Big, big sleep issues

Discussion in 'Fibromyalgia Main Forum' started by Smurfette17, Jan 14, 2009.

  1. Smurfette17

    Smurfette17 New Member

    I am at the end of my rope with my sleep issues. A huge symptom for me is disrupted, fragmented sleep. Usually I can stay asleep for about 4 hours and then not fall back asleep. But during a flare-up, such as now, things get so bad that sometimes I have trouble just getting to sleep and then I don’t sleep for more than 2 hrs. In other words, the more exhausted I am, the worse my sleep. Prior to CFS, I always needed 7-8 hrs to feel good. With CFS, I feel I need 8-10 hrs. Also, everything I've read indicates that if we don't get good quality sleep, recovery is unlikely.

    I’ve tried natural things like melatonin and Valerian with no results.

    I have been taking trazodone for the last 6 week or so, which worked better than nothing, giving me 4-5 good hours at least. But lately, after I I experimented with Cymbalta and Zoloft which messed with my system, it’s not doing much of anything. I can’t take more than 50mg of trazodone or else I am very groggy the next day and my blood pressure drops too low (in the 70s).

    I’m seeing my psychiatrist on Friday and I really us to address sleep. I feel that if sleep is addressed, better mood will follow.

    Would it be worth it to add something on top of the trazodone? Like Ambien? I’ve done well with Ambien before, it’s just that it wears off for me after 5 hrs. Klonopin? But I am trying to come off Ativan, so not sure she’ll want to add another benzo.

    What about things like acupuncture? Has that worked for anyone? Please, any ideas will be great.


  2. Cinderbug

    Cinderbug New Member

    I had tons of sleep issues until I had two sleep studies last summer.

    I now sleep with a C-PAP machine at night and sleep so much better.

    I wish I would have done that years ago.

    Good Luck,

  3. sweetbeatlvr

    sweetbeatlvr New Member

    my sleep has been horrible lately. my pain levels have been terrible lately too, which i'm assuming is because of the bad sleep.

    i can fall asleep ok, but it's staying asleep thats the problem. i wake up every hour and half to 2 hours, without fail! it's really annoying.

    i've tried trazadone, and ambiem, but no help.

    ambien cr (er?) worked really well at keeping me asleep, but my insurance will not cover it, and it's too expensive for me to afford.

    sorry i don't have any advice, i'm hoping some more people come on and give you some.

    i desperately need some (good) sleep!
  4. Juloo

    Juloo Member

    Smurfette, I am so, so sorry that you are having sleep problems. When your day starts out being wiped out, nothing seems to make it better.

    You specifically asked about Ambien. I take a very low dose of Ambien (actually, the generic -- zolpidem tartrate) every night. I actually split a 5 mg pill in half. Because you are waking up during the night, perhaps you could try splitting your allowed dose, and taking one when you wake up.

    I must be honest, though. The ONLY thing that has worked for me to get the deep sleep (stages 3/4) that most of us are suffering without is Xyrem. And I'm not even taking it now (too will not pay for me because it is only approved for narcolepsy with cataplexy). It took a VERY LONG TIME to get the dosage right...and there were some difficult nights getting there (believe me, you do not want to be awake while this stuff works).

    And even now when I take it, I have to take the low dose Ambien right before so that I will stay asleep while it works.

    But I consider it a wonder drug, even with all the difficulties to get it working right. When I take it, I do not even think about sleep the next morning or all through the day. I'm like a normal person.

    Another difficulty is that the prescribing physician needs to be signed on with their prescribing program. So not just anyone can work with you on this.
  5. SnooZQ

    SnooZQ New Member

    Hi Anita,

    I've experienced a rut in past, a negative spiral, where CFS & fibro pain interfered with sleep, and the fragmented sleep perpetuated the flare.

    There are many, many different causes of sleep disruption, just as there are many different causes of CFS & Fibro symptoms.

    The shortest route from point A to point B is usually the straightest route. The best route to defeating CFS and/or Fibro is finding your particular cause/trigger, and dealing with it. The shortest route to dealing with a sleep disorder is usually pinpointing the causes, and dealing with them.

    That said, I believe that if one's main problems related to sleep are in the realm of psychiatry, perhaps an anxiety or depression-related sleep disorder, or a bipolar manic phase sleep disorder, then addressing the sleep problem with the help of a psychiatrist is a good use of one's time, patience, and health-care dollars.

    Another possibility -- if you feel that your sleep problems may be related to anxiety or depression, is the use of an Alpha-Stim device. In our family, we were able to rent a unit inexpensively from a prescribing psychologist. It was very helpful in restoring sleep rhythms, and we did decide to purchase the unit.

    On the other hand, if the cause of one's sleep disorder is Not primarily in the realm of psychiatry, then there may be shorter, straighter routes to improving sleep and health -- for example, a sleep study. Or working with a CFS specialist.

