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When is it ok to ignore "Life threatening" symptoms

xchocoholic

Senior Member
Messages
2,947
Location
Florida
I'm confused about this and was hoping someone here knows the answer to this.

I don't have a medical background so I've always just listened to doctors when they said not to ignore tachycardia, bradycardia, severe pain including headaches, shortness of breath, numbness or tingling, etc etc.

This list is probably on most pwcs medical records. So what are we supposed to think ?

Specifically are the "normal" tests for these conditions providing patients, not just pwcs, with the answers they need ?

And if the "normal" tests are negative, what has been proven ? Is it enough ?

From my experience, "normal" test results have resulted in lack of medical care for what could be, but obviously isn't , a "life threatening" symptom. And they wonder why we're anxious. Lol.

Tx .. x
 
Messages
13,774
Personally, I try to avoid talking to medical staff about anything unless I have good reason to think that they'll be helpful.

Doctors can like to exaggerate their own knowledge and usefulness, but then get annoyed when patients bother them with things they have no idea what to do about. I also expect that different people will have different preferences for how much time they spend with medical professionals: some people hate it, some don't mind it at all.
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
Hi @Esther12

I'm getting more this way too now that I've been sick 24 years and haven't died yet, lol, but I'm conflicted because we're told to go to the ER or see our doctors for these symptoms.

And we see people on tv or in real life who die because they ignored these symptoms.

So apparently there's a reason for getting medical care.

When "life threatening" conditions become chronic how are patients supposed to react ?

Tx .. x
 
Messages
13,774
I tend to have someone around as well, so know that if I do feel really ill there'll be someone around to check up every now and again. It's probably more difficult for people who are alone.

Around here a trip to ER means a two hour wait... I'd need to be pretty certain I was dying to be willing to go through that. [edit: Actually - I've not been to ER since before I got ill, so I may not have the best knowledge on waiting times.]
 
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JAM

Jill
Messages
421
I stopped bothering with informing medical professionals of my symptoms by the time I was an adult, unless I found something I wanted them to try. If they refused to acknowledge pain that made me pass out, why would they bother with something as "insignificant" as shortness of breath or palpitations? Can you tell I'm a little jaded?
 

worldbackwards

Senior Member
Messages
2,051
I don't have a medical background so I've always just listened to doctors when they said not to ignore tachycardia, bradycardia, severe pain including headaches, shortness of breath, numbness or tingling, etc etc.

I get most of these and I always ignore them, 'cos they go away along with all the other symptoms that come up when I take a knock. I haven't died yet, even when I was struggling to breathe for days. I learned early on that no-one gave a shit and went from there.

This is not medical advice!
 

Dreambirdie

work in progress
Messages
5,569
Location
N. California
I stopped bothering with informing medical professionals of my symptoms by the time I was an adult, unless I found something I wanted them to try. If they refused to acknowledge pain that made me pass out, why would they bother with something as "insignificant" as shortness of breath or palpitations? Can you tell I'm a little jaded?

I am beyond a little jaded. I have not yet had a good MD experience. I did have 2 neutral ones, where they actually listened to me and did not abuse me, damage me or dismiss me as crazy... If that is as good as it gets, then why bother.
 

barbc56

Senior Member
Messages
3,657
@xchocoholic

There have been at least three times I have attributed symptoms to this illness and it turned out to be something else, some serious. It's so frustrating to determine what is going on.

I am very very fortunate to have had excellent health care the last seven years after years of getting care that I felt was not up to par. To say the least.

I have no idea how to even come close to figuring this out. In each situatiom, my symptoms mimicked the symptoms of me/cfs/fm.

My PCP does monitor my health every three months. That does give me some peace of mind. But I find it worrisome the that there have been times I thought my symptoms could be chalked up to this #&!-=% illness and didn't realize what was happening.

I don't want to be hypervigilant about my symptoms, yet it's important to be aware of them. But where do you draw the line?

I have no idea.

Barb

ETA If you have symptoms of a heart attack immediately go to the ER. I think that's one of the few things a lot of doctor's advice is to be safe side. Sometimes.
 

Gingergrrl

Senior Member
Messages
16,171
@xchocoholic I wish I knew the answer to this question and I know you were asking me something similar in another thread which I have not had a chance to respond to yet.

