Hospital experiences?

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I'm doing poorly still. Can't seem to improve atm. Already doing very minimal activity (just toilet and eating, wiping down crotch etc).

Gnarly hyper inflamed feeling that started with covid is still here. Currently taking 700 mg pregnenolone still every day (had to go up to this on Wednesday last week with a minor crash for some reason), and a few tsp of cumin every day.

Hr lying down is 70-80s (resting normal mid 50s), pounding. Comes in waves it seems.
If I miss a dose of pregnenolone I get increasing sensitivity to people coming in or speaking to me for a minute or so, worsening anxiety feeling in my chest/belly, a mild fever and worse hr issues, weakness, dizziness etc.

My doctor thinks I should go to the hospital if I'm not improving (so now I guess) but I'm worried they'll be useless and just make me crash even more. At the moment though I am so medicated I don't even know where I'm at (somewhere bad) or if there's still some lingering covid or something else that is causing this that I should get properly investigated..

Have any of you had a good experience with a hospital? All I can remember are horror stories.

Also worried about how I'll be able to sleep if admitted as I take a lot of supplements atm and am staying at my parents where my mum has been prepping everything for me..
 
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I know even the little blip of PEM in the huge field I'm in is likely to last at least a week though (only Monday now, started Wednesday last week), so not sure if I should try and push through and keep same medication etc.
 
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My doctor thinks I should go to the hospital if I'm not improving (so now I guess) but I'm worried they'll be useless and just make me crash even more.
curious why your doctor thinks they would actually help you?

When in the ER, the IV and blood pressure machine precluded any form of rest happening, making me generally feel worse and after four hours I left. It was a bit like I fled the scene of a crime. "We were just trying to help you" said the worthless nurse.

Gnarly hyper inflamed feeling that started with covid is still here
have you tried any of the possible long haul COVID protocols like taking aspirin, ivermectin, and some other things that seem to be recommended? Can your doctor try to help with something like that?
 
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curious why your doctor thinks they would actually help you?

When in the ER, the IV and blood pressure machine precluded any form of rest happening, making me generally feel worse and after four hours I left. It was a bit like I fled the scene of a crime. "We were just trying to help you" said the worthless nurse.



have you tried any of the possible long haul COVID protocols like taking aspirin, ivermectin, and some other things that seem to be recommended? Can your doctor try to help with something like that?
Thanks, yeah that was my experience in ER recently.. This time I'd go to a private hospital where there is apparently a doctor who is ME-aware and has an interest in complex cases - who knows though..!

Yeah tried aspirin with no luck, GP is looking into getting haematologist to approve some anticoagulant therapy to try (Pretorius paper I reposted recently).
 

Howard

suffering ceases when craving is removed
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I'm sorry you are suffering, and yes, I can relate… having been to the emergency room at least a dozen times in the past six years.

The only time I ever received help was when I was near death in early 2019… weighing in at 87lbs., unable to hydrate nor eat. In that instance, there were two reasons why they kept me overnight (and eventually, 3 weeks):

My esophagus was partially obstructed after having accidentally ingested a pill coated with gluten, and also, my wife (at the time) accompanied me to the emergency room (a rare occurrence). Doctors always treated me rather poorly whenever visiting the hospital on my own.

Also, if you do go, avoid holidays, weekends, and evenings. First thing in the morning is typically best.. less crowded, and everyone is on top of their game.

Anyway (after all sorts of drama, and against their better judgment), they did place a life-saving feeding tube after extensive testing confirmed severe gastroparesis.


Unless you have immediate life threatening symptoms, it's unlikely they'll be able to assist you. Of course, that's my opinion based upon my dozen emergency room visits over the years. When in doubt, seek help.

Please let me know if you have any additional questions, or if I'm not answering your question specifically.

Take care,
Howard
 

Zebra

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Hi, @GlassCannonLife

In my experience, it's pretty rare for a physician to suggest a trip to the ER/hospital. It seems, to me, that your doctor is worried about you (also a rare occurrence!)

If I were you, I would go.

When you get there, I suggest focusing on your symptoms and difficulties, and not immediately disclosing your current diagnosis of ME/CFS..

This is all just my opinion, based on the two hospitalizations I've had in the past 8 years.

Best of luck to you in making this decision!. I know it isn't easy.
 

Howard

suffering ceases when craving is removed
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Thank you @Howard that is as I suspected.. Have you never been admitted for extensive testing to rule things out etc?
I did receive extensive G.I. related testing during this visit, and also on one other occasion (again, G.I. related, and also admitted). But I've never received any testing or treatment related to my severe P.E.M. symptoms (M.E./C.F.S.)...

Of course, that's not to say your experience would be the same. If anything, going to the hospital can be reassuring… in being told that there's no imminent threat. Plus, they can do some blood work.

Also, I concur with @Zebra - Do not make any mention of M.E./C.F.S. (at least initially).

H
 
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Yeah not sure.. Check for other pathologies being overlooked, check CSF, do some kind of tests.. I don't know. Essentially make sure it is just ME and not something else that could be treated. Sounds like a lot of exertion though.

