Newsflash:  CFS can make you too tired to blog

I’ve never been diagnosed specifically with CFS, but the way I’ve started to sleep for 20 hours a day, I’d have to think that the diagnosis is a possibility.  The extreme fatigue has been happening for the last two or three months, and it happens for a few days, then I get a bit of a break, and then it starts again.  I’d say that I sleep 20 hours a day at least three days a week—that’s pretty horrifying.  And it’s not just me, my partner is in the same boat.  We even wondered if we had carbon monoxide poisoning or something, but all our pets, even the tiniest birds, are perfectly healthy and lively, so the problem just lives in us.  For people who wonder what chronic fatigue feels like, it’s not just a sense of being dragged down or unenergetic.  It feels like being drugged, as if someone spiked your coffee with sleeping pills or cold medicine and you’d rather weep than be forced to keep your eyes open.  I have days where I go around and feed the pets in a rush because I can feel myself slowly collapsing, and I know I need to finish feeding before I can fall into bed.  Yesterday I went to bed at a reasonable time and I fell asleep normally and when I woke up, fourteen hours had passed.  I don’t even bother to fight it anymore, because there’s no remedy.  Provigil did a great job clearing normal FMS brain fog, but so far nothing can defeat CFS.  My doctor has offered me stimulants like dexadrine, but I worry I’d end up exhausted and jittery, and I can’t bear the idea of being any more of a disaster than I already am.

The worst part of the fatigue is the way it affects my work.  I love working, and I love my jobs, and I really fear losing them when I have two or three consecutive days of being incapacitated.  I hope the fatigue is a phase, and it will pass, maybe when the cooler weather arrives.  We’ve only used our swimming pool one time this year, because it leaves us so sleepy that we need a nap.  And if we’re napping, we can’t be working, and we need to work just about every waking hour because otherwise we’re sleeping.  I have no right to complain about my life, as I live with someone loving and kind, and I have a nice home, and I have food on the table and a family who loves me.  However, all that aside, parts of my life really suck right now.  When I started this blog, I didn’t realize that the “tired” part of the title would end up becoming such a prominent part of my life.

Posted by on 08/05 at 05:17 AM

  1. I am with you on this 1000 percent! I used to have a blog but was too tired to keep blogging, so I really appreciate the update. Like you, I sleep a lot, and have slept a lot with my FMS, leading me to wonder if I had CFS/CFIDS. I’ve been told that they are part of the same illness and that if you have one, you’re likely to have the other, so I don’t know who’s right.

    I believe more that they are the same thing, because it seems when I’m more fatigued and sleepy, my pain is less and vice versa. Plus, an extremely good doctor, Alina Garcia, M.D., at the Fibro & Fatigue Center in Las Vegas, told me this, and she is a specialist in the field.

    Like you, I go from having days and days of sleeping for hours and hours to a few days of sleeping only a “normal” 10 hours a night. You describe it as feeling drugged; I have always felt like mine was a feeling of being drained of all life’s blood, of that “life force” that drives people, and often being without bones and muscles too. Maybe you could let me know how bad yours gets as far as I could be laying on the sofa and have to go to the bathroom but I am so depleted that I think it would be easier to just go where I am. Also, on really bad days, a teaspoon seems too heavy in my hand and walking several feet to get a glass of water seems too tiring.

    Does yours get that bad?

    My doctors have had me off and on Provigil, which initially helped but then didn’t, and on Adderall XR, which helps my fibro fog and ADD somewhat, but either is not a huge enough dose to make a difference in my fatigue or maybe I’d be sleeping 24/7 if I didn’t take it.

    Like you, the worst part of the fatigue was how it affected my work when I last tried to work. But I got fired because my health problems and time needed off work for medical appointments was too much for my prior employers. I think disability should automatically kick in for those of us whose employers say we have too many medical appointments and that the only way we could make up the time would be to work during hours when other people would be sleeping, the result being that if we were to try it (which I did), we’d have a 24 hour day of medical appointments, work, commuting, maybe showering, with no time left for sleeping or eating.

    While I liked my work, between my health, medical appointments, and the other symptoms related to fibro/CFS (nausea, concentration and memory problems), I could never keep up or do what was expected of me in the “real world”.

    Please don’t do what I did, which was recover a little and then force myself into the “real world” again three times until I’ve made myself so bad now that it’s been over a year since I tried to work and was fired, and I am nowhere near even a little recovery. In fact, I have now been awake for an hour (it’s noon), after sleeping 14 hours, and writing this has made me so drained I must go back to bed.

    Kat

    Posted by Kat  on  08/05  at  11:01 AM

  2. One more thing: You are lucky you have someone loving and kind, because if it weren’t for my new dog, I’d have no one, and I’ve had no one for a long time because I didn’t have “enough energy” to keep up with anyone, and they were very critical of me for that.

