New Sleep Disorder Related to Fibro

Discussion in 'Fibromyalgia Main Forum' started by judylhurst, Dec 25, 2005.

  1. judylhurst

    judylhurst New Member

    I read about a new sleep disorder that is particular to Fibro patients. It is called UARS-Upper Airway Resistance Syndrome. The article states that even normal CPAP isn't effective and it stated that CPAP patients should be offered temporomandibular advancement devices to help alleviate the drawbacks of CPAP. I am progressively becoming worse with all my symptoms. I started using the CPAP in January of 05 and in March had a wreck because I fell asleep at the wheel. It is to the point I feel hopeless. I am a Kg teacher and I was so tired one day a few weeks ago that I layed my head down on my desk while the children were at lunch. My assistant brought them back and taught them the rest of the day. I slept through until the end of the day at 3:00. I lose things all the time in my class. My assistant has to search for it or my children will see where I layed it and tell me. It is really getting so embarassing. I have fatigue along with brain fog, irritable bowel syndrome, sleep apnea, pain, stiffness, restless legs, and a doctor that acts like I am totally crazy everytime I go to see him. My file is so big they almost have to carry it with a dolly. I feel like my quality of life is nil. It is getting to the point that I feel I have to explain my illness everytime I do something stupid. Even after writing appointments down on calendars, I still forget about them. Is there any relief out there for this feeling. I feel like I am going crazy and am about to have a nervous breakdown. I take Cymbalta, Provigil, use the CPAP machine, take frequent massages, and still have no relief. I am up right now at 12:16 a.m. because of insomnia. I don't know how much longer I can take this.
  2. lenasvn

    lenasvn New Member

    I am so sorry about the struggles you go thru. Only we know why sleep deprivation is used as a successful torture method in war! You MUST talk to your physician about this. the sleep machine might be doing some if you DO go to sleep, but you need help GOING to sleep.

    I am tired myself and foggy, Many hugs to you.
  3. CAAnnieB

    CAAnnieB New Member

    Hi there,

    You & I share some similar symptoms/ diagnoses.I also have FM, IBS, sleep apnea, & tons of pain issues. I was diagnosed with UARS & Moderate Sleep Apnea in September. I've been using a CPAP since diagnosis. I'm interested in why the article you read stated that CPAP does not treat the UARS. According to my literature I received at the Sleep Clinic; it does. Is it that OUR UARS is different somehow from the typical UARS? What is the tempomandibular advancement device? I also have TMJ pain & sleeping with a chin strap to keep my mouth closed with the CPAP makes it worse.

    I felt GREAT for 2 weeks after starting CPAP...then it's been downhill ever since! I was disappointed, as I thought that the CPAP was really going to improve my quality of life with the FM.

    I'm so sorry about your insomnia. Lack of sleep just makes everything SO much worse! It probably is making your brain fog even worse.How frustrating for you not to be able to function in your teaching job. That must be discouraging.

    If your Dr. feels you are crazy; I'd say it's time to find a new Dr! Keep searching & you will find someone who takes your problems seriously & who is willing to work with you on improving your sleep, etc.

    Best wishes. I hope the new year brings better health for you! (& all of us)

    Blessings & Hugs,
    Annie

    P.S. I just checked out your profile & saw that you are new to the board! Welcome! This is an awesome place![This Message was Edited on 12/25/2005]
  4. acesk

    acesk New Member

    There is a one page article on sleep apnea and snoring and has some great ideas I hadn't heard of.

    Sue in Florida
  5. elsa

    elsa New Member

    Did they find any problems with alpha intrusion, unsatisfactory deep wave sleep or irregular REM sleep stage patterns?

    Reason I asked is many have sleep apnea, (and perhaps this added problem you mentioned), but do not have fibro. My Dad comes to mind in this .... His apnea is horrible. I'm going to tell him about this latest info..

    Is it a possibility that while your sleep specialist readily recognized your sleep apnea, he went no further then that? Did he know you suffer from FMS? Was he trained to interpret the brain wave activities common in FM patients?

    The daytime symptoms sound like you do have alpha intrusion. No good sleep comes from that ... The cognitive / memory problems and high pain levels are influenced as a result of insufficient deep wave sleep stage and possibly REM stage sleep.

    Specific sleep medications address these fibro sleep disorders. They may help you regain some control over your life. Xyrem, lunesta, ambien, etc. plus CPAP machine may make a big difference.

