Do any of you have sleepapnea since FMS?

Discussion in 'Fibromyalgia Main Forum' started by Judi, Mar 4, 2003.

  1. Judi

    Judi New Member

    I haven`t posted in a while,& I always get some great advice from you guys & gals, I had started just going to sleep anywhere I am. it didn`t bother me until I was driving & went to sleep, so when I got home I laid down, but it just started getting worse, one of my DR.`S Did have a sleep study done on me, I don`t know what the results are, I really was & still am wondering if its my medicine. if any of you do this Please what did you do & did it just pass? it seems like everytime I go to the dr. there is something new that they find. I know stress is bad & I am going through so stress right now, but driving is something I want to keep please if you can ANY HELP I am searching everything I can right now.
    Thank you & God Bless you
  2. willow

    willow New Member

    Hi Judi,
    I have been dx by two different docs as having 3 different sleep disorders.

    Sleep apnea- is when you stop breathing during sleep, and you don't know you do unless someone tells you that you snore very loud and then it completely stops, then you "snort" and "gasp" then the rhythmic snoring starts again.

    NARCOLEPSY- is the 2nd thing and this is what you described. Do some research on your puter on this, there is plenty of it. You just all of a sudden slump over asleep (I have learned to notice when this is coming on, and I have about 1 to 2 minutes to pull off the road in time) Then my daughter, who just got her restricted license drives. I try not to drive alone at night since it seems to happen more in the evening, even though they say it has nothing to do with "being sleepy" or "tired." Just yet ANOTHER "short-circuit" in the brain.

    Then I started having spells that are like being in a coma.
    You can hear, but the only thing you can move is your eyeballs. This is called CATAPLEXY, and is very scary the first few times. You will find more info on it under "narcolepsy" than to look it up separately. It says you can have "narc" without "cat" but NOT vice versa.

    I seem to have them together, and alot of times it occurs after eating certain foods (although, NOTHING I read says this) Spaghetti, will almost always make me "zonk-out", I have fallen over while still chewing it, with my face barely missing my bowl! The first time it happened, I had just eaten a gingerbread cookie. I am hypoglycemic, so I don't know if that is my connection with certain foods.

    Have you noticed this relation to certain foods? I was wondering if I was the only one this happens to.

    I work at my daughter's school (small Christian school), it has happened there twice this year so far, both times within 20 min of eating. If this is what happens to you, the best thing you can do is avoid those foods if you are going to be driving alone.
    If yours has no relation to food, or you have no "warning", as hard as it would be, you should either not drive at all, but at least not alone.
    I tell anyone who gets in my front seat, if I start to slump over, just slowly pull the emergency brake while steering off the road, and lift my foot of the gas pedal or release the cruise control.
    This has happened a couple of times. I live in a very rural area, this may not work too well in downtown Dallas!

    Hope this helps,
    Love, Lisa
  3. willow

    willow New Member

    I'm surprised no one else replied to your post cuz I know others here have these problems. In our local support group, there are quite a few with these problems.

    So, I just wanted to bump it up for you, and also, for anyone who may have missed it that would like to respond.
    Please read up on Narcolepsy, I think this will give you the answers you are looking for.

    Love and Prayers, Lisa
  4. mapessd

    mapessd New Member

    LOL i do all these crazy things I to work at a school and when i have a student ask WHY YOU SLEEPING? Its time to find out whats going on
    Judi i'm having a sleep studie done tomorrow nite . I also just had a echo stress test on my heart the other day and that showed no blockage so hoping this sleep thing finds out whats wrong.. I can sleep ten hours and then can't stay awake the next day . I am so tired of being tired ..
    The Dr at the sleep lab on my first visit looked at one sheet that i scored to see what likely hood of falling asleep my score was 22 he said i was in the danger zone because 9.5 is a really bad score and mine was a wopping 22 so some thing bettter show up .. Good luck with your Dx and keep us posted on what you find out
    PS I'm now going to read up on Narcolepsy
  5. Judi

    Judi New Member

    Thank you for your reply, I have been gone all day to doctors so I have just got this, I am going to look up Narcolepsy. you have given me more imformations than anyone, I don`t go back to this dr. until Monday. I haven`t talked to anyone that has this, My daughter knows someone, but I don`t. I haven`t even thought about checking to see if it happens more after I eat something, you have given me some in sight on something to check out. I know it is scary to be driving & wow you go to sleep. I Thank you so much, Do you by chance have FMS also?
    God Bless You,
  6. Judi

    Judi New Member

    Thank you for reply also. you have said something that I don`t understand, maybe after I read up on this it will help, but what are these score`s for & what does it mean? No one has said anything about scores.
    Thank you,
    God Bless You,
  7. willow

    willow New Member

    Yes, I do have FMS along with several other problems. Mine was triggered from a car wreck 7 1/2 yrs ago. I injured by back and neck and the pain continued to spread over my whole body, until I became bed-ridden for 2 1/2 yrs. My husband is quadriplegic, it took all I could do after 2 doses of pain meds to get him up so he could take his pain meds, take a shower, and then I would get him dressed through tears of pain.
    That was horrible, and at that time, I didn't know what was wrong with me. All my tests were "normal", except for bulging discs in my lower back, mid-back, and neck. But, I knew people who had bulging discs that were doing heavy construction work and had a life!

