Wake Me for Bed

I am tired of the fatigue.
I just finished complaining about sleeplessness, and now I am kvetching about the many moments when I can barely keep my eyes open each day. It I s no wonder I am getting crazy. Waking up exhausted, after a long sleep or none, makes me wonder why I even bother. Just imagine how productive we could be if we just kept going instead of pausing to rest.
The NMSS says that 80 percent of MS patients live with chronic fatigue. Gawd, it is debilitating. I cannot nap. I do not possess that skill. But stick me in front of a computer, and my first trip into outer space comes before lunch. I am legally blind, and I think I picked the wrong line of work. Squinting endlessly at a computer screen is a soporific. I am certain the same could be said for a thousand other jobs. I have read that constant fatigue is the single most common complaint with MS. I believe it also drives people from the workforce.
Anybody ever try popping Provigil? The FDA approved the drug to treat narcolepsy and help workers dealing with shift changes. The drug has been widely prescribed for MS induced fatigue. I found Provigil to be an expensive placebo, though others say it works for them. Whatever gets you through the day.
I see no solution on this one. I pretty much have stopped complaining. If one of the secrets to a reasonably happy life is to choose your battles carefully, I have enough larger issues. Some things just are what they are. If an occasional really good sleep does not fuel life the next day, then I say, do not waste time and psychic energy wringing hands. Live with it.
I just need to learn a different skill that does not place such a strain my eyes. How about operating heavy machinery? That may be the ticket.

62 Responses to Wake Me for Bed

  1. Amy Corcoran-Hunt March 14, 2015 at 3:37 pm #

    Since I’ve gone gluten-free, Paleo, vegetable and fruit heavy, I’ve been way more alert. Used to crash mid afternoon, don’t anymore. If you haven’t tried it, you might consider. Could just be me.

    • michael March 17, 2015 at 11:01 am #

      Hi Amy, great advice, my wife ( with ms) and me (without) have been Paleo for two years mostly and her improvement in function has been noticable. It is a commitment to change, but considering nothing else has worked well worth the effort. We also do neurological electrical stimulation and by doing so have been able to restore some function to her left leg, a enabling her to remain out of a wheelchair. I saw a TEDTalk presentation from Dr. Terry Wahls, Google her after and found an incredible wealth of information.

      • Amy Corcoran-Hunt March 17, 2015 at 1:42 pm #

        Hi Michael: I’m a neuromuscular stimulation person too. Started after the wheelchair but am getting stronger at a minimum. Saw Wahls and got her book. Got nothing else to do, PPMS, so why not try this? Good luck to your family.

      • Jan March 17, 2015 at 2:40 pm #

        Hi Michael, Dr. Terry Wahls works at my alma mater. I spoke with her briefly last year. (Her clinical study was at the patients’ expenses, so I could not fly in a number of times to do that).

        I’ve been about at to her Paleo 1 for many years, likely Paleo 2, but not level 3. For me, that type of eating does seem to help. Her “Minding My Mitochondria” book was good; “The Walhs Protocol” even better, more succinct. At a minimum, it all does help with the middle-age gut (when I admit to being near that in age). I also take digestive enzymes. Have never tried e-stim. My husband and I used to drink LOTS of milk, but ever since he suggested giving it up many years ago, we don’t have colds or congestion–something to all of that, I personally think.

        Good for you for handling the diet together. (My husband and I have both changed our eating habits, though in my case I’m trying to be more purposeful for health reasons).

      • michael March 18, 2015 at 8:46 am #

        Thank you, Amy, so far so good, and doing the protocol gives the day purpose and direction, and most importantly the sense that we are in at least a little bit of control over the direction of the disease. Best of luck to you as well!

      • michael March 18, 2015 at 8:48 am #

        Thanks Jan, giving up milk and replacing it with a nice grass-fed steak an a single malt just makes sense! Stay strong and keep getting better.

  2. Jan March 14, 2015 at 4:55 pm #

    Oh, great… Richard in Iowa operating a combine.

