Wake Up Feeling Like I'm Dying.

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by joeb7th, Jan 14, 2007.

  1. joeb7th

    joeb7th New Member

    This morning perfect example. More and more feeling like this.

    On top of all the Fibro-CFS type symptoms I have...I wake up and feel so weak and sick and a real strong feeling all inside that I JUST CAN'T DESCRIBE and that everything is going south.

    I can focus on this feeling and still not describe it right...but whatever it is...it is sending a signal to my brain that I am getting worse and it's internal.

    This indescribable feeling is like my internal organs or hormones or other blood sugars or something is just so out of whack that I shudder and shake and feel like I am going to just collapse. And that feeling of course triggers anxiety and depression ... how wouldn't it?

    But please, I hear nothing but "here, take these tranquilizers, and you need to get on antidepressants..."

    LOOK....yes, I am anxious, yes I am depressed...anybody can see that and a nurses aide can tell me this and offer me some emotional band aids...but I NEED TO KNOW WHAT IS GOING ON INSIDE OF ME....THAT IS MAKING ME FEEL LIKE I AM DYING HERE....the accompanying anxiety and depression are side issues!

    But in my small town area and a closed knit doctors society...and with them not finding anything in the sacttered studies and the local ER checking my fever, heart and blood and never finding anything...the nightmare is feeling like this at home and knowing it will do no good to go to our ER anymore and the few doctors I have had here have said there isn't anything more they can do for me.

    Today's Parade magazine had a large article on what is currently right and wrong with America at this time...and guess what one of the top areas they mentioned as being wrong in this country... Medical care and the shortage of doctors and hospital beds!

    Man, I just want to go to a good hospital and stay there until all the studies are done in one to two weeks and the doctors LOOK AT THE RESULTS AT THE SAME TIME so they can eliminate their own contradicting guesses and views of what's wrong with me in front of each other.

    But, something "is" horribly wrong inside of me...and I don't want to hear that I just need a good psychiatrist anymore.

    I have finally found my first endocrinologist...but my appointments with her are coming once every 3 months! Only had my first one so far.

    I want her to look at my glands and hormones and glucose and everything else like this. But it took me ONE YEAR to get my first appointment with one of these type doctors.

    My exhaustion factor having to do this all on my own...and everything taking torturously long times, is just another incredible weight. Just blowing it out here everybody. Allow me that. Thanks for letting me do this. JB
  2. Catseye

    Catseye New Member

    What I did for the dying feeling:

    ate tons of veggies
    took Kreb's Cycle Chelates - minerals
    took Teitelbaum's Daily Energy Enfusion powder- has vits, mins and aminos
    lost of EFAs, fish oil, flax oil, primrose oil


    These are a start! Get them or their equivalents; alot of the dying feeling is just malnutrition! Your body cannot work without raw materials!! It may take a week or 2 to notice improvement but I wish I could go back in time and tell myself this! I have had more than 2 years worth of "dying feeling", I hope I don't get it again!

    good luck

    karen

    I went to every "ologist", too. Don't assume you're getting everything from diet even if you're eating well. Your body is too broken to process food into a usable form so you get easily absorbable supplements until it heals. I take this stuff and lots more everyday or I will feel like I'm dying again.<br>[<i>This Message was Edited on 01/14/2007</i>]
    another thing that makes me feel like I'm dying is milk, cheese and yogurt. Give them up immediately! You feel good at first and then the next day you feel bad and then 3rd day you feel like you're dying.
    <br>[<i>This Message was Edited on 01/14/2007</i>]
  3. yorkielove6

    yorkielove6 New Member

    Hi JB,
    I understand every word!! When I hit lotto, I'll get us both into a good hospital for a total work up. I think it all comes down to money. If I had enough money I could make a doctor pay attention to me, and run all the tests, but medicaid certainly isn't going to pay for all of that. I'm getting worse everyday, and I honestly feel I don't have alot of time left.
    I think tomorrow I'm going to stop taking my water pills, and my potassim pills and see if I feel better, maybe it's some of the meds, perhaps they are wrong for me. I guess I have to be my own doctor.
    Meanwhile, when I see the heart doctor on the 17th, I'm going to be strong with him, and not allow him to "blow me off" as a nut case.
  4. joeb7th

    joeb7th New Member

    Copied and pasted your suggestions and mailed it to myself.

    Hope I can get this stuff and give it a try. JB
  5. Cromwell

    Cromwell New Member

    I know this feelinjg is horrible, but it will pass. I started taking SAMe for elavating the mood a little.

