Several ME/CFS and/or FM experts have said that you can’t fix fibromyalgia or chronic fatigue syndrome without fixing sleep. Dr. Bateman, whose SolveME/CFS presentation on sleep we’re going to cover soon, said she’s tried literally everything she can think of to help with sleep in FM and ME/CFS.
Given the negative effects poor sleep has on our immune, neuroendocrine, and central nervous systems it’s not surprising it can be so debilitating. Perhaps the most haunting sleep study was one Andrew Gross referred to which found that just a couple nights of interrupted sleep – the kind many people with ME/CFS and FM regularly experience – was enough to make healthy people look like they had fibromyalgia.
There’s nothing like bad sleep..
Increased heart rates, reduced heart rate variability, fragmented sleep and lack of deep sleep have all been found in ME/CFS and FM sleep studies, and the best is probably yet to come when the Zinn sleep studies from Stanford get published.
It’s not that ME/CFS and FM are sleep disorders per se, and that fixing the sleep problems found will cure either, but of all the “loads” that contribute to the distress in these disorders – poor sleep, when its present – may be the heaviest.
In this first Health Rising Community Report on sleep, we ask what’s going with YOUR sleep and what has helped and what has hurt.
Please take the survey below.
Please note – there are questions in the form of polls (diagnosis, sleep quality, etc.) and surveys (treatment effectiveness questions mostly). The results of the poll questions are available immediately; the results of the survey questions will be provided in a couple of days.
I feel that getting good sleep is important, but the illness is always there regardless. The inflammation in the brain from the immune system is what causes the chronic encephalitis, and I know that one of the main symptoms of encephalitis is sleepiness, so the body seems to require a lot of rest for fighting.
I think Dr. Bateman believes something similar….Cure the illness cure the sleep problems. Impact the sleep problems but don’t cure the illness – you’ll still probably have unrefreshing sleep to some degree….
I went outside the square after reading an article and research on the stress hormone cortisol and learned that if you are stressed your cortisol levels can reverse themselves … reversed high to low will keep you awake all night. I researched supplements to take and after 3 months on them began to get, for the first time in years, really deep sleep. I’m convinced it’s the quality of the sleep I now get which has given me good sleep.
My fibromyalgia reduced by 80% and my chronic pain improved tremendously.
It’s the lack of those deep sleep patterns where the body refreshes and revitalises that cause the problems … which then magnify. I’m not saying anyone with fibromylagia ever sleeps well, or with chronic pain but the cortisol readjustments definitely gave me actualy quality sleep.
Congratulations Lynn – what supplements are you taking?
I agree, lack of sleep makes everything much worse but a good night sleep although helpful doesnt take away the constant malaise and lethargy.
If they could put us in an induced coma once in a while, maybe our bodies would actually get to the stage where they repair themselves.
Agreed!
that is actually a good thought for shutting down the stress and other things and allowing some serious sleep healing. Meanwhile they would also have to be giving us D3 and anything we are low on because all the sleep without our levels being at the right level alone isn’t enough. I do now sleep but have a regimen that is just working more days then not and getting deeper sleep.
My body pretty much puts itself into a coma. The last 3 months I have only been getting 1 or 2 hours awake a day and usually when this happens I get about 6 or 7 hours awake a day. No amount of sleep stops me from being extremely exhausted. My boyfriend left me 2 weeks ago too because I have been asleep so much this time that I am just not there
agree with your post David all these factors do affect me – the best thing I have found for sleep is a muscle relaxer
I also have the opposite that does not seem to get addressed on these surveys and that is too much sleep due to total exhaustion like 12 to 18 hours and still feel pain and fatigue upon waking.
Another great remedy is hypnotic instructor lead binary beat visualization software.
When I finally get a good sleep pattern going, I feel like I’m on the road to recovery. The only problem is, the longest that I’ve been able to keep this going is about a week, then I usually crash for several weeks.
I am using 5HTP from a Naturopath and it is helping me sleep from 11pm till 7.30-8.30am.
I also practice Sleep Hygiene, you can find info on Centre of Clinical Interventions website in WA
All the best
This was such a great, needed, and detailed survey! Really good job, Cort! If I had taken this survey a year ago, I would have marked it up with severe insomnia symptoms. Like most ME/CFS folks, I’ve had severe insomnia for 17 years. I mean, I HAD severe insomnia until three months ago. I sleep like a baby most nights now; usually sleeping through the night, or waking up only once or twice. And when I do wake up, unlike before, I fall right back to sleep. The only reason? I started using structured water a year ago. And it is having many, many other health benefits that I live to share with the world. I tell people to research my website and ask their bodies if they need structured water. Structured Water has been a Miracle for me! xoxox, Judy
No kidding…Isn’t that something. I tell you one thing – I have trouble with water and I’ve always had troubles with it since ME/CFS started. I used to feel utterly blank and wigged out after drinking water in the earlier days. If I drink too much water I feel sapped, have to urinate constantly and get dry mouth of all things…
Right, Cort, no kidding! I understand what you are saying. There are lots of people who have the same problem with water! And I’ve heard from some who once they got a structured water device, became able to drink water easily and enjoyably! Again, not kidding! It has to do with dynes (surface tension; with SW surface tension is much much lower than tap or bottled water. Your tongue is dry after drinking water with a high dyne because it can’t hydrate you—and you are more tired when drinking unstructured water because your body has to work so hard to process it), and it has to do with the water being alive, and it has to do with the natural energy restored to the water, and it has to do with lots of other things! Not to mention how sweet SW tastes!