    (If you visit your alma mater, be sure to go to Stam Chocolate in Des Moines–best stuff this side of the pond. I’ll take some “mocha sticks,” please. We’re too far away now to go).

    Yes, we have to live with what we have to live with (and fight what we can).

    I love that you make me go to my dictionary: Luddite, soporific. (Good humbling exercise in realizing how much I still have to learn).

    Seriously, though we have much to endure this is an awesome place to let it out, and to others who truly understand. Thanks!

    • Richard M. Cohen March 14, 2015 at 7:22 pm #

      Jan-

      Never stop learning. Nothing can take that from you.

      R.

  3. Gala March 14, 2015 at 5:06 pm #

    I am taking Amantadine 100mg 2 tabs in am. Main purpose of this drug different, but side effect work for fatigue., I would not say it is magic, but some help

    • Joan Z March 14, 2015 at 6:17 pm #

      Your weariness is obvious, understandable, and yes, maddening. I’m sorry. And I get it. I take Tizanidine for stiffness, it knocks me out, so I finally just accepted a few less hours when I feel alive. I also reward myself with strong coffee just to get going again. Then I just give up and have a couple of glasses of wine at the end of the day. I read all the advice telling us to exercise for so many minutes a day (can’t since my legs checked out), avoid too much alcohol (too bad), get a good 8 hours of sleep (I wish!). I wonder if those dispensing all that advice get that some us aren’t being non-compliant, we simply just CAN’T. So who the hell knows just what is going to kill me. I’m too tired to care!

    • Richard M. Cohen March 14, 2015 at 7:23 pm #

      Great.

      R.

  4. Josh March 14, 2015 at 6:22 pm #

    This might sound strange, but my best luck has been with Ritalin. Taken in the AM and at lunch, it helps with the energy a little, but a LOT with my focus.
    I too was just staring at things. This isn’t a fix, but it helps me. And since my last dose is at noon, it doesn’t make my bad sleep worse.

    • Richard M. Cohen March 14, 2015 at 7:24 pm #

      Thanks. I will inquiore.

      R.

  5. MB March 14, 2015 at 7:04 pm #

    if it weren’t for Provigil, I could no longer work. I take half a pill in the morning and it lasts the whole day. Not only am I awake, but I feel it helps with my focus, too.

    The battle I fight daily is physical—bad arm, bad leg. “I’ll see your sleeplessness and raise you a wonky hand.” You’ll probably play the vision card which trumps my bad leg. We probably shouldn’t travel to Vegas together.

    Another battle that’s being waged against me is the extra weight I’ve gained brought on by lack of movement. It’s not a vanity issue. It was difficult enough to move around without the extra pounds, but now even getting up from a chair feels like I have a 5# rump roast strapped to my…rump. A friend said I should consider giving up chips and whiskey. Some friend. As Charleton Heston once said, “I’ll give you my (chips and whiskey) when you pry them from my cold dead hands,” or something like that.

    MS is BS.

    • Richard M. Cohen March 14, 2015 at 7:28 pm #

      Right. We give up enough. Screw ’em.

      R.

  6. michael March 14, 2015 at 7:41 pm #

    I spent 25 years as a medic in Providence, RI. My wife has MS. She takes adder old for fatigue. I’m just beginning to sleep 4 hrs uninterrupted. It’s a bitch.

    • Richard M. Cohen March 15, 2015 at 9:46 pm #

      Yes, it is.

      R.

  7. michael March 14, 2015 at 7:42 pm #

    Sorrt, that’s Adderall. The medic part of the equation had to do with 38 hr. Shifts

  8. Yvonne March 14, 2015 at 10:03 pm #

    Love this blog because it’s our reality with a needed dose of humor from folks going through the struggles: fatigue walking sleeping. Sometimes people don’t understand you’re tired all day but complain that you don’t sleep well at night. Does seem like a juxtaposition if you’re not living it everyday. Napping doesn’t work for me because I’ve never been able to sleep during the day (never worked different shifts where day sleeping was necessary). Wine works wonderfully as a knockout trick so sometimes I just say “it’s 3:00 somewhere and grab the Pinot Grigio and take a wine nap. Again by any means necessary by golly I am going to get some kinda rest! My body isn’t fooled that it’s actually rested but it gives me a little respite from reality every now and then.