    I have been waiting a year for an endriconologist to call me back FOR an appt. here in New York, so I saw a FP who specializes in Endrocrine as a side, and he was OK.

    I am taking the epsom salt baths at least daily too and this does help.

    People have no idea how this dd makes us feel. Try and keep faith and know this will be a flare and will subside.

    Love Annie cromwell
  6. Catseye

    Catseye New Member

    I almost forgot, the first supplement I took that helped with the dying feeling was N Acetyl Cysteine - an amino acid the liver needs to make glutathione. I don't know how much you know about cfs, but it's vital to bodily function. I would take it about 3-4 times a day. The first dose was in the middle of the night between 2 and 4 and it would make waking up alot less like hell.

    Try a low dose first to make sure it won't make you worse, like 100 mg and build up to about 500 mg each time or whatever you can handle. And look at my "what worked for me" in that section above. Mine is about #89. I explain about glutathione and some other things, it's very long and involved but it will help you.

    I know EXACTLY what you're going through and I went to the dumb ER several times and got labeled a nut, and let's not forget the big, fat bills I got even though they couldn't help me.

    You don't have to feel like this, you just have to keep reading!!

    karen
  7. pw7575

    pw7575 New Member

    No clue why it happens but it is the scariest thing ever. I really hate waking up with that feeling. Not sure what to do to make it stop. The others (especially Karen) have some good suggestions. I might try what they have said to do.

    Just wanted you to know you are not the only one.

    Take Care!
    Pam
  8. wrthster

    wrthster New Member

    I am really sorry to here this, I have felt that way for several months now and it is extremely scary. I know it is tough in a big town, let alone in a small town, but I think it is really important if you can find a CFS/FM or Lyme Literate Infectious Disease Doctor. I know that is asking a lot, but I think so many physicians are missing the boat, and I know when I get that dying feeling it is always infection related.

    If you absolutely can not find one or get to one, try the NAC and Oil of Oregano enterocotted capules. Grapefruit seed extract which is only about $7 the organic one in a white and red bottle is also very good. Best of luck. Add a good priobiotic 2 hours or more away from eachother if you use the oil of oregano caps or grapefruit seed. But try to find that doctor if you can, especially if you are that sick. My prayers are with you.
  9. ulala

    ulala New Member

    when you wake up feeling so poorly? Sometimes when I feel like I'm paralyzed, can't even reach for the TV remote my blood pressure is very low, 90/48. I have something called Proamatine, which is for low blood pressure. If I take it in the middle of the night I wake up feeling better.

    Best wishes!
  10. Catseye

    Catseye New Member

    Hey joeb, I think someone may have suggested this in your old post so I didn't include it before but it's too important for me to trust my brain fog, maybe they didn't.

    Another thing that is severely lacking is the mitochondria fuel. They are the cell engines and when they are starved, your body needs all the available energy to run the important stuff at the expense of the not-so-important. In other words, you'll feel like you're dying. So just in case you haven't seen it, you have to read this. These got me out of bed in 2 days, along with the other stuff. It may be the jump start your body needs to give you some relief.

    It's "CFS is Heart Failure Secondary to Mitochondrial Malfunction". It mentions a few supplements you can pick up at the health food store: coq10 (oil based one), magnesium (easily absorbable form like mag glycinate, taurate or malate), acetyl l carnitine, ribose, vitamin B3 and nadh.

    http://www.cfids-cab.org/MESA/DrMyhill-373.pdf

    And you might as well look at this one, too. These were both really helpful. This one is shorter:

    http://cheneyoncfids.blogspot.com/2006/05/cardiomyopathy.html

    Get some electrolyte solution, too, not gatorade. I'm sorry I'm all disorganized, I've been reading too much the last few days and got lax with some amino acid pills and my brain fog is kind of bad. It'll be better in a couple of days.

    These things I've listed in my posts should help anybody with the dying feeling as they get to the heart of the matter.

    karen
  11. LostHearts

    LostHearts New Member

    I was shocked to read your post. Not always, but very often I too feel like I am dying. There is a weakness that is beyond the fatigue, a feeling that something is draining out of me and, believe it or not, sometimes I'll get a series of flashbacks of different periods of my life. That's what I hear that some dying people get.

    Something deep inside me seems to be giving up, no matter how hard I fight. Tonight I feel OK, but sometimes for weeks that feeling of dying is so strong I actually think about making a will.

