Insomnia - Difficulty Sleeping

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Mardy Ross's picture
Mardy Ross
Title: LumiGRATE Poster - Top of the Totem Pole
Joined: Feb 16 2009
Posts: 2032
User offline. Last seen 45 weeks 6 days ago.

This is one of the more read topics as I'm editing today, and I'm going to bump this up in the forum as well.  The Forums area originally was used well to get people who wanted to comment doing so -- there weren't many websites then which had the capability to do that for people with 'fibromyalgia' as a focus as Lumigrate did in our formative times.  You'll see below a wonderful example of how it worked. 

I just talked with the gal last night by Facebook Chat, as we've been doing since we became FB friends, long ago. She's the rare one, sticking around so long as a virtual friend. Earlier this year I couldn't find my cellular phone and turned to see who was on Facebook, and so she called it and we spoke for the first time that way.  We should have done that long ago, and I've worked more since then at the principal I'd started in 2012 of trying to have a phone conversation with key people, at least once (or in person, ideally!).  I hope some day to meet her in person, but I don't imagine that will occur.  Video / screen perhaps sometime.  Virtual is the new real life! 

Due to how much time it took to be on Facebook and monitor the website, and upgrades needed on the website not being affordable when they were needed, we no longer take new Users registering and writing and for several years now I have been the only one adding new to the Forums.  It's not ideal, but it's what I have the time and abilities for in this phase of Lumigrate's life.  That won't be forever, but it's what late summer 2017's reality is, and I wanted to note that at the top of this topic so as to avoid any confusion for readers / YOUsers of Lumigrate.  (It's about YOU! at Lumigrate). 

                                                      

Editing this blurb / tip in about how-to be learning at Lumigrate's forums, or as a reminder on September 9, 2017.  (2,365 reads of this topic at this time.) Several topics in this forum have had 1,000 views or more, and I hope people are knowing how to navigate the website to find more in the 'area' of information you seek.  

You can see the 'map' of the website .. Home on the left, then the Forums tab, then container/section. If you just click on the one at the end (right) you'll then see other topics in the forum.  If you click the one before that you'll see what forums are in the section, and if you click Forum you'll get the whole forum area. Click home and you get the landing page/home page.  I think people know that, they often don't think to click on the link to look into the forum at what other topics there are.  Particlarly when their brains are not working well, which --- is why you're here! So I hope that tip helps.

To make it easier if you'd prefer, here's a link to the forum showing all the topics that are in this sleep / insomnia forum.  www.lumigrate.com/forums/health-issuesdis-eases/sleep-and-insomnia

You will see a sleep survey provided by Dr. Jim Kennedy, DDS of the holistic kind.  I suggest you read and consider taking it and then taking action from there.  Take Care! ~ Mardy

Now, the original topic content from the date of the stamp it was created ----

I wanted to set up topic areas for people in the SLEEP Forum at Lumigrate.com which are similar to what has worked with Fibromyalia Forum: Provide the base structure and then let others start topics too.  My intention with Lumigrate is to provide a progressive, valid, streamlined, fun health and well-being website experience (and related facebook and Twitter) that maintains what Aretha Franklin would say 'R-E-S-P-E-C-T'. 

Please keep these things in mind and diplomatically guide others who might be used to other places' way of doing things.  If you think if the Internet as a playgound and Lumigrate as the sandbox, no throwing of sand, speak respectfully, and mostly invite others to join and make newcomers welcome.  Naming of particular products is fine/ encouraged AND what I strongly suggest is that you also say how the product is obtained; is it retail, multi-level marketing, available online.  IF you are a person / company benefitting from the sale it is really necessary that you do this, please (and thank you). 

  • In this areas, I hope many people contribute. 
  • What do you think might be causing it? (pain, burdened mind, etc.)
  • Is the problem going to sleep or staying asleep. 
  • Do others have solutions 

We might split it into things that have and haven't worked for insomnia on down the way.  For NOW, let's start with one area for all that and get some momentum!  I asked the folks on Lumigrate's facebook area (a.k.a. The Grate Group) on solstice about this since ... it's the LONGEST nights of the year for us in this part of the world, the shortest in the 'other side', which can make sleep OH SO desirable. 

Live and learn.  Learn and live better! ~~ Mardy

 

 

__________________

Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!

Cherie's picture
Cherie
Title: LumiGRATE Poster - Frequently
Joined: Aug 28 2009
Posts: 22
User offline. Last seen 12 years 43 weeks ago.
Re: Insomnia - Difficulty Sleeping

I have to say MY biggest problem of not being able to sleep at night is ME!!!I SIMPLY LOVE our house when EVERYONE IS ASLEEP but ME!!!  The quietness of the home~ the furnace, the fan, the cat purring at my side~ its so CALMING! ~ LOL

I can be on a night sleeping cycle~ it can happen. But I can slip soooo easily into the night owl~  a great book~  a good night on the computer (like right now ) ~ and even once in a very very blue moon I turn in to a TV couch potato,  I love to learn things and many things hold my interest ~ so i get absorbed into things I'm doing...next thing I know~ the suns coming up and I haven't been to bed and the alarm clock is going off for my husband to go to work.