    • Richard M. Cohen March 15, 2015 at 9:49 pm #

      Whatever works. Go for it.

      R.

  9. henriette March 15, 2015 at 1:14 pm #

    Fatigue is my biggest, hugest, giant symptom. I have learned to nap because Provigal turns me into the Last Emperor.

  10. kathleen March 15, 2015 at 3:34 pm #

    Richard,
    there are a lot of magnifying screens for laptops and computers.
    If you don’t have one, you should definitely look into it.

    Also,you might already know, but if you hit the control key and the + sign it will
    magnify the text…just keep hitting both until you have the desired text. Can magnify up to
    500%.

    Kathleen

    • Richard M. Cohen March 15, 2015 at 9:50 pm #

      K.-

      Got it. Thanks.

      R.

  11. Erin March 15, 2015 at 8:08 pm #

    After years of dealing with the fatigue, and trying to work around it, I finally gave in and have started taking Adderall. I’m on a very low dose, but it has definitely helped. Whatever works.

    • Richard M. Cohen March 15, 2015 at 9:51 pm #

      Amen.

      R.

  12. Ann March 15, 2015 at 8:25 pm #

    Richard, I am wondering if I can chime in here even though I do not have MS. I am a 7 1/2 year survivor of ovarian cancer, which is considered a chronic condition. I somehow came across this blog and I find it helpful to read about how you deal with a chronic condition. I can relate to so much of what you say.
    I am in almost constant chemo treatment. One of the side effects of all these drugs is fatigue. I can so relate with having to deal with daily, constant fatigue. Yet it does not necessarily translate into sleep. People don’t understand it either when I say I have severe fatigue, yet have difficulty sleeping.
    I do not take any meds to deal with the issue, as the chemo drugs pack such a punch, I don’t want to take any other drugs. I just learn to live with it.
    Thank you for allowing me to post, I hope I have not stepped on any toes because I do not have MS.

    • Richard M. Cohen March 15, 2015 at 9:57 pm #

      Ann-

      You are welcome here. Ovarian cancer is horrible. We can learn from you. Chronic conditions carry many common issues. Please stick with us and speak up.

      R..

  13. Ann March 15, 2015 at 10:55 pm #

    Thank you Richard, I appreciate it. Dealing with Ovca (as with any chronic illness) has been a real rollercoaster. Thank you for letting me post here.

  14. Dale March 16, 2015 at 12:09 am #

    Ann you won’t find a better group. Richard’s a fabulous Grand Poobah that lets folks share and not be afraid to say what they’re thinking. Even the old “When uncertain, when in doubt, run in circles, scream and shout” is ok here. I’d near given up hoping to find a group of comrades that actually ‘got it’. Keep up the fight!

    • Ann March 16, 2015 at 11:11 am #

      Thank you Dale, I appreciate it.

      I’d like to add about the fatigue..I just can’t stand being in bed 12 to 14 hours a night and feeling exactly as crappy in the morning as I did when I first went to bed. Same thing with naps. I never wake up refreshed. So frustrating. As I always say to people, I long to be ‘Claritin clear’, lol..just want that clear headed, non foggy feeling again.

  15. Brian March 16, 2015 at 1:25 am #

    I really wish a healthy diet or good ole fashioned positive thinking would keep me awake during the day. Tried both, no such luck. Fatigue, even after sleeping for 15 hours is a bit silly. After many years of fighting this battle it starts to wear you down mentally. The other symptoms of this disease suck (that’s Latin) enough but never ending fatigue is what I consider my biggest problem and I’m in a wheelchair. In order to keep sane and to still enjoy life I have to pop Adderall like they’re Junior Mints!
    I’m not scared of addiction, I am terribly frightened that one day they won’t help anymore.

