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    Still Exausted
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    Pixe5 posted:
    I have been on CPAP for a long time but I still feel terrible. I have fibromyalgia so the fatigue could be do to that, but at the same time I wonder if the sleep test missed something. Should I get another one done?
     
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    An_206918 responded:
    PLEASE! I hope someone can answer you quickly because I have the same problem. I have been on CPAP for 2 months now. I also have Fibromyalgia. I also have chronic nerve and disk pain from both spinal stenosis and CIDP, a rare autoimmune disease similar to MS. Both cause fatigue, as well, and to make things worse, I am in peri-menopause!

    My problem began out of the blue when I started falling asleep all the time. It got progressively worse until I was sleeping 75-90% of every day, only getting up to go to the bathroom or to eat or drink. Just before 2 months ago, I was even falling asleep on the toilet during sleep or while awake. I cracked my skull once and ran my car into 2 ditches. I was also falling alseepe before I could make it back to bed after peeing, causing myself to bump into walls.

    Through a local sleep clinic, I was diagnosed with mild OSA & CSA. After 2 CPAP vendors, 2 machines, and 2 masks, my sleep specialist has given up on me. He told me there is nothing else he can do for me. My treatment now is CPAP combined with Provigil 200 mg. But, the relief is not enough--a couple of hours later, I am falling asleep again. I never feel completely rested. The doc told me to go up to 2 pills a day, but even at 1.5 pills my heart races uncontrollably causing me to feel really sick. (Nuvigil caused high blood pressure.) I'm not sure if either the Provigil or the CPAP are working, or if only one is--but only a fraction, at best.

    If I dont get relief soon, I am afraid I will do something drastic. This has become urgent! This statement to the doctor only got me an appointment with a psychologist who deals with geriatric patients. I'm sorry, but a shrink isn't going to help me get better sleep!! I sleep fine—8 or 9 hours a night. I have good sleep hygiene, as well. I cry all the time because I am so tired and sleepy and cranky, and because I cannot do anything anymore. I cannot drive, work, do anything fun. I fall asleep every time I watch TV, read, anything. My Im falling aseep now too...so I'll sign off.

    Good luck Pixe5...I hope someone can help us soon!! What kind of doctor do you see when your sleep doctor dumps you?
     
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    Byroney_WebMD_Staff responded:
    Dear Pixe5 and Anon16193,

    I would recommend that both of you consider getting evaluated by a rheumatologist. I have fibromyalgia myself, and "lack of refreshing sleep" is one of the symptoms.

    In this article on Fibromyalgia Symptoms , it states "Next to pain and tender points, fatigue is a major complaint. Fatigue in fibromyalgia refers to a lingering tiredness that is more constant and limiting than what we would usually expect. Some patients complain of being tired even when they should feel rested, such as when they've had enough sleep." The article goes on to talk more about fatigue.

    The Fibromyalgia Community is a great place to go for support. If you haven't been there yet, I recommend checking it out. The moderator there, Caprice, also has fibro so she really understands.

    Also, for pain issues, a pain control specialist may be able to help, too. Always be sure to advocate for yourself. It may mean getting a second opinion (or even a third), but you're worth it and deserve the right treatment.

    Best wishes,

    Byroney
     
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    Pixe5 replied to Byroney_WebMD_Staff's response:
    Thamk you Byroney for your advice. Since you have fibromyalgia yourself, maybe you can share what works for you. My experience is that doctors don't know what to do for the fatigue. I am unwilling to use addictive stimulants that do nothing to solve the underlying problem anyway. Sleep medicines are out because I became addicted to them. Antidepressants don't seem to help either.
     
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    mariannej555 replied to An_206918's response:
    i identify. i hope you get a response because i need it also
     
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    An_206919 replied to Byroney_WebMD_Staff's response:
    Unfortunately, my rheumatologist, who has been my fibro doc for the better part of 15 years, states that it is emphatically not fibromyalgia causing this problem. And, he and my neurologist (treating my CIDP) each agree it is a sleep problem, namely sleep apnea. My sleep doctor has given up. No one has taken blood and run any tests, no one has tried oxygen supplements with my CPAP, which are 2 things I have discovered in my reasearch to be viable tools in diagnosing/treating my problem. I'm not sure where to go from here, but it is not related to fibro. This is much more than fatigue. I'm cracking my head on the floor and bumping into walls from falling asleep when I've had 8 hours sleep regularly for months, with a full mouth & nose CPAP. This is why I thought the Expert here might be able to shed some light on at least a type of doctor I should try next. Thanks for trying.
     
