CPAP for Apnea improves FM symptoms ...a MIRACLE!!!!!!!!!!!!!

Discussion in 'Fibromyalgia Main Forum' started by CAAnnieB, Sep 26, 2005.

  1. CAAnnieB

    CAAnnieB New Member

    Hi all,

    Well, who would have thought that it would take me 12 years of suffering with this Fibro... & MANY Dr's & treatments before I was finally diagnosed with Sleep Apnea / Chronic Upper Airway Resistance Syndrome!!!

    And now for the GREAT NEWS! Since starting on CPAP machine treatment; my pain levels have DRAMATICALLY dropped, my energy is up & my stomach is even feeling better!!! (Chronic stomach pain from FM- related Gastritis.)My nighttime teeth grinding has even improved. These improvements happened immediately! I am a NEW WOMAN thanks to Oxygen & uninterupted sleep!!!

    I would encourage you guys to consider having a sleep study. Check out websites on sleep studies & Sleep Apnea symptoms. If you have any symptoms; get your Dr to refer you to a Sleep Clinic A.S.A.P. I never would have guessed that my sleep was so disordered...I didn't have insomnia...didn't recall waking up a lot during the night...I'm not overweight...Don't smoke or drink...

    However...I did snore/ talk in my sleep, had severe teeth grinding at night/ TMJ pain, would wake up with headaches/ migraines (oxygen deprivation!), would startle myself awake with a snortle during daytime naps, had daytime sleepiness, etc, etc...

    When filling out the Sleep Questionaire before my consultation ; I was amazed at how many FM-related symptoms were associated with sleep disorders.

    Some of you may recall how I felt like I "flunked" my sleep tests! I had such a difficult time falling & staying asleep at the overnight studies! (Twice) Amazingly, they were able to see that I had periods of Apnea & other problems even though the nights did not represent typical sleep for me.

    I feel SO much better now! This healing is truly miraculous! I have experienced more relief from using the CPAP machine than ANY drug, herb, or treatment I have tried over the years. (And believe me, I've tried A LOT!!!)

    Just wanted to share my good news & to encourage others to consider having a Sleep Study if you suspect you may have sleep problems.

    I may still have the Fibro; but I am guessing that the MAJORITY of the symptoms I have sufferred with for years are due to the Apnea & disordered sleep. I now have hope of living a more active & painfree life!

    And to think that a few weeks ago, a PhD/ bigwig Dr. at a major San Francisco hospital told me that my stomach & bowel problems were FM/ stress related...And that I should take Antidepressants & undergo longterm Psychotherapy to work out my fear/ stress issues that are causing the Fibro!!!

    No thanks! I'll just faithfully use my CPAP machine!

    Blessings,

    Annie B.
    [This Message was Edited on 09/26/2005]
    [This Message was Edited on 09/27/2005]
  2. cjcookie

    cjcookie New Member

    I think everyone with FM should be checked. Mine didn't help greatly with pain, but I may be in the minority. I know that it is important to know if you have the problem and that not using the machine if you need it can cause serious problems. Also, if you have this and have surgery, it can be very bad if it is undiagnosed.
  3. CAAnnieB

    CAAnnieB New Member

    Thanks for your reply!

    I'm so sorry that your CPAP did not help with your pain. You are so right about Apnea being dangerous if it isn't diagnosed!

    At the hospital where I volunteer; a woman who works at the Nurses' Station desk prompted me to have the sleep study done. She formerly worked as a Sleep Tech at the clinic I went to.

    She said it was very common to have people with FM/ CFIDS symptoms come in for studies...and when they got put on the CPAP's, they'd come back for their follow-up appointments ecstatic! Their lives were dramatically changed for the better!

    When I had my consult appointment; the P.A. told me that the Apnea could explain my upper body pain, fatigue, & even stomach problems! She was right!

    I hope that you find an effective treatment to lesson your symptoms SOON. We all suffer for way too long...

    Annie B.
  4. Mikie

    Mikie Moderator

    I am sooooo happy for you. Congratulations!

    Love, Mikie
  5. rbecca47

    rbecca47 New Member

    i am so happy that the cpap is working for you. i have had no luck with mine. i can hardly stand to use it. i feel like i can't breath. it's like my longs get to full of air and can't exhale. doc thought it would work, did sleep study says i have sleep apena. but i am ashmatic, and i really belief it is because of that it is not working. i give you a thumbs up, have a friend that loves her cpap. i guess it depends on the person. Very Happy for you. "hugs to you"
    becca
  6. CAAnnieB

    CAAnnieB New Member

    Just a thought for Becca...

    The machine I am using is an auto-adjusting one...It is set to go between 5 & 15 on the pressure setting, depending upon what my body is doing.

    I have noticed that when I'm falling asleep & waking up in the A.M. the setting is between 7 & 10...just a quiet swish swish noise. One day I was taking an afternoon snooze with the CPAP & when I woke up suddenly; the setting was at 13!!! My husband tells me the machine gets louder (higher pressure setting) during the night.