    After reading the posts here, perhaps it is something more of us feel and may be a part of our illness.

    You are not alone, believe me. It is so very strange, isn't it, to feel this way.
  12. lv2sing

    lv2sing New Member

    I think I know what you mean, I feel this way EVERY morning. For a while, I was so whacked out in the am, I was actually going into what I call a "half" sleep paralysis. I've had full ones before, & they are scary as h---! I will actually be half paralyzed, & half awake, & have this deathly feeling, that if I cannot "work" on getting awake all the way, that something bad was going to happen to me, but I didn't know what. It is really hard to get any body part to move when you are mostly paralyzed, but I would use all my effort to make myself come "out of it". Then I would be terrified to go back to sleep.Then I walk around for a while, etc, then manage to fall back asleep. But every day when I wake up, I just feel like I cannot get up & do another day. My husband woke me this morning for church, & I was only doing it for him. I didn't feel like going, I was wiped out. Then the sermon was on doing our best for the church, etc, & getting involved. My husband automatically starts saying how he (meaning we) need to be going to classes etc, to get involved. I wanted to scream & say, "so get involved", I'm not stoping you from doing anything. Maybe he's embarassed, & feels he has to make excuses for me. I barely have the energy to function each day, I'm on disability, I know I'm depressed, who wouldn't be when their life isn't a life? I'm so sick of being sick!! I want to scream. I not only have the feeling of dying, I'm already dead!! This d--- disease is killing me, along w/ the other 5 I have... I just don't care anymore, I'm tired of fighting for my life, a life I don't have. So in prior messages from everybody else, yeah, I feel like crap!
  13. lizWolf

    lizWolf New Member

    I know this is an old post, but just for the record, I'd like to add that feelings like these can be a food intolerance. I have felt like that for years... on all sorts of anti0depressants and what nots, until I realized that I reacted to refined sugar, all milk and milk products and any refined grains.&lt;BR&gt;
    &lt;BR&gt;
    On days when I eat only veggies and home cooked meat, free of preservatives and additives, I feel fine. But then I succumb to the calling of an ice cream cone and I am done for... &lt;BR&gt;
    &lt;BR&gt;
    After I eat refined flour products like donuts or cake, I get extremely tired to the point that I must sleep for an hour or so in order to be able to function.&lt;BR&gt;
    &lt;BR&gt;
    I just wanted to share that here to maybe give other sufferers an idea to try out. Doctors never came up with my solution, but when they tested me for allergies afterward (to prove me wrong, I guess), I was indeed highly allergic to milk, wheat and most preservatives.&lt;BR&gt;
  14. 3gs

    3gs New Member

    I could not believe it when I read this. It is exactly what I have been wanting to post but didnt know how to say it.&lt;BR&gt;
    &lt;BR&gt;
    today is the worst,just feel like my body has given up and can barely move. it is a hard thing to describe.&lt;BR&gt;
    &lt;BR&gt;
    I have wished the same thing,but me in a hospital and find out. my doc is useless.
  15. kat0465

    kat0465 New Member

    But i always wake up feeling like death also. i can go to bed feeling somewhat Human. and as soon as my eyes open, i wish i would have just stayed asleep!!&lt;BR&gt;
    &lt;BR&gt;
    shakey, nauseaus, headaches,pain,have that Im dying feeling and i dont know why:(&lt;BR&gt;
    then by the afternoon, if i dont do much of anything, i will usually start to feel a little better. and by bedtime. the feeling is pretty much gone.&lt;BR&gt;
    &lt;BR&gt;
    don't know what it is about sleeping, you would think a nap, or a good 6 to 8 hours of sleep would help....Nope ;/&lt;BR&gt;
    Kat
  16. TalimSoul

    TalimSoul Member

    WOH this is an old post, but I still want to add my two cents. I just woke up this morning feeling like I am dying. I have no idea why. It feels so weird!!! Like somebody is going to turn off a switch on everything and it will be over. I am taking new meds but also have a lot of anxiety problems thanks to my dumb ass doctor who fucked with my meds and now I'm stuck on anxiety meds. -_-' I am taking adrenaline stress end. Helps me a lot. But I really think it's anxiety. I really do. Just an intense form. I was just dreaming thinking that I was going to die any moment, woke up feeling the same. :S
  17. jaminhealth

    jaminhealth Well-Known Member

    I wake up feeling like I was beat up...I believe it's LOW cortisol, I sleep pretty good, some nights better than others. I don't take many meds, so the meds sure can mess us up.

