Fibromyalgia Questions & Wondering if...

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Hello there, I am 18 and I have suffered from Fibromyalgia since I was 15. The pain and sleep issues forced me to leave school. I had a few questions about sleep relating to Fibromyalgia and about how Zeo could work for me. It's a bit long but I am desperate for some answers. Thanks very much in advance to anyone who takes the time to read this.

Here are some facts about my sleep-

I sleep anywhere from 11 - 15 hours a night (I say night but it is usually light out when I sleep). Usually it is 12 hours. My sleep is completely backwards, my days are at night and I sleep all day. And some times my day is when it is light out, but it doesn't last long. I used to be able to "push it" or force a regular sleep scheduale for a night if I had to to go some where the next day (if I had a few days to get my sleep on track) but I can't anymore. I'm always tired, I used to have 22 hour days and would experience strange "highs" of energry in my "evenings". Then I would sleep for 18 hours. Lately I only have 13 - 14 hour days, while sleeping for 11 - 15 hours nightly.  I recently started weaning of a synthetic opiod pain killer called Tramadol / Ultram and went through horrible withdrawal which may be why my sleep has changed. I also have sleep paralysis waking and falling asleep from time to time.

Other stuff you probably don't want to know :)

I had a test done to check my cortisol levels and they were completely backwards with a big spike about 2 hours before I would sleep. My hormones are also completely off in every respect. I don't know the details of the hormone test, but my doctor said she had never seen a test so backwards before. My serotonin is very low, also adding to the crappy withdrawal I had with Tramadol. I can't take an SSRI. I've had horrible experiences with them.

I've done all the common things doctors have told me like no TV, showers, good bed, temperature, darkness. I've tried Paul McKenna's system. I've tried things like Ambien (worst decission ever). Tylenol PM just makes me go to sleep faster which isn't my issue. I can fall alseep fine. Plus any sleep aid causes me to have Sleep Paralysis. Nothing makes my sleep feel like I accually slept. I just feel like I've been unconcious but not "sleeping" if that makes any sense. I don't recall waking at all during the night though.

Annyyywayy, I just wondered if anyone could tell me what I am missing. Something should be causing this and my current doctor is at quite a loss to explain it. I also wondered if Zeo would be a good way to monitor my sleep, even though I sleep for so long. Would that screw with the ZQ? Or can I still use it? And if I can use it, how would knowing my ZQ benefit me?

Have you thought about seeing a sleep doctor? 

I don't have my Zeo yet... I don't know what to tell you, other than a sleep doc might be able to offer you help.

I was diagnosed with fibro in 2007, but in 2011 I was diagnosed with sleep apnea and started a CPAP machine. I was amazed that the CPAP helped reduce my "fibromyalgia" symptoms. Two of my doctors have mentioned something along the lines of sleep deprivation may be causing/contributing to my fibro. I've been sitting around waiting to see if I have a flare up, but mostly it's my osteoarthritis that's causing most of my symptoms lately.

I'm not saying my fibro is "gone" -- but I kinda think that the sleep deprivation puts me over the threshold where my symptoms worsen considerably. 

 

I'm 52, experiencing severe insomnia and fatigue for 3 years. Later part of peri-menopause fatigue and sleep fragmentation was increasing but still not enough to disrupt my day functioning. I also develop Hashimoto's thyroiditis during that time. When I went menopausal I went off the deep end very abruptly. I also started a new job that same month. I literally could not sleep, I went into hyperdrive, I'm a special ed teacher and was starting a new program at a school. I did a sleep study and found out I had mild to moderate sleep apnea causing some of the fragmented sleep but also experienced what they called "spontaneous arousals" (sounds sexual, Hah!) but it's just you keep having constant awakenings disrupting your sleep pattern, although you often aren't conscious of it, and they have no idea what causes it. I remedied the sleep apnea with a mouthpiece. But my insomnia was still so severe. I've been on multiple sleep meds. I worked one semester and quit, my health continued to deteriorate into crippling fatigue and insomnia. Long story short after seeung various drs who still don't know what happened to me, I'm slowly on the mend, still to fatigued to work, but doing better. regarding the Zeo, I really wanted to know if I was getting enough deep and REM sleep, because I always wake up feeling exhausted. Turns out I get very little deep sleep, but I do get enough rem. I started looking for ways to increase my deep sleep. I used to be an aerobics fanatic, go about 3xs a week before I got sick. I found out if I exercise for about 20 minutes in the morning, low/high impact aerobics, my Zeo is recording longer periods of deep sleep. I just got it this Xmas. It makes me feel more in control of my sleep, and I feel better about sleep. I've been diagnosed by one endocrinologist as having Chronic Fatigue Syndrome, another dr diagnosed me with adrenal fatigue. I think i have some kind of hormonal/endocrine imbalances due to the changes brought about from menopause. I think you'd benefit as i have, there's power in knowledge and i think it might uncover some things about your sleep. Have you read "From Fatiqued to Fantastic" by Dr. Teitelbaum, awesome book about fibromyalgia and CFS.
All the Best to You!
Laura

