for Kredca - a day in the life.... (CFS)

Discussion in 'Fibromyalgia Main Forum' started by elaine_p, Jul 2, 2003.

  1. elaine_p

    elaine_p New Member

    Okay, let's say I'd trade some of the fatigue for pain if a pain med could work! (I had bad low back pain all last month and it was very distracting.)

    Well, for me, when I get up I have 1-3 hours of feeling able to do things. I'm always tired or exhausted when I wake up, depending on what I did the day before, how long it took me to sleep, how long I was able to sleep, maybe what I ate whenever, or for no apparent reason at all.

    After checking email, eating breakfast and taking my shower (if I have the energy; sometimes I have to rest beforehand or put it off 'til the afternoon), I do whatever the next thing is that needs to be done: pay bills, make phone calls, go to appointments, whatever. Then I get the mail or whatever. Sometimes I have to rest in the process of doing things, other times I don't.

    Then it's about time for lunch, followed by a nap, where I sleep for 1-1/2 to 2 hours if I'm lucky (I hate being exhausted but unable to sleep). It takes longer to "wake up" after my nap than it does in the morning. And I can't count on having the energy to do things in the afternoon. If I can, I do the dishes or garbage in the afternoon, but lately have been doing them in the morning because of too little energy.

    I spend a lot of lying the time on the couch reading. TV is harder for me than reading--the noise is fatiguing and tracking the movement is fatiguing and sometimes it's hard to follow the plot, even of a sitcom! And if I miss something on TV I miss it. With a book, I can reread a paragraph as much as I need to (and if it still doesn't make sense I figure it's just fiction and doesn't matter).

    Then it's time for dinner. Followed by sitting up for at least an hour or I get gastro probs. (This is hard to do when I'm really tired.) Then lying down again 'til bedtime. There are some evening TV shows I watch. Sometimes I can last an hour watching TV, sometimes I insist on it even if I shouldn't, and other times I tape things to watch them at my speed....

    Then it's time for bed. If I'm lucky, I fall asleep in about an hour. If I'm *really* lucky, I fall asleep in about 1/2 an hour. Other times, I lay there for 2-3 hours (even when I'm practically falling asleep on the couch!).... (Going to talk to my doc about Klonopin at my next appt!) But I'm lucky in that once I'm asleep I'm asleep for the night.

    Actually, I don't think our days are very different, including the range of ability/disability. But yours is caused by pain and mine's caused by fatigue.

    I'd actually like to find a data entry job in town, that I could work at for 2-6 hours/week (over 2-3 days). But right now I'm waiting to see whether the Valtrex works and hoping that afterwards I can work 20 hours!!! (Hey, I'll even take 12.)

    And lately, I check this board in the mornings and afternoons for about 1-2 hours. In the evenings I chat when I have the energy. Some people (SS, LTD) might think I should spend the energy I use here on working, but I need this board for my sanity, sobriety and education!
  2. kredca4

    kredca4 New Member

    BTW, may I ask why you are taking the Valtrex, and do you have any side effects from it? I often think about trying it, but I have a bad time with Med,s Supplements and even Food's.

    I try to read, but I cannot follow the Plot's like I used to, and due to the CMPD I have blurry vision after 2 chatper's. I even joined a Large Print club, because I really don't need reading glasses. It's a muscle problem, and a trigger point causing the vision to blur.

    I like to watch Movie's, what I do, is I tape them, or any show that I like, even if I'm half way through it, cause, I will just fall asleep at any moment. But I don't stay asleep, and usually wake up during something else.
    I have tried all kinds of med's for my Insomina, but nothing works.

    I tool 2 .25mg of XANAX lst night, but still woke up after 3 hours. Same with my Naps, 2 pm and I fall asleep, but am awake in usually one or 2 and it's a fitful type of sleep.

    I have to use Pillow's to be comfortable, I have 5 on my bed, but I sleep with only 3.
    Noise is a problem, but it's more like I can't fliter out what is being said. I have Mastoiditis and this is being made worse by the CMPD TrPd's again.

    BTW I haven't had any better luck with the Klonopin than with some of the other's I have tried. But I know that a lot of folks here with CFS have great sucess with it.

    Hope it helps you too, and Thanks for answering me, so fast and just what I was looking for. I hope you don't mind I printed it out, to show my Doctor's that we are similiar but are still 2 different types of Syndromes.

  3. elaine_p

    elaine_p New Member

    I'm taking the Valtrex because my doc said "they" were having good luck with it. And we didn't do whatever test beforehand because it was expensive (I don't have insurance). Don't remember if I asked him *what* I wasn't being tested for at my last appointment or not. I'm going to at my next one. (I think I assumed he meant HHV-6 or a stealth virus when he first mentioned it.... I had high EBV 5-1/2 years ago, and high CMV just before I started the Valtrex.)

    I haven't noticed any side effects from the Valtrex, but it has caused me to herx twice--wonder if it will happen again in another 3 weeks. That's apparently normal as the little buggers are dying off.

    There are several antivirals, you could see all the ones they tested at the Institute for Viral Pathogenesis (do a google search). Then take the link for Antiviral Treatments. They only talk about it being used for HHV-6, but it might give you some info. Mikie is taking Famvir as an antiviral. And I saw someplace about Tagamet being an antiviral, but the drug company isn't pushing that because they don't have sole rights to it anymore so might not make them money....