    Your body varies in demand throughout the night for the pressure to open up your airway. Maybe your machine is set too high? Or maybe it depends upon how your Asthma is going?

    Is yours an auto adjusting machine? If not; you might want to request one. To me; it makes way more sense than having it set at the same setting all night long. My bro-in-law's machine is set at one pressure. (8) He has reaped benefits from his too...He used to fall asleep all the time, even at work!

    I hope that maybe you can try something different. I am just amazed at what a difference this had made in my life! And I've only been using my CPAP for alittle over a week!

    Hugs,

    Annie
  7. Juloo

    Juloo Member

    My husband has been on CPAP for several years. I remember how weird it was the first night. He was SO silent (after a decade of lawnmower-in-my-ear each night) that I got up to check that he was breathing...just like a newborn baby!

    I've had two sleep studies myself, although they were three and four years ago, about. Although my husband says I snore, the test did not agree. I had lousy sleep the first night, but the doctor who did the reading somehow missed the classes dealing with the 75-other-sleep-problems besides UARS and apneas. I argued my way into a second sleep study (they did it for free!), but by that time I'd started on some supplements through an alternative doc and my stages had evened out.

    I still wish I would have been diagnosed w/sleep apnea. At least I could explain it to people!

    I'm going to pass on your info about the auto-adjusting machine to my husband. Sounds like something he should look into!
  8. Countrymom

    Countrymom New Member

    My mom has one and her quality of life has improved so much. I am so happy for you!
    Dani
  9. jaltair

    jaltair New Member

    I just got a call from the hospital with a message left, and I'm suppose to call back tomorrow and set up my sleep study. I hope that mine goes as well and that perhaps a "real reason" will be found for my problems, that would be wonderful! I have all the same symptoms that you described. I won't worry so much about not getting or giving the techs a "good sample" of my sleep either after learning that you had the same worry but the sampling was enough. I think that was my biggest concern.

    I've been resistent to having a sleep study, maybe now I'll wish that I would have had one years back! Thanks for sharing.

    Warm wishes, Jeannette
  10. nanswajo

    nanswajo New Member

    I'm so glad it helped you, Annie. I started CPAP about 3 years ago. I also was not overweight, but a sleep study showed moderate apnea. I have a machine set at 12. I tried to get an auto adjusting one approved by my insurance, but they would not.

    I had the special surgery for sleep apnea hoping I could get off the machine, but, alas, it did not make much difference (just a little less pressure needed). It was the most painful thing that has ever happened to me and I don't reccomend it to anyone.

    I don't have oxygen with my CPAP. I wonder why some do and some don't. I see my neurologist for sleep soon and I hope he can help me because I have only gotten worse.

    Hearing your success gives me hope.

    Best, Nancy
  11. helpeachother

    helpeachother New Member

    Hi becca, sorry about your exhaustion and lung pressure with the CPAP.

    I used to use a CPAP, then had this throat/uvula operation which did othing good, however, it caused the same situation that you are describing when I used the CPAP (basically i couldnt use it anymore.

    Sooo, I got a BIPAP machine which is exactly the same as the CPAP, except that it has two pressure settings, ONE for the INHALE (higer pressure) and a lower pressure for the exhalation. The machine "senses" when the inhales/exhales are happening and instantly adjusts, so you DONT have to fight with the pressure to exhale.

    Been using mine for 5 years now and absolutely cannot sleep without it. Good Luck. Peace
  12. matthewson

    matthewson New Member

    bump to the first page as this is valuable information!
  13. CAAnnieB

    CAAnnieB New Member

  14. tilla

    tilla New Member

    I was so excited when I found out I was to have a sleep study done for sleep apnea. I was put on oxygen at night until I was able to have the test. I felt so much better just on the oxygen - no more pain. The sleep study showed it do not have sleep apnea but I have not found out the other results yet. I am so disappointed, I thought this was the answer I needed. I asked for the oxygen machine back.

    Tilla
  15. tilla

    tilla New Member

    please bump
  16. abbylee

    abbylee New Member

    Annie - I didn't have sleep apnea, rather, I had alpha intrusion, and was given Xyrem. Now, I, too, have much less pain, more mobility, no flares (except during hurricanes), and I don't fall asleep during the day anymore.

    Since Nov., 2003, I've been preaching "sleep study" to everyone who has fms. (If you pull up my posts, you'll see that I sound like a broken record when it comes to sleep studies.)

    I'm not cured, but I'm so much better than I was, and you, too, are better!!

    Thanks for sharing your results!! I hope others will read your post and go for a sleep study!!

    abbylee

  17. CAAnnieB

    CAAnnieB New Member

    I'm jumping on Abbylee's bandwagon & preaching "Sleep Studies" for most of us! If anything; it will rule out that your symptoms are related to sleep disorders. (Which most of us have for one reason or another) The best case scenario is that you will be accurately diagnosed with a sleep disorder(s) & will be on the road to MUCH better health due to proper treatment.