Regarding my insomnia being cured, I think the main reason for that is because my body is becoming hydrated. The main cause of insomnia is dehydration and how hard the kidneys have to work when we’re sleeping, which disrupts our sleep.
I’m VERY excited about getting to share my website with you, Cort, because I’ve been a long-time fan of yours!
When I was stricken with this dd all those years ago, my goal, like all of ours, was to get well and to help others get well!
I’ve gone the holistic route from the start and that helps, but nothing helps like Structured Water does. It’s helping thousands of people, animals, and plants all over the world in so many ways.
Once again, and for Kathryn: http://www.structured-water-devices.com
ENJOY!!!
I sl ways have a dry mouth and wake up several times per night thirsty or needing to urinate. Have found ok need to drink coconut water to rehydrate properly as it has electrolytes in it that plain water does not. I drink over 2L water a day and am still thirsty and dry mouth. Have found MI PastePlus helps with dry mouth at night by promoting saliva production.
I have never heard of structured water. I have found I have to drink Penta water to stay hydrated. My IV nurse told me about it years ago when she was having touble with my veins and told me I was dehydrated even though I was drinking 2+ liters of good water (no clorine, no floride) a day. I continue to drink 33 oz or more of penta a day. They run medical grade oxygen through it to break up the water clusters into single H-0-H molecules that is easier for the body to absorb. I wonder if that is reducing the surface tension.
Sounds interesting Judy. What is your website? I’m keen to try anything to help me sleep. I’ve never heard of structured water.
Silly me! I forgot to give my website! (Thought it would show up in my comment from my URL in the website box.) 🙂
http://www.structured-water-devices.com
I bless you with bliss, health, and abundance. Judy
I am sorry but when someone is telling me how wonderful something is and they are trying to sell it-I am suspicious.
Had all kinds of filters and now I am on High Neutralized water.
From Health food store. Iceland Springs PH 8.88. Is working great.
Also if you are dehydrated there are many over the counter low sugar and high Pott electrolyte drinks we can use.
Glad it works for you-not sold on it yet.
Carole
I understand where you are coming from, Carole! I tend to think the same way. But, perhaps you could think of it this way: If there were no one selling Structured Water Devices, no one would have one! And that would be HORRIBLE! 🙂
All I can tell you is that when I started experiencing remarkable healing to my health and spirit with SW, I knew I wanted to start sharing it with the world and I became like a scout for a distributor.
I only suggest to you that you find out for yourself if it’s the Real Deal or not!
Who knows, it could save your life!
Unstructured water is leaving humanity dehydrated and that dehydration is causing so much illness.
Read books like, “Your Body’s Many Cries For Water” by Dr. F. Batmanghelidj.
I applaud you for making healthier choices with the water products you are buying. That must get expensive!! A one-time purchase of an SW Device lasts for life! There is a video on my links page about the mass quantities of money going structured saves you! 🙂
I bid you so much health and hydration!, Judy
Judy- If this works for you , it works for you!!! That is great.
My other issue on sleep is everyone should be evaluated if you are having sleep issues by a qualified Sleep Specialist. Most ins will pay for it and it is invaluable.Please don’t guess on thisby yourself and take meds to treat it before you know what the problem is.
Ambien can be deadly!!!!
I was misdiagnosed on so many levels as to why I couldn’t sleep. Heart Failure was one- as I was having Palpitations.Would wake up startled, did not know why.
Finally when I had the Sleep study done and realized I had quit breathing over 30 times a night and when I was waking up due to this. My Palpitations went away and I sleep through the night.He also found out I have mild Asthma.
Had 3 other Dr. ck me before this. No one caught any of this.
Keep the info coming-it all helps.
Carole
Wow, Carole! That sounds scary! I’m so glad you are doing better!
I totally agree with you about the meds and I’m glad to report I don’t take them. Pre-structured water I would take Motrin PM sometimes or Simply Sleep sometimes or even a low-dose Valium sometimes to help me sleep. I never ever felt safe or comfortable doing that.
Pre-SW I woke up 10 times a night. UGH.
The truth is SW helps absolutely everyone, without fail. And there are amazing reasons for this. SW helps everyone in different ways because we are all different.
And this is going to sound totally whack, but they’ve researched and experimented and have discovered that structured breathing does wonders for health issues as well. (Told ya it sounded whack! Which is why it took me a couple months to warm-up to the idea of breathing through my Portable Unit!) Structured breathing is helping clear up my very severe congestion/allergies. No lie! SW already helped with that but this is taking it to the next level. I know with time, I’ll get better still. And guess what? (Bet you guessed it!) Structured breathing is helping asthma patients get off inhalers! No jive, girl, no jive!
