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When is it ok to ignore "Life threatening" symptoms

xchocoholic

Senior Member
Messages
2,947
Location
Florida
It all makes sense to me. Have you seen a ND? They are the only medical professionals I have had really listen to me.

Hi. I saw an integrative doctor for about 4 years and she was terrific. But I still didn't get an answer, or maybe I did but don't know what it is, for my oi or pem.

I gotta rest. Typing is too much for me today. Tc .. x
 

JoanDublin

Senior Member
Messages
369
Location
Dublin, Ireland
I am finding this thread very interesting and also very sad. I have been asking myself the very same questions about my young lad - when does a symptom become something that needs urgent attention. To be frank I'm pretty sure there would be many people I know who would have run to their GP or the ER with some of the issues he's had over the past two years but it's amazing how one just comes to feel they are part of the 'norm'.

I'm probably more prone to wanting to get things checked out, whereas he, despite his young years, is the one who says 'just leave it, they can't do anything anyway'. He was admitted on three occasions through the ER though so it's often a really difficult call to make. And then with a minor you worry that if anything goes seriously wrong they will accuse you of neglect or something.

During one recent regular appointment at the hospital I decided to mention to one of the younger docs there that he was having balance problems and gave her the examples of him falling off chairs and also falling off his bicycle into a ditch on both occasions when he tried to cycle. Her response? She asked him if he was wearing a safety helmet. When he said he wasn't she gave him a lecture on cycling safety. Did she ask anything about the balance problem or offer to investigate it? Did she heck. Not a word, nada. Oh well.....
 

barbc56

Senior Member
Messages
3,657
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.

Generally, doctors in the states tend to order too many tests, though unfortunately not for you. It's because of the fact that the US is "sue happy".

Recently, I was in the ER and when I got my test results it said, "can't rule out myocardial infraction. Changes since previous EKG."

I didn't freak out, well not too much, as the same thing happened to a friend. I'd had a complete cardiac work up several months before and hadn't any cardiac symptoms.

I guess this is a frequent occurance with the computer readouts. The EKGs they do for thirty seconds. These changes can happen if you simply move a bit, take a deep breath, a lead coming loose or the computer simply made a mistake. I ended up, checking this on Dr. Google and couldn't believe how many hits about others who'd had same experiences.

I had my follow up visit with the nurse practitioner the next day and after looking at the cardiac report talking to my doctor, which is legally required in my state, this was confirmed.

Fortunately, I can access all my records, on line, even tests such as a CT scan and get the same report sent to my doctor after she reads it. . Your record is detailed enough that you can download it if going to a doctor out of the system.

Good luck.
Barb

ETA I am having difficulty with the predictive text settings on my tablet. I hope I caught all the mistakes.
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
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!

Hi @worldbackwards

Your name says it all. I ignore (eta - treat the best way I know how or ignore) my "life threatening" symptoms now too but the worry is still there. How can we be sure this time we're not having or going to have a stroke ? Heart failure ? Seizure ? Anaphylaxis ?

My 2 hour seizure started out the exact same way my shorter milder seizure / tias did. But somehow progressed to a form of myoclonus I'd never had before.

Certainly once I was in it, my movements were undeniable and I needed an ambulance but I didn't have a clear sign this was coming. I consider this "life threatening" because I lost the ability to breath normally off and on and had to force air in and out.

Hmmm. Right before this came on, I was in my drs office asking her what the mild seizure or tia I was having was all about. I was having these regularly at the time.

I don't know why and never thought to ask but she told me to stay in the lobby until I felt better. Maybe she saw something ?

After that I stayed on Klonopin 24/7 then gradually only at bedtime. It's been a couple of years now so I'm coming off it again. This "life threatening" event terrified me.

Tc ... x
 
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xchocoholic

Senior Member
Messages
2,947
Location
Florida
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.

Hi @Dreambirdie

It's unbelievable how many people feel this way about healthcare and yet it continues. Good to hear you've found a doc, non traditional, you can trust.