    Nancy:
    I'm SO sorry that you are homebound. How terribly frustrating for you, I'm sure. I agree that "someone more powerful than you and I " can work through each of us (even on this message board!) to guide & direct our lives...

    Go get that sleep study! It just might be the answer you've been waiting for!

    Hugs & Blessings back to you. :)

    Jeannette:

    Good luck with your study! I thought that I had the worst sleep studies anyone could possibly have! At the first one, I was unable to fall asleep on my back (which is when I snore & snortle)...I fell asleep briefly 3 times, but was awake for much of the night. I told them afterwards that it was not a good representation of a usual night for me. So, they scheduled me for a second study...

    That study was even worse! I never fell into a deep sleep the entire night! At least in the first study; I dreamed! When they came in halfway through the night to put me on the CPAP; I really woke up & never fell asleep until the study ended at 6 A.M.!

    I was devastated! I thought there was NO way they'd be able to tell anything from those studies! But they could...Even in very light sleep, I had apnea episodes. My oxygen level went down...They could tell the odd pattern of sleep stages & what was happening during those stages...They even got valuable info from a period (of hours) of light sleep in my 2nd study...I thought I was completely awake the whole nite!

    So don't worry too much! Just try to relax as best as possible & I'm sure it will go just fine. Let us know what happens!

    Nanswajo Nancy:

    I don't have O2 hooked up to my machine either. If you aren't feeling like you are seeing enough improvement; I'd go back to the sleep clinic for a follow-up appointment. There are ways they can fine-tune your treatment. Hope you can see more improvement SOON!

    Thanks for the bumps & interest. I see so many posts about sleep issues here. Obviously, it's a HUGE component of our symptomology. If you even suspect you might have a sleep problem...RUN (or hobble, depending on your energy/ pain level!) to your nearest Sleep Clinic! It could REALLY change your life!

    Blessings,
    Annie B.
  18. elastigirl

    elastigirl New Member

    I'm curious about alpha intrusion? What is it? I wake up several time during the night. I'm wide awake. I could get up and start my day. But I force myself to go back to sleep because my body needs it. Is this alpha intrusion?
  19. JLH

    JLH New Member

    I have Obstructive Sleep Apnea and have slept with a CPAP machine, with oxygen plugged into it, for quite a few years now.

    My sleep apnea was causing me not to sleep well in addition to congestive heart failure.

    Sleeping with the CPAP has improved my sleep and lessened my occurrences of congestive heart failure; however, it has NOT HELPED my fibro symptoms of pain and severe fatigue.

    For those of you where it has helped your FM, I am happy for you.

    Janet
  20. CAAnnieB

    CAAnnieB New Member

    I'm honored to be your "earth angel"! Bless you for saying I am. We get so disabled by these DD's...I'm afraid that my self worth often feels very low. Without my old job to give me that feeling of really helping people, I get to forgetting that God can still use me...just in new & &different ways!

    To answer your questions...

    "the headaches you had ---- were they just terrible ??? Not true migraines - just always there, enough to make you super dizzy and nauseated ?? And the clenching --- it is driving me crazy :("

    I did not wake up with headaches every night. I would, however, develop classic Migraines in the middle of the night at times. Usually, I'd incorporate the headache into my dreaming & not fully wake up. By the time I did wake up in the A.M.; I'd have a full blown Migraine! Not a pleasant way to begin a day!!!

    I use Imitrex for my Migraines (currently I'm at an alltime low of Migraines...about 3 per month) The Imitrex injections always get rid of my headaches within 15 minutes. I'm blessed to have found a med that works quickly & efficiently. I really don't consider the Migraines to be a biggie anymore. If I didn't treat my Migraines; I'd be barfing & incapacitated. I remember those old days before Imitrex...whole days would be wasted.

    Waking with headaches can be a sign of Sleep Apnea, so I'm assuming that that's what was causing my middle of the nite headaches.

    Clenching...A problem I have too at nighttime. I chomp & grind. I had a special tooth guard made for my top teeth. These guards do not stop the Bruxism behavior...they DO protect your teeth from damage. I have found the Bruxism VERY hard to treat. I'm pretty sure that since using the CPAP, that too has improved! My jaws are not as sore & I don't wake up with terrible ear pain.

    "And the upper digestive symptoms you had ---- it is one of the first symptoms listed under Upper Airway Resistance Syndrome .........."

    The P.A. I saw at the Sleep Clinic told me my Gastro problems migt improve after using the CPAP! Never would've believed it, but by golly I'm actually going days without my Prevacid! Tonight, I am having tummy/ intestinal probs, but in general it's been better.

    Many soft Fibro hugs to you,
    Annie B.