Tons of research via my website.
I live to serve.
xo, Judy
http://www.chem1.com/CQ/clusqk.html
I’m really interested in your methods to combat sleep deprived and other stuff were you from Judy I’m in UK really had enough dark thoughts lately help if u can angelawilson16@gmail.com. thanks xxxxx
I will email you, Angela. Meanwhile, please research my website. We do free worldwide shipping and payment plans for Structured Water Devices.
xo, Judy
Angela, the email address you provided didn’t go through. Judy
I DO know (subjectively in my heart of hearts) that if! I could truly get consistently good nights’ sleep I would improve (CFS)….I’m sure of it!!
I’ve had the same experience, over & over.
Me too!!!
I feel much the same way. I started to experience the non-replenishing sleep long before I got to the point that I couldn’t exercise without PEM. I’m not aware of another illness where this description of dysfunctional sleep applies so across the board as it does for CFS/ME. This dysfunction is at the core of our illness it seems to me.
Galia, try Structured Water—what have you got to lose? I’ve been posting a bunch about SW above.
I bless you with bliss, Judy
Yes I agree David. I use Restoril for sleep, otherwise, I would wake up 3 or 4 times and often not able to get back to sleep. Even with the restoril tho I feel unrested when I wake up but I would rather get some sleep than no sleep
Sleep is a great key to lessening the pain of fibromyalgia. I have suffered with fibro for at least 25 years. If I can get 8-10 hours of good sleep I usually feel pretty well. However, I have to get up to go to the bathroom at least twice in the night which interrupts the sleep cycle. I read everything I can pertaining to fibro, sleep and fatigue. Thank you for researching the newest findings in the fibro and sleep world!
Welcome – thanks Patricia
Yes, I agree sleep is better to have a somewhat productive day with some energy.
(Pro Health Fibro-Sleep 0has been a heavenly..3 caps & with in 20-or so minutes. I am out.
I just wish that the different Dr’s. would talk about the constant dizziness 24/7 for 35 yrs. why this occurs to some people. I have not heard anyone talk about this issue. It reminds me in my 20’s and 30’s when I would drink alcohol but I no longer can do this but this is how I feel all of these yrs. Beside can’t think straight sometimes. I might use one word that comes out of my mouth but my brain meant another word. Or sometimes it’s hard to remember. I was 34 when this Me/cfs came on. Now I just turned 69.
Thank you Cort for all your works with Health Rising. I don’t always understand but it makes me feel that something is being done about it to find the cure if there is one!?
Thanks Danielle – Dizziness is rough – I experienced it on and off for a couple of months two years ago…It was not pleasant. I wonder if you have a similar kind of thing going as Lauren Hillenbrand does with her vertigo…
I know just what you mean about the dizziness. I find it is guaranteed to be a problem after using my eyes for reading, especially on the computer. Computer use or book reading can put me a full relapse which can last for a week easily. DVDs can be a real problem as well. I let my TV go years ago. I know I shouldn’t watch anything at any time but it’s such a great distraction from the limitations of this life that occasionally I test the waters and of course overdo it. Do you have triggers that bring it on or is it with you the whole time? My mother who had undiagnosed ME/CFS felt fine until she got out of bed in the morning. It was an incredible burden for her and something she never got an answer for.
What has helped me the most is changing my diet by eliminating sugar, gluten, dairy, fruit and caffeine. I basically eat protein, veges, beans, filtered water. I eat every three hours to keep my blood sugar stable. I have been working with a fabulous nutritionist, Karen Hurd. Check out her website at http://www.karenhurd.com She changed my life by recommending a new diet. I have followed her recommendations for 16 months. I have gained so much more energy and my health has truly improved. Sleep each night has been key also in helping my body repair itself. Basically I am trying to build up my immune system so it can fight off the infections (EBV virus and HHV5 virus) and get them to go dormant again. I am confident that I will fully recover from CFS. My change of lifestyle has also helped me tremendously. So diet and life style changes are my solutions to recover from CFS. Good luck to everyone. We all know exactly what we need to do to heal our body. We just need to listen to our intuition and follow it. Also try this website for support http://www.cfidsselfhelp.org/ This was a tremendous help to me. Take care.
Thanks Amy,
I believe blood sugar must be a problem for me. If I don’t eat a good supper I have a terrible time going to sleep.
I would think if it was a Blood Sugar you would need to eat a small meal at night.
Just the opposite for me. I eat my large meal about 3 and very little at night.
but fluids.
Have you been checked for Diabetes Incipidus?
Also I rec everyone have a Professional Sleep study Physician do an overnight sleep study. Don’t guess at this.
The CPAP machine has saved my life. Many of us quit breathing during the night and don’t know that is what is waking us up.
The CPAP machine keeps our airways open.
Carole
Totally agree- we need to take responsibility for being our own advocates.
The diet is everything. !!!!
Carole
The Karen Hurd advice is similar to Dr. McDougal diet. I have Hypoglycemia
and also had Cholesterol going up. have been on the Gluten free for years, now am still on it but have cut out Red meat or any meat and using only Veggies and
Beans as my Protein. Bakes fish once in awhile.