    Is there any chance you are peri/menopausal? For some women in those seasons of life, oral or topical bio-identical progesterone is very helpful in restoring sleep rhythms. If you are cycling and like do things in an evidence-based manner, you could request a luteal-phase serum progesterone test from your OBGYN.

    Best wishes.

  6. Smurfette17

    Smurfette17 New Member

    Thanks everyone, for the responses so far.

    I don't think I'm perimenopausal-- I'm only 33...

    I should clarify that prior to CFS I always had *some* trouble staying asleep, particularly if I was dealing with a stressful situation. I don't think my sleep issues now have to do with anxiety and depression, though. I don't lie awake worrying about life-- I've had that type of insomnia before, and this is different.

    I know that I do sleep somewhat, because I dream.

    You have definitely given me food for thought for when I see my psychiatrist later this week. I had read that trazodone does wonders, particularly for stages 3 and 4, which is why I asked her about trazodone and started off with that. I've been very disappointed that it hasn't worked well in my case. I have a CFS friend who said she did really well with doxepin too, so maybe that's another option.
  7. Smurfette17

    Smurfette17 New Member

    Hi again,

    I just wanted to post on what has been going on… and to ask for some more opinions. As a reminder: I usually fall asleep immediately, but the problem is that I can only stay asleep for 3-4 hours before the disordered, fragmented sleep starts. However, sometimes it can take me a while to fall asleep when I get to bed too.

    I saw my psychiatrist again. She is very responsive and knows a lot—but I don’t think she knows about CFS itself that much (though she said she has patients with FM). I did take an article on CFS for her to read, which had a section on sleep. She was responsive to that.

    So, after talking over many options... Her preferred option was to have me take a tricyclic antidepressant (Nortiptyline/ Pamelor) at a low dose. She said it would help me sleep and with pain (though pain isn’t a huge issue for me). I have done well with amitriptyline in the past when I took it for migraine prevention (but this was pre-CFS). However, since I have a heart arrythmia, she wanted to speak to Dr. Lerner first to see if Pamelor would be ok. I guess it can affect the heart. Anyone have experience with Pamelor?

    For now, we decided that I would continue with trazodone (25 or 50mg), because it works to at least give me some sleep. But that we’d add something on top of it. We discussed Klonopin, but because I am currently trying to come off Ativan, we were reluctant to go that route for now. She added Ambien. Been taking 5mg + trazodone and am sleeping a bit better—it’s aways a bit better, not good or great.

    The other thing she suggested was melatonin. I have tried it before (on its own), with no success. But perhaps if I add it to my sleep regimen… Have others had success with it? I do like that my doctor suggests more natural things—melatonin, and also omega-3 oils for depression.

    I also noticed that I sleep way better when my husband is in bed/at home. At first this didn’t make any sense to me, since he comes to bed much later than me, snores and gets up for work at 5 am, thus often disrupting my sleep. But for some reason, I sleep better when he’s there. Go figure.
  8. Smurfette17

    Smurfette17 New Member

    Question about the melatonin: when you started it, how long did it take you to see effects? My doctor warned me that at first it may give one more restless sleep before the body adjusts, but that after a few days, it should work. Is that how it was for you? And, do you take it alone or in combo with other sleep aids.

  9. dragon06

    dragon06 New Member

    The only sleep medication that ever worked for me is Halcion (generic is Triazolam). And it works great. I tried everything and nothing worked until I tried this.
  10. PVLady

    PVLady New Member

    You are correct, sleep is very important. I suggest you experiment with different sleep meds and see which one you like best. I also had terrible sleep problems and it seemed to come on fast a few years ago. My fibro doctor was patient and we tried about 10 different sleep meds to see which agreed with me the best.

    I landed on Ambien. In the process I tried Restoril, Lunesta, Elavil, and several more. My doctor helped me so much. According to statistics, sleep problems are huge in the population.

    I have been using Ambien for 3 years now doing fine. A few times I tried to stop it but the same problems returned so I just resigned myself. The second best sleep med I liked was Restoril because it also helps if you have any anxiety.

    You might also consider a sleep study to make sure you don't have sleep apnea causing the problem. I heard the new c-pap devices are small and easy to use. If you do have sleep apnea apparently using the c-pap makes a huge difference.

    With my condition, sleep is everything. If I don't get enough I start having pain. If I take a trip and don't get enough sleep I usually am in bed a few days after returning just to get back on track. It is ridiculous but I try to accept it, what else can I do...

    One last med I wanted to mention was Soma. It is a muscle relaxant and helps with aching. In the past I have also used it to sleep as it makes you sleepy and helps you muscles at the same time.
    [This Message was Edited on 01/23/2009]
  11. mammabek

    mammabek New Member

    u dont mention if u toss and turn but a major clue is that u sleep better with your hubby. that implies restless leg, which many of us have. its like you wake yourself up from kicking and moving. u move less when someone is in the bed with u for some reason. also miripex has very very few side effects. talk to your doc.

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