I go back and forth on this. I see why I need a doctor but after seeing so many who couldn't help it's left me jaded too.

Tc .. x
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
@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.

Hi @barbc56

Good to hear you have a good doctor now. They're hard to find. Especially one who monitors your health despite cfs.

I know exactly what you mean about attributing our symptoms to cfs. I'm not sure how long I've had celiac disease. Several times after getting me/cfs my digestion stopped for 10-21 days and I dropped a lot of weight. Then it would clear up and I could eat again, even gluten. At least until 2005.

Once when I was very thin, my skin was grey. Yellow wasn't unusual but grey was new. I remember that my family was scared but we all just concluded it was cfs. GEESH ! I don't remember seeing any doctors for that.

I agree with calling 911 if we're having what definitely appears to be a heart attack, stroke, etc but I won't be calling unless I'm 100% sure. I've been fooled too many times now.

I wonder if patients with other chronic illnesses go through this. To call or not to call ? Or is it different for them because they have test results that pinpoint MS, Parkinson's, heart disease, AIDS, diabetes, etc. ?

Tc .. x
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Once when I was very thin, my skin was grey. Yellow wasn't unusual but grey was new. I remember that my family was scared but we all just concluded it was cfs. GEESH ! I don't remember seeing any doctors for that.

I agree with calling 911 if we're having what definitely appears to be a heart attack, stroke, etc but I won't be calling unless I'm 100% sure. I've been fooled too many times now.

I wonder if patients with other chronic illnesses go through this. To call or not to call ? Or is it different for them because they have test results that pinpoint MS, Parkinson's, heart disease, AIDS, diabetes, etc. ?

Tc .. x

Grey skin would ring alarm bells for me, suggesting a circulatory problem. I recall seeing a couple of friends looking like that - the first one had AIDS and the second had had a heart attack.

My own problem came when I did call 999 (the UK equivalent of 911) and wasn't taken seriously. It was at least a week later before I was well enough to get to the doctor's and get some idea of what the problem might have been, but it wasn't until I had another episode 3 years later that I finally got to hospital by bypassing my GP (PCP, I think you call them in the US?). Even then my suggestion of hyponatraemia was dismissed and I was sent home, only to have to be rushed back before even reaching home and found to have SEVERE hyponatraemia. Then the senior doctor overruled the weekend doctor who had correctly observed that I appeared dehydrated and put a cannula in my hand ready for a saline drip. The senior doctor, other doctors and an array of nurses appeared not to notice the cannula for days until I pointed out that it was itching (probably infected), by which time it appeared to have made rather a mess, judging by the face of the member of staff who removed it.

The senior doctor insisted that I was OVERhydrated and had overused desmopressin and drunk too much fluid, despite my telling everyone repeatedly that I hadn't. They put me on FLUID RESTRICTION with the result that I ended up so constipated that I hallucinated.

In the intervening years I had suffered a fracture and dental damage as I was clearly losing other minerals as well as sodium. It could have been avoided if health staff had just LISTENED.

After that experience I instructed my friends NOT to take me to hospital if I had a recurrence of the illness, and frankly I would rather not go there ever again.
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
Hi @MeSci .

I'm so sorry to hear this. Is healthcare in the UK always this bad ?
I'm sure you're better off than most since your background allows you to look for scientific answers for yourself. ☺

The horror stories from other countries make me feel bad for complaining.

My grey skin tone happened about 5 years after I got me/cfs and since I thought it was just another cfs symptom I ignored it. We all did.

I wouldn't ignore it nowadays tho. I'd google it. I felt horrible 24/7 back then and couldn't advocate for myself.

Tc ... x
 

Research 1st

Severe ME, POTS & MCAS.
Messages
768
The title of this thread asks the question, ''When is it ok to ignore "Life threatening" symptoms''? The simple answer to the question is... its never OK.