My glucose in 12 weeks is down to normal and my Cholesterol Particles have
dropped from 1433 to 1000. Cardiologist wanted me to be on Mediteranian diet.
I tweeked it some as very little fish. Mostly Beans as protein and not counting carbs, just fat. No Animal Protein. JUST READ LABELS!!!
Cardio Dr. was amazed and is now rec this diet to heart patients.Bread is Millet and Flax-Gluten free.
Karen sounds like she is on the ball too!!!
It really is not hard to stay on. Does require more prep.
Carole
amy… are you still doing ok on karens protocol. ? would you be open talking to me about it ?
I just scanned this quickly so I may have missed something, but it’s difficult to answer the questions when I’m not sure if they’re asking how sleep is WITHOUT sleep meds, or how it is WITH sleep meds. Without meds I don’t think I’d be alive today; with trazodone, I sleep fairly well.
Thanks – good point. It would have been good to have that question in there. Be sure to mark Trazodone down as working pretty well. Thanks for the suggestion.
I got half way through filling this in but towards the end of the section on what i had tried to overcome it, sleep hygene etc. I just couldn’t go on with the form jumping back to the beginning every time I ticked a place. Don’t know is it just my computer doing this?
Sorry about that – I don’t know what happened – it shouldn’t be doing that. Are you using a tablet by chance?
The survey assumes you have some kind of sleep pattern like normal. What I have found works best for me is to ignore day/night expectations. I can only sleep 3–4 hours at a time, no matter how much I try sleep techniques. So I get up and proceed as if it was a normal awake time and do work or play. In 3-4 hours I am tired again and can sleep another 3-4 hours. I have the luxury of being able to do this as I am the only one in the house and am retired. I sleep 3-4 hours. Up 3-4 hours. I have no night or day. Most times I wake up feeling somewhat refreshed. The other thing that has helped if upping the antidepressants. I take Prozac, Cymbalta and trazadone. The Cymbalta has almost eliminated the pain and the trazadone helps the sleep I have tried everything else. This works and has given me a fairly productive life.
For years, I insisted that I slept well. After all, I wasn’t someone who (always) spent hours staring at the ceiling or pacing the floors in the middle of the night. But I never awoke “refreshed.” I can remember that feeling–from being a kid. Waking up, feeling excited for the day and wanting to get up. I’ve felt a lesser version of it from time to time over the past 20 years–maybe once a year or so. I think we may need to change the focus from the amount of sleep we get, to what we get from the sleep we do manage. I’m not sure that number of hours asleep always correlates with how refreshed I am.
Yes, Nancy, I had the same experience. When a doctor asked if I slept well, I’d always say, “I guess so,” because for a long time I’d fall asleep, and then I’d wake up, and not be aware of the time inbetween. Finally someone asked, “Do you feel refreshed when you wake up?” and the answer was a huge, resounding NO! I finally realized that the doctors had been asking the wrong question all along.
I have had this illness for 5 years and it has gotten progressively worse over Tha time. The Las 2 years have been bad. The last 1 yr has seen my life almost come to a stand still. I am lucky if I get an hours worth of energy a day, I can only walk for about 20-30 mins if lucky a couple of times a week, I need my husband and sons help to do most things and rely on crutches or a wheelchair most days when we are out and about. I cannot go out un aided and can no longer walk my dog during the day. I spend most of my time stuck indoors on rest. I feel like I have flu 24/7. I am waiting on a referal to an M.E clinic. I feel like I just exist now and have a very limited quality of life
Dee, hang in there. Yes, this illness sucks. It takes away the ability to live our life. But research is starting to look into the nuts and bolts of it, and I’ve got some cautious optimism that researchers are beginning to make progress.
When you get your referral, make sure you go to an M.E. clinic that is respected in the field. One of the smartest things I did in the last 5 years was to stop trying to see local practitioners and instead went to Dr Klimas’s clinic down in Florida (the Institute for Neuro Immune Medicine in the Miami area). Yes, I have to travel to get there, which is an effort, but they are up on the very latest in what’s going on in the field. There are a couple of other places around the country that are equally good. If you are referred to someplace local, ask them if they know about Dr Nancy Klimas or Dr Daniel Peterson. If they don’t, keep looking. I mention this because I once saw a doctor at a local “fatigue clinic” who had never heard of these doctors. That’s when I knew I needed to find someplace else. They are at the top of their field. If a doctor doesn’t recognize their names, that doctor is not up-to-date on current CFS/ME research.
Sorry, I’ll get off my soapbox now. But really, you are not alone, and I hope you can hang in there with it.
does anyone know of any testing going on in the uk for fms/Ms/cfs I am always willing to put myself out there as a guinea pig if it can improve my life slightly
The number of hours I manage to sleep do not result in my feeling refreshed, ever. I can only sleep more than 4 consecutive hours with medication (Elavil currently). IF I manage to sleep 8 or more hours in a row, I still don’t feel refreshed. In fact, it is more likely I will go back to bed again after only a few hours of wakefulness.
