Hashimoto's Thyroiditis, Auto-immune eczema, GERD, osteoarthritis, IBS, RLS, sleep apnea

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

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)

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,

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.

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

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^{MCTD, Fibromyalgia, Raynauds, Osteoarthritis, Osteoporosis, Degenerative}