As many doctors will tell you as a person living with ME or CFS the irritating punch line in ER if you attend with chest pain/shortness of breath is, ''don't worry about it, it's probably just a panic attack''. I'll focus on this problematic conclusion of physician based symptom assessment and how people can be incorrectly told they don't have a potential life threatening disorder and even told to go home and not come back, because of the stigmatised disease label they have.

Firstly, life threatening disorder is open to conjecture and should really be split into groups of presently or possibly. For example, the classic panic attack and rapid heart rate that comes with it, is a horrible symptom to experience at the best of times. For a healthy person, a panic attack will not hurt you. This is true.

So a tachycardia of a sinus rhythm is not life threatening and will appear 'normal' on an ECG, but it may be life threatening if you become dangerously hypertensive (high blood pressure) and have a stroke due to having dysautonomia and you are your doctor aren't aware of this. Additionally, if one has Asthma or anything that weakens the heart (ironically, ME and CFS), then having a sustained tachycardia can result in de-compensation, a situation where your heart does not fill correctly and your circulation becomes compromised. In someone very weak, this can have undesirable consequences if the tachycardia is not brought under control, sinus rhythm or not. Those are existing conditions, but the danger to worry about is also....

New onset conditions we don't know we have. These can also be dangerous and fobbed off as anxiety based. Yet anxiety and resulting panic can be and often are symptoms of serious underlying physical problems with the body (Low glucose, deranged electrolytes, hypoxia, infection etc). The additional danger here, is when we become very sick, our judgement can become clouded. We actually tend not to panic, but become listless and indifferent to our predicament.

It seems a universal problem, is doctors don't like telling people medical 'facts' who haven't been assessed for a variance of potential reasons for the new-onset symptoms (presenting as over anxious 'worried well'), as doctors can fear patients may return for more and more tests and continuing pestering them. If a doctor is biased due to ME or CFS discrimination, they will believe that the 'mental health problem of CFS', is potentially made worse by sending patients for more tests, so they consequently won't admit you to hospital or refer you in ER situations that are unclear if there is an underlying physical cause. One needs to be aware of this, in my view, as a patient and learn to stand your ground whenever possible. This can be done respectfully and calmly, but it often requires a lot of support, such as from your partner/carer/parents etc.

I believe in the UK NHS system of health care provision, doctors working in GP surgeries are paid incentives to reduce referrals to hospitals to have tests performed to reduce to costs to the state. It is thus financially rewarding for a GP practice in the UK not to refer the alleged 'anxious' patient. (This is the reverse of private health care insurance systems that want to give you every test under the sun to increase the costs...to the patient).

If I was a person with ME, CFS or even healthy, I would never ignore what you perceive to be a life threatening symptom until a medical profession has proven to you, what you're experiencing isn't. Even if they can do this, this does not preclude your ability to develop life threatening symptoms at a later date.

If in doubt, always go to the ER or call for an ambulance if you develop sudden distressing symptoms and/or a progressive worsening of disabling symptoms you don't usually experience. NB: The most active sports-persons can succumb to pneumonia because they 'thought it would get better'. The same goes for sudden onset chest pain, breathing difficulty and/weakness in a limb/slurred speech etc. ME and CFS sufferers are not immune to 'normal' health emergencies, although we can be slowly brain washed into believing this, as we are well used to staying tucked away at home receiving no medical care for our chronic health conditions that often far exceed any 'criteria' list used to initially diagnose us.

One needs to consider this fact, that for a significant percentage, ME or CFS is progressive. We get worse over time, and we develop health conditions we put down ourselves to 'just ME CFS', when these can actually be heart failure, cancers, arthritis, diabetes, kidney disease etc).

As patients, we are in a very vulnerable position with a diagnosis of ME or CFS, and I would certainly trust your own judgement and do not feel fearful of being humiliated in ER by a disbelieving doctor and avoid attending a hospital for reassurance and diagnosis. It's best to be a bit embarrassed and be sent home, that never to arrive in ER at all due to being in heaven.