    My issues are nasty pain in MOST joints and aging hasn't helped.....so I'll see my integrative MD soon and talk about cortisol AGAIN. Pain can wear the body out. jam
  18. mbofov

    mbofov Member

    It might be something as simple as low potassium. People with CFS are prone to low potassium because we are so inactive, and our bodies need to move to properly use potassium. I had had that feeling before, waking up very tired and lethargic - it was different than a crash - just felt horrible and no reason why. And it wasn't until I started Freddd's of Phoenix Rising B12 protocol, that I read about low potassium. My energy picked up when I started taking folate (not folic acid, which is synthetic) but then I hit a brick wall, felt horrible, and realized it was the same feeling I had had before, only now I knew it was due to low potassium. And sure enough, the symptoms dissipated when I started taking potassium daily, now take 400 mg. a day.

    Also, Catseye has some excellent suggestions for nutrition above - eating lots of vegies will help potassium levels but you still might need more.

    And my potassium levels on blood work were always ok, though on the low side.

    Mary
  19. TalimSoul

    TalimSoul Member

    oh dang I didn't realize I was on a CFS page. :S Sorry. Was just googling feeling like I'm dying. I had energy but... idk.. I also have adrenaline fatigue and taking stuff for that... should be taking two pills but only one.. I think I need to take the 2nd one. lol Still very very scary. :S

    With Adrenaline Fatigue your cortisol is low in the morning and high at night.
  20. inna2010

    inna2010 Member

    I HOPE MY STORY HELPS OTHERS

    These had been my symptoms for more than 15 years before finding the cure: I would wake up in the middle of the night trying to “restart” my body and come back to life… feeling numb like my body stopped and almost died but for some reason my brain decided to use the last drop of energy to wake me up. Another thing was heart palpitations that would last a few days, from time to time but I guess that was minor compared to the first issue.

    Doctors gave me no answers… I have very little trust in conventional medicine at this point.

    I was feeling alone and scared. I started to educate myself in nutrition and healthy living in general. The first step was to avoid chemicals, buy organic whole foods and avoid restaurants and processed premade food in general. I would be more careful with cleaning products, VOC from paint, furniture etc, cell phone and wireless routers, electromagnetic radiation, x-rays and other ionizing radiation, etc. I even found a source of well water (no fluoride). I was also exercising and taking good quality supplements like minerals, vitamins, super foods, etc. I WAS DESPERATELY FIGHTING FOR MY LIFE with whatever tools I had.

    Stress, poor quality food, lack of sleep, etc would accentuate the problem but they were NOT the main cause. After many years of making good changes about my nutrition and lifestyle (which I still follow) THE PROBLEM WAS STILL THERE! And please do not blame it on anxiety! Anxiety and panic attacks can be serious mental health problems but if your case is similar to mine, chances are it is PHYSICAL and fear is a normal consequence and may be an aggravating factor, not the main cause.

    Electrolyte imbalance had always felt closest to the truth; however, I was being careful with my calcium/ magnesium/ sodium/ potassium intake. The situation had become frustrating to say the least. Something else was missing

    I continued searching in the area of natural holistic medicine and one day I came across the subject of salt. At that moment, all I knew is that salt makes me bloated and it felt somehow like a poison to my body. After some research, I learned about the difference between table refined salt (including sea salt) and natural unrefined salt. I read about Himalayan salt and how it has over 80 trace minerals in it and why we need those!!!!! Apparently the soil is depleted of these (and many other) nutrients and organic or raw doesn’t help much in this area. On the other hand, seas/ oceans gather them; however, they are also full of pollutants. The answer appeared to be ancient salt (formed after an ancient sea dried up) that has all the trace elements without the pollutants. 2 types of salt sounded good to me: Himalayan salt (it has to be original, I forgot the brand or from mercola.com which is also original) and Redmond Real Salt. The last one has less trace minerals, I thing 60 instead of 80 for Himalayan.

    I bought both and threw away my table sat (sea salt). I used Himalayan salt first. I HAVE BEEN FREE OF ANY SYMPTOMS SINCE THE FIRST DAY I USED IT. I don’t even use much, maybe ½ tsp in all my food. I was so excited about this, I bought this trace minerals supplement from Whole Foods that has ionic trace minerals. Now I alternate between Redmond Real salt and Himalayan and also use the supplement from time to time. Please try this, it is inexpensive and it works!! I couldn’t even sleep on my left side, now I am a normal person again, it’s hard to describe how happy I am after all this suffering