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Feel on the verge of death

Discussion in 'General ME/CFS Discussion' started by Xhale19991, Feb 19, 2014.

  1. Xhale19991

    Xhale19991

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    My symptoms have been so bad these past few days. On several occasions I was contemplating going to the ER, but I know it's hopeless. When you have these intense and serious flareups, what other options do you have? I'm just so lost right now. I feel like I'm literally dying and yet no doc can help me.
     
    PennyIA, Sammy, rosie26 and 1 other person like this.
  2. minkeygirl

    minkeygirl Narcissism = lack of self awareness

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    The only option is to just hang on and get through each hour of each day. And then you get through it. IMO going to the hospital would be a bad move, given the stories we hear about what happens to some people.

    One thing that helps me when I feel horrible is to try to do something to help myself instead of feeling like a victim to my disease. It can be something small, but something that I control vs letting everything control me.

    During one of those times I ordered some Acyclovir from overseas and finally had some results. That was huge. Another time, I got on my computer and finally after years of having no supervised treatment, found a doctor. It's slow going, I feel horrible a lot of the time but it's better to feel bad while trying treatments, then to not try at all.

    So hit up Google and start hunting for some help. I put in my city, then every thing I could think of, ME/CFS, integrative, naturopath, methylation, functional medicine. Something will pop up.
     
  3. Ayaju

    Ayaju *****

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    Hi Xhale ~

    Where abouts are you? Just curious. There's no info in your profile? Maybe if you shared more about yourself, you wouldn't feel so alone. Just a hunch. Actually, I'm struggling to find the right words right now. I wish I could help you. I hope you pull through this; I know many of us simply don't. I hope you can somehow focus on the things that you love and that bring you joy! And I hope you can somehow nourish your body and take as good care of yourself as you are able.

    I don't know anything about your story and so I don't know what to suggest that might help?

    I've been challenged with this crazyass disease for 16 years. I was bedridden at first, but super-slowly progressed, and things keep getting a bit better. Had to be my own doctor, of course, and just keep learning everything I can about health and healing.

    Another thing that really, really helped me was that this dd (damn disease) forces you to go within, forces you to be still, and that is a major opportunity to grow spiritually and personally! I so totally and entirely know that there is a gift in every problem! You hang in there long enough and you usually get to find out what that gift is! I call my CFS the beginning of my Awakening into Consciousness now! And it's damn well TRUE! I can honestly tell you that despite the symptoms, lack of having "a life", the isolation and loneliness, the fear that I'll never be restored to full health... I am the happiest I have ever been in my life! And I plan on getting even happier, damn it! :woot:

    I want that for you too! I want that for everyone!

    Please keep posting. Talk your little heart out if you can.

    Warmly, Judy
     
    Xhale19991, leela, Wayne and 5 others like this.
  4. Allyson

    Allyson *****

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    I know that feeling Xhale and it is terrible

    Have you been tested for POTS? - One of the main ME symptoms
    Sometimes treating that alleviates a lot of the worse symptoms and so yu feel better and also get a rational explanation for your symtoms so at least it makes some sense to you

    good luck

    Ally
     
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  5. minkeygirl

    minkeygirl Narcissism = lack of self awareness

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    I don't have POTS. It can be a symptom but not necessarily. Sometimes I just feel like shit and there is nothing to do but wait it out and reach out to people who understand for support.
     
  6. SOC

    SOC Senior Member

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    @Xhale19991

    Can you be more specific about which symptoms are making you feel "on the verge of death"? Someone might be able to make some suggestions for things you can do to feel at least a little better if we had some clue. Feeling like you're literally dying is a severe description, but not very clear.

    Is there an emotional component to your feeling like you're dying, or is it strictly physical?
     
    Last edited: Feb 19, 2014
    Wayne, Snowdrop and helen1 like this.
  7. rosie26

    rosie26 Senior Member

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    :hug: Xhale19991

    So know what you are describing. I suffered it without any help. Doctors had no idea how ill I was. Severe ME does feel like it is going to kill you.
    I thought my heart was going to fail, it was hardly beating. And the intense weakness/crushed-ness in the body was extreme. It is physical the symptoms.

    Wish I could be there to help you get through it. I hope you have someone there to help you with meals. If you are able get to the doctor go. I found them useless though.
    Hang in there. My symptoms have improved from those years - there is hope - hold on. xx
     
    PennyIA and SOC like this.
  8. Allyson

    Allyson *****

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    there ARE definitely things you can do if it is POTS to make you feel better - often quite quickly - Minkey girl and it is all logical - may be check out this thread for a few useful tips to start with

    @Xhale19991

    http://forum.notcrazy.net/index.php?topic=9571.0


    good luck

    Aly
     
    Wayne likes this.
  9. Xhale19991

    Xhale19991

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    It's rather difficult for me to describe how I am feeling. I have a hard time explaining my symptoms to doctors. This has been a real challenge for me. When at "attack" sets in, It almost feels as if my body has been poisoned or has gone into anaphylaxis. I get very warm, my vision gets blurry, eyes bloodshot, nausea, extreme fatigue, POTS, headaches, rapid heartbeat, brain fog/ memory loss, flulike symptoms, the list goes on and on. My body is just falling apart. A year ago I was competitive boxer, training 6 days a week, now I cant walk for more then 5 mins without my post exertional malaise symptoms kicking in. My hair is falling out, skin looks terrible, body aches all over the place, stomach/GI pain always present. Hell I can't even take a warm shower without it throwing me for a loop and exacerbating all my problems.The amount of symptoms I have is just ridiculous . I know they are all related to the same "condition", but it is overwhelming nonetheless.