Speaking from personal experience many of ME or CFS 'emergency' symptoms can be due to a deranged autonomic nervous system. This does indeed initially present as 'anxiety' (if one then becomes scared), but the underlying causes are not within conscious control and with correct testing, it then becomes obvious patients are a lot more than just 'nervous'.

Unfortunately, the UK NICE guidelines advise against a TILT test to detect,and diagnosed dysautonomia in ME or CFS patients, making sufferers bounce in and out of ER, often experiencing horrible things that make us more worried, more jaded, and more scared to go to hospital when we become acutely unwell. Long term, this is psychologically, as well as physically damaging (if symptoms are not reported to medical professionals).

Sadly, this is a consequence of psychiatry owning ME and CFS, due to non test based 'fatigue' based research.Since the late 1980's, doctors are still not trained in realizing how ill we are, and that we often can suffer from very nasty complications due to having ME or CFS.

Trust your instinct and remember we only have one life and once chance on this planet to experience life. Doctors are paid to diagnose and if necessary, treat you. It's their job, so they can do it for us too, even if we have a disbelieved label that makes us cautious on getting opinions on often very distressing symptoms.
 
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barbc56

Senior Member
Messages
3,657
@xchocoholic

Don't feel bad about posting. This thread has been very informative.

If you can't vent here where can you?

We are where we are with our illness. Some better, some worse, but it certainly doesn't negate anyone's suffering. We're all in this together, we all want to get well and unfortunately, we all feel like shit!:D

Barb
 

Gingergrrl

Senior Member
Messages
16,171
I'm so sorry to hear this. Is healthcare in the UK always this bad? The horror stories from other countries make me feel bad for complaining.

@xchocoholic I agree and when I hear about what goes on in the UK, I also end up feeling horribly guilty that I have so many more choices re: which doctors I see. I have seen some HORRIFIC doctors and had two ER visits where I was completely dismissed. But I have also found some wonderful doctors and been taken very seriously, especially by my CFS specialist.

So my opinion is still to never ignore serious symptoms BUT to be very selective with which doctors and hospitals you go to as some are wonderful, some neutral, some useless, and some outright dangerous and harmful. I guess you can only do that in a private healthcare system although even then, the doctor can order a test s/he feels is critical and insurance can deny it.
 

PNR2008

Senior Member
Messages
613
Location
OH USA
This is a horrible problem. I can relate to everything written on this post. In all the years I've been sick, I believe I get better care at the ER than the doc's office, except if I'm going to a specialist with a specific problem.

I've learned to have my specific symptoms at the ready. In the ER they have everything handy, saline, X-rays, urine cultures, and a shot of Demerol for migraine that just won't stop. Do they have these things in a doctors office? Possibly, but they seem to do maintenance care there or referring to someone else. I would never go to a doctors office for saline infusion unless that doc specialize in it. I've had a migraine in the gynocologists office he apologized because he didn't carry pain medicine.

Going to the docs office is stressful for me, getting there, being cleaned and properly groomed, even wearing a little makeup only to get referrals and have the basic tests, BP so low and never addressed, sometimes not even taking a temperature. At the ER I'm wheeled around, to X-rays and I'm in a bed so walking is not so hard. I always feel better in an ER.

I am very lucky to have two ER's within 5 miles from my home and a urgent care center 10 miles. I've had neighbors drop me off and pick me up when I call them 2 hrs later. If I can I drive myself. They notice when I turn gray and usually have the saline going in no time. I always feel better walking out of the ER than the Doc office.

My BP is low today and I'm drinking but I landed on the floor twice today, If it doesn't improve I'm going to the ER not my docs office.
 

barbc56

Senior Member
Messages
3,657
@PNR2008

I like the walk in clinic where I live. All your recrds are there and If they can't treat you you're sent to the ER. By ambulance, I guess to cover liability, which I don't like as for me it costs. But the clinic is cheaper and frees up the ER to take those patients in dire need.