It takes me a good couple of weeks to work myself back to a nighttime sleeping schedule. I have to go to bed (and hopefully asleep) 2-3 hours earlier each night, than the night before...working my way backwards to a decent bedtime of around 9pm. 

Now if I am sick or having one of my dizzy attacks or CFS and/or FMS crash of course that does alter my sleep pattern as well.  When I can not sleep I take Tylenol PM, 2 tablets as I go to bed, most times they work.  I also have pain patches I wear when the pain is at its very worse~ they will allow the pain to subside enough so i can fall asleep.  I have also had to take Scalacton (script),  and/or Tylenol Arthritis, and/or  Ibuprofen when the pain increases~ in addition to my daily Fibro pain med.

I sleep on my side or back~ if on my side I have a pillow between my knees~ and another along my chest area for my one arm to lie on...it hurts too much to have to cross my body all the way to the bed...and my hips/knees ache with out the pillow between the knees.  These 2 extra pillow (in addition to my head pillow) make a huge difference in how i sleep~ my muscles are not being pulled and are relaxed~ therefore they do not become stiff in my sleep.  When on my back~ the leg pillow goes under my knees~ this keeps my back from becoming stiff.

There are occasions where I do get stressed or upset and it carries into bedtime.  I try to never let this happen as THIS will keep me awake all night~ obsessing over the situation/problem at hand.  Even my Cymbalta (I take it for depression/anxiety) does not completely calm me in times like this.  Nor will the Tylenol PM work either.  My brain is on a overload at this point~ I simply have to work my self into exhaustion~ or once the problem is resolved I go and crash.

This is why there are many things, including people I have had to walk away from in my life~ JUST TO AVOID THE STRESS on me, as I can NOT take it, my HEALTH can not take it.  I don't regret anyone/anything I have walked away from in all these years as it has made me healthy-er in the long run.

I cant have noise~ esp. TV noise~ so I run a fan sometimes just for the soft noise it makes as it covers up the voices from the living room and TV...and I also have to use a CPAP machine which makes white noise~ so that adds to the hummm of my tranquility.

 I would love to hear some others secrets in how they deal with their sleeping distubences~ this site is so helpfull~ were so lucky to have a place to share!

Faith Young's picture
Faith Young
Title: LumiGRATE Poster - Major
Joined: Jan 24 2010
Posts: 49
User offline. Last seen 12 years 42 weeks ago.
Re: Insomnia - Difficulty Sleeping

 Hi Cherie!

I have similar problems but very different at the same time! I also use a million pillows depending on how i sleep depends on where they go! If I sleep on my bed (when I am really hurting!) I have a pillow under each knee and each arm and 2 under my head. When I am on side (on mild/moderate days - which is usually what happens) I have one between my knees and another between my ankles. I have to do that otherwise I bruise and am very very sore in the morning! But I definitely hear you on that!

I generally have no problem falling asleep its staying asleep that is my problem! I can't have any noise, I wake up to everything! One night I woke up when it was raining (it was soo annoying!) 

Ways I've tried to cope is not to drink any caffeine for about 2 hours before going to sleep. Also, do not exercise for at least 2 hours before you go to sleep either. At first I would think it would make me tired and I'd fall asleep easier but not true within a few hours I was wide awake and finally figured out why! I also need to sleep in total darkness, that is when I get my best sleep. I hope this helps!

-Candace :) 


2017 update from Mardy: I'm happy to report this young woman is married and with children now, and I see her using Facebook to get tips from other stay-at-home mothers, and I'm guessing she's not done being a health educator, and she certainly is a hope for our future! 

__________________

Faith Young is the pseudonym used by one of Lumigrate's longest content providers, as she began writing at the age of 24 in Lumigrate's FIRST year on the Internet!  In real life, this young woman who has been living with FMS for many years received her Bachelors degree in Health Education from Montclair State University and graduated Magna Cum Laude. To further her career, she is currently working on two Masters degrees, one in Counseling from Seton Hall University. Since she is a 6th grade health teacher working to educate students on the importance of being physically and emotionally healthy, we found it best to provider her with a pseudonym of her choice and "Faith Young" is what resonated. In the long run, this very real young woman has faith and hopes be able to use health education in counseling and provide up to date information at Lumigrate which will appeal to the younger people 'out there' and bring them 'in here' to Lumigrate in addition to our more mature adults.  In addition, she is a LumiLiaison for Lumigrate.com and helps facilitate Lumigrate FMS fan pages on facebook.  Search on Lumigrate and Lumigrate: Fibromyalgia and join us related to general and/or FMS specific information; Like us and those #s count with our advertisers and supporters and also allow YOU to keep up with what we're up to!  