I have tried everything from scheduling the time I sleep, sleep hygiene, making sure the room is cool enough, to meditation and even use F.lux – a computer program that changes the kind of light your computer gives off. It emulates natural light on your monitor, and yes that helps some. Read more about that here: https://justgetflux.com/
But I still feel unrefreshed, even exhausted, no matter how much or little sleep I get. I have sleep apnea and am 100% compliant. The machine does nothing more than allow me to GET to sleep better. It does not seem to improve my sleep quality at all. Now I cannot sleep without the darned thing.
Sleep is incredibly important to your health! We all know it. It is no wonder that unrefreshed sleep results in poor health. Though I often wonder which is the chicken and which the egg. Does chronically poor sleep result in Fibromyalgia? Or is it just another common co-morbidity? Maybe we’ll never know for sure.
I’ve sometimes wondered about the ‘chicken and egg’ conundrum too. Perhaps whatever causes ME and similar illnesses [which research may find one day are just subsets of the same organic disease] first affects the HPA axis, through inflammation or whatever and one of the primary effects is sleep disruption; the sleep disruption then brings on many other symptoms. It is widely accepted [even by the psychobabblers] that whatever the cause, poor quality of sleep causes major problems, as does malfunction of the HPA axis.
That’s rough…It’s going to be interesting to see what the Zinn’s found out and how that bears on everything. As I remember they believed their findings demonstrated considerable neuroinflammation…
Hi Tracy, the better respected research orgs in the UK include Invest in ME, Tymes Trust (for youth), and ME Research UK. There is also the ME Association. Researchers to look up would include Julia Newton, Jonathan Edwards, Nigel Speight (specializes in pediatrics and severe cases), and in Scotland, Gwen Kennedy. I’m sure there are others I forgot to mention. That should be enough to start with. 🙂
When I get refreshing sleep I feel a lot better but that isn’t very often. One thing not mentioned is resetting the pineal gland by mking sure you are outdoors for a short time first things – I’m trying that.
My sleep pattern generally involves waking in the early hours and being awake for some hours before, if lucky going back to sleep. Any attempts to increase activity increases night time waking.
Medication for reflux did help my problem for quite a few years but it no longer seems to work.
You don’t mention a magnesium sulphate (epsom salt) bath at bedtime, this helps me sleep but as it dries the skin I can’t do it often.
The article states that several ME/CFS experts believe you can’t fix chronic fatigue syndrome without fixing sleep. I believe that if you can find ways to fix the over-response of our up-regulated immune systems, then the inflammation, fatigue, allergic responses, anxiety, malaise, cognitive issues and “insomnia” of ME/CFS will all be alleviated.
I agree and I think Dr. Bateman agrees with you as well.
If it were not for Ambien, I would get no sleep at all, yet many healthcare professionals fuss all the time about my being on it! I can never nap during the day, have practiced sleep hygiene for 20+ years. I was using a white noise machine/fan 25 years ago. A warm bath at night will prevent my sleep even with Ambien!! I even drink no water after 7pm so as not to wake to urinate!! Thus, no relaxing tea at night, as well.
Cort, I rarely understand the posts as my brain seems most affected, but appreciate someone is out there fighting for us! I so miss my brain!!
My 35 year old daughter has Lyme AND CFS. We both have been traveling since Dec. 2013 5-7 hours monthly for treatment with Dr. Lerner,
Thank you!
If you haven’t seen a sleep specialist. Do so NOW. Overnight.
Carole
I am very frustrated and angry at the lack of awareness by doctors how important it is to treat the symptoms of me/cfs. I am constantly getting grief about getting the proper sleep and anti anxiety medications that are effective. They don’t seem to understand how the benefits of specific medications far outweigh their potential downsides. I’m constantly being denied combinations of drugs that have been of great benefit to me. Maybe it’s because I’m now 66 years old. Whatever the reason, I have recently been going from one doctor to another in search of understanding and help I am currently at my wits end. The bottom line for me is that doctors would rather wash their hands of patients like me than work as partners to help make my life more tolerable.
I tried keeping a ‘normal’ sleep schedule. Did not work. It was a constant struggle and trying to force myself to sleep at the time most people do just caused more extreme insomnia. Trazodone worked pretty well for a long while, but quit working. Nothing else helped at all. Once I quit work and my children were grown, I decided to try something else. I now allow my body to do as it wanted to, sleep when it wants to and awake when it wants to. It cycles around the clock with no respect to daytime/nightime. I sleep in a cold room (about 62*) and have blackout curtains. Since making that decision to let my body set it’s own sleep habits, I have done much better than in the previous 25 years with the struggle to be ‘normal’. I still don’t awake refreshed, I still have this disease with horrible fatigue, but I no longer have insomnia and my cognitive impairment is now limited to word-finding. The foggy, confused, half awake feeling of cognitive impairment is gone.
Great comment Nita. Why force the body into something it can’t do? As Werner Erhard once said – “ride the horse in the direction it’s going”…..