    I also have provigil in my arsenol .... without getting improved sleep quality, it's effectiveness would be quite limited in helping me to function during the daytime. I take lunesta at bedtime ... either 1 or 2mgs depending on the type day I had. I started turning the corner to remission early last June after addressing this aspect of our illness.

    Good luck to you ... I know how frustrating and scary it is. Sending positive thoughts your way.

    Elsa
  6. Musica

    Musica New Member

    I'm very interested in this, Judy. I have diagnosed with severe sleep apnea and have been using a CPAP. I would certainly like to know if it isn't working! Is UARS close enough to apnea that the two would be confused and sleep apnea misdiagnosed? All my sleep doc goes on now is how much I use the CPAP per night. He assumes if I use it 4 hours or more per night, I am no longer at risk of heart failure.
  7. judylhurst

    judylhurst New Member

    Christian Guilleminault, B.D., Ph.D., discovered a new sleep disorder that wasn't the same as apnea. Symptoms are: very light sleep, sever daytime fatigue, cognitive problems, sleep onset insomnia, alpha-delta sleep(awake-like brain waves)headaches,stiffness, pain, and IBS caused by restriction in airways interfering with deep sleep. A doctor Avram Gold, MD did further research and found out that targeting the different kinds of sleep could produce a beneficial impact on pain and other related symptoms of FM. He stated that combining nasal CPAP eith medications such as Xyrem and Lyrica would enhance slow wave sleep. His studies confirmed 90%+ prevalence of UARS in FMS patients. Another sleep researcher Harvey Moldofsky, M.D., found that FMS patients have a specific alpha-wave intrusion known as phasic alpha which they later renamed UARS Upper Airway Resistance Syndrome. He stated two-thirds of patients with FMS have allergic rhinitis with nasal congestion and three-fourths are prone to tension headaches (the band that affixes the mask exacerbates this symptom). Rarely do sleep labs even bother to look for UARS and just assume FMS are assumed to have a generic form of insomnia.He found that Ambien and Lunesta did not significantly improve daytime fatigue. I do not completely understand the temporomandibular advancement device except that it has something to do with the lower jaw. I don't know if it is the chin strap that keeps the mouth closed so the CPAP can do a better job or what. I just remember hearing the lady at the sleep lab tell me that I would wake up feeling better than I could ever remember. It did work o.k. for a few weeks but then, I feel like I am back at square one. I am still very tired during the day. But yet, I can't go to sleep at night. It is now 2:49 a.m. I am planning to do some more research on the internet and call my insurance to see if they know of any sleep labs or doctors that know more about our problem. Hang in there guys, with more awareness things have got to get better.
  8. sues1

    sues1 New Member

    The machines need adjustments at times. If I notice a difference in my husband and he goes in for a night at the sleep ctr. they always find that he needs the machine adjusted. He is then back to his old self.

    A wonderful invention for the time being!
  9. judylhurst

    judylhurst New Member

    I have had to fight my doctor since last March after I had my wreck. He just puts me on a different medication. I finally convinced him to get another test scheduled. Right now my pressure is at 11. I feel like I am not feeling anything with it at night. In the beginning I had to use the button that started out slow and worked up to the pressure. Now I can just turn it directly on to the full pressure and I feel no difference. I am going to have many more questions this time. Last time I felt very ignorant during the test, but this time will be different. Thanks for your support
  10. skierchik

    skierchik New Member

    So sorry to hear of your symptoms. All I can do is tell you what worked for me and we have alot of the same issues. I can't take any pharmaceutical drugs anymore. They never seemed to help and they added to my toxic loa making me feel worse. However, the exception is insulin for Type 1 diabetes and Levoxyl for thyroid disorder called Hashimoto's.

    I suggest getting with a naturopath. Homeopathic remedies have helped me alot. They work in a way that helps your body fix itself. I also have cfs/fm and I found that natural supplements, accupuncture (find a very experienced one preferrably chinese) have helped the healing process tremendously.

    Lighten your stress load. It sounds like you may need to stop working for a while...it doesn't have to be permanent though.

    Detoxing in a slow, safe way was the BIG thing for me. I invested in a Ionic Foot Detox machine by Body Cleanse and I use this once a week. It puts negative ions in the body via the 2000 big pores in your feet and binds with the toxins to pull them out. You must take minerals on a daily basis while on the program!! I can't go into all the details but if you want more info post and I will respond. Someone in your area is probably offering to do this. It shouldn't cost more than $35.00 per session. I do this for my friends and their friends, but, for much less.