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Mardy Ross
Title: LumiGRATE Poster - Top of the Totem Pole
Joined: Feb 16 2009
Posts: 2032
User offline. Last seen 45 weeks 6 days ago.
Ditto for Mardy, Candace... "Sleep Hygiene"

We're oh so much alike it sounds.  That piece of the lack of really proper sleep cycles and the brain really getting to rest is what is keeping this 'thing going around' for people with chronic pain and fatigue and fibromyalgia 'stuff'.  I've asked a facebook friend, Don, to write about sleep as he is a PA student in Denver and had it presented almost a semester ago.  He checks in with me from time to time to say he's sorry he hasn't gotten to it, so if you have any student friends or access to people who want to write up about it, please let them know there'd be a nice website called Lumigrate appreciative for what they write!  And you know us -- we like to direct people to good resources, so you guys in classes likely have teachers who have done that work for you, and so it's a matter of a fast introduction about who they are and some links most likely.  Our Emma Kate has done something on her blog I think as well... I'll ask her to drop by and put an intro and link to what she writes.  I really like what she writes as she thinks like she works for a medical school.. which she does ... yet she has chronic fatigue and is an OT like me, so it's a really interesting mix.  She's in New Zealand.  Emma-Kate Lamb is her name if anyone wants to friend request her on facebook or Google her!  Say 'hi' to her for us! 

When you talk about that easy bruising, I thought I'd throw it out here that I had one bright MD who read lots of alternative and progressive information and saw that fibro causes thinning of the blood, per Switzerland thinking, research.  So he had me do a particular kind of test at the lab where they check the clotting time by jabbing you in the forearm at a standardized place and depth, and sure enough I was at 9 minutes!  It was down to 7 3 years ago when I had a hysterectomy and had no complications so figured it was time to get back to being active again and after another 2 years I got back to skiing.  So those are little thing to just think about as I know people are always looking for information.  I think I included that in my Your Story About Your Fibromyalgia in the Forums / Fibromyalgia (link is: www.lumigrate.com/forum/your-stories-about-your-fibromyalgia)(In looking at this area, SUCH great stories but only 16! So please take some time and go write yours if you think you have anything we can gain from hearing yours... and when you look at the # of people who come and read these ... everyone's stories are important, particularly when people's head are in a good place with it, and if NOT, there are areas for Venting, Crying, Laughing too, of that Fibro Forum!). 

__________________

Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!

Murrina
Title: LumiGRATE Poster - Minimal
Joined: Mar 9 2010
Posts: 1
User offline. Last seen 14 years 6 weeks ago.
Re: Insomnia - Difficulty Sleeping

So how I found my way here....Facebook ~ my midnight savior! 

Thank you, Mardy, for the info on fibro causing thinning of the blood.  I have always thought that and since I suffer from Von Willebrand's disease (bleeding disorder for those of you that are not familiar) also, it is something that I pay very close attention to.

How does my insomnia start???  Probably started around 20+ years ago or so, but had gotten out of hand in the past decade.  I saw a psychologist specializing in circadium rhythm disorder, learned some techniques to try and help but some days they just don't cut it. 

Tonight is one of those nights, and unfortunately with the fibro lack of sleep usually will trigger a major flare up and this will cause another night of insomnia which will cause a worse flare up which will increase the pain of fibro which will cause another night of insomnia which will multiply the pain of fibro which usually triggers a seizure.....vicious cycle! 

And so the depression starts to creep in ~ how to stop this rollercoaster of fibro, insomnia, restless leg, narcolepsy, and seizures?...!!

Back to basics is what usually works for me ~ sleeping in the recliner watching a boring movie after a short walk, a couple of yoga stretches, hot bath or shower and a short meditation.  May have to make several attempts over a couple of days to get back to "normal", but usually I'll be good to go for about a month and a half or so.

Corinna

Mardy Ross's picture
Mardy Ross
Title: LumiGRATE Poster - Top of the Totem Pole
Joined: Feb 16 2009
Posts: 2032
User offline. Last seen 45 weeks 6 days ago.
Re: Insomnia - Peel the Onion, solve the problem

I am really happy to report that I have gotten back to sleeping well, something which required prescription sleep aids for ten years, contributed to my fibromyalgia occurring in the first place because I didn't know what caused fibromyalgia nor how to 'reverse it'. 

There are many MANY gems of information here in the Lumigrate.com blog and forums which I think will be wonderful places for people with fibromyalgia to start learning. (And I typically put links in those so you can find valid, progressive information in a streamlined way.  Hopefully we make it FUN along the way a bit as well.)

I'm on the track, having five years ago literally been thinking 'I might not be alive at age 50' to looking forward to turning 50 in under a month. For years now having learned to 'manage' it well, and seeing it literally reverse. 