    I was waiting to hear from you about the results of your tests. What did they find out?
    I was ordered to have the sleep test done, but I don't have ins. and they said it would be between $3000 and $6000, which had to be paid at the time of service. So, I never had it done.
    I did have some bloodwork done last week to check hormone levels, I am still waiting for results. I have had symptoms of early menopause for 3 yrs. and they are FINALLY checking to see if I am, or if it is "just" stress. He also referred me to a psyciatrist for stress, he said I needed to be on anti-depressants. (I was separated from my hubby for 11 mths, and just came back 3 1/2 weeks ago) I have tried several to try to help me sleep several yrs ago, but did not stay on any very long. Each one caused other symptoms, and I already had enough of those!

    I would really like to hear about your test results, if you don't mind sharing them.
    Love and Prayers, Lisa
  8. Judi

    Judi New Member

    Lisa, Boy it sounds like you have your plate full.
    I am sorry it has taken me so long to get back with you. My sister has an acident when feeding her horses & her back is broke, so I have really been busy.
    Monday I went to the dr. that sent me for the sleep study, he got very up set when he found out that the dr. not the sleep center had contacted me. He called them right then while I was right there in his office. I do have sleep apnea, in a 30 minute period I stoped breathing 11 different times. the Tec that fitted me to the machine only had what the dr. that I have never seen nor do I know his name fax to her. she did tell me I do need my report, so to ask my dr. for a copy or ask for the dr.`s name so I can go get a copy, she said it was important to know how long I didn`t breath each time. I have changed the mask once & may have to change again.
    What do you do that makes you think you have this? I didn`t think much until I started going to sleep driving, & that really concerned me, but thought it might be my med`s. but it wasn`t. I just pray that this helps that.
    I had a really good friend that was a Quad. if fact I forgot he was in a wheelchair most of the time. when he & his wife divorced, My husband & I stayed friends with both of them, I would go get Mike & take him to church.
    Are you on disability? if you want to email me you can email me at
    God Bless You, & I will be praying for you
  9. mapessd

    mapessd New Member

    Sorry i forgot to come back and let you know how my sleep studie went. Well the next day the dr at the sleep center called me and said he ordered me a CPAP machiene and he wanted me to have it that nite he said i sever sleep distubances and my oxigen level dropped down to 60 when i slept. So i got the thing and i am sleeping with it every nite and i do still am tired some but its a different kind of tired.. This next Mon i go again so they can make adjustments and they may have to add oxigen So good luck
    PS the scores i talked about was a sheet of ?s that i had to give a score of 1 to 4 on the liklyhood of falling asleep .. One was What the chance of falling asleep at work and watching TV or so on & so on I don't know if all sleep centers use this type of test or not .. Boy did i flunk this one Big time lol
  10. Judi

    Judi New Member

    Sue, It`s good to find out what is wrong isn`t it? not that we like what we find out, it`s just that we know something & it`s not just a run around.
    I did have to fill out paper`s with questions like that,as I have said I still have not seen the sleep study doctor.
    I do sleep better. I haven`t had to drive very much since I have had the machine, I will be going over to stay with my sister, that will be about an hour & a half drive, so that will be something, before I could just go 3 miles. I do think that stress sure makes it more active.
    You take care of your self, I will be praying for you.
    Like I told Lisa, if you want to email me you can at
    God Bless You,I will be praying for you.
  11. AppleDumplin

    AppleDumplin New Member

    My hubby has FMS/CFS. The doc is sending him to the hospital on the 25th to have a sleep study done. She thinks that he has it. She told us that most people with these illnesses have some sort of sleep disorder. I can't wait to see what they find out about him. I hope you find all the information that you need to help you..
    God Bless...
  12. Judi

    Judi New Member

    As much as I have looked up, about all I can find on Narcolepsy is maybe what they would call what I was doing, & that is just going to sleep, I could be driving & before I knew it I was asleep, it was really scary. One time I was behind a police man, but he went on. It really scares me that my ex-niece still wants me to come get her kids. well one of them, she will not bring her out here. I just pray that this machine does help.
    Apple, I pray that they find out about your husband also. I haven`t been able to sleep at night for several years, but it was always when I was up, I didn`t go back to sleep until night, then it just happened I could be talking on the phone & I would go to sleep on my friend & family.
    I will be praying
    God Bless You,
  13. sbarb

    sbarb New Member


    I had a sleep study done about 2 months ago. I do not have sleep apnea but do have what's referred to as upper airway resistence (related to sleep apnea) and a very abnomal sleep architechture, along with the snoring and leg movement that started with the FM and weight gain. They could also tell that I had FM or some other chronic pain type disorder by the alpha brain wave stuff in the study.

