Sleep Problems Before or After Being Diagnosed?

Discussion in 'Fibromyalgia Main Forum' started by gapsych, Sep 11, 2008.

  1. gapsych

    gapsych New Member

    OOPS!!! I meant to hit edit and hit delete instead. I will try and repost this.

    Sharon do you want me to repost yours or do you want to.

    I was editing to add that I do not get deep stage sleep.

    [This Message was Edited on 09/11/2008]
  2. gapsych

    gapsych New Member

    I have had sleep issues my whole life. I have had RLS since the age of 16, have always needed a lot of sleep, and am a night person.

    While I believe for me that it was a broken arm that started all this and that there are genetic factors, I found that once I started getting this DD, my sleep got worse.

    Addressing the sleep issue has really helped me.

    Maybe sleep issues are another stressor to our bodies that could cause this DD?

    GA[This Message was Removed on 09/11/2008, by gapsych]

    Opps, I hit delete instead of edit. Sharon I will try to repost your answer.

    I was editing to add that per a sleep study I do not go into a deep sleep.

  3. gapsych

    gapsych New Member

    I can not find your response. If you would not mind, can you repost it?

    The fact that you were talking about having a sleep study, prompted me to edit my original post as I had forgotten to put that piece of information in the puzzle.


  4. SkeptikSharon

    SkeptikSharon New Member

    Hi Gapsych,

    I don't remember all that I wrote, so if you want to repost mine, you can. I'll try to remember what I wrote before and write it here, though. Sorry you hit the wrong button! Don't you hate that?

    My issue too is that I don't fully get to the deep stage sleep, because I have the alpha waves that intrude in to my sleep. That means I don't get the recuperative sleep that I so desperately need.

    I have always been a night owl, always slept as much as possible, always hated mornings. It used to drive my husband crazy when we first started living together, because I would be sleeping in until noon on the weekends, while he would be awake by 8am or sometimes earlier, even though he went to bed same time I did. I always felt there was an issue there, but didn't know what it was. Then I remember in 2000, I was taking an Intro Psych class and we discussed the different stages of sleep. I remember telling my hubby that I didn't think I was getting down into that deepest, most recuperative level. I could feel how tired I was in the morning, usually MORE tired than when I went to bed the night before, even if I had slept for 12 hours or more (I know that's not necessarily good either).

    Then I was diagnosed with FM, and eventually convinced my neurologist to send me for a sleep study and it was discovered that I had the Alpha-EEG sleep disorder (I KNEW IT!!!). They still haven't fixed my sleep though, because I have issues with meds either not working or making me feel worse, or like with Ambien CR, I was having hallucinations after taking it. So its still a problem. Fun.
  5. SkeptikSharon

    SkeptikSharon New Member

    Have a lot of you found relief to your sleep issues through sleep meds or supplements?

    I've tried a number of prescription sleep meds, but haven't had the greatest luck with those. I thought or hoped that Ambien CR might be the answer, since its supposed to help you both fall asleep and stay asleep, which are both my issues. But it wouldn't even put me to sleep right away! Instead I'd end up just feeling loopy and be up anyway.

    I've also tried Melatonin and possibly Valerian, although I'm unsure on that one. Those didn't really help me either, but I also don't remember what doses I was trying.
  6. gapsych

    gapsych New Member

    I took Trazadone for years. Because my RLS started up again my doctor put me on Mirapix and I have weaned off the Trazadone. I continue with 1 mg. Klonepin for the RLS and she switched my Zoloft to take at night.

    I have had the best sleep than I have had in years. My RLS was coming back because of being weaned off the Trazadone, short version, as it is an old AD.

    The mirapix has also helped with my FM pain. There are some studies where they used Mirapix for FM pain and got some good results. I will be glad to post it here.

    AS usual, we all repsond differently to medications.