So the THREE things I'm going to link you to now are: 

  1. My story in the Your Story About Your Fibromyalgia in the Forum/ Fibromyalgia.  I put in my story what I have done up to last year on fibromyalgia awareness day and likely need to update that with the new things I've been doing this year such as Ilene Spector, DO and specialist in Osteopathy of the cranial field.  But that's kind of frosting the cake as my new goal is to undo the damage from the many Rx meds involved in getting this thing turned around.  www.lumigrate.com/forum/your-stories-about-your-fibromyalgia
  2. Wm Marcus Spurlock, MD's piece about what causes pain with fibromyalgia, because he talks about the energy of the muscles/ cellular level and that is KEY to understanding what is going on in my opinion something he sees as being part of treatment for sleep disorder. 

    www.lumigrate.com/forum/causes-fibromyalgia-pain

    ... AND
  3. A piece I wrote based on something Cheryl Young taught about what causes people to be able to getting to letting things go after something bad has happened to them.  Suffice it to say I am sorry fibromyalgia happened to you, or that you have insomnia and chronic health issues or someone you know does which is causing you to read this now.  And I hope this ALSO helps you get back to chronic wellness.  www.lumigrate.com/forum/let-go-shameblame-game-better-health

There are other resources on Lumigrate.com in the blogs from July which I will be copying and duplicating in areas of the forums so people can find them easier.  But look around Blogs from the summer of 2009 for SURE.  And there is a blog I wrote after July 29th presentation by Scott Rollins, MD on what he sees as being the reasons and treatments for fibromyalgia. 

It includes progesterone, which he has called informally "nature's Xanex", both of which he  sees as being part of treatment for sleep disorder.  Naturally, preferable to start with food, go to supplements, supplemental hormones, then pharmaceutical interventions, call in the rest of the integrative medicine team. 

I hope this finds you intrigued and if you have a story to tell about YOUR fibromyalgia if you have such a thing, please write ... or any other areas of the site you feel a comment is worthwhile. 

To Higher Health --Take Care!

Mardy

 

 

 

 

__________________

Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!

Mardy Ross's picture
Mardy Ross
Title: LumiGRATE Poster - Top of the Totem Pole
Joined: Feb 16 2009
Posts: 2032
User offline. Last seen 45 weeks 6 days ago.
Re: Insomnia - Peel the Onion, solve the problem

I am really happy to report that I have gotten back to sleeping well, something which required prescription sleep aids for ten years, contributed to my fibromyalgia occurring in the first place because I didn't know what caused fibromyalgia nor how to 'reverse it'.  There are many MANY gems of information here in the Lumigrate.com blog and forums which I think will be wonderful places for people with fibromyalgia to start learning. (And I typically put links in those so you can find valid, progressive information in a streamlined way.  Hopefully we make it FUN along the way a bit as well.)

I'm on the track having five years ago literally been thinking 'I might not be alive at age 50' to looking forward to turning 50 in under a month, for years now having learned to 'manage' it well, and seeing it literally reverse. 

So the THREE things I'm going to link you to now are: 

  1. My story in the Your Story About Your Fibromyalgia in the Forum/ Fibromyalgia.  I put in my story what I have done up to last year on fibromyalgia awareness day and likely need to update that with the new things I've been doing this year such as Ilene Spector, DO and specialist in Osteopathy of the cranial field.  But that's kind of frosting the cake as my new goal is to undo the damage from the many Rx meds involved in getting this thing turned around.  www.lumigrate.com/forum/your-stories-about-your-fibromyalgia
  2. Wm Marcus Spurlock, MD's piece about what causes pain with fibromyalgia, because he talks about the energy of the muscles/ cellular level and that is KEY to understanding what is going on in my opinion something he sees as being part of treatment for sleep disorder. 

    www.lumigrate.com/forum/causes-fibromyalgia-pain

    ... AND
  3. A piece I wrote based on something Cheryl Young taught about what causes people to be able to getting to letting things go after something bad has happened to them.  Suffice it to say I am sorry fibromyalgia happened to you, or that you have insomnia and chronic health issues or someone you know does which is causing you to read this now.  And I hope this ALSO helps you get back to chronic wellness.  www.lumigrate.com/forum/let-go-shameblame-game-better-health

There are other resources on Lumigrate.com in the blogs from July which I will be copying and duplicating in areas of the forums so people can find them easier.  But look around Blogs from the summer of 2009 for SURE.  And there is a blog I wrote after July 29th presentation by Scott Rollins, MD on what he sees as being the reasons and treatments for fibromyalgia.  It includes progesterone, which he has called informally "nature's Xanex", both of which he  sees as being part of treatment for sleep disorder.  Naturally, preferable to start with food, go to supplements, supplemental hormones, then pharmaceutical interventions, call in the rest of the integrative medicine team. 

I hope this finds you intrigued and if you have a story to tell about YOUR fibromyalgia if you have such a thing, please write ... or any other areas of the site you feel a comment is worthwhile. 

To Higher Health --

Mardy


A graphic of peeling the onion I was able to afford to have made in late 2012 ---

 

 

 

__________________

Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!

moiranicol
Title: LumiGRATE Poster - Itinerant
Joined: Sep 13 2009
Posts: 7
User offline. Last seen 14 years 35 weeks ago.
Re: Insomnia - Difficulty Sleeping

Hi All Insomniacs

 

To sleep perchance to dream!!!