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    Byroney_WebMD_Staff replied to Pixe5's response:
    Dear Pixe5,

    What has worked for me is making goals for each day and staying as active as possible. I also make sure to keep myself mentally challenged (puzzles, crosswords, quizzes), even though at times I feel dumber than a doorknob.

    For the first few years, sometimes I felt like I was seriously faking alertness and intelligence. Then it really became better for me as I kept practicing. I know for some people with fibro, there can be very long peaks and valleys.

    On the other hand, learning limits and when to say "no" is a useful skill to have, too. I try not to schedule big events close to one another, so I'll have recovery time. Of course Sleep is a huge challenge. I am very careful about my Sleep Hygiene .

    Unfortunately, what works for me might not work for you at all. It seems to be a very unique illness (unique to each person).

    Hopefully someone else will share, too.

    Byroney
     
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    Byroney_WebMD_Staff replied to An_206919's response:
    Dear Anon_16193,

    It sounds like the weak part of your treatment team is your current sleep doctor who has "given up." I'd seek out a new expert, even if it means a longer drive, etc.

    No one needs an unsupportive doctor, and you deserve better. Hopefully you'll find a sleep expert who can work with your Reummy and Neuro to make a game plan for addressing your fatigue and bumping into walls.

    Keep us updated!

    Byroney
     
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    An_206920 replied to Byroney_WebMD_Staff's response:
    Thanks again Byroney.

    So far, the shrink the sleep doc sent me to will only see new patients who email him first. I have been waiting 3 days now for a reply. I really dont have a plan B. My hubby is trying to help me the best he can, but hard economy means layoffs and his work duties have doubled because of it. (Thank God he still has a job! He has to take time off 2 times a week, minimum, to drive me to docs and everywhere.)

    On top of all this, his dad is in 4th to 5th stage kidney failure, his mom has never driven in her life -- dad can no longer drive. My hubby has his hands full taking care of me and his family. (And, they live 45 minutes away from us.) As if this isnt enough, my hubby's bro died 3 yrs ago, leaving a now 15 year old nephew who lives with my hubby's and his bro's parents--the kid's grandparents--who grandpa has the kidney issue and grandma cannot drive anwhere. He looks up to his uncle--my hubby--who is his only male mentor who can do physical things with him.

    My husband is stressed to the breaking point, as am I. He says he no longer knows what else he can do for me. I depend totally on him since my family has all passed and my best lifelong friend has turned her back on me, and another lives 1000 miles away.

    I am so depressed and anxious that I have lost all ability to function. I cannot seem to focus (ADD), but when I do start doing something, I find I obsess over the details and never get the job done (OCD). I find it hard to take care of myself, medically and emotionally and my heigine has gone downhill since the sleep problem came about and the depression. I just want the old me back--soon!

    Oh well, thanks for listening. God, rereading this back sounds so pathetic. Now yall know why this is anonymous. This did not used to be me 6 months ago. Sorry to vent on this board. I just want some restful sleep.
     
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    Byroney_WebMD_Staff replied to An_206920's response:
    Dear Anon_16193,

    I am sorry you're still struggling, but this is the perfect place to vent whether you choose the anonymous option or not. We all have our challenges, and some of us--like you and your family--have those challenges piled high and deep.

    I hope you get that e-mail response shortly. If not, a polite follow-up e-mail may be needed. Or perhaps call the doctor's office and say something like, 'I was worried my e-mail to Dr. Xxxxx might have been caught in the spam filter since it's been xxxx days without a reply.'

    In the meantime, why not try setting small goals for yourself. Something like 'I will shower today' or 'I will sort the bills for my husband' or whatever you think might help you feel that you're accomplishing things while you wait.

    Write back when you have a chance,

    Byroney
     
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    beenbetterb4 replied to An_206918's response:
    I have sleep apnea and narcolepsy and take 400 mg of provigil first thing in the am to wake me up. Provigil does cause my pulse to race and sometimes I speed a little bit from it but it's the only medicine I can take to stay alert enough to drive etc...I tried nuvigil and that did nothing for me
     
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    beenbetterb4 replied to Pixe5's response:
    I have tried many medications for my fibromyalgia and the only one that works for me is cymbalta, however it effectd my liver count
     
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    beenbetterb4 replied to An_206919's response:
    try seeong a pulminary specialist that specializes in sleep disorders. your cpap machine might not be set at a high enough level


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