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Is anyone else scared to go to emergency?

hixxy

Senior Member
Messages
1,229
Location
Australia
Dainty, I also find my sensitivities decrease a lot when I'm 'pumped' up with adrenaline. Unfortunate thing is, this usually doesn't stop a deterioration the next day :(
 

Deatheye

Senior Member
Messages
161
Yeah know this too. First time I remember I was about 8years old when I entered the ER. I never used anambulance and propably never will cause I'm used to a lot of stuff and at some point even if I intended to call them I coudn't.
I never had so bad experiences like others of you. But most of the time it's just a waste cause they have no idea what's wrong with me and can't really help. Sometimes they can help.
I never was threaten badly in emergency. I had more bad situations with normal visits in the hospital. Like beeing sad I have a depression, I coudn't be possible that ill like I describe it without beeing stationed in the hospital, trying to diagnose me with ilness misssbelieve etc.
Funny if you get told after 30 years that you actually should be in a hospital under such circumstances whitch are kinda the normal for you : >

I'm from switzerland I know I could tell the ambulance to drive me to another hospital if I don't want to go to the one they normally would bring me. My grandmother does this all the time cause she was threated very bad in one place. They didn't bring here to the toilett so she shit herself and was lying in that way for hours, they took away the emergency button cause they thought she would use it too often... If they brought here to the toilett they wouldn't clean here afterwards... she need a weelchair, half of here body is paralyzed and she needs liquid food cause if it's not liquid to much ends in the lungs instead of the stomach, dementia, parkinson and other stuff...

We aren't asking a lot, just please give us standard care and don't make fun of us. It really isn't too much to ask.

Sadly it seems to be to much to ask for for a lot of people... Being taken serious is allready more then I expect...
 

Tristen

Senior Member
Messages
638
Location
Northern Ca. USA
It's good to have a primary doctor who understands your ME/CFS, because this person should be contacted by the ER. As soon as you get there, tell them you want this doc contacted. You can even call your doc before going asking that he/she take charge. Sometimes they will meet you there. They should at least advise the ER staff via phone. They may even request the ER staff do ortho's on you for OI, and then order some O2, and a few liters of Saline, something the ER wouldn't hesitate to do if your primary requests it.

If you have a good primary doc, it may be a good idea to discuss this issue with them your next office visit. If they know me/cfs, I'm sure they would be willing to be available for you with this.
 

Mya Symons

Mya Symons
Messages
1,029
Location
Washington
My experience with the ER has been similar, even though I am in the U.S. The discrimination hasn't been only because of the CFS and FMS. Once I went in because I was having a miscarriage. I was young and receiving medicaid at the time. The nurse yelled at me and told me there was nothing they could do for me so I should go home. I did go home, but of course, had to go back for a D&C. At the time, I knew what a D&C was because my mother used to be an RN. Can you imagine if I had no idea that I needed to go back?

I went 6 years without a diagnosis. Once I went to the ER on a very bad day and the nurse scolded me for not being nice enough to my doctors. It had been about 5 years with no help yet. When would have been a good time for me to become frustrated?

When I went in for a post op infection, the doctor was asking my history. I told him about the CFS and Fibro and he sighed loudly and rolled his eyes. My son was with me at the time and became angry and mentioned something loudly about "punching him in the nose." After he had time to look at my cat scan and hear my son, he was very nice to me and proceeded to check me into the hospital very quickly.

Basically every ER trip and doctors visit I had for 6 years was like this. I have had doctors say to me "well your husband never complained and no doctors have a problem with him." My husband was diagnosed within a few weeks of having the symptoms (literally weeks). By that time we knew what it was and which doctors to go to because of the 6 years of crap I went through.

When my son first became ill, he had problems getting any help because we had the same doctor. They thought we were both making it up. He was having seizures and I had to threaten a doctor before he would give him an MRI. I told him that he would have to have security drag me out and if something happened to my son, he would have to explain to the media and my lawyer why he threw us out of the hospital. They put my son in a seizure ward and did not even turn the equipment on. It was only after a nurse caught him in the middle of a seizure that they started to believe us.

I try to be positive and keep and open mind but honestly, I hate doctors. I don't just dislike them, I absolutely hate them. There is no one or nothing I have ever hated to such a degree. I spent time in an abusive relationship and I like him better then I like doctors.
 

hixxy

Senior Member
Messages
1,229
Location
Australia
Reading this thread again just reminded me of another small incident I had at ER in my really early CFS days when I first developed a lot of food allergies. The medical staff thought it was hilarious that I was allergic to nearly all the most common foods they serve to people. They pretty much wouldn't believe it and thought I was a nutcase.
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
sorry to hear that you were so ill, Dainty! glad they took you seriously for once, though.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
My grandmother does this all the time cause she was threated very bad in one place. They didn't bring here to the toilett so she shit herself and was lying in that way for hours, they took away the emergency button cause they thought she would use it too often

Ive had that happen to me too.. last time I was in hospital in the ICU (I could hardly move so didnt have a buzzer to press but was just able to speak with difficulty and make vocal noise), I needed to go to the toilet but was told when I was able to ask, that the nurses were too busy and to shit myself on the pad which was under me and that that was easier for them to clean up then getting a pan for me etc..

I ended up holding on for over 2 hrs before getting extremely distressed and crying as I didnt want to poo everywhere in bed and was going to (so ended up making enough noise that I probably ended up disturbing other patients). It was only then someone came over and placed a pan under me. I think I had a vague memory of actually shitting the bed once there before that incident. I was then left on the shitty bedpan for AGES but what bothered me even more then was the pain I was in from a hard pan under me from which I couldnt move off out so it was digging in and hurting a lot. Try laying on ones back on one of those for a long time.. very very painful

Im not angry at the nurses for it as they were very busy... its our hospital systems having not enough nurses to seriously ill patients which is the trouble.
 
Messages
15
Location
Sacramento,CA,USA
in the 24 years ive been fighting this, ive only been helped at ER once and that was a fluke. A doctor from the HMO clinic next door was there and decided to look at me. When he found out they were sending me home he argued and yelled at the staff to get me help. He eventually became my regular doctor, but later was forced to quit the HMO and couldnt have him as doc anymore grr. Need more of those kind of docs.

At best, the ER will do a basic blood test, maybe an xray, then send me home. Once when i was extremely severe with seizures and head pain,they said they were sending me home. I asked the doc "what if im dying??", he shrugged and said "not right now". Once i was even accused of being a meth addict, and they got mad at me when i didnt admit it. sigh.

so ive given up on ER and for several years i did what zoe suggested to go to the seperate Urgent Care centers. They were much more helpful, and not so overcrowded.

Also as someone else had said, paramedics were always awesome and helpfull. Come to think of it, they usually diagnosed me with much greater skill than any of the docs did.

That said, if a new problem comes up that is severe, i still would suggest ER. But like the rest of you, i wont go unless its a last resort which is very sad. :(
 

hixxy

Senior Member
Messages
1,229
Location
Australia
I've found this also about paramedics. Most doctors (and nurses), especially those in hospitals have a tendency to being extremely closed minded. Paramedics on the other hand seem to be very open minded.