I was reading your (Dee Dee's) article, on another forum, and am interested in this product , Zija. (Mardy's note, Dee Dee Shaw sold Zija, and still sells it as of my edit in September 2017, she's very knowledgeable, has a great following on Facebook, and was having baby #13 in the time we connected, she's now training and running marathons and just looks fabulous. I allowed some carefully selected people who sold MLM to have home-based businesses to have some exposure on Lumigrate for a short time in part because of Dee Dee's knowledge and helpfulness.)

I ‘m on trepilene (tranquilizer), Aterax (anti-histamine), rivotril (anti epileptic) and Dormonoct (sleeping pill) (I have sent an email to Dee Dee, but am posting this here as well.)

It worked for a while, sort of, and my energy was improved. Prior to that I was not sleeping, maybe dozing for 1-2 hrs on a good night.

I’m in South Africa, so want to know if there is another name it goes by, or what else is in it and I’ll go to the health shops, if I can take it with the other meds? Does anyone know?

I am weaning off the drugs, which I have been on for some years, after 2 weeks in hospital to get me to sleep, but battling to fall asleep and stay asleep. I've cut down, but am really not sleeping nearly enough

I’d love to go the natural route, and in the early days of FMC/CFS they worked, but not any more. 5HTP gives me a migraine if taken on an empty tummy, and whether taken with food or not, wakes me up far more often. Have tried it at 3 different stages of this journey! I have Gaba and Gabtropine and Melatonin, but don’t think I can safely mix any of those with my chemical tablets, do you perhaps know?

I see on Dr Teitelbaun's website that some people with these conditions just have to have the stronger chemical meds to sleep..I think I fall into this bracket, but am always trying to cut down and get onto the natural stuff. Sometimes, like now, when the CFS is so much worse I think "to heck with this...just take the drugs," and have more quality of life.

But they aren't even working well. Very frustrating. He also says that if a person gets 8-9 hrs deep sleep a night our pain and other symptoms would improve greatly. I so want to get there, but have had no joy so far.

I have loads of food sensitivities, and after cutting them all out for 18 months was retested and had just developed some more. So I've been working on healing my gut, (probiotics, and digestive enzymes, then later I'll take Glutamine), as I've read that this, too, can cause insomnia, but as yet the insomnia is no better.

Any wonderfull suggestions out there?


My thoughts when reading this were two-fold.... I'd hoped Dee Dee would come to be the next person to address this comment, and in those days I used to let someone know -- cue them.  If I remember right there was something about goats or baby goats, but that might be me mixing things up with someone locally who had baby lamb at one time interfering with what we were trying to collaborate about.  Busy women, and we have had to just roll with these real life situations in such a changing time with increased demands on our time.  Facebook being one. Other websites another.

My thoughts today reading this was reflecting on WOW, my website has someone from SOUTH AFRICA talking about a woman from the East Coast of the US providing services and products from her home while having 13 kids and some animals and so on.  Things I'd just not really envisioned for my life in the past, and certainly did not fore-see when thinking about doing a little website about 'fibromyalgia' in 2007 which in 2008 turned into it was going to be a website about wellness from as natural and inexpensive and truthful, honest perspective as I could possibly find. 

I also had a thought about this YOUser's comment about Dr. Teitelbaum's website and 8-9 hours of sleep.  It was like meeting a rock star when he spoke at the 2009 chronic pain conference as keynote, when I'd been the 3 pm slot as speaker.  In 2004 I'd had a provider (MD pay to play type) who was throwing a lot of medications at me as well as doing things such as IV nutrition, and suggesting and later doing a heavy metals challenge test, chelation IVs would happen in early 2008.

He'd heard that about 8-9 hours and I was thinking I was doing fine getting the 6 I was getting from 15 mg of a benzodiazapine I was taking from an insurance-based provider starting in late 2002 or early 2003.  I'd liked it better than the expensive, newere Sonata that I'd been started on by a previous provider -- I was sent due to an ankle injury in a commercial parking lot to the one that switched me to the benzodiazapine when I opted to make her my personal health insurance based provider. Instead of looking for more underlying causes of my complaint of fatigue, which greatly improved when I modified my diet later after seeking yet another expert's input, he doubled my dose of the benzodiazapine. 

The doctors in my area were ganged up to not take BigPharma sales reps but this doctor was not part of the gang, he was a renegade out of residency in the late 1990s.  So he had a lot of experience.  What I later pieced together was he was getting the benefits of taking the pharma people's 'input' and all the strings and things that comes with that, and when he got 7 day sample boxes of Lunesta he had me pick up a box with instructions to stop taking what I was and take that for a week and if I liked it he'd prescribe it. 

