What has been your experience with emergency room doctors?

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by MicheleK, Nov 7, 2012.

  1. MicheleK

    MicheleK Member

    I was recently sent to the emergency room and hospitalized. I absolutely detest going to an emergency room. I have yet to come upon a doctor who has taken my ME, CFS, FM, or POTS seriously.

    It blows my mind at how they behave, especially when the heart rate monitor is going crazy, my blood pressure drops everytime I move my body, and I have fevers, chills, mind blowing headaches etc. How in the world do they just ignore the fact that I actually have these illnesses in the light of everything presented to them in person?

    This time around I found out after I recieved test results once I was home, that I had reactivated HHV4, 5, & 6 and a natural killer cell rate of 4%! Also we think I had encephalitis.

    So what did the superhero doctors in the ER diagnose me with? Hyperthyroidism! Yep! Hyperthyrodism! This inspite of the fact that you cannot get a reliable thyroid rate or many other values on a patient with a roaring infection going through their body.

    My family always insist I go to the ER. I know the symptoms scare them and they feel the best place for me is in the hospital. But, really, I feel the last place I need to be is in an ER full of "book smart" doctors who have no experience with the devastation ME & POTS bring upon the human body.

    So I am curious. What kind of experiences have you had in the ER or hospitals?
  2. jaminhealth

    jaminhealth Well-Known Member

    as I was having a panic attack and didn't know what was happening, scared the beegeebies out of me....

    Took a long time to pay for the costs left to me....

    I keep a supply of Lorazepam for the just in case times...

    Best advice, stay out of the ER...
  3. sunflowergirl

    sunflowergirl Active Member

    I've been in an ER once, for the flu....couldn't stop throwing up so around 2:30 a.m. I went and they hooked me up to fluids. Got a cold bed, not enough blankets, and a HUGE bill. I swore I would never go again.

    My mom was in ER at least 4 times. It's a situation always of wait, wait and wait some more.

    How are you feeling now? Encephalitis is VERY serious.
  4. misskoji

    misskoji Member

    I am so sorry you have been so ill, and I've been thinking of, and praying for you. It's good to see you post again. :)

    I agree with you, the ER is the absolute last place I want to be. I just don't understand how they can see, read, feel....all the symptoms we have in front of thier very eyes, and still deny us? UGH.

    Sending you my love and thoughts,
    misskoji
  5. ...I couldn't agree with you more! I just hate to hear how ill you've been and what you've been through!

    I've been to the ER many times in my life (my medical history reads like a gothic novel! Everything from hemorraging a week after childbirth, to severe dehydration due to food poisoning, passing out, etc)... but I now avoid the ER like the plague. I too have had some horrible experiences with the ER, Michelle. I am so sorry you had to go through that recently!!

    A few years ago, I woke up with such intense pain in my chest and the slightest movement took my breath away because the pain was the worst I've ever had in my chest. I thought I was having a heart attack... so did my husband, so he called an ambulance. They put the nitroglycerin under my tongue and heart monitors all over my chest and abdomen... when I got to the ER, they ran all their regular tests, which didn't show anything.... kept me in the hospital for a couple of days then sent me home.. Turns out I had 2 ribs that had popped out of place where the ribs and spine come together, and apparently, because of the nerves involved, it causes intense pain in the chest and can mimick a heart attack. But I didn't find this out from the ER docs or any traditional doc... I found this out from my chiropractor who I just happened to have an appt scheduled with a couple days after I got home from the hospital. Thankfully, my chiro was able to put the ribs back in place with his adjustments. This is just ONE example of how little help theER has been for me. I have many more horror stories of my ER experiences (much worse than the one I just mentioned) but it would take too long to go into the details.

    I've told my husband that the only way I will go back to an ER is if I'm bleeding to death or can't breathe at all. The ER is really only good for SOME things... as long as they don't have to think outside the box and it fits into their "cookie-cutter" mentality. I suppose if I really thought I was having a heart attack again, I would go just to be sure. But like you, Michele, I hate the ER and just don't have much trust or faith in the ER system anymore.

    And like I told my husband the other day, when I was having some chest pain that wouldn't go away and he and my daughter wanted me to go get checked out... the ER can actually do me more harm than good because of my ME/CFS and their lack of knowledge of it... for instance, I can never again do a physical nor chemical stress test, which is part of their protocol if they suspect heart issues. And some of the chemicals they would give me would make my condition worse. So, unfortunately, I feel like the hospital isn't an option for me, with very few exceptions.

    If I ever got severely dehydrated again, though, from food poisoning, I would go just to get the I.V. fluids in me... the irony is that my husband works for a hospital (the business end) and my daughter is in nursing school. But even they understand that I'm between a rock and a hard place because of my ME/CFS.

    So, Michele, I understand only too well what you've been through at the ER... AND I am so sorry! That's the LAST thing you need. But if you have encephalitis (not sure how that affects the body... will have to look it up), that may be one of those things that HAS to be treated at the hospital... I don't know...

    Just know that you are in my thoughts and prayers, Michele! Hang in there! And please let me know how you're doing! Prayers going up... and sending lots of love your way!