    • Richard M. Cohen March 16, 2015 at 7:40 am #

      I believe addiction is the least of our worries. Sleep deprivation is dangerous over time. A famo us historian laughed at me when I confided that I was worried about addiction.

      R.

  16. Christopher March 16, 2015 at 4:14 am #

    I like to use good old-fashioned metaphors to try and explain parts of this freakish disease. Maybe there’s one or two to help describe what’s going on here with the fatigue to make it easier to understand the underlying pathology.

    Thinking of your nerves as electrical wires is too simplistic, and actually they are a somewhat different in how they work. Better to think of them as hoses, or pipes, that carry signals as electrified molecules flowing through those pipes like a fluid. When the myelin is worn away, it is like many leaks in those pipes with the energy escaping. The body tries to compensate by trying harder which only causes you to get run down from the extra work, lost energy (in the form of electrochemical signals) and energy pulled from other parts of the body to compensate. The body has negative feedback circuits to make sure things get done, and keeps trying until those circuits are tripped by completion of the task. That doesn’t happen when the signals keep leaking out, and more energy is expended to try to force the signals through. It’s an ugly endless cycle. It’s like trying to drive a supercharged sports car at 225 mph while the gas is leaking out–eventually it’s going to sputter, slow down and eventually stop. As far as drugs to help the fatigue… same thing, they only maybe work for a little while as they are basically ‘leaking out’ too. The funny thing is that all nerves are systemically connected–like a power grid. So doing other supposedly unrelated things will wear you out even more, and faster. Like let’s say your legs are affected and you have trouble walking because you get fatigued. You could also be doing complicated math problems, and that intellectual exercise will also increase the muscle fatigue in your legs faster. I know it sounds strange, but they are all profoundly interconnected. This is why things like meditation help. Also the amount and degree of fatigue will be different for different amounts of myelin, and nerve, damage. If there was a drug to ‘plug up’ those leaks, the fatigue wouldn’t be so bad. Actually, I believe that is sort of what dalfampridine (Ampyra) does. It just isn’t real good at it.

    • Richard M. Cohen March 16, 2015 at 7:49 am #

      OK, Christopher, come clean. How come you always know this stuff? Are you a doc? A scientist? I, for one, appreciate your input. Even if you are making it up, it sounds good. Your explation about the leaking makes sense. Thank you.

      R.

    • Henriette March 20, 2015 at 10:46 am #

      Christopher, that is really interesting. My neurologist, Dr. Leslie Weiner at USC did an experiment with stem cells and cow myelin to fill up “the leaks” as you call them. I haven’t caught up with it lately but when he would tell me about it I would always wonder why some scientist/neurologist/genius can’t just figure out how to just ‘putty-up’ those holes. My life would be soooo much easier. I usually use the electrical wire explanation but now I’m switching to pipes.
      thanks, I love Richard’s blog because I am always learning something new about this pain-in-the-butt disease.

  17. Joan Z March 16, 2015 at 5:42 am #

    I just have to say that I’m typing this at 5am, up since 1am, and the time stamps on many other remarks indicate that I have plenty of company. What a pity we can’t harness all of the talent and intellect of this amazing community for a killer group sleep. Not to sound too slutty, but I’d love to fall asleep with all of you

    • Richard M. Cohen March 16, 2015 at 7:52 am #

      Good tought. Or just fall asleep. I would let the dog sleep with me if it helped. No I wouldn’t.

      R.

  18. Jan March 16, 2015 at 8:57 am #

    Christopher–a very interesting read. (And I get to pass the baton of having the longest replies to you 🙂 You give me extra confidence to know that they can be okay at times. And I know that Richard has been kind about it).

    Ann, I echo Richard. And you help us all to realize that there are many who battle something. I’m sorry for your issues.