So I cold turkeyed from 30 mg to 0 on a benzodiazapine in May of 2005, after an extended time on the drug.  I was told my brain would never be the same, that it was permanent damage that occurred.  Why?  Because I was trusting that he would tell me correctly and did not have a pharmacist in the loop to VERIFY what the DOCTOR told me to do.  I'm not bitter about this today, rather, I see this all as having been guided and a "fate meant to be" so I'd learn what I have and take the directions I have. 

So if anyone ever wonders about my motivations and my commitment to continuing with Lumigrate and my work reaching out on Facebook and anything else I'm doing to help people learn, I hope people know and remember what all I've been through. 

In December 2006 I'd get a message after another medication error was made when I was post op for a uterus ectomy surgery.  This is what came into my head from somewhere: 

I'd go from there to creating the website through a lot of circumstances that appear Guided to me, and others.  That would lead to all kinds of things.  When I talked on this thead about looking forward to turning 50, I can tell you exactly what was occurring at that point in my life.  I was struggling financially to the extend it had to be a pot luck.  And it fell on Good Friday which people previously had not realized when they RSVPd yes.  It was a very sad party.  You learn who your friends are after those kinds of things.  And who are not. One of the few people who came had just had a major death experience in her family and we spent most of the time at the computer looking at the photographs of their beloved.  I took it for what it clearly was -- "guided".  One of the people, who was bringing pizza, opted to go skiing and got to town at 10 pm and wanted to take me out to dinner, clearly not wanting to do the party thing with my friends. 

An old friend would pop into town unexpectedly for Easter weekend and I'd work time in with them -- they were staying at nearby hotels so that was easy to do.  The pizza guy was offended, cancelled plans and his mother then uninvited me to their family's Easter on Easter as I was in line to purchase what I was going to take.  Back it went, to the deli I went, and that's what I had for my dinner.  Lots of food for thought went with that! (He died this year, I happened to get the newspaper that had the obituary.) 

My father would pass about six months later, and I'd be on my way as an orphan. And with more food for thought surrounding that whole experience about what's causing the fractures in families, the dysfunction -- in his case the lawyer was demented to the extent it significantly affected what occurred -- and things flow downhill and I was always at the bottom of the structure in my family of origin. So my followers might not realize it, or those I follow and keep up with, because I believe I was intended to be in this exact position from long ago, in the planning stages of my life before I was even here in this body this time around.  Just my beliefs.  

I tell the tale in the Mardy PopIns blog topic about how I got to being Mardy PopIns, this phase I'm in currently traces back to 2014.  I'd connect mid year 2015 with O'Rio Grande the fabulous dog who has every sign of having doggie dysautonomia, autism, fibromyalgia, movement disorder EXCEPT insomia.  However, he seems to have some sleep disorder to me. Here's the link: www.lumigrate.com/blog/mardy-pops-pen-pal-program-return-looking-forward-getting-mail-you-start

O'Rio made incredible progress in things that I see as symptoms, and basically Mardy PopIns pen pal project is a series of letters that takes you through the basics of the information in a fun way coming to your mailbox.  Yes, old fashioned mailbox.  There are already requests for an electronic version.  I'm trying to get back to old school, off the electronics, but there are people who do 'mold avoidance' or have other sensitivities that react to paper that's come through the mail. So.......it's a good reminder to see this today when editing this forum and being reminded of those far away in ... .South Africa, and etc, who would be expensive and slow to get a letter that's paper. 

I still like that I can send something tangible that you hold in your hand.  And hope your wellness level is well enough to receive such a thing. Maybe gloves and a see through box to read it in as a tool. My old neighbor who had his health lapse at the same time as I did in the 1980s had one of those.  We had different providers, and I ended up on a path that returned me to wellness enough to accomplish more in my early to mid 30s than I can believe to this day.    And I hope to keep above the undertow and help people via Lumigrate (and the interrelated Mardy PopIns project.)

That's my snapshot update for 2017, fall. ~ Mardy

Again, the link to the Mardy PopIns blog topic about the pen pal program: www.lumigrate.com/blog/mardy-pops-pen-pal-program-return-looking-forward-getting-mail-you-start

Mardy Ross's picture
Mardy Ross
Title: LumiGRATE Poster - Top of the Totem Pole
Joined: Feb 16 2009
Posts: 2032
User offline. Last seen 45 weeks 6 days ago.
Have Your Hormones Been Checked?

It's REALLY great to see that you've posted the question here, Moira -- and that you're finding DeeDee's information interesting.  You exactly describe what I've felt in the past and was just descriing -- how I started out trying holistic things then when my medical benefits were good but low pay I went the route of medications.  I look at them as a piece, for me, of how I got things stabilized and then turned around.  And then it's been a reversal now for years of backing off one more and more until I am essentially not taking anything now on a routine basis that requires a Rx.  EXCEPT bioidentical hormones.  What I've learned in seminars on the subject leads me to believe there's quite a lot with FMS that has to do with a hormone cascade that just gets off, and supplementing through bioidenticals seems to be the way that the integrative medicine world thinks generally.  I was just at a womens' fair today and talking with the MD and RN from a clinic in Grand Junction.  They have utilize mail order pharmacies such as College Pharmacy in Colorado Springs, or another website you might want to look at is for Abrams Royal Pharmacy in Dallas, TX.  I found my MD to Rx them after moving here by contacting a compounding pharmacy.  And you can find the compounding pharmacies if no other way like internet or directories, by talking to your regular pharmacist.  Walgreens has hundreds now in within some of their regular pharmacies. 

