Discussion in 'Fibromyalgia Main Forum' started by kcleejackson, Oct 24, 2010.

  1. kcleejackson

    kcleejackson New Member

    Someone please help!
    I have severe cfs, so bad that I am totally bedridden. I have 25 and just found out I am pregnant. We were sooo careful but birth control failed my husband and I.
    I am so scared that pregnancy or post delivery is going to literally kill me. I am unable to even walk to the mailbox due to crashing and fatigue which is daily. How am I going to do this? Is this going to kill me? Can anyone give me some inspiration and/or positive information, I am TERRIFIED!
  2. TigerLilea

    TigerLilea Active Member

    Hi kclee - Some women actually feel really good during pregnancy despite having CFS. For some reason that science can't yet explain, a lot of their CFS symptoms disappear during the pregnancy. I would think it has something to do with hormones.
  3. karynwolfe

    karynwolfe New Member

    I think it has something to do with hormones, too. If XMRV is involved, since it is known to respond to hormonal shifts, maybe pregnancy could be responsible for temporarily turning it off? Or perhaps it just alters the immune system in general.

    This is a topic I've literally had nightmares about, I'm sorry you're having to LIVE it! You absolutely must discuss this with your doctor. If your symptoms do not improve (though there's a very high chance that they will during the course of your pregnancy), I can only imagine there'd have to be some type of extra precautions your doctor would want to take, perhaps even a caesarean instead of a delivery, if you have cardiac involvement.
  4. hermitlady

    hermitlady Member

    Sorry to hear about your unexpected surprise, I hope you can shake the scared part of your feelings, and focus on the big picture. You must take care of yourself!

    I have also read that symptoms lessen during preg. You'd be amazed what a woman's body automatically does when pregnant and giving's an incredible experience. You would probably be fine w the help from a good doc.

    Personally, I would seriously think about the future, after the baby is born. Like an above poster mentioned, whether you will be able to care for a child. Babies are one of life's greatest gifts, but they're a lot of work, and of course exhaustion. Also, as the yrs go by, there are different responsibilities and stressors that a parent must weather.

    Believe me, I never expected parenting to be so hard. My kids are teens now w spec needs. I didn't get the major symptoms of CFS and FM until the youngest was in Kindergarten.

    Stress is a huge factor in my illnesses, it is a huge energy drain for me (and I often don't cope well emotionally). I hope I'm not scaring you, I'm just being honest. I've had a lot of guilt and bad feelings due to my struggle w mothering/illness issues. I wouldn't feel right if I didn't share these thoughts w you.

    I didn't have family around besides my husb to help w childcare. Do you have people close by that might be able to help out after the baby arrives and into the future? That would be a big plus in stress relief!

    I'm assuming that you don't work, since you are bedridden. I haven't worked in 15 yrs, I chose to be a SAHM...but now I don't think I could work because I get so weak and fatigued 90 percent of the time. Yuck.

    I hope you will get some helpful info here, good luck to you and keep us posted.

    xoxo Hermit
  5. kcleejackson

    kcleejackson New Member

    Hey everyone, thanks for the replies. I went to the ob/gyn and he was NOT helpful. I told him about my situation and he looked at me and said "You dont look sick to me" CLASSIC. I was in a wheelchair and had to lay down the entire appointment, what an idiot.
    He didnt know anything about cfs, but I have yet to find a doctor who does.
    I have a 3 year old who I had before I got sick and I have some help with her bc I am not able to care for her and I am assuming we will have to hire help with this new baby. My main fears are post delivery and how bad I will prob crash. Of course not being able to care for my children is devastating but there isnt anything I can do about that right now. Have been hoping someone would find successful treatment soon and I wouldnt have to worry about it much longer.
  6. Sacajawea2

    Sacajawea2 Member

    I'm sure despite your legitimate concerns, there is a bit of hope and joy inside you...focus on that.

    I can't type much right now but just wanted to encourage you. Yes, definitely you need to hire help. If friends or family offer to help, let them. If they are in shock and not supportive, try to give them space and hopefully they will have compassion.

    I gave birth three times w/ CFS/ some other health issues that made it very difficult.
    Only one pregnancy was planned (I thought I was over my health problems after a remission) and I didn't even know what was wrong with me until baby #2. I had a brief but wonderful remission before I was pregnant with my second child but as soon as I became pregnant, symptoms returned.

    My biggest regret is that I breast fed each one (now knowing it can be passed through breastmilk). My OB was not helpful but not terrible, either. When he saw it was more than he could deal with, he found a rheumi who was at least somewhat helpful. I had different OB's each time.

    A friend of mine was diagnosed w/ cancer (non-hodgkins lymphoma) while pregnant and she was so sick it didn't seem possible things could work out...oh that was scary but she made it, and baby is five now and fine. Kina is right, you'd be amazed at what your body can handle.

    I can say I had both a lot of support, but also some negative ones that thought I was crazy or stupid not being able to control getting pregnant. But I had to see all my children as blessings, as that's what they are.

    Now they are 19, 14 and almost 12...all very smart, very good students, wonderful and so thrilled to be alive. Two show some signs here and there of potentially ending up w/ health issues but not enough to stop them from fully engaging in life. I haven't always been bed ridden, but a fair portion of my adult life has been spent very sick.

    Since this wasn't planned, don't allow yourself the wasted energy or guilt in what has already happened. I don't even ask myself hindsight questions...what's the point? Which one would I give back? None! Now I'm a single mom...I still have a lot of help.

    You may not always be as sick as you are now. I hope you can find a doctor who is more helpful or at least willing to learn about your situation.


  7. kcleejackson

    kcleejackson New Member

    Thank you SJ. I hope I start having a remission soon, I am honestly shocked I could even get pregnant as ill as I am. I am happy about the baby, more scared than anything but I know once I see the baby it will hit me.
    I have a lot of people, even doctors, think I am crazy or its all in my head. It makes me irritate b/c I lay here in bed all day sooo sick and tired and they think I am just nuts.
    Stress makes us worse for sure, I have got to try and stay calm.... which seems impossible but I really need to try.
    Thanks again!