    And funny timing re your last post, Richard… “Sleepless in Seattle” was on TV last night (the later hour cause some lack of sleep in a better way than MS, but some smiles, too).

  19. dale March 16, 2015 at 4:42 pm #

    Wow great info here. I actually take half a 5mg Oxycodone before bed many nights, discovered it actually worked for more than wisdom tooth extractions. My legs no longer scream at me. It’s a sin what the druggies have done to constrain legitimate use of this painkiller.

    I remember how so many in Peru routinely chewed Coca leaves. And how great Coca tea was for altitude sickness. Nothing will ever beat Codeine in Vics 44 cough syrup, Codeine originally from Codium, a succulent seaweed. In fact most medicines were originally derived from plants. Fortunately we don’t need to chew willow bark these days, but I’m damn sure there’s a plant out there that will help us. I’m not any kind of naturopath or ‘crunchy granola’ type but am in science and more and more convinced there’s a real reason a lot of these plants are here.

    • Richard M. Cohen March 16, 2015 at 7:34 pm #

      Please keep us p posted.

      R.

  20. Sandra Schneider March 16, 2015 at 6:16 pm #

    Fatigue keeps me virtually bedridden. I can’t even go out to eat anymore. I have to do everything in a reclined position. It has been my constant companion since the age of 12 and has steadily worsened in the 30 years I’ve had MS. I believe the link between the EBV and MS could explain our chronic fatigue. The only thing that makes a dent is straight amphetamine salts. Provigil, Amantadine never made a difference. Unfortunately, the amphetamines gives me terrible insomnia.

    • Richard M. Cohen March 16, 2015 at 7:35 pm #

      Damn.

      R.

  21. Yvonne March 17, 2015 at 12:15 am #

    So now I’m wondering should I pick that cocaine vice from 15 years ago back up. Maybe that’s why my symptoms didn’t seem such a nuisance and after the crash I slept like a baby. Of course I can’t party like I use to so the absence of fun part may detract from any benefit 😉

    • Richard M. Cohen March 17, 2015 at 4:33 pm #

      Vice? It is for medicinal purposes.

      R.

      • Yvonne March 17, 2015 at 9:53 pm #

        No it was a crazy period of proving something to myself. Denial of disease and trying to be a party animal to counter the effects of the progression of the disease. When Dale mentioned chewing coco leaves in Peru it reminded me of that period when I had the disease blinders on. Fun time but stupid cause nothing was really accomplished…except in hindsight I did sleep well afterwards.

  22. Yvonne March 17, 2015 at 12:19 am #

    BTW basing my reflection on the chewing of coco leaves and Vic 44 codeine references..

    • Richard M. Cohen March 17, 2015 at 4:34 pm #

      ???

  23. Christopher March 17, 2015 at 2:47 am #

    Richard,

    I thought I had posted this before, but maybe not since I forget a lot of things… but I was a molecular bio major in school before I had to drop out because of the problems with MS. I had a 3.85 GPA, and was on the dean’s list before all the difficulty hit. Then because I hadn’t paid enough attention to register with Special Services, I had to take tests the same way as everyone else. Which wouldn’t normally be a problem except that I could barely hold a pen or pencil and couldn’t keep up, then my GPA dropped to a 3.62. So instead of making a bigger mess, I dropped out before my grades did. I really miss being in school. But I still keep up with research, go to symposiums at the nearby university and volunteer time whenever I can. I was also a volunteer, for a short time, at a stem cell lab here at UCI in Irvine, CA. I’m kinda far from being a doctor or research scientist (I still have a few more years yet until grad school), but I consider myself a scientist at heart. Always have been. And, no… I didn’t make it up. Although that wold be pretty cool.

    • Richard M. Cohen March 17, 2015 at 4:38 pm #

      Your backround is strong and what you have attained and retained impressive. Please stick with us. I can’t even spell siense.

      R.

