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Posted 3/7/2007 6:44 PM (GMT -7)

Okay, so I decided to come to this forum because I sleep A LOT!! I have been diagnosed with fibromyalgia, but now with cfs. I was wondering how many hours of sleep most people get most nights.

I seem to be getting 10-12 hours each night, plus a nap sometimes and I am still tired.

 

Do I have cfs??

 

Thanks for your replies,

 

Kristin

Fibromyalgia is REAL

Posted 3/8/2007 10:34 AM (GMT -7)
Kristen, I don't think it's uncommon for those of us with CFS to sleep 10-12 hrs of sleep and night and still need to rest and nap during the day. The fatigue is just overwhelming and no amount of sleep seems to make a difference. I wouldn't surprise me if you had cfs - there are people who have both cfs and fibro. Do you have the trigger points for fibro? SOme people think that cfs and fibro are one in the same disease but there are very real differences between the two. A lot of people with cfs run low grade fevers, have sore throats and swollen glands - I don't know if you have any of these. I'm sorry you are going through all of this and hopefully your doctor can help you sort out if you have cfs, fibro, or both. Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985 Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg ; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops   Clickable:   LUPUS INFORMATION & LUPUS RESOURCES . Please allow HealingWell to continue helping others by donating: https://www.healingwell.com/donate/   Co-Moderator: Lupus and CFS Forums
Posted 3/8/2007 6:22 PM (GMT -7)
My new pain doc put me on Ambien CR for CFS associated with Fibro. I didn't ask for it. She says that I never feel better because I never get restorative sleep. I go to sleep fine, I just don't stay asleep for more than a few hours, even if I'm in bed for an eternity. Give me a few days and I'll let you know what I think.

Other suggestions are getting rid of the tv, radio, and reading in bed so that you train yourself to do nothing in bedroom that could increase stimulation. It's supposed to be a haven. In the meantime, have sex in the kitchen.

Best of luck,
Stephanie
Dx: FMS/CMP/DDD - 2 ACFs with more to follow.
Rx: Cymbalta, Soma, Zanaflex, EC Naprosyn, Ambien CR, Lortab and Percocet.

Posted 3/16/2007 10:32 PM (GMT -7)
I have the opposite problem-I can barely get in a few hours of sleep-once I fall asleep I can't stay alseep for long. it is up and down all night. I nap during the day though for sort amounts of time to try and fill the sleep gap. Share the secret-I want 10 hours of sleep!!!!!!

Do you take anything that can cause drowsiness, fibromite? maybe that is what allows you to sleep for that long and still be tired. may be something to talk to your doc about.

bree
Posted 3/17/2007 6:40 AM (GMT -7)
I don't sleep so much per se. My fatigue is not "sleepiness" or feeling "tired" so much, as utter complete physical exhaustion and weakness, and the amount of sleep I get does not really affect this, but if I don't get enough sleep of course I feel worse.
pasara
co-moderator CFS forum

"We don't see things as they are, we see them as we are."

- Anais Nin

Posted 3/19/2007 5:36 PM (GMT -7)
I just went to the emergency room the other weekend and now they diagnosed me with cfs on top of the fibro. The doctor put me on Ambien CR because he thinks I am not getting good sleep. Anyways, I am also on provigil (but I just got off of it) and that was supposed to help me stay awake and I could still sleep when I took that!! It is very weird.
Fibromyalgia is REAL

Posted 3/19/2007 6:03 PM (GMT -7)
I'm sorry to hear that you also have cfs on top of fibro - you got a double whammy. Hopefully the Ambien will work. If it doesn't, talk to your doctor because there are other sleep aids out there too. Take care and keep us updated. Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985 Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg ; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops   Clickable:   LUPUS INFORMATION & LUPUS RESOURCES . Please allow HealingWell to continue helping others by donating: https://www.healingwell.com/donate/   Co-Moderator: Lupus and CFS Forums
Posted 3/20/2007 9:00 AM (GMT -7)
Provigil isn't supposed to keep you from sleeping, it's supposed to help with the fatigue and helping you feel more energized so you don't want to sleep all the time.

