Severe Fatigue Flare

Discussion in 'Fibromyalgia Main Forum' started by failte, Apr 30, 2003.

  1. failte

    failte New Member

    Hi All, I'm new to this board. I have slid back into a terrible fatigue place. Sleeping 10 - 14 hours a day & tired all the time. I have a difficult time getting out of bed in the morning & feel my best at midnight. I have just had blood work done & am hoping there is something found that can be helped. I've been off work for 15 years & had made a reasonable life for my self. I was exercising & going to a pool regularily. I quit smoking in '90. Lost over 50 lbs in '96. Now I am losing the battle. I haven't been able to exercise in 2 months & have put a few lbs back on. I don't have the energy to eat yet much & I'm gaining weight. I have CFIDS & FMS. I have been slipping for the past 2 years & have ended up in the horrible place. I know the things I need to do to get back on track but I don't have the energy. I live in Ontario, Canada & there are no specialists in my area. I'm very frustrated & am losing hope. I'm crying as I type this note. I am so fed up with this DD. I don't know what to do other then listen to my body & sleep or rest. I'm told that this will pass but it has been so long. Thanks for listening.
  2. allhart

    allhart New Member

    welcome to the board everyone here knows what your going threw and how frustrating it is,you will find alot of info and prople here that will help you ,
  3. T-BO

    T-BO New Member

    Hi, I live in winnipeg, manitoba, which is right next door to you. I just wanted to inform you that there are a few specialists in ontario.
    If you go to the co-cure website and click the good doctors list, you will find a few docs there who specialize in CFS.

    I personally have not tried any of the specialists yet but am going to see dr. anil jain on May 15. He is located in Ottawa area.

    Another good website to check out is "compassion in action". Apperantly, they are into treating people with CFS and have a good success rate. Dr. Jain, the doc that I will be seeing, is also involved with compassion.

    If you would like to check out these websites, just type in the names I provided, in a search engine.

    I hope this shed's some light on your situation!

    Peace and God bless,

    T-BO
  4. failte

    failte New Member

    You do live next door. Thank you so much for the web sites. I have located them & put them in my favorites. I will follow up on them ASAP. It's good to find others who are coping with the same problems. It gives one hope.

    failte
  5. jkd7058

    jkd7058 New Member

    I've been going through about 2 weeks of the BAD stuff myself. Even when I get a good nights sleep. I also have the "up and ready to go at midnight" syndrom. I always think "Why can't I feel this good at noon?" DH thinks I'm crazy sometimes when I start cleaning or doing a load of wash in the middle of the night. He can't understand that I have to do what I can do - when I can do it. There'd be no point in trying to sleep, I'd just toss and turn.

    I'm new to this board myself. I can't wait to hear what others have to say.
    Jan
  6. failte

    failte New Member

    Hi Jan,
    I'm sorry you're in the bad place too but it's a comfort to know that I'm not alone. It is so weird to be awake and raring to go at midnight. I am usually able to get to sleep between 12:30 & 2 AM. It has been suggested to me that I set my alarm & get up at the same time every morning no matter what. This is supposed to regulate my sleep. My body won't cooperate & I just cannot get out of bed. It's usually between 10 & noon that I drag out of bed. I usually have a 2 hour nap in the afternoon. It seems like ones body clock gets out of whack. It does get frustrating.
    Take care,
    Sandi
  7. rick31797

    rick31797 New Member

    I have been dealing with this illness for 7 years, just found out 2 years ago what was wrong.I am 46yr old Male and also live in Ontario, near Kingston.If you are close to Toronto there are a few good Doctors there, that might beable to help you.It sounds like you have did alot of great things to improve your health.Another thing you can try is to get into a support group if there is one in your area., they will have a list of good DRS,,

    Rick
  8. failte

    failte New Member

    Hi Rick,
    I've been dealing with this for over 15 years. I was a support group leader a few years ago. I thought I was on top of things but this flare has got me down. I live an hour from Toronto, in Hamilton. The problem is that I don't know of any good Doctors in Toronto. There are none in Hamilton, the Support Group isn't aware of any & my family Doctor doesn't know of any. Perhaps it's time to call the College of Physicians & Surgeons of Ont. I could also try 411 to look for Doctors. There is also the Arthritis Society. Thanks for your suggestions. You've got me thinking, of course I'm awake now & feeling better then I have all day. If anyone knows of a good Doctor in Toronto please let me know. I think there is a Good Doctor list in this site that I must check out. Hope you're doing well.
    Sandi
  9. failte

    failte New Member

    That's what I seem to be doing, sleeping all the time & getting away with it. That's great that you're in a program & they pick you up. That was hard for you but you did it. There is nothing like that in my area though. At this point I think I'd be willing to give something like that a try. It's too bad that you're having trouble with your sleep now. I'd like to get back to my old routine of being in bed & asleep by midnight & getting up at 9:30 am. I didn't mind having a nap in the afternoon. I was able to get to a pool or do treadmill exercises at home. Now I'm just so exhausted all the time, I just don't have any energy & everything I want to do requires a little energy to get started. I'm sorry that your Dad is in hospital. This fatigue we share seems to contol our lives. I found a couple of Drs. in Toronto & will try to get a referral. I'm so glad I joined this message board. Take care.
    Sandi
  10. rick31797

    rick31797 New Member

    HI....I go to a Doctor in Toronto,she has been very good to me,and has did alot of testing that other Drs dont even bother with..You dont need a DR referal to see her you just need to call her.She charges a fee for all the tests she does, becuase OHip wont cover them...She test for Toxcity in the blood etc.There is also another DR in Toronto, not sure if she is taking anybody...IF you want the names and Phone Number send me an email and i will give you more info on them..
    Hope this helps...

    Email kyzer@ihorizons.net
    Rick
  11. layinglow

    layinglow New Member

    Welcome to the Board. I am so sorry you are feeling so badly, and feel you have been declining. I know how hard this is. Perhaps there will be an explanation in your lab results that may explain the fatigue, as something that can be corrected.

    I, too have CFID's and FMS. I have managed to get the FMS symptoms to a level I can deal with. I am still battling this unbelievable fatigue. Have you tried any treatments for fatigue, meds, supplements, vitamins? Perhaps with a little supplementation you might be a bit less fatigued and able to do a bit of very light, easy does it pool exercise.

    I know how frustrating the lack of appetite, eating little, and still seeing weight gain, crazy isn't it? It seems to be one of the typical symptoms. Our systems are so dysregulated.

    Is it possible that you are discouraged and depressed that this is going on two years? I don't know how you feel about antidepressants. I have been on them 2 months, it has made a great improvement, and will slowly wean back off them in a month. That combined with B-12 Injections, CoEnzyme Q10 and (hopefully soon antiviral therapy) is what has helped me as of late. I at least have a few good hours during the day.

    I hope you are feeling better soon failte, and that you can find something that helps, or just begin to come out of this long flare. Best wishes, and Welcome to the Board.
    LL