Fatigue Help Me Understand?

Discussion in 'Fibromyalgia Main Forum' started by nice2meetu, Mar 31, 2006.

  1. nice2meetu

    nice2meetu New Member

    I have been diagnosed with FMS since 2002. They originally thought I had RA but the blood showed I didn't. Then they thought Lupus. No ANA in my blood. So then they said "FMS".

    I experience pain on a daily basis. Some days its horrible, other days its tolerable, but ever present. I have tons of symptoms but the most debilitating for me is the symptom of fatgue. When I "crash" its like a plu was pulled and I experience the following:

    1. Extreme sleepiness like I am going to fall over
    2. Slight breathing problems (Had EKG Nothing heart related)
    3. Coordination off
    4. Very dry mouth sometimes sore throat
    I think I could handle this if I knew how to stop from becoming too exhausted but it seems to happen too suddenly sometimes.

    Anyone get this? How do you handle it? Do you take naps?

    Thanks ever so much!
  2. mollystwin

    mollystwin New Member

    Yes I get this kind of fatigue too. Usually after working more than one day in a row. Sometimes I can handle it sometimes not. I don't have breathing problems, but my coordination is off and I always have a dry mouth.
    On days when I don't have to work (I work three days a week in a good week) I always take a nap! On bad days I need to return to bed after being up for an hour and then I sleep anywhere from 4 to 8 more hours. On a good day my naps are only 1 to 2 hours. I avoid bad days by pacing myself. When I feel better I do too much even though it seems OK at the time, I pay later!
    Sometimes I crash for no apparant reason!
    Good luck!
    dar
  3. nice2meetu

    nice2meetu New Member

    I think I need to rearrange my work schedule to work every other day. I can't quit even though it would be better for me to do so. I need the money too much! Disability would not give me enough to live on especially being a single mom of two. So I keep going like the energizer bunny :)
  4. alaska3355

    alaska3355 New Member

    Sorry to ask that question, but the crushing fatigue sounds like it could be CFS. I hope you can get some help and feel better....take care. Terri
  5. mamaeagle0103

    mamaeagle0103 New Member

    I was just telling my husband this week that the pain is horrible, but in and of itself, I can take meds to cope with the pain. It is the fatigue that really gets me!!! The fatigue is most depressing. I have really never been able to find a way to deal with it. I have even started taking hydroxycut just to try to get a little more energy. Pretty sad when even that doesn't make a difference. Anyhoo, just funny to hear that today as I was just talking about it myself this week.
  6. zerped

    zerped New Member

    The symptoms you describe are all too familiar. For the last few days I've noticed that when I sit on the sofa with my first cup of coffee I feel "normal," but then as I'm finishing the coffee it feels like I'm inflatable and someone let the air out of me. All my energy just "leaks out."

    All of the symptoms (except for the breathing problem) I get after "doing too much." I'd add to that list (for me) a problem with speech (after decades in broadcasting, theatre and nightclubs, I never had any problems with speech till the disease thing happened). Anyway, the only sure-fire prevention I've come across is resting up enough. 30 min. of bed rest after ANY activity, and no activity for longer than 2 hours is something I try to stick with each day.

    The other thing that helps is either cocoa powder or coconut oil, or both. If you do a search under those two, you should find some instructions on how to take them. I'll put a dash of cocoa powder in my decaf and get
    some good, healthy energy (not the wired buzzy feeling of too much caffeine). Hope this helps!
  7. mjwarchol

    mjwarchol New Member

    I understand what you mean. I can deal with the pain, but when you have no energy it's the worst. I used to take Cylert for the fatigue and it was pulled off the market. I am now taking Provigil. I am not sure it helps, but there is not a lot out there for the fatigue. I take Co Q10 and 5HTTP and Pantothenic acid and stress B vitamin to help.

    Most times if I get the severe bout of fatigue it's because I did too much, or it's a sign I'm getting sick from sonething.

    You just have to try and see what things cause it for you and try and adjust. If the fatigue is there it's your bodys way of telling you you need to rest, listen to it.

    I wish I had the answer. Hope you feel better.

    M J
  8. chloeuk

    chloeuk New Member

    Hia,

    I have been going on about this for days, I made the discovery when I went to rheum. Basically there are a few basic things to suggest a dignosis of POTS, they are that your resting heart rate must go up by 30bmp when standing for at least 10 mins...not sure whether if you have a very low heart rate that it is the same..looks like most people with pots have a high resting heart rate.

    Basically with POTS what happens is when you stand up your blood pools in your legs so therfore making your heart have to work harder to pump the blood to the rest of your body....most pots sufferers also have low blood pressure(bottom part) top is hr.

    There seems to be a link between cfs and pots and some of the symptoms caused by pots are the same as cfs...like fatique, brain fog, dizziness...and lots more...look up pots and heart on yahoo and you will get more info...hopefully I will be able to let you all know more when I see cardiologist on thusday.
  9. mrstyedawg

    mrstyedawg Member

    I do not have fibro. The fatigue, sleepiness, and breathing difficulties sound like CFS. Hopefully, this is not the case with you.
  10. Sophiaz

    Sophiaz New Member

    http://www.hostingphpbb.com/forum/index.php?mforum=dysautonomia

    www.ndrf.org

    Both have message boards and links with articles to help you sort things out.

    Sometimes we just have to be OUR OWN ADVOCATES...no easy feat when you are disabled and or exhausted all the time.
  11. nice2meetu

    nice2meetu New Member

    Thanks so much for posting. I cleaned my car out yesterday and tried teaching my 5 year old son to ride his bike without the training wheels and today I can hardly function. I am so tired , breathing is labored, and I feel fluish. I think I have CFS also. I need to make another appointment at the Dr. and discuss this with him. Thanks again.
  12. taniazcatz

    taniazcatz New Member

    I don't know if this will help you at all, but you are not the only one who experiences those symptoms. I wish I could give you some direction on where and how to find relief and if nothing else ways of coping with the sysmptoms. I can't. Ive had this for 6 years, at first no one knew what was wrong with me. I was diagnosed with FMS right after being diagnosed with discoid lupus ( the form of lupus that is on the skin only, it hasnt yet gone systemic) Im 34 now and it seems like each day is a roll of the dice. You're never sure how you will feel on a given day. I have the terrible fatigue like you, and I also have trouble sleeping at night. Mainly because I get into a position when I sleep and then the pain starts because I've been in that position too long. Sometimes I can't catch my breath after doing the most basic thing, I have a drink with me at all times because I have terrible dry mouth. I get through each day reminding myself that things could be a lot worse, the bad days make me long for and appreciate the better days. I will share something that has helped me. For the last year Ive been taking a pretty strong muscle relaxer, Flexeril, at night about an hour or so before I want to go to bed. My doctor has me taking 3 pills everynight. It helps me sleep, but more than that and for reasons I cant really explain its helped me overall. My doctor says that it somehow alters brain chemistry which allows for clearer thinking, better memory recall, more productive sleep processes. YOu may want to talk to your doctor about that and see if would be an option. Good Luck, I hope you feel better. -