This goes into the “skillful means” bag approach to ME/CFS for me. .
I love it. “Ride the horse in the direction it’s going.” I’m still laughinh at the visualization of not doing just that.
I do the exact same thing, Nita. After years and years of progressing from lying in bed and not being able to go to sleep at 9pm, 10, 11, 12, etc, I just started staying awake and going to sleep when I finally felt sleepy, which was often around dawn. After a long time of this I again got tired of trying to sleep during the daytime so I blacked out my windows. From that day on I slept a little later the next day, then a little later the next day, etc, so my sleep cycle goes around the clock with me waking up on average 30min to 1hour later each day. A lot of the time now it will ‘stick’ around the same time for a week or so and then adjust, but it’s still the same principle of round the clock circadian cycles. I also have to sleep in a freezing room as well, if it’s not severely cold I just can’t fall asleep.
The thing about good sleep hygiene is a joke to me also. When I was a teenager and healthy, during the summers we would stay up and go out all night and sleep all day. I finally got tired of this because I missed being awake during the daytime and sleeping at night so I decided to start sleeping normal patterns and it only took a week or two to get my sleep patterns back to normal. I would simply get up before I was quite done sleeping, which would cause me to go to bed a little earlier the next night. The next day I would again get up a little earlier and then go to bed a little earlier, etc. Within a week or two was all it took to reset my sleep cycles. Since becoming ill I’ve had severe sleep dysfunction for well over a decade and nothing I’ve tried has made a damn bit of difference. Proper sleep hygiene isn’t a hard concept to understand or to put in practice and to say that ME/CFS patients’ sleep troubles are simply due to poor sleep hygiene is just as ridiculous and all the other psychobabble nonsense that exists.
Unfortunately, whatever disease I suffer from is progressive and I literally feel that I am going to die soon as a result of sleep deprivation. My sleep is so shallow that any little noise wakes me up and now when I wake up too soon too often I get constant diarrhea and severe loss of appetite, like my body is flushing itself out because it just can’t handle it anymore. If I am able to start sleeping again the diarrhea goes away and I gradually get my appetite back, but I honestly don’t think I will be able to make it much longer, probably not even a year. I’ve actually talked with my father about it and asked him if he would be willing to let me die in this manner because I really don’t want to have medics called since they would just take me to a hospital and shove feeding tubes in me, which I would of course rip out, so they would probably end up strapping me down and I would go mad from being kept alive from the feeding tubes and not being able to sleep. Of course by then I would be in too bad of shape to explain myself or to refuse treatment so they would just label me as mad and I would be subject to absolute torture and hell on earth for who knows how long? If I’m going to die from sleep deprivation I would much rather do it at home in my quiet, cold, dark room than in some loud, bright, noisy hospital with people all around. What a hip, ‘socially cool’ disease to have, huh?
The damnedest thing is that I have even looked into making my own Xyrem or GHB, but since there is so much stigma surrounding it due to it being the ‘date rape drug’, they have banned the precursors to making it because it’s so easy and cheap to make! Fucking Jazz pharmaceuticals is a bunch of bastards with their several thousand dollars a month bullshit for a drug that is so cheap and easy to make that anyone with a hotplate and some pyrex bakeware can make it at home. Goddamn.
John, please see if a Dr. will prescribe trazadone for you. I have taken it for years, and can’t get more than an hour or two of sleep with out it. The dose may vary, I’ve taken anywhere from 50mg to 300mg depending on the severity of my insomnia – and whether I need to get up early and ready for an appt. or whatever. I’m not saying it’s the only answer, but it helps everyone I’ve talked to that has Fibromyalgia and/or ME/CFS. Good luck to you, I’m so sorry you haven’t found a good and caring Dr., they are out there – just few and far between.
Hate top keep beating a dead horse- but John have you had a sleep study done overnight by anyone?
Also Trazadone works very well for alot of people. It is an Antidepressant with very few side effects. It also is an anti-anxiety.
I too am sorry you have had such a time. However, I love your fighting spirit!
It is terrible to feel you have no options-sometimes simple things work.
The Trazadone may help you. Start at a low dose or do in increments.
Hope some of this works.
Carole
Nita- I also agree with you on letting your body set its pattern. However, I am not able to do that because of responsibilities.
I do take a nap in the afternoon and use a CPAP machine to help every night.
Sleep specialist told me to keep room COLD. 65 most of the time. With fan and air purifier going all year.
Also elevate my head. Take Chamomile tea sometimes 1/2 5 mg Valium to stay asleep. Small meal at dinner. Good Advice!!!!!
Thanks
Carole
I also have the problem of not being able to wake up at times, sometimes going over 48 hours with very minimal time awake, some questions were hard to answer as my problems with constant-sleep/broken-sleep/no-sleep have no distinctive pattern & have been going on for years.
I was surprised you didn’t mention naltrexone 4.5 mg for reducing pain, or prolotherapy or trigger point injections.
They changed my life
I agree with Nita’s method. Listen to your body and go to bed when you are tired not when others tell you to be in bed.