I'm 52, experiencing severe insomnia and fatigue for 3 years. Later part of peri-menopause fatigue and sleep fragmentation was increasing but still not enough to disrupt my day functioning. I also develop Hashimoto's thyroiditis during that time. When I went menopausal I went off the deep end very abruptly. I also started a new job that same month. I literally could not sleep, I went into hyperdrive, I'm a special ed teacher and was starting a new program at a school. I did a sleep study and found out I had mild to moderate sleep apnea causing some of the fragmented sleep but also experienced what they called "spontaneous arousals" (sounds sexual, Hah!) but it's just you keep having constant awakenings disrupting your sleep pattern, although you often aren't conscious of it, and they have no idea what causes it. I remedied the sleep apnea with a mouthpiece. But my insomnia was still so severe. I've been on multiple sleep meds. I worked one semester and quit, my health continued to deteriorate into crippling fatigue and insomnia. Long story short after seeung various drs who still don't know what happened to me, I'm slowly on the mend, still to fatigued to work, but doing better. regarding the Zeo, I really wanted to know if I was getting enough deep and REM sleep, because I always wake up feeling exhausted. Turns out I get very little deep sleep, but I do get enough rem. I started looking for ways to increase my deep sleep. I used to be an aerobics fanatic, go about 3xs a week before I got sick. I found out if I exercise for about 20 minutes in the morning, low/high impact aerobics, my Zeo is recording longer periods of deep sleep. I just got it this Xmas. It makes me feel more in control of my sleep, and I feel better about sleep. I've been diagnosed by one endocrinologist as having Chronic Fatigue Syndrome, another dr diagnosed me with adrenal fatigue. I think i have some kind of hormonal/endocrine imbalances due to the changes brought about from menopause. I think you'd benefit as i have, there's power in knowledge and i think it might uncover some things about your sleep. Have you read "From Fatiqued to Fantastic" by Dr. Teitelbaum, awesome book about fibromyalgia and CFS.
All the Best to You!
Laura

First off I am sorry to hear you have fibro as I too suffer from it (for the past 19yrs) and my sister was recently diagnosed. Secondly, if you can find a doctor that commonly treats fibromyalgia as this makes all the difference in getting better. As background I have been researching fibromyalgia extensively, by reading scientific journals for the past 3 years (the point at which I was diagnosed by a leading physician in fibro at The Cleveland Clinic) and by trying prescription and non-prescription therapies. Additionally, I have a Ph.D. in molecular biology so reading scientific literature is second nature.

It is known that fibromyalgia patients have disrupted sleep architecture and decreased amounts of stage 4 (aka. deep sleep, slow wave sleep (SWS), delta sleep). Whether this is a result of or a cause of their pain/fatigue is unknown and may have a role in both. Sleep architecture has to do with being in the right stage of sleep for the right amount of time and at the right time during sleep throughout the night. As part of the diagnosis process I underwent 2 polysomnographs that determined that I only spent 12-15% of my night in SWS, normal average is 20-25%. At that point I was prescribed amitriptyline to be taken 1 hr before bedtime. At this time I learned of the Zeo and thought it would provide a mechanism for monitoring the efficacy of my treatment on increasing SWS verses just gauging the efficacy of the therapy on how I felt (although with the Zeo website I also track that). The amitriptyline worked somewhat, but my condition still persisted so I looked for adjuvant therapies, which led to d-ribose (preliminary results by Dr. Teitelbaum were positive). The Zeo helped in other ways in that I could record when I took my medication prior to bed and see the effect it had my amount of SWS. Long story short I discovered that I needed to take ribose just prior to bedtime, instead of at dinner, to increase my SWS by about 3-4%. Later my physician shifted me to doxepin and 5-HTP supplementation (NOTE: DO NOT combine a serotonin modulator (aka. anti-depressant) with 5-HTP without consulting your doctor as both compounds are serotonin modulators). Again I used the Zeo to gauge when taking it had the best chance for increasing SWS. I am currently stuck at 17-18% SWS, but it is a big improvement over 12% especially in my energy levels, fatigue, and cognitive abilities (aka. fibrofog).

Here is my current treatment regimen (not to be construed as a plan for anyone other than myself):

Morning: 4 grams ribose with my coffee

Afternoon: 4 grams ribose around 2pm when I begin to feel fibrofog (hard to think) and fatigue

Bedtime: 2 hrs before bedtime - doxepin; at bedtime - 4 grams ribose, 100mg 5-HTP, 100mg theanine

I also exercise and to recover mix 4grams ribose in with my water that I am drinking.

All in all I feel the Zeo is a helpful tool in monitoring your condition to determine if a current therapy is increasing SWS.

Thanks for your input I will try what you recommended, alas I cannot take anitdeppresants at all. But the 5htp has been suggested before and the ribose could help :) Ty