  7. SkeptikSharon

    SkeptikSharon New Member

    Thanks Gapsych and Jaminhealth! It is interesting to hear what has worked for others and what hasn’t, although it is frustrating how differently we all react to meds. It seems like my body does not like medication. AT ALL. Almost every single medication I’ve tried – antidepressants, other psych meds, pain meds, muscle relaxers, Lyrica, Neurontin, Ultram, etc. – either don’t do ANYTHING for me or they make me feel worse. My concern after the array of psych meds I tried was that perhaps these meds either build tolerance too quickly in my body or maybe my body sees some of them as toxic. I’m not really sure. I just know that nothing works. I was taking Zofran for a while for the nausea and stomach issues I’ve been having for the last few years, and at first it worked a little, but at this point, if I do take it, it does NOTHING. And it scares me to keep trying too many meds, because I don’t want to destroy what little health I may have left, know what I mean? I’m currently weaning completely off my narcotic pain med, since it seems to have made my stomach MUCH worse and doesn’t touch the pain anyway (maybe takes the edge off, but that’s just not enough). After that, I will be mostly medication free. The docs don’t know what to do when the meds just don’t work for patients, and it seems like if meds don’t work for you, the docs seem to assume that it MUST be psychological in nature.

    I feel much more comfortable trying supplements and things like that, even though they could be considered drugs too. It does scare me a bit though, to take too many supplements, because I don’t know enough about them and interactions and maximum recommended doses and all that fun stuff. I’d rather have a doc that was aware of all that, but it seems many are not, because they don’t get kickbacks from supplements. =)

    Anyways, sorry to go off the topic of sleep. =)
  8. gapsych

    gapsych New Member

    Right now I am very comforable with the combination of sleep meds. I have.

    I do not believe homeopathy is scientifically proven and limit my vitamins supplements to those that have been scrutinized by science. I take CoQ10, Fish Oil and Folic Acid as per my medical doctor who recommended them. I do not want to argue the merit of supps. vs. meds. We all make different choices. However, thanks for your thoughtfulness.

    I have tried the magnesium but it did not work for me. Epson salts will give my legs relief for about an hour. My RLS is pretty severe.

    As I said, it has taken me some time to get this combination of meds and am I am getting the best sleep in many decades.

    The question I am posing is how many people had sleep problems before this DD or if the sleep problems started after your DD, or perhaps like me, always had sleep problems but they were exacerbated by the DD.

    Take care.
    [This Message was Edited on 09/11/2008]
  9. vannafeelbettr

    vannafeelbettr New Member

    Great post!!

    I had my first son early 2005 and that stinker was up SEVERAL times a night leading into bout with night terrors. He's finally starting to sleep well at 3 1/2. But when he was 2, his little brother came around.... same problems. Sometimes had me up 7-8 times a night... and I'm not exaggerating. I was soo sleep deprived from that... but had no sleeping issues of my own. Got FM after a car accident over a year ago, but have no difficulty sleeping issues from it!! (I'm lucky.... can fall asleep easily) But, younger son, at 19 months, still wakes me 3-4 times during the night. My guess is my body was so sleep deprived FM may have be inevitable.... accident may have been final straw.
  10. gapsych

    gapsych New Member

    Good point. I remember those days of sleep deprivation with kids.

  11. vannafeelbettr

    vannafeelbettr New Member

    Check out kallsup's board of her theory with FM and sleep abnormalities. She may be onto something. Her protocol looks simple and worth a try!
  12. gapsych

    gapsych New Member

    Is Kallsup a person? I googled this and was to a swedish site that has something to do with an IQ test?

    Vanna, I would like to buy a vowel!!

    Am I lost again?

    Please help, LOL!!

    THanks, GA

    PS, I found it under allsups sleep protocal. I have bookmarked it to read later. Thanks.
    [This Message was Edited on 09/11/2008]
  13. vannafeelbettr

    vannafeelbettr New Member

    The kallsup I was referring to is right here on this Fibromyalgia support messege board. LMOA at all the hard work you did at googling it. I'm sorry I wasn't more clear.... for that I will give you all you vowels for free!!!

    kallsup has a post titled 'try this dietary method'. In it, she will explain how "sick" people like us can attain the deep sleep stage fairly easily.

    Good luck on your search, and stay away from those Swedes!!

  14. gapsych

    gapsych New Member

    Thanks with you giving me the three vowels, I now have the correct word!!!

    I may go back and translate the Swedish site, you just press the button, as it may have games on it!!

    See, sometimes when we get lost, we have an adventure!!!

    Take care and thanks.

    [This Message was Edited on 09/12/2008]