    Another option along this line would be ionic foot patches. You stick them to your feet while you sleep (hopefully) and by the way as you lighten your toxic load you will sleep better, that's a benefit of the ionic treatments. I can give you the website I use if you're allowed to do that here, if not I can email you if you want.

    I also have been diagnosed with sleep apnea (it's not due to weight but anxiety based) and did a sleep study. Their answer was "Valium" here in Denver. There are different types of sleep apnea, but mine was a situation where I would stop breathing and therefore wake up. I walked out and never spoke to another doctor about it. Can't believe these idiot's wanted to give me valium! I did my own research and have had good control ever since. In addition for getting a good nights sleep, I use "Gaba Calm" losenges. It provides what we already have in our brains, we just don't have enough of this. Buy from Resource Naturals. I also take one Kava capsule, but not every night. Despite what people say, it is safe to take in small dosages. You have to really abuse it for it to "harm" your liver, if you look at the research. Ear plugs are a great way to get deeper sleep. And most importantly, eat a healthy, balanced diet (complex carbs provide good seratonin).

    Some people use Melatonin, but it's a hormone so research it first. I like to eat Bing Cherries instead(the kind you use in pies)before bed which produces Melatonin naturally in the body. There's new research on this too.

    Let me know if I can provide you with any additional info??

    Good luck and hang in there!

    skierchik

  11. judylhurst

    judylhurst New Member

    It is so great to talk to people that know and feel what I feel.
  12. judylhurst

    judylhurst New Member

    This is the chin strap to keep your mouth closed and also the mold for your teeth to keep them from grinding. Does your CPAP machine have the hose that divides so that an apparatus goes into each nostril directly? I am going for a re-eval next week and they said they have that particular apparatus that they will prescribe for me. The other mask that just sends the the air haphazardly doesn't give me the consentrated air quality I need.
  13. judylhurst

    judylhurst New Member

    Thanks for the info. I'll give the Bing Cherries a try.
  14. judylhurst

    judylhurst New Member

    It is finally great to get some consolation from people that truly care.
  15. momwinterwhite

    momwinterwhite New Member

    Please persist on your need for a compassionate doctor.
    It really does make all the diffrence in the world.
    It will be one of the most important investments
    that you can make for yourself.This terriable
    condition that we share is chronic and we need
    the support of understanding
    friends coworkers and family but espically doctors.
    best wishes Momwinterwhite.
  16. bandesmom

    bandesmom New Member

    Hi Judy,

    I am not familiar with the syndrome that you mentioned but I also suffer from insominia. It can be horrible, trying to function on 2 hours of sleep a night is no fun. My doctor gave me some Lunesta 3mg, which helped but made me sedate sometimes and only seemed to work if I forced myself to clear my mind. I would sometimes wake up in the morning extremely foggy. I decided to cut the dosage in half to 1.5mg and added some natural Melatonin 3mg and it has worked great. I still wake up at night sometimes multiple times but I am able to fall right back to sleep, unlike before. By cutting the dose in half I didn't feel the sedation or the fogginess in the morning. Maybe discuss this with your doctor. If you doctor makes you feel worse about yourself or your symptoms maybe finding a more compassionate doctor would be in order. Good Luck!!

  17. judylhurst

    judylhurst New Member

    How do you go about finding a doctor that knows about fibro. All the doctors I hear about that know about the syndrome are in California or Nevada? I live in Tennessee
  18. judylhurst

    judylhurst New Member

    That and Lunesta sound like it might work, but I want to know why I am not being able to sleep and what is causing the problem. I am very sensitive to any hormones and I've heard that Melatoran is a hormone. I will ask my GYN. She took me off all hormones in the middle of my menopause because I was showing signs of hyperplasia. Sometimes I think I can't win for loosing.
  19. grayfryer

    grayfryer New Member

    when chinstrap was mentioned to keep jaw closed its confirmed of how ive started my nights to get to sleep i lay on my front chin stretched out so its pushing down on the bed with forehead up against pillow to better the air flow i guess, since noticed less fatigue and pain during daytime, it will feel uncomfortable for a while as you relax you fall asleep quickly, worth perceferring with ,put arms down side like standing to attention is more effective eventually!!!!