    Fortunately I don't have a prob with meds, I can usually even take "normal" doses. And haven't had a problem with the supplements I've tried. But foods....

    As far as you printing what I wrote, it is a public board.... (Though I'm kinda grimacing as I type this. :) If it helps you in any way, go-eth for it.
  4. kredca4

    kredca4 New Member

    I have been researching the Stealth Virus's,( have been for about 3 years now) and I have a lot of great site's with information on them. But again, it's the personal experience's that I am looking for.
    It helps me to understand what I have read, when someone tell's me what it was/is like for them. We are all different, as we say, but we have gotten here, by different paths also.

    Maybe a stealth virus that is triggered by ??

    I wrote a reply to a recent post about my bad experience with the Tagament, you can really get sick from it, plus it has bad interactions with other med's I'm now on.

    I have Herpes, and we aren't to sure how I got it, except that it only matter's as far as the whole Puzzle , if it's a piece of FMS or not.

    I also had Chicken pox as a child and Mumps, so maybe it could be caused by some delayed reaction to thoes Virus's?

    I'm starting a Flare , so I won't be going into the pool yet, the Dr. said it didn't matter, but I take no chance's, when other's are concerned. Wouldn't want to make someone else sick. They still have a lot to learn about the herpes, and it's effect on the Immune system. I do know that the Flares are very similar to FMS flares.

    Wish I could leave you a good website, but you know the rules, and it's a site, that has a really long and weird name, so that might not help, the one article I liked was Titled, "What the Heck is a Virus", by JC Brown, at Kansas U
    maybe that will help lead to the other links.

    John Hopkins Univ also has a good article on Infectious Disease

    Thanks again,

    [This Message was Edited on 07/02/2003]
  5. elaine_p

    elaine_p New Member

    I'll keep in mind your experience with Tagamet. If fits with what the pharmacist told me about Valtrex--that it's "clean" and doesn't interact with much of anything. I know Tagemet is old since my college roomie took it 20 years ago. Old doesn't mean it doesn't work, but it could be not quite as pure or something.

    Gad, how annoying. It's bad enough having just FMS *or* CFS, let alone everything else we seem to deal with. I don't think I have any other illnesses, thankfully, but I could just be being blissfully ignorant. (I have a deal with God--as long as I have this, I can't get anything else. As far as I know, he's keeping up his end of the bargain! ;-)

    I don't know what I had as a kid. The normal stuff, whatever normal is.... Lots of earaches I remember. When I was in my mid-twenties, I started getting sick about every 2 months. Since it always settled in my lungs, the doc always gave me antibiotics. (That was before the public was aware of antibiotic overuse. Now, I wish she wouldn't have, but oh well.) Then I quit drinking and I figured I'd quit getting sick. Nope, that wasn't it, but when I started drinking bottled/filtered water that cycle finally stopped. Two months later I was too tired at night to try to join a barbershop group, but I didn't think anything of it until last week! Then I got pneumonia. Then I got full-blown CFS.

    I think it's good you don't go to the pool if you don't think you should. Doctors do NOT know everything. And they're still saying that CFS isn't infectious, even though evidence suggests it may be.... (Someone posted about the rare diseases site and I looked--they have two entries: one for CFS, another for CFS/ME. CFS they say is not contagious. CFS/ME they say *is* contagious.) I figured early on that I shouldn't give blood 'til we know what's wrong. Of course, I also read Osler's Web early on, and that's where evidence of contagion was first suggested.

    Have you tried Valerian Root to help you sleep? It doesn't help you sleep--at least it didn't help me 2 nights ago. Others talk about magnesium. I don't have any problem staying asleep once I get there, except I can be woken up easily at, say 4:30!

    Thanks for the site info! My dad (retired ob/gyn) gave me an article on stealth viruses a couple years ago, but I never thought of researching it! Duh. (My mom asks me a question, I tell her to look online. I have a question, I automatically figure I need to find a *person* who knows. Go figure.) Plus, I was stuck in a phase of not being very proactive. At first I read a lot about the disease. Then I was overwhelmed and figured, what do you try??? So I kinda got in a slump. Then I found this board a month ago, and my doc is probably gonna regret it! :)
  6. paulsgirl

    paulsgirl New Member

    hi elaine im anna you wrote and told me to change my topic to florida hey thanks i still dont know if im doing this right by communicating when it says reply it replys back to me so i found you by going through the message boards to write back to you i surely know what your routine is like my is very similar just in the past 4 months have i had the real back pain my doctor told me its because we lye down so often that are hips get out of place alot and that puts pressure its almost like haveing a bad kidney infection but worse with the pressure try asking the doctor to see if your hips are out of place. for many of us i have studied that with one symptom comes several more and the battle never ends but people who know what the pain is can actually begin to heal because you learn from others pain maybe on how to correct your own suffering strange to say but their is hope we all can make a difference only if its just that second of reading or typing words of our experiance sends help i hope this has maybe helped you if not keep searching we are all listening
  7. elaine_p

    elaine_p New Member

    Thanks for the info on the hip thing. It's mostly gone now, and it IS better when I try to use my stomach muscles to help support my back. If it comes back with a vengeance I'll talk to the doc about it, but right now I have so much else to take up the time!