I spent my life with my circadian rythms out of whack. Since I was a teenager I've been a natural night owl. I spent a lot of years forcing myself with out drugs to get to work or school or whatever like regular people. I didn't want to take sleeping pills but tried every other herbal supplement or homeopathic remedy. A number of years ago, I started using Klonopin to could get eight hours of sleep. I tried to go off of it again and tried other things. Then I gave up and went back to Klonopin. Now I am awake till about 2 and wake around 10. It seems to run in the family. Two of my brothers are also night owls and so was my grandmother. I'm going for a sleep study next week. Anyway, sorry if this is no help. When I'm in a more peaceful place, I may try to go off the Klonopin again, but now is not the time to do it. Klonopin may reduce her pain, as well. But it is a benzodiazapine and they are difficult to stop taking.

Sorry your daughter is having so many difficulties.

Melatonin may be helpful to get your daughter on a regular sleep schedule. Use Google to read about it.

One thing struck me about your post. Perhaps that I misunderstood but it sounded as if you give your daughter pain killers only when she needs them. Chronic pain is best managed by using pain medication at all times on a set schedule. It is much easier to manage that way than trying to get ahead of severe pain after not taking medication.

I hope that you are able to get your daughter back on a more normal schedule. A sleep study could be helpful too but I know money is tight. Take care.

Thanks for the replies.
Ann - I will chat to our doc about the Klonopin, Thank you.
Fantod - We do use Melatonin on occasion. We were advised not to let her take it more than a couple of times a week as it may interfere with the seratonin booster. The reason for not using the pain-killers for a few days was to try and give her kidneys a break. We use the mildest pain-killer that we can and go stronger when necessary because the stronger ones that we have found so far have codeine which makes her IBS worse or anti-inflammatories which gave her an ulcer last year and we are trying to prevent that from happening again. When she takes the stronger ones we increase her yoghurt intake (for the fat and protein) and give her a proton-pump inhibitor too to try and protect her stomach.
hmmmm...just thought of something....I wonder if one can get pain patches that would take the stress off the stomach....

Here is a very interesting article about the Circadian Rhythm

http://sleepfoundation.org/sleep-topics/sleep-drive-and-your-body-clock

Thank you Daisy.
We are also looking into one of those programs that is supposed to change the computer screen light from a blue light which inhibits melatonin to a redish "sunset" type of light that encourages melatonin production.

Is it possible to start a sleep journal?

Figuring out if she can't "fall asleep" vs "Stay asleep" are two important things to know.


There are natural products out there.
Melatonin helps one to fall asleep, but that is it.
While Valerian Root helps you to remain asleep.

Then there are other supplements too to help with relaxation to fall asleep.

Passion Flower
5HTP (aka tryptiphan)
and a few others I can't remember right now.

Some products will have a little of everything.

And then there are the OTC sleep aids. All of these contain the one main ingredient which is diphenhydramine (dye fen HYE dra meen). This is basically Benadryl.

This has been known to either help someone fall asleep (like me - if only taken in a tablet form) or it can aggitate you and keep you awake. (This happens to me if I take it in the capsule form).

Our boys both take Melatonin at night due to their ADHD, ASD & Sensory processing disorder because their bodies get revved up after 7pm. They can not slow down enough to fall asleep w/out it.

Based on my reserach, kids can take up to 3mgs/night. But most kids start out on 1mg. (we use a 1.5mg spray made by nutrisource). While adults can take up to 6mgs.

Melatonin is what causes us to get sleepy. Our brains naturally produce it, but at times, the production can be cut off due to a variety of ailments. Our brains produce it once the sun goes down, so if you are taking it as a supplement, it's important to turn down the lighting and screens (Tv, tablets, etc) for it to start to work.
Oh and never give or take Melatonin during the day, as we were told by a pediatric sleep specialist that it can mess with sleep cycles pretty bad when taken incorrectly!

And today's fun Melatonin Tidbit is sponsored by the Poison Control Folks:
Melatonin is one of the safest products out there! Yup, we had to call once because the hubs and I didn't communicate and we both gave the kids melatonin. So they got an adult dose and slept well that night. I don't recommend it, I didn't sleep a wink that night as I kept checking in on the kids to make sure they were breathing!!!!!!

I hope your daughter can catch a break soon and get back into a good sleep cycle again.