  24. Eliz March 17, 2015 at 10:39 am #

    I take provigil (modafinil) and I do believe the generic is not as effective but it’s expensive. Medicare is fighting my script of even the generic so I’m running out. I take 100mg in the morning with my chronic migraine med which has caffeine in it. It seems the combo gets me going but if I have something important to do, I have to take another provigil about 4 or 5 hours later.

    My sister had samples of nuvigil which had me thrashing around at 4am with crazy strange dreams. I’ve heard that some people can tolerate one or the other. Maybe nuvigil is the key.

    My other sister who has lupus takes ritalin. Not for me. I get shaky if it take sudafed. Something will work Richard. Keep trying. Keep the faith.

    • Richard M. Cohen March 17, 2015 at 4:40 pm #

      I sm sick of swallowing pills.

      R.

  25. Rob March 17, 2015 at 3:32 pm #

    Fatigue sucks eggs. I get it all the time. The fact I have a bum right leg courtesy of the MS doesn’t help. When I’m at work I’ll have a cup of coffee around noon or 1ish to head off the 2pm wave of fatigue. When fatigue hits around 9pm I feel like I just want to shut down–and do sometimes, but that leads to the vicious cycle of waking up in the middle of the night followed by hours of junk sleep. I remember reading in the Swank MS Diet book about how it’s better to lie down rather than just sit to address fatigue. A 15-20 minute lay down works sometimes. Other times a double espresso does the trick, but not after 5 cuz I’ll be up all night.

    • Richard M. Cohen March 17, 2015 at 4:42 pm #

      After 5 I recommend a martini.

      R.

  26. Christopher March 17, 2015 at 7:09 pm #

    This may help give a better picture. It’s a little technical, but not too complicated.

    http://www.bris.ac.uk/synaptic/basics/basics-2.html

    • Jan March 17, 2015 at 10:39 pm #

      Cool; thanks for a good description.

  27. Ann March 18, 2015 at 12:01 pm #

    Richard, I remembered last night how I came across this blog. The movie ‘Mr. Mom’ was playing on TV, and I watched it again for the zillionth time. I remembered reading that Terri Garr had MS, so I decided to Google her and see how she was doing. One of the Google entries was a blog post you had written about her. Then I read other blog posts of yours and liked what I read. And here I am!

  28. dale March 19, 2015 at 4:59 pm #

    After 5 I’d recommend a good martini as well. Olives are a fruit (most think a vegetable), so take healthy, take 2. Although only my PC believes me when say a beer at dinner helps me walk (read ‘pull myself up’) up the stairs better to bed. Maybe it’s the dilation of blood vessels. Wasn’t that what Zamboni’s CCVSI was all about?

    And then there’s Kava Kava. Those crazy Fiji’s and that ritual. More good stuff to serve with coca leaves. Who’s up for a trip to South America and the Pacific?

    • Jan March 19, 2015 at 5:15 pm #

      A Zamboni is an ice surface-making machine. You could maybe do a side stop and scrape up ice for your glass of…

      …I know, an Italian researcher–interesting on Google, esp. since I had not heard that one before.

      • dale March 19, 2015 at 5:18 pm #

        I coached youth hockey. Chipped glacier ice is better in everything. Maybe we hould get some for Richard…

  29. dale March 19, 2015 at 5:04 pm #

    Wonder how Terri Garr IS doing by the way. Loved her in Oh God.

  30. dale March 19, 2015 at 5:16 pm #

    And Christopher? You are our resident rocket scientist. A Molecular Bio guy trumps a marine ecologist. any day in all this Go back and finish that degree even if online. And get back in the game and help cure this thing. As they say around here, “You ah WICKED smaht…”.

  31. Sue March 21, 2015 at 5:42 pm #

    Richard, With all of the responses to combating fatigue, no one mentioned Aminopyridine (4-AP). My neurologist had prescribed this to me over 10 years ago. It is an organic compound, which can be found in compounding pharmacies with a script from your physician. I have tried Amprya, the FDA approved version and it did not compare. I began with 5 mg twice a day. Now, I take 15 mg twice a day, otherwise, I would be a napping fool!