New to board: Combating guilt

Discussion in 'Fibromyalgia Main Forum' started by mamarose, Aug 10, 2003.

  1. mamarose

    mamarose New Member

    Hello fello sufferers/ This is my story and question:
    I have been experiencing moderate symptoms of FM for a couple of years. About one year ago the symptoms worsened and I started having symptoms of CFS as well. It started with a terrible flu which literally kept me bedbound with severe pain in mostly my legs and back. In addition I had terrible fatigue. I slept nonstop for a week. I was never quite right after that. I have a history of depression and take meds who's side effect helps me sleep. I seem to be sleeping soundly. (Although when I wake up I am in terrible pain.) I take Provigil to stay awake during the day. Without it, I could not stay awake all day without a 2 1/2 hour "nap". Even with taking my 200mg dose every AM I am pooping out by 5 PM. If I take another dose later in the day, I'm afraid I won't sleep at night. I seem to be building a tolerance to the provigil.

    I am a teacher and have four children. It is very difficult for my family to understand why I am so fatigued and lay down after dinner. I struggle with feelings of guilt. My husband is usually really great, but I know he feels put out sometimes too. What do you suggest?
  2. Hinemoa

    Hinemoa New Member

    you are so exhausted and that you have to work but for me this exhaustion is a given and I'm afraid that sometimes I have to sleep for two or more hours during the day. Especially if I've had a bad night.

    The trouble is if you fight it you keep crashing. It's NOT your fault, please don't feel guilty...I've been there, done that.


  3. Iggy_RN

    Iggy_RN New Member

    My fatigue has worsened since ABX, I have no energy at all anymore. I could use some advice on this as well. I am not on any med to stay awake, I figured since Im on pain meds, I did not know If the doc will combine the two? SOrry you feel this way, its hard when one use to do so much... I will keep you in my prayers, Love Iggy
  4. AnnG

    AnnG New Member

    There is NOTHING harder than being a wife and mother who has a disease. There simply is no good answer, is there? We just returned home from a road trip and I am in terrible pain. Yet, who unpacks and cleans up, who is dealing with the car that needs to be repaired, the insurance claim on my daughter's broken-into car, etc..... You guessed it!

    FM and CFS are horribly unfair! Have you ever just wished they were "visable" diseases? I sometimes want braces on my legs, swollen joints, open wounds, ANYTHING to get people to believe this is real!

    I'm sorry I'm no help to you except to say that I wish we lived close so we could help each other out. My thoughts and prayers are with you! Love, Ann
  5. Shirl

    Shirl New Member

    Hi Rose, welcome to the board. Sorry you are having so much trouble with the fatigue.

    I have FM, for 20 plus years, but do not have CFS. I can relate to the fatigue, but do not get it often, nor does it last longer than a few days at a time.

    The FM started when I had a bad bout of pneumonia, seems we quite a few of us have been stricken after a virus, or an auto accident, or many other things, even a stay in the hospital for some.

    I will leave your questions to those that have CFS, as I can only tell you what I do for the FM and related symptoms. I mainly take supplements, herbs, etc, drugs do not agree with my system all all.

    Again, welcome to the board.

    Shalom, Shirl

    BILLCAMO New Member

    do your best not to feel guilty....... you did not ask for this/these dd's. & you did nothing wrong to get it/them. all you can do is the best you can !!!!!! even though that probably is'nt as much as you used to be able to do , you still do your best !!!!!!!!! my prayers & many peoples prayers on from this board , are with you !!!!!!!! welcome to the best site on the internet for these dd's..... i can only speak for myself..... i know i have to fight feelings of guilt , but i also know i did'nt cause my new challenges..... i just do the best i can !!!!!! blessings !!!! billcamo.PS...... EDIT...... JUST REMEMBER... YOU ARE NOT ALONE...... IF YOU EVER WONDER ABOUT THAT..... JUST COME TO THIS SITE !!!!!!!!
    [This Message was Edited on 08/10/2003]
    [This Message was Edited on 08/10/2003]
  7. teach6

    teach6 New Member

    I am a former teacher with both CFS and FM. I wasn't even dx'd with these illnesses until I had stopped working from pain and sheer exhaustion. I was literally walking around the school with my eyes closed! Every once in a while I would peek to make sure I was not going to run into something.

    I had no choice but to stop teaching. It was a difficult decision because I have always felt that teaching was my calling, and I did a good job. But my body refused to cooperate and I could not go on.

    If there is any way you can cut back on your work or take a year off I would highly recommend it. My symptoms were so severe by the time I finally saw a doctor who knew what he was doing that I became fatigued and short of breath from just sitting up for about 30 minutes.

    I have improved a lot since then, but don't believe I will ever be able to go back to teaching. It has to be one of the most difficult jobs around, and there is so little respect any more.

    I hope you are able to come up with a plan that will work for you.