August 8th, 2018: Understanding and Remembrance Day for Severe ME
Have you heard of our Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance? Please join Jody Smith in observing this day and honoring the 25% of those with ME/CFS who are most severely ill.
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Hospital

Discussion in 'General Treatment' started by Pink, Feb 22, 2018.

  1. Pink

    Pink Senior Member

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    I keep thinking if i go to one of the good hospitals here (ny/nj) maybe they can help me. Im so weak, dizzy, heart races, cannot eat.
    But then I worry they will just dismiss it all as anxiety.
    Has anyone gone to the hospital or Er for cfs and actually gotten help?
     
    pattismith, mrquasar and Countrygirl like this.
  2. jesse's mom

    jesse's mom Senior Member

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    @Pink I am in the Deep South and have been in excruciating pain and very ill, went to the ER and just waited until I got up and went home. There is something I read... A letter from a Dr. It states that ER docs are trained to stabilize patients. The BEST help i have gotten is from my neurologist. He was genius when he labeled my main trouble in the body something he could measure. Turns out the first virus I had caused spinal stenosis; something he could measure and show as a scientific fact. the longer I have been sick and seen how the scientific community views this illness the more I realize how lucky I am to have just happened upon him right away.

    Now, if you need IV fluids and nausea medication right now.. I suggest you go to the ER. You can die of dehydration!
    They might not help with ME/CFS, but if you have life threatening issues they sure can help stabilize you until you can get the DR with the right fit for you.

    An example is at one point my son almost drank himself to death, with alcohol. I went to New Orleans where he lives and took him to the ER. They didn't put him in rehab (he went a few days later), they stuck an IV in his arm and gave him what the nurses called a banana bag full of fluids and mostly potassium. He felt so much better we went to dinner within 3 hours. I am smiling as I give this example because we are all so human, so fragile at times. Now my son is Fine and good.

    I am so sorry you feel so bad.
     
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  3. Pink

    Pink Senior Member

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    Thank u @jesse's mom , I think you are right they can't do much to help.
    It's just a hope and a wish.
    My general Dr is very kind and understanding but she really knows nothing about cfs & other thanordering a ton of blood work, that was mostly ok she had no ideas. I'm low on some vitamins, have high eosinophils, and slightly low blood volume.

    I went to a rheumatologist who said it might be fibro, but that's just a dx when Drs don't know what's wrong with you. He gave me cymbalta and sent me on my way.

    I just get so tired and dizzy & it gets hard to breathe at times.
     
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  4. jesse's mom

    jesse's mom Senior Member

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    ok, I have to admit I take medication for sleep and for pain.
    AND i believe the woo woo stuff helps me as well. Breathing is so important! I also get so tired and dizzy. Feels as though my entire core is shaking. At times it scares me so badly all I can do is cry... until the thought reminds me to just breathe. When I just lay down and breathe and focus right there sometimes it passes faster.

    There is a book I recommend; How To Be Sick, by Toni Bernhard. (She has what we have, ME?CFS and what I want... acceptance of what is right now.)
     
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  5. Pink

    Pink Senior Member

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    I get very scared when I feel so sick. I'm also scared of living like this for the foreseeable future.
     
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  6. Shoshana

    Shoshana Northern USA

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    This sounds right to me, @Pink

    If you cannot take in and keep down, enough fluids, you should go.

    She is right that the ER only makes sure you are alive.
    But if you need something to stay alive, then we must go.

    They really do not investigate our ongoing, other health problems.

    I wish you did have some better medical help.
     
    Pink likes this.
  7. Shoshana

    Shoshana Northern USA

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    It is definitely scary sometimes, living like we do! Feeling so terrible and sick. Hard to breathe and eat.

    And it also is scary, to wonder all the time..... will I ever get any better? How much worse, and when?
     
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  8. jesse's mom

    jesse's mom Senior Member

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    I know love, just try to breathe and stay in the moment.
    Look me and Shoshana are right here with you in spirit, and online.
     
  9. Countrygirl

    Countrygirl Senior Member

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    @jesse's mom and @Shoshana have given you good advice @Pink . I can only speak from the experience of UK hospitals and it is not generally wise to enter them if you have a diagnosis of ME as they make their dislike and disbelief of ME patients very clear. Is it any different where you are?

    The hospital environment also makes ME much worse in my experience as it is so noisey, toxic and there is no chance of sleep or rest. If they can help you in an emergency situation then obviously you must go, but I don't think they would help a problem that is part of ME. They can also misinterpret the eating problems and food intolerances we have and label us with anorexia which in the UK could trigger a sectioning as Bob has experienced and described on his thread. I don't think this happens with you though, but am not sure??????