I've been on it for over a year now, and I can still go to sleep if I want to, but I choose not to LOL. Although Sunday there was this big car meeting (yes I'm a chick) and I forgot to take my meds before I left because I left in such a hurry, and my gosh did I ever feel it later on that day. I was just so exhausted and all I wanted to do was sleep... took a big nap... was still tired. Kinda reminded me of how bad of shape I was in before the provigil and before I found out I had CFS.
Hugs,

Nikki

I have chronic fatigue syndrome, anxiety (at this current moment), and some minor abdominal pain which still hasn't been figured out yet... need a break from all the testing ;)

Medications:

CFS: Provigil 200mg, once a day
Anxiety: Lorazepam .5 or 1mg 3xs a day or as needed

Posted 3/20/2007 11:23 AM (GMT -7)
Provigil was specifically designed to treat NARCOLEPSY and other sleep disorders. So, yes, it IS supposed to keep you from sleeping. the idea however is to take it early enough that it has worn off enough to not disrupt nighttime sleep. provigilis still a very new drug, and its other uses are all off-label. I believe the only other group of patients that a true medical study on its safety and efficacy has been done is those with MS. That is not to say that it has not helped some people, including fallenangel, but it is important to always be aware of what uses a medication has been approved for, how long it has been on the market, and any and all risks associated with it so that you can make an informed decision on whether it is appropriate for a particular individual.
pasara
co-moderator CFS forum
Posted 3/20/2007 12:52 PM (GMT -7)
Wow! I am a brand new member as of 5 minutes ago and I already am feeling so LESS ALONE!

RE the Sleepiness thing - YESSSSSSSSSSSSSSSSS! Oh god, I thought i was the only one like this - I cannot get enough sleep, I wake up and an hour later i'm drowsy.

I am going to the doctor today to finally address this - it has only been this last year of my life I have had this problem so i know it's not all in my head, my body is definitely not the same.

I wish you all rest and relief - I know how this feels - thank you for being there to talk to!

New Member, Pru
Posted 3/20/2007 5:37 PM (GMT -7)

pasara said...
Provigil was specifically designed to treat NARCOLEPSY and other sleep disorders. So, yes, it IS supposed to keep you from sleeping. the idea however is to take it early enough that it has worn off enough to not disrupt nighttime sleep. provigilis still a very new drug, and its other uses are all off-label. I believe the only other group of patients that a true medical study on its safety and efficacy has been done is those with MS. That is not to say that it has not helped some people, including fallenangel, but it is important to always be aware of what uses a medication has been approved for, how long it has been on the market, and any and all risks associated with it so that you can make an informed decision on whether it is appropriate for a particular individual.

Taken from the Provigil website (www.provigil.com): (quoting a source for informational purposes doesn't appear to break any of the rules... if it does please delete it, but I'm just trying to clear up some information on Provigil)

"PROVIGIL is indicated to improve wakefulness in patients with excessive sleepiness associated with narcolepsy, obstructive sleep apnea/hypopnea syndrome and shift work sleep disorder." (it's intended use is to not keep you from falling alseep, but to promote wakefulness and help treat excessive fatigue)

"What is the most important information I should know about PROVIGIL?
PROVIGIL may help treat the excessive sleepiness caused by certain sleep disorders, but it may
not stop all your sleepiness. Regardless of how improved you may feel, do not change your
daily habits until your doctor tells you it is okay. Discuss your level of sleepiness with your
doctor at each visit. People with sleep disorders should always be careful about doing things that
could be dangerous, including driving a car."

