have you ever felt so ill that you might not wake up in the AM?

Discussion in 'Fibromyalgia Main Forum' started by GKTLA, Jul 5, 2006.

  1. GKTLA

    GKTLA New Member

    I battle every night with feeling so ill (weak, exhausted, achy) that I honestly wonder if maybe I will die in my sleep. It's so strange to me that we can feel so bad yet not be dealing with a terminal illness or something that is easily labeled. When my husband asks me to explain how bad I feel, all I can say is that I feel so weak like I could have a seizure (even though I've never had one)...hard to explain it, really. I don't always feel this bad, but have been lately. It just makes you really wonder what the heck is going on in my body that is not easily detectable?
  2. laura81655

    laura81655 New Member

    Yes, I have felt this way and I'm sure many others here have too. What type of treatments are you using for your symptoms, any medications that you have tried? I didn't turn the corner until I started to take a low dose, 10mg. of hydrocortisone which I got from the Fibromyalgia and Fatigue Center. I still have pain, but it is a lot more manageable. I hope you can find the help you need.

    Laura
  3. kellyann

    kellyann New Member

    Hi,
    I know how you feel. Sometimes I wonder the same things. Lately, I wonder if I'd even care if I didn't wake up. If it weren't for my kid's I don't think I would care. I am hoping that I am cured someday soon, since being diagnosed with Lyme disease and taking all sorts of new medications for it.
    Have you been tested thourghly for Lyme disease? It can hide out in your body for many years before being found. You might want to check it out. I really hate it that you feel so bad, but I can so relate.

    I read your bio, what were you treat with antibiotics for 2 years for? Did it make you better?

    Your fibro friend,
    Kellyann
  4. Zzzsharn

    Zzzsharn New Member

    Honestly, there have been times that I've gone to bed and "hoped" I didn't wake up.

    Years of unrelenting pain really wreak havoc on your mind.

    Z
  5. IntuneJune

    IntuneJune New Member

    Yes, I have.

    June
  6. Cromwell

    Cromwell New Member

    I think many of us have felt scared to even go to sleep due to feeling that same way. This too will pass. Try redaing or listenign to books on tape as they can calm you some. Lavender oils in the bedroom help calm too.

    Love Anne Cromwell and feel better dear
  7. turtlelou

    turtlelou New Member

    I often feel like I won't have the energy to wake up. i'll just fall asleep and never wake up but not die - some sort of exhausted coma. I've had cfs for about nine years and I always wake up.
  8. kholmes

    kholmes New Member

    I'm glad you found this site and posted. You'll find wonderful people here and a lot of good information.

    I imagine many people on here can relate.

    I am housebound with CFS and have had quite a few nights like this over the last two years, especially when I overdo a little bit and my symptoms worsen.

    A couple of years ago, I read Lance Armstrong's book, IT'S NOT ABOUT THE BIKE, and remember him talking about his bout with cancer, and having nights when he wasn't sure he was going to make it. But what makes CFS so frustrating is the mystery behind our symptoms. What could POSSIBLY be making us so sick? Or what could possibly so disabling but be undetectable by standard blood tests?

    I can definitely relate to what you've been going through, and I hope you find some helpful treatments.

    Kholmes




    [This Message was Edited on 07/05/2006]
  9. butterfly83

    butterfly83 New Member

    It's morbid i guess but sometimes i do wonder. It just seems amazing to me that I can be this disabled and in this much pain and not be dying or something else awful.
  10. GKTLA

    GKTLA New Member

    Thanks for the responses. It's sad to me that other people can actually relate to this feeling.

    Even though I've been battling these illnesses for years, I recently found this message board. I've been to at least 30 doctors (regular MDs and many specialists) and had so many different tests and exams except for a spinal tap...everything comes back normal!!

    I saw Dr. Teitelbaum in April 2005 and started on an elaborate treatment plan. I was feeling better but got side-tracked by a really bad flare-up of endometriosis. I was never able to get the sugar-free diet down pat...I was feeling like my sugar treats were the only thing left that I looked forward to...very warped thinking, I know.

    I was having okay days every other day even with our move cross-country but then about 2 weeks ago couldn't see out of my left eye and was feeling really dizzy and had to go to ER (where they said I had "hyperventilation syndrome"!!!). I had been on a new birth control pill for a couple of weeks when this happened so my ob-gyn told me to stop (I already have an IUD in for terrible cramps but I needed something more). I have felt really, really bad since that episode and missed several family functions. I am still really unsteady on my feet...very weird.

    I'm going to talk with Dr. Teitelbaum's staff tomorrow and try to get back on track with his protocol despite the enormous cost. He felt that my constant bladder infections and antibiotic use (I was taking Macrobid daily) and major stress just shut down my system.

    I'm on:
    Armour Thyroid 60mg
    Cortef 10mg
    Dexedrine 5mg
    Zoloft 100mg
    Klonopin 5mg (at bedtime)
    Xanax .25mg (at bedtime)
    about 8-10 Advils a day for menstrual cramps

    Osteopath here put me on Doxycycline this past Wed. to see if it helps clear up a potential inner ear infection that may be causing the dizzyness.

    I could go on and on with my story of meds, treatments, illnesses, episodes, etc.

    To date, I have not seen a major improvement happen in my life...
  11. nextdimension

    nextdimension New Member

    I have found that I hate going to bed at night because I know there is a high probability that I will wake up the next day. I hate living like this and I feel everything I care about slipping away from me and feel totally helpless to stop it.
  12. Cinlou

    Cinlou New Member

    My worse time for pain is at night. I take my meds and get to thinking that I might be dying. It is such a horrible feeling. I start to thinking about being sicker then my DX are. Like they have missed something and I'm dying.

    The meds I am taking do help with pain and stiffness in AM, but oh so gradually by night I am in pain..and endless cycle....

    I agree it makes me wonder too just what are the doctors missing?
    Cindy

  13. LouiseK

    LouiseK New Member

    I went through that a lot for a while. I literally felt too sick to go to sleep. I didn't feel like I would be going to sleep but rather losing consciousness. I would actually become rather agitated (well, in my head; I couldn't stand up or anything)as though I was hanging on to life by not falling asleep. It happened when I had a really hellish combination of pain and exhaustion OR when coming down with something, even a little cold.

    I also agree with others, sadly, that sometimes the idea of waking up in the morning to start all over is more dreadful.

    Today I was crying and wringing my hands and thinking I just can't stand waking up every day to a stranger -- ME -- is this a person who can stand up today? Eat? Go out? How long will I be upright before I collapse?

    Rest. I hope for you lots of peaceful rest.