    Blessings and Gentle Hugs,
    Shel



    [This Message was Edited on 11/08/2012]
  6. MicheleK

    MicheleK Member

    It's sort of being between a rock and a hard place, deciding whether you need to go to the ER. It is important for any vital organ problem or major breaks or bleeding etc.. However what I hate is the family gettting upset at me if I do not go to emergency because THEY feel helpless and uncomfortable with what is happening, even if they have never sat down and read up on POTS or ME etc..

    We end up in the ER for them most of the time. Then the ER doctors treat us with such little dignity, it only adds to the suffering one is already going through.

    I am glad I have a caring family. I realize many do not. However, I do not want to have their fears keep putting me in situations I do not wish to be in. So from now on I will not be telling my kids when I am going through this sort of thing, if I can at all help doing so.

    When I feel better I am going to have a heart to heart with my kids and thier wives. I need to feel that I don't have to hide from them when I am at my worse. I need for them to read up on POTS and ME for sure! Two of them are medical personell and have been taught to think a certain way. I need for them to calm down and the only way they will be able to do that is to read up on the classic symptoms of my illnesses.

    I also have to respect what they are comfortable being presented with, but I hope in love they will do the little bit of reading I can provide them with to educate themselves on me as an individual.. If they would educate themselves a bit, they would be far less prone to push me into doing something I don't feel comfortable doing.

    My daughter in law, whom I love dearly, is an ER nurse. If it were up to her, literally last year I would have been sent to the ER every other month!

    This last time I was alone at home and my son came to get me so I could rest at their house and be watched. My daughter in law, in trying to get me to go to the hospital said it was not fair to them that I would not go to emergency. Now I feel like I cannot ask when I am alone and feel I shouldn't be, to stay with them for a day or two. Now I feel it is placing my daughter in law in an uncomfortable position in her own home. My son does not feel the same as her, but that is his wife and his home life. I do not wish to disturb that.

    This is one of the situations patients finds themselves in due to lack of proper education in the medical community. I wish to thank the late Dr. Reeves and his cohorts who previously ran the department on CFS at the CDC for this mess they put us all in.

    End of rant. I am still angry. I will find a way to turn this into a positive once I am better.

    I am improving on the antivirals but am on total bedrest and cannot have any company. That also means not seeing my little one year old grandson, Max. I haven't seen him now for 2 months. But I tell myself that there are many grandparents who never get to see their grandkids as they may live far away or due to divorce issues etc. And I do know I will see him again. I just hate missing this time with him when he is changing and growing daily. Oh well, one more loss due to these illnesses.

    This too shall pass. Thanks for listening and caring. Hugs, Michele
  7. ... to rant and feel angry. I can totally relate... I hope it helps to be able to vent here... because MANY of us can understand what you're feeling and going through... and can empathize and feel angry right along with you... as long as we don't STAY angry.

    But what we feel from time to time is a sort of "righteous" anger because we are dealing with a very unfair, unequitable situation. Not just ourselves, but SO many are suffering... and dying from this disease. This is our LIVES we are dealing with... we used to be productive, active people... contributing to our family and community before we were struck down with this VERY disabling and serious illness that brought our lives to a standstill! We enjoyed many close relationships with friends and family... and have had to lose those as well. AND to top it all off, we have to deal with a medical establishment that is CLUELESS about our illness and treats us either with disbelief or contempt... or BOTH! So why SHOULDN'T we be angry from time to time? Especially after dealing with something like what you just went through, Michele... totally understandable... We just have to be sure we don't let the anger fester and stay with us... For me, my faith helps me come back to a peace once again... as I trust the Lord in ALL things... to bring beauty from ashes... and work all things together for good...

    Still, we're human and the physical suffering is never easy... and it helps to have at least SOMEONE who understands... that's why I love this board. My husband and my youngest daughter do TRY to understand... and they have read everything I've given them to read on my condition... and they even admit that it totally makes sense and matches what my reality has been as far as my health is concerned. But I am still alone much of the time, like you, Michele. And have to deal with the effects of this disease... hidden away most of the time... but I still hold onto hope... that in God's timing, I WILL get most if not all of my health back... I'm hoping for you too, Michele...

    I also understand the difficult situation with your family. Mine too frequently insist that I go to the ER... even my parents, if my husband calls them to ask for prayer because I'm doing so bad (or having severe chest pain, etc). But I tell them that if I feel God urging me to go, I will... otherwise, I refuse... because they can do me more harm than good with my ME/CFS.

    But I agree that giving them stuff to read up on ME/CFS can only help. I REALLY like Dr. Myhill's book (that you can print off the internet... she gives permission for us to do that). I believe it is the BEST and most exhaustive explanation of ME/CFS that I have come across so far. I gave excerpts of the book to my husband, daughter and parents to read. I know my husband and daughter thought it was very good and helpful... just not sure if my parents got to read it yet. But if you haven't read it yet, I encourage you to. I will have to go back and look, but I can let you know which pages I had them read so you can tell me what you think. I think you just have to google drsarahmyhillUK and somewhere on her page you can click on her book and then download it and print it. I printed on both sides of the paper so it didn't use so much paper. I have it in a binder now and am halfway through reading it... it really is a blessing. She gives her protocol too, which is very similar to the mitochondrial dysfunction protocol. But I was really struck by how much this doc REALLY understands our disease and what it does to us. VERY informitive... I now understand things about this disease I didn't understand before... So perhaps it could bless you as well and help your family understand better...