Do you know on what basis your daughter was diagnosed as having fibro? Has she been tested for ANAs, anti-DNA, sed rate, CRP? I looked back at earlier posts so I see you live far from "civilization." (I live in the country, too, but I can get in to NYC, pretty easily.) She is so young to be going through all this. If she had an autoimmune disease there are drugs out there that can modify her illness. One quick, no test way to see if she might have an inflammatory illnesss is a prednisone trial. My rheumy put me on 20 mg of prednisone for 4 days, 15 mg for 4 days, 10 mg for 5 days and 5 mg for 4 days. I get much better on this regime. If it is some sort of hidden inflammatory disease the improvement might hold over for some time and your GP will know she has something else going on. I have had whatever I have for 36, and I still have doctors going back and forth--is it lupus, another less define autoimmune disease or "just fibro" or both. I was quite sick (not as bad as your daughter), but a doctor put me on one of the less toxic drugs for autoimmnue disease (plaquinil) and I did get much better and was exceedingly fortunate that it stuck for quite awhile. I also tried alternative medicine. I went to a homeopath for a some years, which I did think help. (You can investigate homeopathy yourself and buy remedies online. It has the benefit of being cheap, but you have to try different remedies to find, which ones work.) Also, I went on a strict elimination diet and found I had a particular allergy that was really aggravating pain in me and it wasn't gluten it was citrus. Some people don't believe food can cause pain, but it did for me. Avoiding citrus made a huge difference in my pain levels. Your GP can do a prednisone trial, but if she improves on it I think you should get her to a rheumatologist--even if you have to have a fund raiser. These days you can do fund raisers on line.

I still use homeopathic remedies for sleep, since I wake up early and want to return to sleep. Some that work for me are coffea cruda, gelsenium, argentum, and a mixed remedy call "Quietude." Alot of these are better at helping me return to sleep, than getting to sleep.

I really hope your daughter can find some things that help her. I had a long near remission, but I kept trying everything--just nothing too expensive. I didn't have a lot of money, so that was always a limitation, but may have protected me from true quackery to some extent.

Wonder - I am going to ask our doc and our pharmacist about those meds you mention. And the size of that melatonin dose she is getting before I give her some tonight. I like the idea of a sleep journal too, it could help us pinpoint some patterns. Thank you.

Ann - After many blood tests and doctor visits we canceled out anything else that we could think of. There is no suitable rheumy nearby. Only across the country - the one that is closer doesn't believe in fibro. We have talked this through with someone who has traveled extensively to doctors and specialists for fibro. She just ended up poorer and frustrated.
My daughter checks out on all of the tender points, the fatigue, the pain etc. The doc tried prednisone two separate times about a year apart. There was a slight improvement and then back again.

It seems that everything we try works for a while (a couple of weeks at the most) and then stops working. I will speak to him about lupus and other auto-immune diseases. I know he is in consultation with his peers around the country about our case because he really cares about his patients. He takes it personally that my daughter suffers like this and he has no real solution :-)

Well, then, it does sound like your GP is thinking about the alternatives. For me, I get significant relief if I take prednisone the way I described. Shorter courses were more iffy. Fibromyalgia, from what I have read can start in children. I know it's out of the question, but Dr. Oaklander has done research in Massachusetts on fibro in children (she has included young adult in her studies, since many have had it since childhood.) She found a good proportion of them has small fiber neuropathy. I understand she has had good results in some with IVIG. I think this is really expensive and I don't know what your health insurance is like in South Africa. I wonder if your GP could call her or look into her research.

I seem to have both an autoimmune disorder and fibro as best I can figure out.

It breaks my heart to hear of anyone so young dealing with this.

Definitely talk to your Doctor before adding any kind of Supplements if she is taking Medications. But it is always a good idea to talk to your Doctor before taking supplements on your own even Melatonin.

I have never been a morning person. I worked second shift in college for 4 years. Third shift for 10 years . First shift for about 8 years . My body was happiest on 2nd shift.

It is hard to apply the suggestions of good sleep hygiene for some with fibro - at least for me. Often fatigue will hit me suddenly hard and I have to nap or fall over - can hit at any time - then it is harder to keep my body on a regular "normal" schedule. Last night I couldn't sleep at all because my pain meds just were not getting that pain to calm down - so I was awake all night and then slept from 8 am to 2 p.m. - I am just thankful I got some sleep. Any how just sharing one perspective. I sleep when my body allows me to and/ or gives me no choice. I am not saying it is a good way to live.

