Whether you have FM or CFS/ME you will most likely identify with sleep issues – whether you are sleeping 20 hours a day and are still exhausted –or you can’t remember the last time you had an unbroken and refreshing sleep.
But do you know what your sleep patterns are? How many times you wake up/get up during the night? Or how long you’re sleeping through the day and night?
Or how your quality of sleep relates to things like pain, fatigue, concentration and memory issues? Do you know if your pain increases as your sleep decreases?
Being able to achieve a good (and dare I say, ‘normal’) sleep at least most of the time can have a dramatic effect on reducing your pain, increasing your cognitive skills and can reduce depression as well.
Therefore, it is imperative to get a better understanding of our sleep so that we have a fighting chance of improving other aspects of our lives!
Validation at the Doctor’s Office
For me, using my Google Android FibroMapp app to provide sleep report to my GP was the start of a whole new relationship with my doctor. When she saw that on average I was up 14’xs a night (and that my pain levels were at at least 8, not to mention my major brain fog, perception issues and more) she started to take my experiences very seriously.
The first thing was to try medications to help me sleep. I can, hand on heart, say that I pretty much tried everything – OTC, Rx and herbal/supplements. By using my Health Rising FibroMapp to track my sleep experiences I could tell exactly what was – and wasn’t helping. (In fact NONE of the above helped!).
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The app also enabled me to see my sleep cycle over the course of a month. I found that during flares each month I was either up almost all night (and day) for five days. I knew flares weren’t helping my sleep but I didn’t realize they were having such a dramatic effect. (Maybe I was too groggy!) Obviously avoiding the activities that trigger my flares is important to both my sleep and pain.
Finally, after all this time I have found a combination of melatonin and LDN (low dose naltrexone) to be my ‘miracle meds’. It wouldn’t have happened without finally having my physician on my side – and that took documenting my sleep issues for her.
Find out how Health Rising’s FibroMapp app can help you gain more control and understanding of your condition by going here.
A Multidimensional App
Use the reports the app provides to inform your medical care professionals and to assist with disability and insurance claims to provide a detailed ‘snapshot’ of your daily experiences with your illness.
On top of this, track your medications (with alarms), flare ups, other symptoms, pain, the type of aids used daily, a journal, pain and much more! The FibroMapp is really 8-in-1 apps! All of which you can personalise, too.
Get the Fibromap app for your Google Android tablet or smartphone here for only $2.99
(IPhone and IPad users – the Fibromapp App for the IPhone and IPad is almost ready!)
Health Rising receives a portion of the sales of the Fibromapp app bought through this site
My fibro experience with frequent awakenings is this:
Trazodone every night keeps me asleep usually
Wind down (sometimes as much as 8 hours of doing nothing) is important
Exercise like walking can be helpful to induce sleep
When all else fails, clonazepam or medical marijuana (high CBD).
Main emphasis is on calming nervous system prior to bedtime so that sleep is possible plus medication on a chronic basis.
It sounds like you have a good handle on this Shakota. Dr. Friedman also emphasizes calming the nervous system down prior to sleep. Thanks for passing that on.
I to use Klonapin and medical marijuana but the THC is high ugg…. But I have me a baby that is 1% THC and the rest CBD. Cant wait until she is ready I Pray this is going to work, I am not one for a bunch of pills. I almost lost my hubby over the pill roller coaster. I really don’t know what it is to have a pain free night of sleep. What do you do yourself to calm your nervous system??? Any recommendations are greatly appreciated.
Hi Cindy, I wish I could has access to medical weed.
In the meantime I I listen to binaural beats put me to sleep. I’ve used binaural music/ beats for over 10 years and it’s one of my most important tools for relieving pain and providing a calming effect for my mind and body.
Theta brain wave binaural beats are the most helpful for me. Delta brain wave binaural beats are often used for deep sleep but I find Delta doesn’t work for me. And some people find Alpha waves plenty relaxing.
Music, nature sounds, etc., are often overlaid on top of binaural beats. If not all one hears is a steady tone which can be unpleasant for a few people but not usually. Headphones or earbuds are needed for binaural beats to work.
Holosync, and Hemisync are both providers of high quality binaural beats and use state of the art equipment to create their beats with. Last time I checked Holosync sold two Theta CDs I like a lot. One CD has the sound of rain on it, and one is the sound of the ocean, and I mostly only ever use theirs.
“Full Length Binaurals” on YouTube has some of the best quality free beats I’ve found. Solfeggio is particularly nice sounding. Some of the others are only a tone without any music.