Please check back here, as I'll let the people know that are writing for us, like Wm. Marc Spurlock and Dierdre Rawlings, April Schulte Barclay (DAOM)(acupuncture and Chinese medicine) and ask them to provide what THEY say about sleep.  There are many things I've composed about hormones that I've transferred to the Forum areas from blogs, or Dr. Rollins, Fibromyalgia seminar which includes information about what he provides as options for sleep. 

GOOD FOR YOU, Moira, for having found out about Dr. T, as he's an excellent resource.  And for looking into differnt things that make sense, seem valid, are progressive (like taking something more like a supplement), AND food allergies.  Please also read what Angela has written in the various areas re: gluten and casein, as her book is titled from A to Zzz (autism to insomnia).  

I hope NEXT year on the first night of spring I look on the website and there's nobody on because everyone is sleeping!  And then we come and write about how good we feel and what all we've been doing while BETTER every day!  ~~ Mardy

__________________

Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!

Catherine Taylor's picture
Catherine Taylor
Title: LumiGRATE Poster - Itinerant
Joined: Jul 13 2010
Posts: 3
User offline. Last seen 14 years 1 week ago.
Developing Good Sleep Habits

Getting a Good Night's Sleep

Sometimes, a  decent night's sleep can be difficult for anyone but it is particularly hard for people with fibromyalgia. Did you know that estimates suggest that 80% of people with fibro have difficulty sleeping in comparison to 20% of the general population and 50% of those aged 65 and older? It is imperative for fmers to develop and maintain proper sleep hygiene.  As part of good sleeping habits, a set time for bed and arising should be followed, even on weekends.

While long, hot baths are relaxing, they should be avoided before bedtime as they will raise the body temperature at a time when it would naturally fall in preparation for sleep.  

Some helpful routines before bedtime include preparing for the following day to avoid stressful rushing around in the morning. Taking time for your personal hygiene can be enjoyable and relaxing. Dim the lights in the house a half hour before going to bed. Meditation, reading a book, listening to relaxing music all play a part in helping to soothe an overactive and tired mind.

Napping During the Day

If you can't get through the day without a nap, sleep experts suggest keeping it to a half hour or less. This gives the body a chance to rest and recharge. Naps that last longer than 30 minutes lead to deeper-stage sleep that cause you to wake up feeling groggy and can interfere with night-time sleep. To keep your body's inner clock in sync, try to expose yourself to as much natural daylight as possible. Keep your indoor environment bright during the daytime and dim your indoor lights during the evening.

Light Therapy

Light therapy can help with treating a condition called SAD, or seasonal affective disorder. This condition affects people in northern climates that experience a prolonged lack of sunlight during the winter months. Numerous studies have shown that using an approved light box for 30 - 40 minutes in the morning can benefit those with sleep problems, mood disorders and other related depressive symptoms.  Light therapy can also be used to 'reset' the body's circadian rhythms which can be negatively altered by circumstances such as jet lag, shift work or insomnia. The hypothalamus in the brain uses nature's cues, such as sunlight and darkness, to prompt the body to know when to sleep and wake up.

When Sleep is Difficult

When you have trouble falling asleep, the rule of thumb is to get up after 15 minutes rather than tossing and turning. If you cannot quiet your mind, try to do something relaxing such as listening to music or reading a book. If endless thoughts persist, also humorously known as monkey brain, perhaps writing them down, journal-style will ease the worry.

Studies have shown that some fmers have an underlying sleep disorder called sleep apnea. If you constantly awake feeling exhausted, this condition should be ruled out by your doctor. People with an alpha wave anomaly don't experience difficulty falling asleep but once they reach a deep state of sleep, their brains act as if they are awake.  During this stage of deep sleep, also called restorative sleep, the body's cells repair and renew themselves. If your body is missing this stage of sleep on a continual basis you will waken feeling exhausted and unrefreshed. This may be what is happening inside the fmer's brains during sleep.

Eating Before Bedtime

Eating a light snack before bed can improve the chances of a restful night's sleep. Ideally, it should contain a carbohydrate with a small amount of protein. This combination is thought to increase the availabilty of tryptophan, an amino acid that the body converts to melatonin and serotonin, both of which induce sleep. Tryptophan helps to regulate the body's sleep patterns and mood while melatonin helps to maintain the body's sleep cycles.

