Madwolf - need help re: Major fatigue problems

Discussion in 'Fibromyalgia Main Forum' started by Annette2, Jul 18, 2003.

  1. Annette2

    Annette2 New Member

    Madwolf - can you help me? This may sound confusing so I'll try to explain clearly. Every day around 11:30-12 at work I get VERY tired - feels almost like a drugged state. My eyes and my head get very heavy. Sometimes I almost nod off to sleep. I eat breakfast around 8:00 and then have a snack at around 10:30 - either a protein bar or a piece of fruit. The same thing happens a lot in the evening, around an hour or two after dinner. I don't think it's my blood sugar, because if my blood sugar is low it feels different than this. I've been taking 600 mg. of Neurontin at night for about 6 months now. I called the pharmacy and she said it's probably not the Neurontin because the half-life is 5-7 hours. My thyroid had tested low but since we adjusted my meds the blood tests came back normal. Do you have any idea what this could be? I was diagnosed with FMS 5 years ago - is this some form of chronic fatigue? Thanks!!!!!
  2. jadibeler

    jadibeler New Member

    I know exactly what you are talking about. Fatigue is my major problem with FM and this is what happens to me. And it can happen fast.

    It is hard to explain, especially to people who don't even know what the word fatigue means! This is beyond "fatigue", but unless you've experienced it you can't comprehend it. When I met my present husband 10 years ago, one of the first things I told him was that when I said I had to lie down I meant it and I meant right that minute. "Otherwise I'll fall down", and I meant that, too. I've lain down on people's living room floor. I've lain down people's yards.

    It isn't so bad now that I don't have any pressing things to do anymore and I'm not pushing myself but there was a time when this happened to me often. For me, it was around 3:00 in the afternoon. It was a terrible problem when I didn't get off work until 5:00. Then they set up a cubicle at work with a couch in it. I think some law was passed that said they had to if they had women working there. It was a Godsend for me. I'd take my lunch hour and sleep. That let me at least get home from work.

    I've never given it any thought as far as what causes it. I always considered it to be the FM.

  3. Annette2

    Annette2 New Member

    I'm glad someone knows how I feel. It's driving me crazy. I tend to think it's not the Neurontin, but I don't know for sure. FMS sure is weird with all these symptoms that come out of left field and you can't figure out. I just feel so drained all the time! I'm taking supplements and trying to eat right and even exercising as much as I can, but I get so stressed out with everything. My whole life revolves around how I feel at this moment or that moment. I'm glad I'm able to work and take care of things at home - it's just that I get so tired. Sometimes I feel like I'm living in an alternate universe. I'm in my own little world with a sort of cosmic aura around me that's tied in with FMS symptoms. I can't seem to get past that. I hope Madwolf reads my post and can give me some advice. Thanks for responding!

  4. jadibeler

    jadibeler New Member

    I feel the same way about learning other people have exactly the same strange problems I do. For so many years I was alone in the world with this. It wasn't even known about by most doctors. I moved around a lot so was always needing to find a new one. I'd tell them I had "myofibrositis" and they's say "What's that?" I never met another person who had it. Now I'll occasionally meet someone who knows someone with Fibromyalgia but I still haven't had anyone confirm all these weird symptoms.

    I've had this all my life (58) and just in the last 2 weeks reading this board I've learned so many of my other strange symptoms are related to it. It's got to be the weirdest disease out there! My GP even told me certain things I complained about weren't the FM, and then I read about them here.

    But the thing that has meant the most to me is learning how many others have this horrendous fatigue problem. Everything I've read says that fatigue is secondary, and for some it is, but I feel so validated since reading this board.

    I know what you mean about your life revolving around it. I no longer promise to do things for people, try not to make appointments, and forget working outside of the home. Everything is "it depends on how I feel at the time", and that's the answer I give when people want me to do something at a later date. Imagine what it was like trying to take care of an invalid mother. Some days her aides would look at me like I was the next patient in line.

    Well, this will bump this back up. Maybe Madwolf is off enjoying the weekend. I'm interested in his response as well.

  5. Dara

    Dara New Member

    what I went through when I was working. I would come home at lunch time to sleep, and when I got off work there were times I actually fell asleep sitting at a red light. It was terrible, I don't think anyone understands just how totally drained you can get within a matter of seconds.

