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Chronic Fatigue Syndrome
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Posted 7/26/2013 10:28 AM (GMT -5)
hi all

One of my major symptoms is severe insomnia. Its been getting worse and worse and now im at a point where only sleep pills will give me any relief...even then its only for about 4 hours

I cant even nod off during the day...its like my whole body hurts or stings when i try and relax and then if i start to feel myself going I jerk back awake.

I feel like im on high alert or incredibly wired, but exhausted at same time...is this extreme sleep anxiety or maybe I have developed some weird insomnia that is slowly killing me (thats what it feels like)..is this normal of CFS?

Any tips...i have tried what feels like everything :o(
Posted 7/26/2013 4:18 PM (GMT -5)
Hi Wackers, I have been trying a new natural product to help me sleep. I have only been trying it for 3 nights now, but it already seems to be helping. Within half an hour of spraying it, I fall asleep - and then I generally wake up 5.5-6 hours later. Pretty good for me! Normally I take hours to fall asleep and sleep lightly all night and wake up about every 2-3 hours. So I think it's doing 3 things: helping me fall asleep quicker, giving me deeper sleep and allowing me to stay asleep for longer. I've even been able to do some proper study during the day these last 2 days and I've been more alert. Best results I've ever had!

Product: Rescue Sleep Spray
Brand: Bach Original Flower Remedies
Caption: Relief from sleeplessness
Blurb: helps relieve sleeplessness associated with recurring and worrying thoughts. Assists with the relief of anxiety, nervous tension, stress, agitation or despair and provides a sense of focus and calm.
Ingredients: Rock Rose, Impatiens, Clematis, Star of Bethlehem, Cherry Plum, White Chestnut.

I was planning to tell you guys this after using it for a fortnight first to trial it properly and rule out the placebo effect. But what I think I'll do is I'll come back to this thread in a week or so and provide an update of how it's going.

Hope you find some relief soon.
Posted 7/27/2013 3:19 AM (GMT -5)
Wackers, it sounds like you are sleep deprived. You are not getting into REM sleep & beyond. You need to work with your doctor to get your sleep under some kind of control. When I first started out with this illness I was just where you are. I have insomnia & can't sleep on my own, then I can't stay asleep so I wake up many times throughout the night. I used Melatonin 5mg sublingual for quite a while & it helped me to get to sleep. Then as I was having so much trouble my doctor put me on Tizanadine (a muscle relaxant) to help me go to sleep, I get really sleepy with it within 20 minutes, then I take Trazadone to help me stay asleep. I now sleep about 10 to 12 hours but I have to sleep this much in order to get some good quality sleep. If I have to get up in the morning for an appointment I can't sleep & may be up all night. I have to schedule things for later in the day. I hope you can find your way on this. gentle hugs, Denise
Posted 7/27/2013 5:01 AM (GMT -5)
Thanks Jewelery lady...

Yes been working on this for 7 months with doc, plus been trying my own natural products also. I think because I have had work and children to get up for, I have been so desparate for sleep I havent given anything a good go. I will try it a week then swap to something else.

I have tried Melatonin but only for a few days
Tied Remeron twice, first time was for 2 weeks and it worked but made my muscle pain worse....then tried it again some months later for about a week and didnt get ANY sleep with it
Diazepam works sometimes
Nurofen has stopped working
Valerian stopped working
Amitriptyline Ive tried twice also...in the beginning this worked beautifully, for aboout a week, then nothing...helped my fibro pain immensely though
Doc has put me back on this again to try tonight, but at much higher dose
Sometimes I have to take amitriptyline and sleeping tabs combined.

Ive tried 5HTP also...

Last night I took 2 (2.5mg) Zopiclone sleeping tabs...and maybe 1 hour! Feel dead today...luckily I can really rest as the kids are at sleep over with their grandparents.

Ive also had counselling

My last option is to go to a sleep clinic. This i might do In August after I have seen neurologist

Thanks for all your thoughts...

Jasmine - let me know how you get on with that product...did you try Melatonin in end? x
Posted 7/27/2013 5:02 AM (GMT -5)
oh yeah and tried tizanadine also...x
Posted 7/27/2013 8:55 AM (GMT -5)
I'll put it in my calendar so I don't forget to do it. I am going to try melatonin later on. The only reason I haven't tried it yet is because there have been other tablets/powders/capsules that I've been more keen to trial, and I trial everything for at least a fortnight if it seems to work pretty quickly, or allowing a month for build-up effect if it doesn't seem to work at first, or however long the doctor advises me to wait if it's a medication. And I never trial more than one thing at once. Rather slow way to progress but at least I know what works and what doesn't. But I will eventually get around to the melatonin...
Posted 7/27/2013 11:06 AM (GMT -5)
thats a good plan of how to try things...

