Help dealing with do I stay awake??

Discussion in 'Fibromyalgia Main Forum' started by DazedAndSpacey, Nov 14, 2009.

  1. DazedAndSpacey

    DazedAndSpacey New Member

    I have Fibro and CFS. I went 1 1/2 years with no symptoms, so I guess I went into remission. Now everything is back in full force. I've never had pain or CFS so severe before. I've tried coffee to stay awake at work, but it seems to be helping less and less. Has anyone tried anything that works, at least 1/2 way? Coffee can tear up my stomach, so I really don't want to have more than 1 cup.
  2. spacee

    spacee Member

    If you can spend it, I would suggest trying NADH sold here. Keep it by your bed, if you can, and take it about 15 minutes before you have to get up. It helps on the cellular level.

    The other thing is ritalin. I printed out (CFS) where it said it was used experimentally with CFS and took it to my doc and he order it for me.

    That said. I can be so tired that I can take ritalin and NADH and still take a nap.

    Dr. David Bell, CFS researcher, does say that if you are very tired even ritalin won't keep you awake. I think he says that we are low on adrenaline and if we "run out', we have to sleep.

    Just some thoughts..

    As you see my moniker is Spacee and my "twin" here is Spacey...lots of us feeling that way.

  3. sascha

    sascha Member

    if you have cfids. i can't tolerate much caffeine. it must be so hard continuing to work with this condition.

    i strongly recommend that you switch to teas- green tea and kukicha tea, for example. they both have some caffeine and are fortifying (to me).

    i think caffeine works on the body like too much exertion does- just wipes it out- you get jangly, then you crash.

    anyway, explore the world of more benign teas. you might find them useful- i hope so- Sascha
  4. DazedAndSpacey

    DazedAndSpacey New Member

    Thanks for the help. I guess it's easy to feel hopeless.
  5. jasminetee

    jasminetee Member

    If you're new then Welcome. :)

    I resemble your name. lol I'm done in. After having an 11 year remission I've relapsed and developed severe FMS as well. I don't have to worry as much about staying awake because I'm now on Disability. What can ya do? We try. I couldn't handle coffee. Sometimes I eat chocolate if I really need a boost, if you can handle dark chocolate that's best, milk chocolate is all I can handle though. One small bite of dark chocolate sends me over the edge into Hell Land for the next 12 hours climbing the walls.

    I find juice with mineral water can sometimes help me stay up also be sure to eat protein with every meal, in my case now it has to be meat but before it could be nuts etc..

    Try eating small amounts every few hours.

    I understand just what you're dealing with.

  6. Juloo

    Juloo Member

    The only things that has helped me with this 100% is Xyrem for sleep. Well, that or having anesthesia (and I don't mean a la Michael Jackson -- I mean, I had ana outpatient procedure and 20 minutes of anesthesia, essentially deep sleep, gave me so much energy that I cleaned the whole house afterwards). But Xyrem is expensive, has risks, and requires a lot of patience to get the right dose. But it is the only thing that has made me get through the entire day without even thinking the word 'tired'.
  7. DazedAndSpacey

    DazedAndSpacey New Member

    I appreciate the suggestions. I actually have tried chocolate and protein. Where they used to give boosts, they don't now.

    So frustrating because I can't seem to make it through a full day of work without needing a nap. And I've tried Ambien to help me get a good night's rest and although it did help at one time (making me feel rested the next day) it, too has stopped.

    I went my whole life without drinking coffee, but in the last 2 or 3 years I had to start having a cup a day. It was the only thing that gave me some help.

    Again, thank you to everyone for your suggestions. I'll look into the others!
  8. Straightarrow

    Straightarrow New Member

    I completely sympathize with you. I have been known to sleep in my car at lunch, or nap at my desk when the students are rotated. Two weeks ago I started taking Provigil. I've noticed that a quarter of a pill taken twice a day (200 mg) does help. I've had to contend with headaches but I've noticed they aren't as strong. Might want to check into it. I had to get it pre approved by my insurance so it's good for a year.

  9. gapsych

    gapsych New Member

    I also take provigil and it is pretty effective. I only had the headaches when I first started on it. Every once in a while if it has been a week or more, I will get a slight headache.

    I tend to use it when I have to be up. However, my doctor wants me to take at least 50 mg. per day but I do not always do that. When I do, it helps even more. I take anywhere from 50-100 mgs. This will give me about six hours with my energy level at 80%. Many people take 200 mgs.

    Provigil was originally a medicine for narcolepsy and the armed services tested it to keep pilots awake but it was not as effective as regular stimulants.

    Have you had a sleep study? Sometimes insurance will not cover Provigil but if your doctor puts you have a sleep disorder, this helps. A sleep study can provide valuable information to help pin down what is going on with your sleep. Also a complete physical, which you may have already done.

    Provigil is the most expensive of my medications which is $40 with copay and there is no generic in the US.

    Caffeine can make me jittery but the Provigil does not. It just makes me feel half way normal and I not crash.

    It was actually the sleepiness that was my first symptom of FM.

    Good luck.


    ETA Provigil also does not effect my blood pressure. Let us know how you do.
    [This Message was Edited on 11/15/2009]
  10. heapsreal

    heapsreal New Member

    sleep is important. You need to have a few things for sleep up your sleeve to rotate between as tolerance to meds occurrs quickly. Your best bet is to combine a benzo(ambien, zopiclone, valium etc) with an antihistamine or a 5ht2a antagonst(trazadone, avanza, doxepine, periactin, phenergan). Benzo gets u to sleep and the other med keeps you asleep and helps u sleep deeper. Lyrica can also replace a benzo if needed, i have found lyrica with antihistamine has given me good deep sleep. Most of the 5ht2a antagonist have been shown to increase deep stage sleep. I would have a couple of combinations to rotate between to avoid tolerence and to reduce side effects.

    Run it past your doc first. But i have found the above helpful for me, not 100% but better then nothing. as for energy boost i second spacee, nadh helps abit, i have found a sublingual version better at 20mg, also a low dose zoloft like 1/4-1/2 tab has helped abit woth cognitive energy.

  11. astroherb

    astroherb New Member

    I have been where you are and many, many times thought I would need to quit my job. I am my sole support so not an easy option.

    Luckily, I found a health care professional that was knowlegeable and helpful. He ordered saliva adrenal and other tests. Lo and behold, my adrenal/DHEA balance were at #7, which is one step removed from adrenal failure.

    With treatment of that condition and others such as leaky gut, gluten intolerance, etc., I am now able to work all day almost like a normal person. I am still ultra fatigued by the weekend, but what an improvement. There is a website where you can get discounted saliva tests. If anyone is interested, let me know, and I will try to find it for you.

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