In my case, I learned twice that going to my local ER was a complete waste of time and will never do it again. However more recently with my new CFS specialist and cardio who I trust (which is rare as I have been screwed over by doctors so many times in the past yet I trust these two fully) both felt my cardiac symptoms needed to be tested before they could attribute then to dysautonomia.

I decided it was worth checking out and if there was a co-morbid cardiac problem, we could treat it and if there wasn't (which there wasn't) then I can focus on finding the best treatment for my autonomic issues. That has yet to be found but I am trying.

Not sure if that answered your question?!!
 

Min

Guest
Messages
1,387
Location
UK
In thirty years of severe myalgic encephalomyelitis, no doctor has ever asked me what my symptoms are.

If I go to them about anything, it is dismissed as 'just the M.E. / fibro' and I am offered 'blame the patient' CBT, which is how I was left in agony with a large kidney stone for three years.

When I went about my heart symptoms ten years ago I was told 'all patients with M.E. have heart problems because they refuse to exercise'. No tests or examinations were offered and I still have the symptoms.

I have now given up with them, they gave up with me three decades ago.

The Wessely/White/Sharpe/Crawleys of this world must be so proud to have ensured we do not receive even the most basic health care.
 

Sidereal

Senior Member
Messages
4,856
I often wonder how I'll ever recognise a life-threatening symptom. I worry about dying one day from something treatable because I've been conditioned to avoid all doctors by the many PTSD-inducing interactions with the medical profession. I experience various symptoms on a daily basis (e.g., shortness of breath, dizziness, chest pain/pressure, tachycardia) which normal people would find alarming and would be running screaming to the hospital with. I've learned to just ignore these and attribute them to dysautonomia after fruitless and sometimes abusive ER visits in the early years when I naively assumed you should go there when you have such symptoms. Then I learned that hospitals are there to treat normal patients with officially sanctioned illnesses, not the untermensch with M.E.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
I so agree with almost everything people have said already.

I had unusual symptoms this week, one of which I thought was significant enough to make an appointment to see my doctor for.

I typed up a list of things to say (as I am sure my mind will go blank as soon as I walk in, as usual), then realised that a lot of the symptoms are probably 'just ME' and may lead the doc to do unnecessary investigations, make unnecessary referrals or worse - decide that they are more evidence that I am doing wrong things, and maybe try to change prescriptions, which I DO NOT WANT.

So I am going to try to stick to the few symptoms which suggest a mini-stroke/TIA, as I would rather like to have a brain scan to see if it picks up anything interesting relating to ME, plus the remote chance that I did have a TIA (I don't think so).

In order to try to persuade him that nothing is urgent and I don't need to be put on precautionary anti-stroke drugs, I will mention my own theory about the symptoms, which is colonic inflammation leading to the vagus nerve sending weird signals to my brain.

Long gone are the days when I would just tell the doc exactly what the issues were, leaving nothing out and not feeling the need to be selective and cautious.
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
I tend to have someone around as well, so know that if I do feel really ill there'll be someone around to check up every now and again. It's probably more difficult for people who are alone.

Around here a trip to ER means a two hour wait... I'd need to be pretty certain I was dying to be willing to go through that. [edit: Actually - I've not been to ER since before I got ill, so I may not have the best knowledge on waiting times.]

Hi. @Esther12 You reminded me that I stopped telling people when I was having "life threatening" symptoms. Partially because I'm still alive after all these episodes. And partially because most people can't understand why I'm not freaking out because they're freaking out just from hearing my symptoms.

The few people I know from the health field just repeat what we hear from the rest of the medical field. Go to the ER or go see your doctor .. blah blah blah. Lol.

This isn't practical for us. And if we did this, we'd be ridiculed for being hypervigilant.

Thanks for all the replies here. I've learned something from each of these. It's great having the opportunity to run these thoughts past a group who truly understands.

One of my first exposure to learning how to ignore "life threatening" symptoms was when my dd first started having episodes of anaphylaxis. She was a self reliant teenager at that point.

It was early in the morning and I was still sleeping while she was getting ready to go to school. She popped into my room to say she was having trouble breathing. I told her to stop stalling and go to school.

The next thing I heard was her gasping for air. ( Bad bad mom. )
In case you've never heard the sound of someone gasping for air, it's a horrible sound. She was flailing around on the floor trying to say "Mom. Can't breath".

I called 911 and was told to get her some Benadryl and tell her to try to relax. And they sent an ambulance. The Benadryl helped a little but they took her anyways of course.