Im having a much better day today - almost symptom free with low fatigue, however I hate days like this as i want to do so much - then it will catch up with me!

Now im on Amitriptyline again, im not sure i can take melatonin...forgot to ask...will ask next week as I have to get some more blood tests done.

Im joining a clinic here in the UK, called the optimum health clinic...if you Youtube Optimum Health Clinic, there are brilliant videos to watch on each symptom associated with CFS, there is one on there about Candida and leaky gut...it reminded me of you and thought you might like to check them out

A lot of people have recovered / in remission from this clinic, including the practioners...it has given me hope...It was recommended to me by a friend of mine, who also has M.E, she has recovered and is a high flying lawyer..goes to show anything is possible!
Posted 7/27/2013 6:01 PM (GMT -5)
Yes, the other week I felt better so I went bushwalking up axmountain for 90 mins with my sister... Still recovering! It's like our bodies punish us for doing good things :(

I can take melatonin with my antidepressant (I asked the doc), but of course you're taking a different class of antidepressant to me so you're right, it's best to ask the doctor.

Good for you! I really hope it helps :) :) I will check out the videos

Oh good, if she can be a lawyer then I can be a doctor/Occupational Therapist and you can go back to designing...
Posted 7/28/2013 3:43 AM (GMT -5)
Wackers, sounds like you have tried a lot of different things. With FM we are so sensitive to meds that we can't use alot of them or they don't work for us. I hope you find something that will help you, being sleep deprived is miserable. Hugs, Denise
Posted 7/28/2013 2:41 PM (GMT -5)
I would go see a naturopath and get a cortisol test done. Fairly essential for anybody with sleep problems, fatigue, insomnia. Essential.
Posted 7/29/2013 5:01 AM (GMT 0)
I have been on Ambien 10's for almost 14 years now. They still have the ability to finally knock me out, but have long lost the ability to keep me asleep for long. Most of my nights consists of 4-5 hours total sleep, but its broken sleep, lucky to have even a 2 hour period of solid sleep at the time. And because of that, nightmares are almost a nightly affair for me, it's rare that I don't have them. I don't know much about this stuff, but some say nightmares often happen when you aren't sleeping in that deep zone.

I was put on Tranxene 7.5 nearly 10 years back, I only take 1 per night, about 1-2 hours before I want to go to sleep. It helps in keeping my mind from racing away. I don't feel anything in particular from taking it, so it does what it's suppose to do. My mind never wants to stop being busy.

Hope you find your answer to your sleep problems. My oncologist says my severe sleep issues are a major factor in my greatly diminished quality of life. He says the lack of good sleep is making everything worse in my cancer fight.

Good luck,

David
Posted 7/29/2013 1:44 AM (GMT -5)
I always get nightmares - they're usually what wakes me up at all hours of the night. Family and friends tell me that I always toss and turn and talk and drink water (and occasionally walk) in my sleep. But since starting to use that spray I haven't had any nightmares and my parents haven't noticed any sleep talking/walking! Here's a quick summary of how I'm going on the spray so far:
Before starting: 2 hours sleep, several hours awake, 1 hour sleep
Night 1: 3.5 hours sleep, couple hours awake - then remember to spray, 2 hours sleep
Night 2: 4 hours sleep, wake up, toilet and spray again, 3 hours sleep
Night 3: 5 hours sleep, wake up, spray again, 2 hours sleep
Night 4: 5.5 hours sleep, wake up, spray again, 2.5 hours sleep
Night 5: 6 hours sleep, forget to spray again and stay awake after that
Night 6: spend several hours trying to get to sleep, then remember to spray, fall asleep in about 15 mins, 7.5 hours sleep then got up
Today: I've been able to do a bit of study :) not as much pain :) not as grumpy :)

I'll update again in one week.
Posted 7/29/2013 11:46 AM (GMT -5)
David - I am so sorry to hear about all of your cancer problems, it sounds like you have been through so much...
I don't get nightmares, but vivid dreams every time I sleep...perhaps we are just going straight into REM sleep and missing the deep sleep

I am looking into getting a sleep study done - I think this will be a great way to identify if something else is causing this severe insomnia

Jasmine - I have bought the bach sleep spray, anything is worth trying! I think I remember my sister saying that with Bach remedies they can be combined with meds (shes an aromatherapist)...il check though just in case
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