I stumbled across BB by accident and I’ve experimented with different ones through the years and I’ve found that some are not helpful. But, boy is it ever worth it when you find one that works for you!
the key to my frequent night time waking – and facial pain, probably due to inflammation of the trigeminal nerve – was simple. I had laryngopharyngeal reflux, sometimes called silent reflux. When it occurs only at night when you are asleep the symptoms are easily missed. EVERYONE with disturbed sleep should try raising the head of the bed to see if it helps. If it does lansoprazole, taken in the evening not the morning as your doctor may suggest, is the answer. I don’t think I’m on a high enough dose to cure the problem.
With a divan bed it’s easy to raise the head by putting a piece of 4×2 (cut to the width of your bed by your local builders merchant) under the bed and taking any wheels off the bottom. Or put a wedge under your mattress. Extra pillows do not make an adequate test, although you an put them under the head of your mattress if that is all you can manage.
This can be very effective. For people wanting to know more check out this blog – http://www.cortjohnson.org/blog/2013/06/16/heads-up-are-you-missing-an-easy-way-to-improve-sleep-and-health/
Looking forward to the iphone/ipad compatible app.
This may sound naive, but how does the app track your sleep? With a wearable device like Fitbit, the device tracks sleep somehow because it is attached to your body. With this app,, do you have to record each time you wake up or hold onto the phone/tablet all night?
I don’t have an app -because I don’t have a smart phone – but I believe you have to record it when you wake up…
Downloaded it a minute ago Cort. I shared in my networks. Great job, it looks very comprehensive. I am anxious to begin. It looks like a tool that would work well. I see I can edit medications and much more. This is a gem.
I have an HTC phone and am wondering if it is compatible for iphone apps like this one, can you assist?
What is an HTC phone? I can ask the developer.
I tried LDN a year ago and, unfortunately, it disturbed my sleep. I awoke like clockwork every hour and also had the unpleasant side effect of loose bowels. I lasted six weeks then gave up on it. After reading so many positive reports on LDN, I decided to try it again in the daytime. I had a question for Skip, the compounding pharmacist, re the effectiveness of daytime dosing. He said it was 1/3 as effective. He suggested I try it again at night with 3 mg of Melatonin. I did and after almost 30 years of CFS, the past 5 years being mostly housebound, I seem to be in remission. In the past, I have had a day or two now and then of feeling human, but now I am functioning better on a daily basis. I cannot say for sure that it is the LDN (I also have begun magnesium regularly rather than hit and miss) and I don’t want to be crushed as I have been in the past when a better day or two every couple of months ended in relapse, but I am hopeful.
Thank you Cort for providing information that has helped me through these lost years with this insidious, nebulous illness called CFS and given me hope that there may be happy days ahead.
If I have to be awake enough to type on a small computer device, it seems like this would make the period of data collecting worse that usual. When I had sleep studies, they showed that my brain jumped to the awake state for a second or less, and then longer as my sleep period (rarely night time) went on. The sleep neurologist saw it, pointed it out to me, but she had no ideas what to do about it. I ended up taking clonazepam (generic Klonopin) and a few drops of doxepin elixir. That worked for many years. Now my sleep is more broken up, as I will sleep abruptly for an hour or two with no medications in me, and then be just awake enough not to sleep for a long time. With the medications, I no longer get the occasional miracle of 6 or 8 hours of sleep, even with all its disruptions.
I need something new, I think, but I have no new sleep doctor to advise me on useful experiments.
The old advice was to keep trying to fall back asleep (what the doxepin did with both drugs together, let me fall back asleep), not get up or turn the lights on, or punch in data to computer. That would bring me full awake, I think.
Maybe this is one of the ways fibromyalgia is different from M.E. in the way sleep is disrupted?
Thanks for describing the application, and explaining that it requires typing in the data to get those reports.
Was all excited about this new app…to then go to playstore and find it’s not available in my country-Spain 🙁 Oh well….
To start my wind down before bed I use red-orange or orange lensed glasses to block blue and green light, those kinds of light come from white lights and especially from electronics. Studies have shown that those spectrums can disrupt circadian rhythms and stop melatonin production. Some people are more sensitive than others. Also start lowering the amount of lights in the room or if you have a lamp direct it away from you. Both the glasses and lowering lights and electronic usage/brightness help tell your body that it should be getting ready for bed.
This method has helped tremendously with calming my system down (though not on horrible pain nights, those nights nothing seems to help). I also take medications and supplements.
Ps, yes you might look like robocop at night when you wear the glasses, but don’t let that stop you.
Interesting – thanks Telula, I had never heard of that.