What are you drinking? :lol:


That's for laughs but seriously, I hope things go well if you have to go to the ER. Well, even if you don't go there.

Barb
 

PennyIA

Senior Member
Messages
728
Location
Iowa
I'm with all of you.

Before I got ill (like just a few months before I developed me/cfs)... I had suffered a bilateral spontaneous enormous pulmonary embolism. I didn't go to the hospital until I'd had the pain for almost 48 hours... had started to have trouble breathing, had dislocated (and thanks to chiropractic care - relocated) ribs... and honestly? Other than a 'loose plan' to go see the doctor when they opened the following day... it never occurred to me to go to the ER. If I hadn't had a paranormal event, I probably wouldn't have gone to the ER. And they basically saved my life.

But, then I got me/cfs... and recurrent chest pains. The pain was every bit as bad as the PE-pain and dislocated rib pain had been. How do you know that this time it's not serious? The doctors would reassure me that they would rather I go to the ER than not... but after multiple trips without any further diagnosis... I gave myself a plan that I'd monitor the condition and not go in unless it worsened after taking it easy. (at least it saved me some money - and so far, I'm still alive).

But then I started getting upper back pain. Figured it was a new symptom of me/cfs - and pursued chiropractic care which helped, but it kept coming back. After several years - it got progressively much worse. Eventually I ended up in the ER as the pain was so severe. I got diagnosed (repeatedly) with pluerosy (which doesn't have a treatment)... and would get sent home. It took 13 doctors and a multitude of trips to the ER before they finally figured out that I ALSO was having gall bladder attacks and had been having them for years without diagnosis nor treatment. They figured it out 24 hours before I landed BACK at the ER the following day as it got SO MUCH worse (again) and this time the test results showed that my liver enzymes were elevated and I had developed pancreatitis. Another 48 hours and I wouldn't have survived until surgery.

But yeah. HOW DO YOU KNOW? That's two life threatening symptoms that were easily dismissible and easily disregarded by doctors. Yet, they were buried in with everything else.

One of my recent symptoms is that I'm experiencing a sudden onset rapid heartbeat immediately upon laying down to go to bed. It's gone super quick. I've tested myself at 70 bpm five seconds before lying down. Retested at 90 bpm within 60 seconds of laying down... and right back to 70 bpm in the next 60 seconds. I can feel it pounding in my chest. My friends and co-workers tell me that it's irregular heartbeat and should go immediately to the doctor. But, really? While it doesn't seem simple OI or simple POTS... it does seem like it's something that if people had a regular heartbeat of 90 bpm they wouldn't worry that much about them. So if mine climbs suddenly, but also drops suddenly - and it only happens while I'm laying down - well, it's not like I'll fall because I'm dizzy while laying in bed.

But it's hard to figure it all out.
 

Gingergrrl

Senior Member
Messages
16,171
@PNR2008 Please let us know if you end up going to the ER (or not) and that you are okay. I know it is so easy to ignore symptoms when we have tried and been dismissed in the past. But if your BP is dropping so low that you have fallen twice today, I do think it is important to see a doctor. Maybe I am still naive, but I want to believe that they can give you saline or try Midodrine or something to help with this.

@PennyIA I am so sorry to hear about your experiences too with the blood clot and gallbladder but am glad that you got them checked out. I think sometimes when the pain is so severe or something just feels "different" than the usual CFS symptoms, that we have to trust our instincts and continue to advocate for ourselves like you did.
 

PNR2008

Senior Member
Messages
613
Location
OH USA
I just came back from the ER and guess what? I had a small pocket in my lower lung of pneumonia. Not only did I get saline, but also antibiotics and intervenous Tylenol. I knew I had an infection somewhere.

To reward myself, I stopped at a 24 hour Dunkin Donuts and yes had coffee, shared them with my dog. We still got to live.