Thanks for mentioning them….reducing pain is certainly one way to get better sleep. 🙂
Rachael, I’m more inclined to blame the sleep than the immune system. I learnt almost 20 years ago that the alpha/ delta anomaly was part and parcel of FM. The good old flight/ fight response during sleep. We sleep very lightly and have a disrupted deep sleep because I believe we learnt very early in our lives to be too afraid to go too deeply asleep. This is why some people believe FM is caused by childhood sexual abuse. New mothers often get very exhausted because they tend to sleep very lightly as they are afraid they will not hear the baby. My FM became much worse when my babies were little so I solved the problem by keeping them in my bed and on the breast all night. Lack of deep sleep creates a deficit of growth hormone which throws the whole endocrine system out of whack and with it, the immune system.
Hi Tricia
I don’t believe we have corresponded for quite some time. What I believe about my own case of ME/CFS is that my immune system went from being an innately very good one, to one that went into complete overdrive (autoimmunity). I feel that my case of ME/CFS is caused by a dopamine deficit and that I can no longer restore my small dopamine reserves, naturally. When dopamine is in short supply prolactin levels rise; prolactin is an immune stimulating peptide hormone. If prolactin levels are high your body over-reacts to just about everything (allergic, autoimmune) igniting immune activation and inflammation. Dopamine puts the brakes on prolactin.
I know for myself, that by using supplements that restore my depleted dopamine stores and with the daily use of antihistamines and anti-inflammatories, that I no longer suffer, to the same degree with fatigue, allergies, inflammation anxiety, malaise, cognitive issues, pain or “insomnia”, in fact far from it. However, take my own personal remedies away from me, and I am as sick as I was almost 30 years ago, when I first developed ME/CFS. So, for me it’s the immune system first. Calm, or suppress the immune response, and the symptoms of ME/CFS, including insomnia are greatly reduced.
I read your post with interest. My sleep studies show that my Alpha waves never stop & I get no Stage 3 sleep so the Energizer Bunny ran out of batteries. I know I used to have horrendous nightmares as a kid and your theory intrigues me. Can you tell me more about how you deal with this with supplements? I am working with an alternative neutraceuticals guy now. Thank you.
In have delayed sleep phase syndrome (it seems to run in the family…) so I used to be almost entirely nocturnal (4-6 am bedtime, 12-2pm wake up). With a very low dose of compounded melatonin in the evening and light therapy (with the same type of light one would use for seasonal affective disorder) for 60 mins in the morning I now manage to keep my clock somewhat normal (1am-8am is a normal night’s sleep, though I usually use an alarm to wake up). I still wake up feeling terrible everyday (CFS + fibro, sleep apnea) and I get less sleep than I used to (since I have to wake up to do the light therapy), but at least I can function somewhat in the “normal” world since I’m awake during the daytime! It’s changed my life. Dr. Michael Terman at Columbia is the doc who helped “fix” me. He’s fantastic.
Thanks for passing that on.
I find that earplugs improve quality of sleep for me. Even if its not noisy, as I suffer with. a lot of sound hyper sensitivity
Hi Rachael
It’s a pleasure to catch up with you again. Great to be able to talk endocrine with someone, even though you are looking at it from the immune angle. You are perfectly correct and I agree with all you say. We with FM also suffer with low dopamine and high prolactin. My theory is just that the dopamine/prolactin axis is out of balance due to the growth hormone deficit from lack of deep sleep and a high somatostatin level which inhibits GH production. I believe that the high somatostatin is caused by low cortisol levels. Studies showing a reduced level of GH and cortisol after exercise in PWFM is believed to be due to high levels of somatostatin. The low dopamine is also exacerbated by competition for tyrosine from epinephrine and NE due to using up a lot of these with the fight/flight response, as well as the fact that a lot of the NE is tied up hanging around our many trigger points.
I too have managed to address my dopamine levels ( probably in a different way from you as I cannot tolerate tyrosine though I eat plenty of food sources) but only enough to improve cognitive issues and allergies as alas my energy levels are often very low and I still battle a lot to keep my systolic BP above 100. I did take phenylalanine ( precursor to tyrosine as you would know) for a while but it didn’t help much.
But, heh, our differences do highlight the subtle differences in our illnesses. I have never really had insomnia as a major problem, even after menopause when I believe that my taking progesterone and then pregnenolone helped balance out my cortisol levels enough to promote better sleep. Even so, I had always appeared to sleep quite well before menopause but rarely felt that I had. I still mostly have the same experience with sleep despite the fact that it is now interrupted several times a night with hot flushes and has done so for the last 13 years. At least now, with taking pregnenolone 800mg, the flushes only last several minutes instead of an hour which they did when I first started having them and I usually go straight back to sleep. I always get one half an hour after getting to sleep but then don’t usually get another one before 4 or 5 am and I’m usually asleep by 10 pm.