    Now that I'm not working I can at least lie down as soon as I feel it coming on.

  6. spmary

    spmary New Member

    HI Annette...So sorry about this..I too used to have the fatigue so badly, I even layed down on the side of the road. Whenn I heard a car coming I pretended to tie my shoe. Finally a kindly lady saw me and realized something was wrong and offered to drive me home. I was in sight of the house,so took her up on it. When I got there,I refused her offer to help me in the house. I told herI
    was fine.
    After she left I sat on the stairs awhile and finally crawled up to the deck and lay there for an hour or two until I could stand and get inside.I don't have it so bad now,but don't know what helped. I try to perform some house hold task for about 20 min. then lie down for 30 min.I find that I have to lie down alot, sleep is another problem. Ambien helps put me to sleep, but I was told not to take it unless I planned to get 7 or 8 hrs, of sleep and I never get more than 4 or 5. Sometimes I take tylenol P M and that helps. I try to get to an arthritis water exercise class 3 times a week..But the arthritis gets worse and worse,or maybe it's FM or cfids. Sorry I can't offer much help, but I'm sure some of the others can.
    They care and are so knowlegable..LOL, Mary
  7. toots2

    toots2 New Member

    i tried the neurontin and had the same symtoms as you. Neurontin made me so sleepy I could barely get moving. They say this stops after taking it for a while, but it was doing nothing at all for my pain so I stopped it. Did I ever feel better. They say neurontin is for nerve endings, and I can never figure out what this is prescribed for fibromyalgia patients. The pain from fibro stems from problems with connective tissue, muscles, etc., not nerve endins I think. Hope you find out the problems soon. Maybe stopping the neurontin for a while or at least taking it at night before you go to bed might help. Toots
  8. Annette2

    Annette2 New Member

    Thanks for your posts. I don't think this is from Neurontin. I take it before bed, and the half-life is 6-7 hours. This fatigue occurs over 12 hours later. I am going to call my doctor on Monday. I have a sinking feeling he'll want to do a sleep study. I'm afraid it'll be a pain in the neck for me. And with my track record, it'll be negative and I'll have yet ANOTHER bill to pay. Sometimes I think I'd like to run away, to some deserted place and just hang out and not have responsibilities. Then if I get tired I can just lay down and sleep. But that's not quality of life, is it? This DD takes so much mental and physical energy. You never know how you'll feel from one minute to the next. Well, it could be worse. We're all like the picture of that cat hanging on to the branch by it's poor paw-nails.

  9. elaine_p

    elaine_p New Member

    I don't think madwolf comes to the board on the weekends.

    Is it possible you have CFS? I have CFS, not fibro, and it sounds exactly like what I go through. I can even be feeling pretty good and think "gee, maybe I don't have to take a nap today", or be doing something interesting and say "I'm *not* going to take a nap today". Then within 5-30 minutes my body overrides my brain. It happened at pretty much the same time every day (past tense due to a new phase, which I hope is SHORT--one nap a day is bad enough, but TWO???).

    Some people counteract the fatigue with sugar, which is bad since many of us tend to be hypoglycemic and it can also increase adrenal fatigue.

    Others use Ritalin, which can be bad (there's an article in the Library about how SSRIs and stimulants like Ritalin can cause brain damage with long-term use). But if it gives you the quality of life you want and you're willing to take the risks it's your decision. Provigil can be an alternative and may not cause the brain damage since it apparently works on a different area of the brain.

    Or there's always caffeine. My own experience is that this works sometimes but not all the time (same with the Ritalin, which I don't use very often). And my personal belief is that you may not want to push it/yourself too much as it may cause more problems later on (but again it's your choice). Is there any way you can take a nap?
  10. IntuneJune

    IntuneJune New Member

    I used to crash all the time after meals--major crashes--while I still deal with fatigue, it has never been that bad since my "food allergies/sensitivities" were identified. An allergist helped my through that, it's not enough to just say "stay away from yeast, wheat, soy and citrus" but education in how foods are processed, sometimes the processing will affect a "safe" food in the end product.