Suggestions for good bedtime snacks:

- yogurt with granola

- apple with cheese

- whole grain cereal with milk

- bagel with cream cheese

Avoid protein-rich foods, as they contain tyrosine, an amino acid that stimulates too much brain activity if large amounts are eaten before bedtime.

Natural Ways to Promote Sleep

Valerian root is the most well-known and researched natural sleep aid.  It has been used for more than 500 years to help induce sleep.  Being an herbal treatment, it generally takes a longer time than prescription drugs to experience results. Clinical studies show results can be expected after 4 weeks of daily usage.

Lavender flowers and their essential oils have more scientific studies backing them than any other herbal treatment, other than valerian. In Germany, lavender is approved for use in some sleep disorders and nervous conditions. A small study showed that geriatric patients slept better after undergoing lavender-based aromatherapy than they did after taking synthetic drugs.

If you are adverse to taking prescription medications to induce sleep, the above suggestions are a natural alternative. And, if that doesn't work you can always resort to an old stand-by: counting sheep! Sweet dreams.

__________________

Catherine Taylor http://www.maintaininghomeostasis.blogspot.com

Aimee Shannon's picture
Aimee Shannon
Title: LumiGRATE Poster - Major
Joined: Jul 12 2010
Posts: 30
User offline. Last seen 12 years 10 weeks ago.
Re: Insomnia - Difficulty Sleeping

Wow, thanks Cathy!  Some great tips and ideas.   

Sleep can be so difficult for us and I know it's a source of frustration for me.    Melatonin works for me in a low dose (1 mg) but since I tend to build up a resistancy to any drugs, supplements, etc, I only take it once a week.  I don't want to lose the one thing that really helps!  

Sweet Dreams Cathy!!  I'm off to try some of your ideas!

 

__________________

~~Aimee
 
 
Aimee Shannon is a licensed social worker who has fibromyalgia along with a collection of other illnesses.   Aimee is passionate that those dealing with chronic illnesses need education and support to best manage their illnesses. Along with contributions of writing for Lumigrate in 2009-11, Aimee can be found leading a support group on Facebook, as well as in-person support groups in the Dayton, Ohio region. Please connect if you wish, at
 
http://www.facebook.com/pages/Fibromyalgia-Support-Groups-by-Aimee/94975642116

Mardy Ross's picture
Mardy Ross
Title: LumiGRATE Poster - Top of the Totem Pole
Joined: Feb 16 2009
Posts: 2032
User offline. Last seen 45 weeks 6 days ago.
Melatonin

Hey Aimee -- you brought up something I thought I'd throw some info into -- and then ask Dr Spurlock to Comment on as well... 

One of the people that sees patients at Chris and Cheryl Young's behavioral health clinic has a PhD in nursing and used to see one of my patients with fibromyalgia and said to me that some people don't have receptors for melatonin, so it won't work for some people.  This gal did a wonderful job of working with the patient's physician and transitioning to different medications, particularly for sleep.  I beleive I also heard that having a sublingual delivery system was advantageous to 'by mouth' which is really 'by stomach' when you think of the distinction to sublingual. 

Yes, this was a very nice piece from Cathy/Catherine! You're really encouraging a lot of good people to head here and contribute, Aimee!  THANK YOU TO ALL --- many hands, light work.

~~ Mardy

__________________

Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!

Mardy Ross's picture
Mardy Ross
Title: LumiGRATE Poster - Top of the Totem Pole
Joined: Feb 16 2009
Posts: 2032
User offline. Last seen 45 weeks 6 days ago.
Bumping this thread while

Bumping this thread while Editing in this blurb / tip  about how-to be learning at Lumigrate's forums, or as a reminder on September 9, 2017.  (As seen above, in the main topic, there have been 2,365 reads of this topic at this time.) I'm adding this again here, as I bump this so it's higher in the Forum as it's a primary topic I'd like people to see. Several topics in this forum have had 1,000 views or more, and I hope people are knowing how to navigate the website to find more in the 'area' of information you seek.  

You can see the 'map' of the website .. Home on the left, then the Forums tab, then container/section. If you just click on the one at the end (right) you'll then see other topics in the forum.  If you click the one before that you'll see what forums are in the section, and if you click Forum you'll get the whole forum area. Click home and you get the landing page/home page.  I think people know that, they often don't think to click on the link to look into the forum at what other topics there are.  Particlarly when their brains are not working well, which --- is why you're here! So I hope that tip helps.

To make it easier if you'd prefer, here's a link to the forum showing all the topics that are in this sleep / insomnia forum.  www.lumigrate.com/forums/health-issuesdis-eases/sleep-and-insomnia

You will see a sleep survey provided by Dr. Jim Kennedy, DDS of the holistic kind.  I suggest you read and consider taking it and then taking action from there.  Take Care! ~ Mardy

__________________

Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!

This forum is provided to allow members of Lumigrate to share information and ideas. Any recommendations made by forum members regarding medical treatments, medications, or procedures are not endorsed by Lumigrate or practitioners who serve as Lumigrate's medical experts.

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