I do not tolerate anti-inflammatories and antihistamines don’t work for me but I don’t seem to need either anyway. I used to suffer with dermatitis, severe hay fever, sinusitis and asthma but I hardly ever get dermatitis anymore (only a slight allergy to dogs) and I very rarely get a sniffle or wheeze, which I believe is due to the pregnenolone, on top of the dopamine improvement, as the allergies have improved more with increase in the dose of pregnenolone. I have also done a lot of trigger point work on the relevant muscles which I believe are involved with hay fever and asthma as well as having reduced the hormonal perpetuating factors.
Hi Tricia
I always read your posts with great interest; always so full of valuable information. Yes, there definitely are distinct differences between individuals with ME/CFS and FM, but we have both come to the same conclusion, that dopamine is a major player in both conditions. The amount of tyrosine I take is small, just a dab on my baby finger from a open capsule, along with other supplements.. It does raise my usually low blood pressure and my usually fast heart rate drops significantly. I feel this effect tyrosine has on raising my dopamine levels and blood pressure has definitely helped control some of my ME/CFS symptoms. Also, an interesting fact about prolactin is its effect on up-regulating immune functions, including stress responses, anxiety and despair, rather that the fight or flight mechanism triggered by cortisol.
I’m glad we have both found ways to lead somewhat normal lives, but I am still waiting for the day when both of these illnesses are truly validated and workable treatments are available to all. We shouldn’t have had to find our own solutions for our illnesses. Keep on researching; I believe it is people like you who truly make a difference in understanding these very complicated conditions.
I just wanted to make a point I suffered for years with pain in my feet and calf’s, I was prone to dehydrate anyway last time I was at hospital I was diagnosed with hypokalemia. Now I supplement and guess what no more restless leg syndrome. They don’t offer blood work sometimes it takes years to find what your low on so insist on complete nutritional/vitamin and Hormone panel’s back in 2007 two years after car accident they tested my vitamin D, very low and my TSH-75 now other thyroid tests as soon as they did and expanded to other hormones we found Pituitary problem, Which is when the chronic fatigue set in. also vitamin D won’t go up past 25 in 9 years supplemented 5000 daily with shots of 300.00ml x 2 and its actually down to 23? any advise? I did just treat successfully hi-pylori a intestinal parasite common in 1 out of 3 adults that’s stops Ferritin and other vitamin absorption. Again 2003 my doctor told me she suspected a bacterial infection instead of Colitis at the time but she never had me tested? Please learn from sites like these and others and insist you be tested. Please! Sissy
The one thing that has helped me is probiotics. I take a green powder with probiotics in it and probiotic pearls. They can really help with being able to go back to sleep and getting those final bits of sleep when you wake up during the night and wake up too early in the morning.
I have been diagnosed with CFS, FMS, Narcolepsy (then not) & Idiopathic Hypersomnia (which just means they don’t know why I am always tired)… I get no Stage 3/4 sleep so my muscles & mind cannot recharge so no wonder I wake up unrefreshed every morning. I have tried Xyrem (it almost killed me), and dozens of other drugs. Some help me sleep but have other side effects. I am now working on getting off all drugs and am working with neutraceuticals. I am exhausted all of the time, my eyes are so heavy I have to close them but often I can’t sleep. No matter what I do, one night is different from the next. Pain I have learned to live with but the sheer exhaustion is terrible.
Sara, in normal delta wave sleep you are pretty much unconscious because neuronal activity of the brain is inhibited by the inhibiting neurotransmitter GABA. Progesterone enhances GABA activity which is why I used progesterone ( must be bio-identical) to help me get better deep sleep. However, because I am menopausal and low in oestrogen, as well as low in cortisol, I needed an awful lot of the stuff as progesterone can convert to both in the body if the necessary enzymes for each stage conversion are adequate. If only a small amount is taken and you are low in cortisol, it will convert to cortisol and oestrogen, leaving you more oestrogen dominant and worsen symptoms. I tried taking oestrogen, progesterone and testosterone separately with limited results so I now take pregnenolone which is the pre-cursor to all these steroid hormones. It has improved my life a lot, especially brain function as pregnenolone is neurogenic, and improved my sleep but I still have to pace myself to manage my symptoms, mainly due to my widespread trigger points. I do however no longer have symptoms of oestrogen dominance and it has enabled me to still have a sex life which is a great thing to be able to have with this illness. I have gradually increased the dose of pregnenolone over the last 10 years or so and am now on 800mg. I would like to keep on increasing the dose to see where it gets me but may not be able to afford it as my husband will be retiring shortly and we will have a limited income. I don’t take any pharmaceuticals (pregnenolone is considered to be a supplement). In fact, I haven’t even been to a doctor for 6 years now as I seem to be able to manage my illness myself and none I ever went to helped me very much.
I forgot to add that you should take pregnenolone in the morning as pregnenolone is in itself stimulatory and needs time to convert to progesterone.
I forgot to add that you need to take pregnenolone in the morning as pregnenolone is in itself stimulatory and needs time to convert to progesterone. I also limit carbs, eat a lot of protein and sip protein powder during the day mainly for the amino acids.
Lifetime chronic gut problems high bp medicated, anxiety otherwise healthy lifestyle bloods etc good don’t like and have adverse reactions to many drugs.have tried all natural self help remedy’s etc nothing helps