    If you do have to go in, take someone with you as an advocate if you can.

    I am sorry you are struggling so much just now @Pink and I do hope you you feel an improvement very soon. This illness is a beast and a half!

    You have friends here @Pink and we are routing for you. Please rest all you can and wait for a better patch to start which it does in time. Meanwhile, please keep posting as we willl be worried about you. :hug:
     
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  10. jesse's mom

    jesse's mom Senior Member

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    @Countrygirl , they don't section us.. they just leave us in the overcrowded waiting room to die!!! (overstatement).
    they will treat dehydration and such then discharge.
    the ER here won't do anything for pain unless they can measure it; like a broken bone.
     
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  11. Shoshana

    Shoshana Northern USA

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    @Countrygirl was right though, that they might relegate us to any number of their own biases, including eating disorder, or anxiety, as Pink said....

    And yes, the environment there at the hospital is awful, and we wait for many hours, with lights and noises, and other illnesses and chemical fumes, etc....

    And @jesse's mom is right about pain....

    BUT IF you cant take in enough fluids, or have different pain than your usual, then we still must go.
    To take care of yourself, for your sake and for your childrens.

    If you can, I would try to increase fluid intake, rather than go.

    Sending caring to you @Pink !
     
    Last edited: Feb 22, 2018
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  12. Sushi

    Sushi Moderation Resource Albuquerque

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    Sorry, I don't remember who you have seen in the NYC area, but some of what you describe fits with dysautonomia. Have you thought of looking for a doctor who specializes in that area? Here is a link to a map on the Dysautonomia International site that notes dysautonomia doctors as red dots. There are several in the NYC area: http://dysautonomiainternational.org/map.php
     
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  13. Countrygirl

    Countrygirl Senior Member

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    Oh dear! Not so good then! Here they aim not to leave you propped up in an unsupported chair in A &E for more than four hours. Hopeless for someone with ME, of course. Then, once they discover that you have a diagnosis of ME you are treated with outright contempt. Better than being sectioned though for faulty illness beliefs,. Personally, I would rather die at home than enter a hospital again unless they get some education. The trick is to try to stop them discovering you have such a diagnosis in the first place but it is written on the medical record so it is difficult to hide it.
     
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  14. jesse's mom

    jesse's mom Senior Member

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    @Sushi I just looked at that map. Three patients in my area... no Drs. Underdiagnosed? I have every symptom and this is the first time I have ever even heard of this!!!
    @Pink ... you doing ok?
     
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  15. Sushi

    Sushi Moderation Resource Albuquerque

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    Dysautonomia is most probably underdiagnosed and is certainly underrepresented by specialists. It is hard to find a specialist in one's own area...and even harder to find a really knowledgeable one. I happened to be lucky in that there was one in my city, but that is rare and I had looked for one in every other city I lived in earlier.

    Edited to add: while the majority of ME/CFS patients have symptoms caused by dysautonomia, the causal chain is unknown i.e. chicken or the egg. Most likely the ME/CFS trigger came first, but dealing with symptoms caused by dysautonomia can improve our quality of life. Some methods are simple and non-invasive like upping your intake of fluids and electrolytes significantly and trying compression garments, (knee socks, stockings, abdominal binders) if you have difficulty standing. Drug therapy is much more complicated as it proper testing and both would require a very knowledgeable doctor.
     
    Last edited: Feb 22, 2018
  16. Shoshana

    Shoshana Northern USA

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    I want to let people know that another member's name is similar to mine, so watch for my colorful bird avatar, and the first part of my name has a letter O.
     
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  17. Shoshana

    Shoshana Northern USA

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    Thanks for that link @Sushi

    Do you mean "support stockings or socks? "
     
    Last edited: Feb 22, 2018
  18. Diwi9

    Diwi9 Senior Member

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    Oh my gosh...there is only one @Shoshana...the one with an "O"!!! :)
     
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  19. jesse's mom

    jesse's mom Senior Member

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    @Sushi I was still working as a hairdresser when I was pregnant with my 14 year old. I had this strap that went under my belly... It felt so dang good I wore it constantly. I need to dig that out... thanks for the reminder!
     
    Sushi likes this.
  20. mrquasar

    mrquasar Senior Member

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    I'm also scared to go to another doctor and be dismissed, or be misdiagnosed and given a treatment that makes things even worse. I've lost confidence that doctors have any clue what I'm dealing with, but I don't really either.

    How do I get out of this cycle?
     
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