    As I was saying before, how I feel varies fairly significantly by the hour. I'm tried every diet/supplement under the sun to try and pinpoint anything that could be causing these "episodes" but its all been to no avail.

    To the person who was asking where I was, I am in Arizona.

    Thank you for the support.
     
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  10. SOC

    SOC Senior Member

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    :(:hug: Sounds like it might be a major PEM episode. It's possible that you are putting yourself in a continuing push-crash cycle by doing more than your body can handle --- yes, even if you're only doing a small fraction of what you used to do. It's one of the many curses of this illness. Pacing is the key. Some of us have learned to pace better by using a continuous HR monitor -- one with a chest strap. Search PR for more info.

    The anaphylaxis feeling and quite a few other of your symptoms could be from some form of orthostatic intolerance, possibly including low blood volume. There are things you can do to help there, too. Again, search PR.

    You can also go to the Home page for PR and click the Treatments tab for some articles that should help.

    You need to get yourself to an ME\CFS specialist pronto. Any one of the top docs could help you feel somewhat better than you do now with basic treatments and management advice. You can worry about more specialized treatments -- Antivirals, antibiotics, immune treatments -- when you've stabilized a bit. But [putting on Mom voice] don't dawdle! The sooner you get good treatment, the more likely you are to achieve remission and all the best treatments take time, so don't waste time up front doing little-to-nothing.
     
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  11. maryb

    maryb iherb code TAK122

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    Yes please do as SOC says.
    and rest rest rest - if even having a shower is too much listen to your body.
     
    Sushi, justy and SOC like this.
  12. xks201

    xks201 Senior Member

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    If you are peeing a lot it could be diabetes insipidus. Extreme fatigue can be low cortisol or thyroid also.
     
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  13. adreno

    adreno 3% neanderthal

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    @Xhale19991 ,

    Sounds like severe inflammation. You could try an anti-inflammatory to see if some of the symptoms calm down. The best one I know is curcumin.

    Have you been tested for infections? How about a hormone panel?

    Did you have any episode of poisoning prior to this? Mold exposure?
     
    Last edited: Feb 20, 2014
  14. rebar

    rebar

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    I feel for you Xhale, the way this illness cycles, with cycles within cycles. Little let up and too much to obsess about. I'm sorry that your struggle seems overwhelming, I've been there. One thing you can count on is change. What ever allows you to pull away, even if for a short period of time I would recommend, and ANYTHING that is a risk stay away from. There have been times where I could meditate and times where I couldn't. Limit ALL physical activity, control as best you can emotional drama. All on this site have lost something because of this illness, I lost a career teaching carpentry, I lost the ability to enjoy my passion for motorcycling. ETC. ETC. ETC.
    BUT, things are improving! You will cycle out of this difficult phase!
    You sound like me at my worse. HANG IN THERE XHALE.
     
    justy, Xhale19991, SOC and 2 others like this.
  15. Xhale19991

    Xhale19991

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    Thanks for all the help guys.

    I made an appointment with the Open Medicine Institute in a few weeks. Hopefully they will be able to give me some answers and relief.
     
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  16. minkeygirl

    minkeygirl Narcissism = lack of self awareness

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    @Allyson I'm not saying that, I'm just saying I don't have it, it has never been an issue and sometimes you just feel like shit.
     
  17. peggy-sue

    peggy-sue

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    I really hope you get some good help from the Institute!
    You sound as if some decent supplements would help a bit, I hope they'll get you sorted with something.

    Many of us have been where you are now, it seems neverending, but it will get better, slowly with plenty rest.

    You rest far more lying down than sitting down.

    When you are horizontal, your heart doesn't have to work against gravity to get the blood around your body.

    When you are sitting, you don't have the use of what is called the "muscular pump" in your legs helping the blood get from your feet back up again.
    You have this when you are walking - it's just the muscles expanding and contracting normally around the blood vessels, which physically shoves the blood up - it stays up because there are valves in the vessels.

    I have edited and re-written this post, because I said the wrong thing about the Institute, I got it muddled with somewhere else. Purple very kindly noticed and corrected me.:hug:
     
    Last edited: Feb 20, 2014
    Xhale19991 and Wayne like this.
  18. Purple

    Purple Bundle of purpliness

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    The Open Medicine Institute is in the United States - California - http://openmedicineinstitute.org/. Perhaps the DVD you mention is from the Optimum Health Clinic - which is in the UK?
     
  19. peggy-sue

    peggy-sue

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    Doh. You are absolutely correct, Purple.:redface:
    I shall edit and amend my post immediately! Thank-you so much for seeing through my stupidity and pointing it out!
     
  20. rosie26

    rosie26 Senior Member

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    The poisoned feeling throughout the body is part of the severe symptoms you get with severe ME and all the other symptoms you describe. There is not a lot of "let up" in symptoms in the severe years, it is full on. I hope others can give you the name of a ME doctor who may be able to help improve your symptoms.
     
    justy likes this.

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