Seems like the answer generally is nothing though haha. Like only go if you are legitimately going to die if you don't go, otherwise they will not be useful at all..
 

halcyon

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Have any of you had a good experience with a hospital? All I can remember are horror stories.
I've been in the ER countless times, and admitted on two occasions. This is in the US (which is sounds like you're not), so perhaps not helpful. I would not call them good experiences, but they were necessary. If admitted, you will be constantly disturbed at a minimum once an hour, and if you are stuck in a room with someone else, they'll likely be talking or blaring the TV nonstop which you will have no control over. They will likely be unable to administer any of your supplements to you, just prescription medications (make sure to bring your Rx meds with you just in case their pharmacy doesn't have them immediately available).

In terms of what they can do for you, that will depend on what they want to do. In terms of things that I've had that they could do something about, when I end up poorly enough to go to the hospital, I'm usually hypokalemic (sometimes approaching dangerous levels), sometimes hyponatremic, hyperlactatemic on two occasions. Otherwise, I'm usually hypertensive/tachycardic, and often have an elevated white blood cell count, which typically just gets a chest Xray and bloods/urine for bacteria culture.
 

Gingergrrl

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@GlassCannonLife Can you tell the hospital that your doctor strongly suggested that you go to the ER (which gives it more weight than you just self-referring - at least in the US). Also can you tell them that you recently had COVID which they would hopefully take seriously and not dismiss it as “CFS” or a psych issue. Last, why did they prescribe pregnenolone vs. a different steroid like hydrocortisone or prednisone?
 

Judee

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do you know of anyone/have you had any such experiences?
I'm sorry I didn't respond sooner.

And I'm sorry. I don't know about hospital experiences and ME PEM. However, the other day I did wonder if PEM could be similar to herxing and a cytokine storm.

Perhaps if you look for herxing remedies??? Dr Marty Ross has a lot on the topic on his website...he even suggestions things to mitigate it (herxing that is) some.

Hope you figure it out. This has had you in a bad place for a couple weeks, huh. :(

Oh and I did want to say if you decide not to go to the ER, it still wouldn't hurt to do some kind of follow up appointment with your doctor just to make sure you aren't having some kind of adrenal crisis or something.

Edit: That being said, I'm not saying you shouldn't go if you feel like you need to. As some have mentioned, at least it might give you some peace of mind.
 
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Thanks @halcyon , sounds similar to me, I seem to get hypokalemic (not the other luckily but was low in phosphate also) and have an elevated wcc.. They did a urine test and chest xray last time (cos of covid). Point taken on the rooms, I was worried about that.

@Gingergrrl yes good idea, I will say that if I have to go in, thank you. Last time the doctors at least weren't dismissive of ME but were like "well there's no treatment for that, so.."
I've taken pregnenolone for bad PEM/crashes since I first had ME. I found it on reddit when I was first mild and it seemed quite useful as a PEM block/stabiliser for bad episodes, letting me rest more. At that time I thought it was adrenal crises but given my lack of symptom resolution with IV hydrocortisone last ER visit a few weeks ago it seems that this is not the case..

My endocrinologist supports me using it but the complete mechanism of how it works seems undetermined as of yet..


Thanks @Judee , yes cytokine storm or herx is how it feels! I will look up what people do for those. But yes, it's been a bad few weeks :(

I am stable for the moment so hopefully I will start to improve finally.. Fingers crossed..
 
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I think the thing that got me the first time is I got numbness and tingling so bad in my hands that I stopped being able to use my fingers normally.. Wasn't sure what it was and it freaked me out a bit. Along with high fever, strong nausea, etc everything I described in the other post.. So I thought it must be an adrenal crisis and I was going hypo or something but yeah just have no idea what it is when it happens.

Maybe I just need to wait them out and vomit etc if needed..? But hopefully won't have another this round..
 
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Hospital made me always worse, they dont understand and cant do anything.
I dont know your history or underlying pathology but you need something anti viral (med or herb) and omega 3, zinc, selenium (in my opinion)
Thanks man, yeah that seems to be the consensus.

Already taking all of that, hopefully I can just wait it out
 

BrightCandle

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Hospitals just aren't setup for dealing with ME patients at all. Lots of light, sound and disruptions as well movement all of which just further worsens the PEM symptoms. In the last 2 years I have been into medical facilities just twice. The first was when my back went so badly I couldn't get up off the floor and was stuck. It took the NHS 16 hours to get to me as they denied any issue for most of the day but some NO and morphine at least got me up. The ambulance took me to A&E but they didn't even bother to do any tests and sent me home after wasting 6 hours. Once the morphine was in my I could walk so I could at least remove myself from hospital if I needed to escape, that is a very critical aspect to me given the torture they have put me through I wont enter a hospital unless I can leave. That was pretty painful for the weeks after and I ended up getting a private MRI 2 weeks later since I was still in agony. Other than that no doctor has shown any interest in putting me into hospital or doing tests.

I don't know what it is they could possibly do anyway, they don't have a clue what was wrong with me and they squandered the 4 years prior when I could attend. So unless its life threatening in my opinion there is zero value in going to hospital. Most of my reduction in suffering has come from supplements and drugs from the research exposed here on Phoenix Rising. That has been helpful, doctors, A&E etc have not done anything but hurt me for the better part of a decade and after 170 appointments they still haven't even come to a diagnosis.