    Good luck. June
  11. Annette2

    Annette2 New Member

    My doctor has already told me I have CFS and from what I've read, CFS and FMS are two sides of the same coin. It's not possible for me to nap at work - there is no place to go. I'm not comfortable doing that anyway at work. I'm hoping Madwolf has some help he can give me - some ideas of what it may be. I did drink some caffeine-coffee yesterday - it was half regular, half-de-caff, and it made me crazy all day. I was so hyper I couldn't stand it. I don't ever want to do that again. I don't know what to do. I may call my doctor tomorrow and see what he suggests. Oh, this is so confusing!

  12. elaine_p

    elaine_p New Member

    By all means talk to your doctor. It would be good to get it documented anyway, in case you ever need to go the disability route. Tell him what happened with the caffeine.

    Maybe only decaf coffee would be enough for you? It has some caffeine anyway. I'd probably be hesitant trying it after your experience the other day, but it's something to think about trying in the future.

    Foods are definitely one thing to look at, but the fatigue hits me regardless of what I eat and regardless of when I eat.

    Um, I'd be hesitant to try the nap route too. But if you really do need to, maybe there's an office or supply closet you could use. Or you could go to your car. (I worked with a guy who napped in his car every day.)
  13. jadibeler

    jadibeler New Member

    Elaine P reminded me of what I used to do. I was falling asleep in the ladies room - leaving an impression of my sweater sleeve on my face! Then I remembered the supply room and I'd go in there, lie down on the floor and sleep. My friend would wake me up in an hour. That was before they put the cubicle w/couch in. I have also gone to my car, but in high summer or winter, that's too uncomfortable.

    I'm waiting to hear Maddog's response as well. He should be back tomorrow morning.

  14. jadibeler

    jadibeler New Member

    Apologies to MadWOLF!!!

  15. ozgran

    ozgran New Member

    I do this too and I am not on anything like you lot are taking. At present I am weaning off Zoloft as I am soon to see a specialist who deals in CFS/FM and I want to be able to start his treatment straight away. I do take other drugs for other problems, ie, diabetes,MVP,cholesterol and I do take pharmacy painkillers as I react badly to most prescribed painkillers. Today I thought I felt good. Went up the street and paid some bills etc. Came home and had lunch and thought "I think I might do some patchwork". Got some of the equipment out and then simply "hit the wall". I just had to go and lie down. Went to sleep for half hour or so and have found it difficult to function ever since. Am feeling tired sitting here. Often "hit the wall" straight after dinner at night and take myself off to bed and watch TV from there. This has happened for ages and while I was still at work (just over 2 years ago) used to nod off at the computer if left on my own.I assume it is part of the CFS/FM problem. Love Ozgran.
  16. Annette2

    Annette2 New Member

    Bump for Madwolf
  17. Annette2

    Annette2 New Member

    This morning I remembered reading somewhere that magnesium can make you drowsy. I take a combination of calcium/magnesium. I take 2 pills in the morning and 2 before I go to bed. So this morning I didn't take them. I felt okay. Around 12:00 I called my health food store and asked them if magnesium makes you drowsy. They said yes and I should never take it in the morning. Well, I felt great today since I didn't take it in the morning. So I'm hoping that this mystery is solved. Thanks to everyone for your advice. By the way, I don't normally drink caffeine. I just had a little bit the other day because of a headache. I ALWAYS drink de-caff. After how bad I felt on the caffeine, I'll NEVER drink it again!

  18. hazygal

    hazygal New Member

    It feels sooooo nice to listen to others who've got exactly what i've got. My fatigue happens within seconds and i've got to sit or rather lay down it is a terrible feeling and i also feel out of breath and during this time when i'm having to lay there my breathing is labored. My muscles at that time ache in my arms it is terrible and then the whole day is shot! Because my aches in the muscles stay about an hour or two, then the fatigue stays the rest of the day or two... I am very, very down about this... I've also got hyperreflexes in my knees my Neuro. found and am getting another MRI on my head, but also my neck.... Sometimes I also feel like I can hardly take this anymore, what you've got to keep on keeping. There are people out there who are worse you know? HAZYGAL
  19. healing

    healing New Member

    This fatigue happens to me, too, and I take my magnesium at dinnertime the night before, so that explanation doesn't work for me. My fatigue hits around 2 pm but not every day. It is crushing, staggering. It stops me in my tracks, but while I become nonfunctional (I work fulltime), I manage to stay somewhat upright and awake somehow. I have FM, not CFS.