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!

 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 :) 

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!). 

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

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

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

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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. 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. Some times, 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 18months 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 tale Glutamine) as I've read that this too can cause Insomnia, but as yet the insomnia is no better.

Any wonderfull suggestions out there?

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