    I continue to pray for you, Michele... that you can continue to rest and heal and will be much better soon...

    Blessngs and Gentle Hugs,
    Shel

    [This Message was Edited on 11/10/2012]
  8. Michele, I also understand the heartbreak of missing seeing your little grandson. Although I am not a grandma yet, my little nephew, whom I adore, will be turning a year old next month... and it breaks my heart that I hardly ever get to see him... even though he lives only 10 minutes away. For the same reasons you mentioned... that he is changing so much... and I'm missing all that... My mom and Dad watch him during the day cause my sister is a school teacher... so they are always telling me the cute things he is doing or saying... and part of me hurts because I'm missing all that.

    I was the one who was praying for years that my sister could finally have a child, since she has had infertility issues for years. And I was the one who thought I could babysit him whenever my mom wasn't able to... But turns out, that I'm the only one of my siblings who rarely gets to see him. Like you said, just another one of the losses with this disease...

    I'm in tears today because I have to miss out on my youngest son's first performance at a Baroque Festival (he plays the piano so beautifully!) I was hoping to push to go, but there is nothing in my tank... its empty. So very sad :'( I've had to miss so much already... and it continues...

    Feeling your pain, Michele... and praying for all of us...

    Hugs,
    Shel


  9. Saoirse3

    Saoirse3 Member

    "swimming with Great White sharks", on a crab boat in the Bering Sea, and trying to land a 747 by myself come to mind. The last time I was in the hospital was supposed to be a routine procedure. I told my doctor, the surgeon and the lab I needed platelets. I have ITP (low platelets). Nobody took me seriously. The surgeon removed the growth and put a couple stitches in. "Go home", they said. By the time I got home I was soaked in blood. I went back and they said "Gee, how did THAT happen?" I had to wait 6 hours for platelets to be flown in from Anchorage. In the meantime, they gave me morphine, which I am allergic to. Says so right on my charts. When I finally went home, I wrote the head of the hospital. He saw my husband and I and "after reading through your charts, we did NOTHING wrong, and our care was excellent". Oh, REALLY??? The hospital is privately owned, the state couldn't care less, and the hospital made all the doctors sign a contract that says that everything they do is wonderful and they make no mistakes EVER. Some doctors left because they wouldn't sign it.

    Would I ever go to the ER on my own? When angels fly out of my nose, Johnny Depp asks me out and I am pregnant with quintuplets - I'll think about it. If I ever wake up in one, I hope I am very near death because if I stay there, it won't be long! I'll surf the Mavericks first!

    The doctors here have "blacklisted" me and nobody wants me for a patient. I couldn't care less. In five years, they haven't done anything to improve my condition or told me anything I didn't already know. I have one doctor who is a decent, kind doctor. My internal medicine guy. The others can go pound sand. If anything major happens, I have to be medivaced to Seattle. Which is why I am moving to Atlanta.

    I know I sound "sour grapes" but I have been led down the garden path so many times, only to have the gate slammed in my face and be left in worse shape than I was before. So, natural for me!

    Soft hugs,
    Stacey
  10. I completely understand! Its perfectly understandable why you would be "sour grapes"... anyone who's been through what you've been through.... I've been through similar experiences, so I completely understand and empathize!

    Its hard for most people to even have a clue of what we've been through with our DD and the "medical establishment". As if the suffering from our disease wasn't enough, the traditional healthcare system just adds to our suffering... This is SO unacceptable... and just pure madness. It makes me angry and heartbroken at the same time...

    But I'm glad to hear that you will be moving to Atlanta... that should def give you many more options for finding a good integrative medicine doc, I hope... When will you be moving? I'll be praying that all goes well and smoothly for your move, Stacey... keep us posted!

    Blessings and Gentle Hugs,
    Shel
  11. Chelz

    Chelz New Member

    I only went to the ER twice and that was before my FM diagnosis. The first time was for a killer headache, which by the way I still get now. The doctors and nurses were actually okay to me, they gave me an IV drip of some med for about 45 minutes, I felt much better then they released me.

    The second time was a different story. I had terrible abdominal and low back pain, which now I still have along with hip/buttock pain, the nurse was MISERABLE to me. She walked me to the bathrooms, handed me a cup and said "pee in this" and slammed the door shut.

    She treated me like I just wasn't worth being there. The funny thing is, I don't acutally remember what the doctors said to me, I was just given meds, I believe for a urinary tract infection, which to this day, I don't believe I had. I have chronic pain all over my body, but if you are a woman with abdominal pain and low back pain, I swear, they will treat you for a UTI anytime. As far as the doctor goes, like I said I don't remember much, but he was rude to me, didn't let me speak long enough without interrupting me and was just a jerk.

    My advice, try as best as you can to stay away from the ER, LOL. Not realistic, but still :) Hugs, Chelz.