    My MD had already started me on Provigil the month before which had made a significant improvement in my alertness, energy level and "length of day" (I can now stay up past 9pm like normal people. So when I asked my MD what he would do for what was diagnosed by the sleep study, he said he would have prescribed Provigil.

    The sleep specialist also recommended amitryptiline at night (I was already taking Doxepin for a year). My MD wants to see how I do without the Doxepin - so far I think I am awaking a little more tired that with I would also be interested in hearing from those of you who have tried both amitryptiline and doxepin at night.

    One interesting point about sleep studies and FM: if they are now able see the presence of FM-type illnesses in sleep studies, that may be beneficial evidence for all of our rejected LTD claims!

  14. pearls

    pearls New Member

    I was diagnosed first with CFIDS, then FMS, moderate sleep apnea, and then carpal tunnel syndrome.

    Apnea: two other docs who also work with sleep apnea saw the report and called it "mild sleep apnea." I haven't yet followed up on the first study because I am working, overwhelmed at work, developed pneumonia - and now am dealing with my second bout of pneumonia in four months!

  15. Judi

    Judi New Member

    B. I am so sorry you are having so many problems. As you probably already know, or to me every time I go to the Doc. it seems as if there is always something else. This one Rhemy has been a god send to me. I have been on Doxipen, & elvil, both of them put weight on, but the one thing that I hated about them was that when I got up, I still felt tired, it was hard for me to get the wake feeling & I am a morning person. between my Pain Management & Rhemy they did a med comparison things, I don`t really know what it is called. I was on valium to help me sleep, I asked to be taken off of this one, I just couldn`t tell what it did, then my Rhemy`s new dr. to help her, she has patients that come from everywhere to see her, so I did try him, but he put me back on elivel, I told him I didn`t want on it, but he said he was the dr. anyway I got to talk to my Rhemy, she had me come see her in 2 weeks. She put me on Klonopin,
    for RLS, & to help on the sleep. it really sounds weird that one can go to sleep just anywhere,yet you can`t sleep at night, driving is when I got concerned, & really thought it was my meds. but I don`t do this everyday & like the day I found out my sister broke her back, I even went to sleep in Sunday School, at the hospital I couldn`t stay awake. to me this is as weird as FMS ONLY in a completely different way, like FMS has pain, sleep apnea doesn`t but I have found if I push it FMS can shut me down with out warning also.
    I didn`t not see the sleep dr. only my pain management one, & he really got up set that the sleep dr. hadn`t contacted me in 6 six week`s.
    I can tell a big difference since I have the cpap machine. I do need to go back to have them check this noise piece, it fit at first, this is the second one, I think this one has stretched it has a lot of air coming out from around it. I have been staying with my sister so I just haven`t been able to have it checked out. but will have to before I go back to stay with her.
    I don`t know if I have answered your question, if not ask it again, Please, I am really tired & you know that FMS fog is pretty busy today also.
    I will be praying for you,
    God Bless You,
  16. jstbrznby

    jstbrznby New Member

    HI There, I am new in the neighborhood and after all this time of feeling like I am out here dying alone have been diagnosed with Cfs and FM. My symptoms have been like everyone elses here! I can't believe this, I thought I must be crazy because I tell these dr.s over and over again about how I just nod out at all times of the day, mornings even. The worst is the pain like the flu, don't know if I am hot or cold, I just feel like I am dying and no one believes me. I had a work injury that resulted in a fusion in my neck and the chronic pain was unbelievable, that and all the stress that the whole nightmare brought me. No one believed me when I told them how horrible I felt, I think they thought it was just the pain meds maybe I even kind of thought that but I have backed way off them and still have all the symptoms. I have managed to get back to work though this summer I got so weak I could hardly walk up the hill, couldn't stay awake, it was a nightmare. I haven't worked in a couple of months. My pain management Dr. put me on Provigil and I must say it has changed my life. Has anyone else tried this for the blackouts and falling asleep problems? Anyway, thanks for this board, you have so much helpful information here! Hugs to all.........
  17. mapessd

    mapessd New Member

    I had my second test done , i e-mailed you but it came back undeliverable so let me know how to get a hold of you ok
  18. Judi

    Judi New Member

    I don`t know why it came back, maybe I left out something. here is my email address, I will be waiting to hear from you.
    God Bless You,
  19. Judi

    Judi New Member

    Hey, Hang in there, we all have felt like what you have just described. we have felt alone, & no one understands, I still believe someone has to be where we are to understand.
    I don`t remember if you said you have FM also. I was hurt at work several years ago & have had 5 surgeries so there is Chronic pain also. I just never have given into the pain, but FM & the sleep apnea can sure shut me down. it has taken some time for me to get the help that I have now. I have just prayed & believed that God would get me the help that I would need.
    There are a couple of people that mentioned that they are on that med. I haven`t been on it myself. so maybe Sbarb, will see this, or just send her something with her name in the message space, it seems like Sue or Lisa mentioned it also.
    I will be praying for you, stay on this board, there are so many wonderful people on here to give some good advice.
    God Bless You, I did put my email on the first one is wrong, the second one is right, if you want to email me for any reason.