    Posted by Kat  on  08/05  at  11:03 AM

  3. Thank goodness CFS isn’t contagious (as far as anyone knows) because otherwise I’d wonder if I gave it to Leigh-Ann. I am dealing with CFS issues right now and found her blog during an insomnia filled night (great combo, eh? Insomnia and CFS) of Googling for CFS blogs.

    The thing is...I first came to her blog exactly 24 hours before she posted about her CFS-like symptoms. Think I electronically contaminated her?

    I’m kidding, of course....forgive me if my sense of humor isn’t welcome here. I don’t post comments frequently, but your description of what dealing with CFS feels like hit home. And Kat’s comment about being too tired to get a glass of water....well, that hit even closer.

    I’ve been reading (via Google search results) studies that concluded anti-virals and/or antibiotics (but specific ones it seems) over long periods (at least a year for full effect) have helped patients.

    Have you heard the same from your doctors and/or heard positive outcomes from other people you’ve met?

    CHEERS!

    D

    Posted by David  on  08/05  at  12:27 PM

  4. Hi David,

    I was taking antibiotics (primarily Valtrex due to having cold sores caused by one of the Herpes viruses) for several months, and I felt better when I was on that, but the doctors took me off. I didn’t feel a lot better, but I felt some improvement. In fact, I’ve felt some improvement before with other things that the doctors took me off, so now a lot of times when I run out of something, I just don’t ask for a refill or for a new RX from the doctor. I figure they wouldn’t give it to me anyway.

    Also, I hate to take medications—always have. So yet another very bad combo for someone with fibro/CFIDS, huh?

    By the way, I have had insomnia in the past too, but not so much now that I am no longer working and going to medical appointments six days a week. I think maybe my body was really “wound up” for years and years and perhaps that’s why I had insomnia.

    Pain wakes me up in the night, though, and sometimes will keep me up if it’s really excruciating.

    I’m so glad I found Leigh-Ann’s blog and eventually I’m going to read all of her posts. It just takes so much energy to read.

    I wonder who else, like me, has almost completely become a different person (gone from organized to unorganized; from planning beforehand to unprepared and unable to plan; from enjoying reading to finding it exhausting, frustrating and at times impossible; from being a math whiz to being unable to do simple addition and subtraction?) as a result of fibromyalgia and/or CFS? If so, has anyone figured out how to cope? Because I have tried everything others advised, without success (writing it down, for example, so now I have at least 500 little bits of paper everywhere with things written on them).

    Just from reading some of Leigh-Ann’s posts already, though, I can see that we have gone down a similar path. Maybe we all do ...

    Kat

    Posted by Kat  on  08/05  at  03:20 PM

  5. Leigh-Ann, when you get a chance to read this, can you direct me to any more detailed posts you have about your struggle with Hashimoto’s? It’s so tiring to go through all of this, as I’m sure you understand.

    But I have long had thyroid problems, which most of the women on my mother’s side had or have, although way back when they didn’t treat it, and my mother was treated with radioactive iodine (I think that’s the name of it). My mother’s half-sister has been on thyroid medication all her life, and I was undertreated for a long time, being given 30 mg of Armour thyroid when apparently I really needed 45 mg or higher, which I’m on now.

    I’m just wondering if you know how out of whack, for lack of a better word, the thyroid can get? Because while I was on 30 mg, I was testing normal, but I started losing my hair on my legs, etc., and my skin got very dry and was flaking off and I was very cold even when it was 100 degrees F outside.

    I look forward to reading the rest of your posts over time, and I love, love, love your little voodoo doll, although if it were me, it would need a lot more pins in it!

    Kat

    Posted by Kat  on  08/05  at  03:29 PM

  6. It’s posts like these that really make me wish for a magic bullet- (other than a cure!) but career possibilities for folks like us- more tolerant of the flexible drive we can have and able to work around our inability to get out much.

    Transcription seemed great for me- but it’s hard to hold the job when you can’t crank the production they want and when they want it. And it’s far from exciting and down right depressing. And Gee, doesn’t that help the symptoms? (insert wry smile here)

    Coping mechanisms are unfortunately things you have to evolve for yourself, Kat- they have to adjust to what you can do and what you can afford, and it changes from day to day. I am watching my own slow decline, and it’s a very frightening thing, because I know one of these days I won’t be able to leave the house any more. (I have MCS, which reflects into my joints for something like fibro, and into my GI system, but the scary symptoms are the breathing ones- or lack thereof- when I encounter anything scented).

    Posted by Georg  on  08/06  at  04:32 PM
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