I take Trazadone to sleep deeper . My former Rheumatologist kept increasing it to the point where I was a complete zombie the next so I slowly weaned back the dosage.

I know I haven't been helpful. I agree with others on a sleep journal - I should do that myself. Your daughter is blessed to have a supportive mother. I hope you can find a solution to help her.

Oh Yes, I KNOW THIS WELL! As you see from the late hour. My cutoff is 1am, so I won't type long.

I've been through all the meds, and the best for me is Rozerem...supposed to help specifically w/circadian rhythm. I've had terrible insomnia for quite a while now. No on the ambien, because it stops working, no for lunesta or sonata...didn't work for me...high dose melatonin did when I wore myself and make sure I exercise--10 mg. also Benadryl, even taking 2 at once. I also have anxiety and shutting down the brain during tax season became a big problem. So, the doc gave me lorazepam to try and that did the trick. In fact, most times, i'd prefer that over rozerem because the roz makes you groggy and hungover....so does Benadryl for me but wears off quick.
hope that helps! good luck. she'll have to force herself to try and stick to a regular sleep/wake cycle to get the body programmed too.

In reading your one reply about a pain patch....yes, I got off hydrocodone and went on Butrans patch. It was awesome when I couldn't get control of my pain. I am working through injuries from 2 recent accidents, so I've needed it and supplies constant pain relief. Also calmed my fibro down. I was on 10mcg which was strong and made me a bit depressed.
5htp is great for sleep but is also a natural serotonin agent...you'll want to cross reference the herbal supplements and drugs to make sure you don't have any whacky side effects like Serotonin Syndrome where she gets too much serotonin.

I use drugs.com to put my drug list in so when I go to doc I can pull it up on my phone. You can also look up side effects of herbal supplements on WebMD. Valerian has been known to interact with some prescribed medicines, just fyi. Better safe than sorry I say.

OK, hope helps!

I don't have the energy to read all the replies rt now, so if I repeat something I'm sorry.

A couple of things from your post: having the room "warm" can actually make it harder to sleep....ideal sleep temp is somewhere around 68 degrees. The body naturally cools down to sleep, but having the room too warm prevents that. A warm bath 1st, like you mentioned can be helpful, though, because it promotes the body's cooling down afterwards and the warmth during the bath can be relaxing.

The supplements you mentioned are good, but make sure she takes the B vitamin early in the day, as they can keep some people awake, too. The serotonin med could also be causing an issue. And, if she is getting a headache from the lavender, then she could be allergic to it, and the body's response to allergies is to increase histamines and cytokines, both of which keep people awake.....keeping it far enough away to prevent a headache can still cause the histamine and cytokine reaction, even if she doesn't get symptoms.

Things that can help with sleep:
gaba
L-theanine
camomile
sleepy time teas
melatonin (though is he has orthostatic intolerance - common with fibro and CFS patients, then she shouldn't take this)
valerian
tryptophan
kava kava (this should not be taken every night, though....can be hard on the liver if taken too frequently, but it can help when having a particularly bad nt)
passion flower
bach rescue remedy (this is good if she can't stop anxious thoughts from keeping her awake)
holy basil (another calming one)
phosphatidyl serine (this is good if she has too high levels of cortisol, otherwise, this is not good, as it lowers those levels)
glycine (it says it supports energy levels, but it does so, in my case at least, by making me sleepy - thus better sleep and more energy the next day, so I take it at nt)

also, re circadian rhythm, light boxes 1st thing in the morning can help a lot (since she isn't even falling asleep until the morning, she could use this 1st thing when she wakes up, and then try to gradually move that wake up time earlier bit by bit......I have one and it is the only thing that has really helped with my circadian rhythm issues......it has not completely fixed them, but instead of sleeping at 7Am until 5 or 6PM, I now sleep by about 2 or 3 AM until about noon)

also, avoiding blue light in the evening can help (either stay away from the computer, phone, TV, etc, or get some orange lens glasses to block the blue light)

Prednisone only works for a while and sometimes not at all. It is also hard on the kidneys and can cause diabetic issues if used a lot. Is there a pain clinic anywhere close to you? They are a lot more fibro friendly than they used to be. I feel sad for your child to be so young and afflicted by this horrible illness :(