While there her breathing normalized and other than the trauma she seemed ok. So they let her go. The ER doctor told us calmly in what I took as southern hospitality " If this happens again, just come back".

Well it did happen again about 2 hours later. I drove her which was a huge mistake. Never get in a car with someone gasping for air. We're lucky we didn't have a car accident.

Lesson learned was that anaphylaxis can repeat itself sometimes within hours. So WHY did they release her ? ? I fought the second ER fee and they dropped it because they had endangered her life.

What I took for southern hospitality was actually a warning. Lol. This dr really should've made it clear that she might do this and that I was to call an ambulance.

Her allergist later told to her if it happened again to use an epi pen and then go to the ER. This was happening regularly at first and we quickly learned these instructions weren't practical. We learned that if she took Benadryl quick enough her symptoms would resolve.

When I asked the nurse about how we were treating this she said that we were doing the right thing and that Doctors just tell patients to go to the ER to cover their asses in case the patient gets worse or dies.

So where does this leave patients ? Go ? Don't go ?

Gotta rest. Hope this makes sense. X

Eta. The difference between what we're experiencing and my dd's experience is that she has a concrete diagnosis (peanut allergy) and a proven treatment plan. If avoidance and Benadryl don't work, use an epi pen. Kow. At least so far.
 
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justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
I only realised yesterday as I sat at the table talking to my husband while one arm kept flailing madly up in the air and my hands shook and I kept choking on food and slightly slurring my speech that my neurological issues have got really bad recently and we all just ignore them.

I have never been referred to a neurologist - like Min I have never had a GP actually ask me what my symptoms where. My husband doesn't even comment on it anymore - my facial droop when im overdone doesn't elicit any concern from anyone including myself - I have completely given up believing any mainstream Dr WILL HELP ME (SORRY caps lock, not shouting).

Having said that I am having one last shot at a privet rheumy next week - I now have low level ANA titres.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
I only realised yesterday as I sat at the table talking to my husband while one arm kept flailing madly up in the air and my hands shook and I kept choking on food and slightly slurring my speech that my neurological issues have got really bad recently and we all just ignore them.

Flailing arms (with severe tremor) and slurred speech were two symptoms I had when suffering from severe hyponatraemia.

Do you know your blood sodium levels?
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
I stopped bothering with informing medical professionals of my symptoms by the time I was an adult, unless I found something I wanted them to try. If they refused to acknowledge pain that made me pass out, why would they bother with something as "insignificant" as shortness of breath or palpitations? Can you tell I'm a little jaded?

Hi @JAM

Sorry to hear you're part of the "jaded team" too. I go the ER for severe kidney infections but those are easy to dx. I haven't been back for chest pain since my first experience was dx as gastritis. They were great for that tho. My pain was a 10.

I'm not trained in health so I'm still trying to figure out what I want medical professionals to look for. Or what they've found that may be significant.

Or if they're down playing my symptoms because in their minds I'm obsessing about my health. Geesh. I was ignored twice by my doctors when I had life threatening symptoms. Luckily the people at the hospital told me to change doctors.

I'm seeing some innovative ideas on tv nowadays between Dr Oz, The Doctors and PBS. I was wondering what tests and treatments they have now that we haven't been offered.

Platelet rich plasma for pain seemed promising.

Tc .. x

Ps. I have pem today so I hope this is clear.
 

JAM

Jill
Messages
421
Hi @JAM

Sorry to hear you're part of the "jaded team" too. I go the ER for severe kidney infections but those are easy to dx. I haven't been back for chest pain since my first experience was dx as gastritis. They were great for that tho. My pain was a 10.

I'm not trained in health so I'm still trying to figure out what I want medical professionals to look for. Or what they've found that may be significant.

Or if they're down playing my symptoms because in their minds I'm obsessing about my health. Geesh. I was ignored twice by my doctors when I had life threatening symptoms. Luckily the people at the hospital told me to change doctors.

I'm seeing some innovative ideas on tv nowadays between Dr Oz, The Doctors and PBS. I was wondering what tests and treatments they have now that we haven't been offered.

Platelet rich plasma for pain seemed promising.

Tc .. x

Ps. I have pem today so I hope this is clear.
It all makes sense to me. Have you seen a ND? They are the only medical professionals I have had really listen to me.