"What is PROVIGIL?
PROVIGIL is a medicine to treat unusually sleepy people who have one of the following
diagnosed sleep disorders:
• narcolepsy
• obstructive sleep apnea/hypopnea syndrome (OSAHS). PROVIGIL is used along with
other medical treatments for OSAHS.
• shift work sleep disorder (SWSD)"

****"PROVIGIL will not cure the above sleep disorders. PROVIGIL may help the sleepiness caused
by these conditions, but it may not stop all your sleepiness. PROVIGIL is not meant to be used
in place of getting enough sleep. You should follow your doctor's advice about good sleep habits
and using other treatments."****

****"General information about PROVIGIL
Medicines are sometimes prescribed for conditions that are not listed in patient information
leaflets. Do not use PROVIGIL for a condition for which it was not prescribed. This medication
is for your use only. Do not share this medication with others."****


Just wanted to clear up its intended use is not to PREVENT you from sleeping, but promote wakefulness with the least amount of side effects. It was developed and tested/approved for narcolepsy, OSAHS, SWSD... but is also prescribed in wider acceptance for CFS and other diseases to treat the excessive fatigue associated with such diseases or illnesses.

Not arguing or anything, just trying to clear things up a bit.

either way, yes a doctor should always be consulted about your medical concerns and help you find something that works good for you. Not every medication is for everyone, but I know I'm eternally grateful for Provigil.
Hugs,

Nikki

I have chronic fatigue syndrome, anxiety (at this current moment), and some minor abdominal pain which still hasn't been figured out yet... need a break from all the testing ;)

Medications:

CFS: Provigil 200mg, once a day
Anxiety: Lorazepam .5 or 1mg 3xs a day or as needed

Posted 3/25/2007 4:25 PM (GMT -7)
Thank you for all of your replies. I have learned more about provigil now and that is fantastic!! I however, not going to take it anymore because I feel that it doesn't work for me. I do take the ambien sometimes and it has helped me feel better the next day because I got deeper level of sleep.
Yes I do have all the fibro points and I hate going to the doctors when they have to push on all of the points!!! It does suck that I have fibro and CFS, but at least the docs have tried everything and I believe that I have the right dx's.

Thanks again!! :)
dx'd with fibro and cfs
Soma, Malic Acid with Magnesium, Wellbutrin XL, Clonazapam, Vicodin, Neurontin

Posted 4/20/2007 1:43 AM (GMT -7)

pasara said...
I don't sleep so much per se. My fatigue is not "sleepiness" or feeling "tired" so much, as utter complete physical exhaustion and weakness, and the amount of sleep I get does not really affect this, but if I don't get enough sleep of course I feel worse.

Yes, that's how I feel as well. I am utterly exhausted, as if I'd been on a 20 mile hike, but I'm not sleepy, nor do I sleep excessively. In fact, it's extremely difficult for me to fall asleep, and I'm often awake for 24 hours at a time. (I sleep well once I fall asleep, but I don't wake up rested.)

Since it's so hard for me to fall asleep, I would never touch something like Provigil. It's the absolute opposite of what I need.

Ambien does help me sleep, but I find that I feel worse after having slept with it than I do when I've slept without it, so I rarely take it. It also impairs my memory and ability to pay attention. (Once, after having taken it the night before, I got on the wrong subway twice, something I normally would never do.)
Posted 4/20/2007 8:51 AM (GMT -7)

Hello,

I am Kitt and I am pretty new here.

I am no expert on his topic but this is how I understand CFS.

People with CFS present with different patterns of primary symptoms. Symptom severity can also vary considerably. Clinicians should query patients about which symptoms are most disruptive or disabling and tailor the management plan accordingly. Treatment can be directed toward the most problematic symptoms as prioritized by the patient, but only after underlying conditions applicable to those symptoms have been investigated and excluded.

Primary symptoms may include sleep problems, muscle and joint pain, cognitive dysfunction, fatigue, headaches and sore throat. Gastrointestinal complaints, orthostatic instability, depression and allergies are also seen in many patients.

Unrefreshing sleep can be present even though medications may help patients achieve requisite hours of sleep. A sleep specialist should evaluate patients whose sleep remains non-restorative following standard interventions.

This is a wonderful place to come and share your problems as well as support others.

Please keep posting. yeah

 

Respectfully

Kitt

 

"If you doubt you can accomplish something, then you can’t accomplish it. You have to have confidence in your ability, and then be tough enough to follow through.”

Rosalyn Carter
 

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