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vickythecat

Senior member
Joined
Jan 5, 2017
Messages
364
Reason
DX FIBRO
Diagnosis
01/2013
Country
EU
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Earth
Hi,

These past few weeks, with the acute serious illness of my mom, I was once again reminded of how important it is to be a smart patient.

Before I start, I need to emphasize that I have full respect for doctors. This is not about 'dissing' them, or disregarding them. It is about the fact that doctors are also humans, they are also not perfect.

Most people (incl. myself my whole life) go to the doctor fully trusting that doctor, right? That is what these people are trained to, they have the education, they have the brains, they have the experience. So once you step into their office, you trust them, literally, with your life. This is a huge fact. Our health is our everything.

However, like most of us here have experienced, it also goes wrong many times.

Raise your hand up (or your finger!) if you have been to a doctor and left his/her office angry, frustrated, not listened to. All of us, right? Or have dealt with a mistake = wrong diagnosis, wrong combination of medication, procedures gone wrong?

It is therefore so very important for patients to be smart patients.

I personally have been doing a lot of reading and research these past few months. I am trying to educate myself on the human body, read the latest research findings on different topics. I am simply trying to have a basic yet logical understanding of the whole body.

My belief and experience is that you can only ask the right questions if you know what you are talking about. And questions are so important in a doctor's office.

But now, when you tell a doctor 'I read online....', they will have that look on their face. Of course, some of the time, they have the right to dismiss our findings. I am sure many patients go to a doctor with a pimple on their nose and say 'I read online, this can be cancer'. There is too much information and too much false information online. Plus doing this makes you (look like) a hypochondriac.

I get it....but ....

brain fog, sorry, I don't know how to put it into words.

So back to the basic question, what are your opinions on being a smart patient? how can you be one?
 

Lou38

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Joined
Dec 29, 2016
Messages
232
Reason
DX FIBRO
Diagnosis
02/2017
Country
UK
State
Scotland
In my experience it's good to read as much information before an appointment as you can. It's usually better to go with the approach of asking advice rather than to sound like you're telling the clinician how to do their job. I.e I wonder what your opinion would be on this or can you give me some advice on this, I've been reading a bit about it and wondered what your thoughts were. I work in a hospital which certainly gives more understanding about how things work and being a bit more patient as I know everything takes time. Don't be afraid to speak up if you're not happy that you have been given enough information at an appointment or if you feel you are being fobbed off, take a list of questions in with you in case you forget to ask them, take your partner or someone with you if you think this will help, 2 pairs of ears are better than one. Often we wait weeks or months just to see a clinician so we need to take as much as we possibly can from the appointment. I hope this makes some sense, brain fog kicked in halfway through typing this lol.
 

Tipnatee N

Very helpful member
Joined
May 8, 2017
Messages
594
Reason
DX FIBRO
Diagnosis
11/2012
Country
us
State
New york
I think or should I say that I thought I knew how to deal with Doctors by now but I still don't . Cause the human side of them is the hard part to deal with since I also feeling like I failed as a human being do to my fibro. Who am I to judge?.

I have tried to put my self in their shoes , thinking of all the thing they might have heard up to now. What do they felt so guarded against the fibro patients? How can I appear to be trustworthy patient? Which way should I bring up the subjects matter? I watched so many hospital and doctors' TV shows drama, and read the doctor emotionally comments against the shows. Just to see if could understand the nature of how their minds work. What's going on in their state of mind when they look at fibro patient?.

Maybe the best way to deal with this is to ask in the friendly matter. I'm planing to do just that for my next new doctor when I get enough money to see them again. But one thing that I do know for sure now is their love and hates over the online info. So I stop bringing it up ever since. I felt the need to make them feel trusted in the simple human level. But I can't yet trust them so how would this kind of relationship is going to work? I have no idea. That's why I'll try to always encouraging my self to always started at zero everytime I went back with more problems.

Next time with new doctor , I wrote down some planner of what I think is the biggest problems for me right now while using online info to scale it down to simple explanation, and I'll keep on adding and subtracting over and over like writing a thesis of my self in conclusion .

Right now I'm trying to distinguish between what I think is fibro and what I think it's not. I felt like I have to listing all my physical pains and suffering that can be amplified by depression/ anxiety problems. Or which symptoms had clear started or actually caused by depression/anxiety alone. And what's clearly not have any effect or started by it?. Cause what's clearly not are quite a short list. Then looking for what's overlaping each other condition so I can shorten my lists down to the real main goal. Process of elimination, you can call it that.

But I won't bring my list to the doctor next time. Like going in to an exam . I will repeating it to my self over and over till i fully understand my self completely before I go in. Then I will be as relax as I can to start the new conversation with the doctor. However I will not show them nor talk what I knew right away, I'm planing to keep it on equal terms so we can meet in someway in the middle started by what do they believe and quietly thinking of how I can convince them to understand me in their terms of languages and personslity...

Maybe I should study up on cold reading LOL. Maybe I'll be come a psychic that might work :mrgreen:
 

sunkacola

Senior member
Joined
Dec 2, 2016
Messages
304
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
VickyTheCat, you are a smart woman. You are right that the more informed you are about what is going on, the better.

What I have learned about dealing with doctors for myself, and the same applies to dealing with vets for my animals, is that you cannot....cannot!....just trust the doctor. You have to do your own research....extensively....and take full responsibility for your own body's wellness, or the health of your animal.

Many times if I had not been informed and just trusted what the doctor tried to do the results could have and probably would have been disastrous. One time, would have killed my animal had I not known better and refused that treatment.

At the same time, you have to be careful. Most of them have the attitude they are gods or know everything.
They are actually taught to be this way in their training. They are trained that if they don't take this attitude they won't be as effective.....they have to act as if they totally know what they are doing. This makes sense in a way. But cannot be trusted.

So you have to be careful. Don't say you read something online or in a book. I always say, "I understand there is a school of thought that says ...." Or "There has been some research that indicates....". That kind of thing.

And I never whine or complain or cry or get emotional. Just the facts, ma'm.

It helps me to write down bullet points on what I want to cover if there are several, or I will forget.
I make everything as short and succinct as I can. This is vitally important. If you ramble or get into telling personal stories, they will stop listening and may cut you off to go see another patient.
I speak respectfully even if I disagree, and always shake hands and say thank you.
 

vickythecat

Senior member
Joined
Jan 5, 2017
Messages
364
Reason
DX FIBRO
Diagnosis
01/2013
Country
EU
State
Earth
Right now I'm trying to distinguish between what I think is fibro and what I think it's not. I felt like I have to listing all my physical pains and suffering that can be amplified by depression/ anxiety problems. Or which symptoms had clear started or actually caused by depression/anxiety alone.
This is also a huge obstacle of mine. One I don't know how to deal with.

The moment I tell any doctor I have been diagnosed with major depression, anxiety blah blah blah, they will again blame everything on that and use the 'you should see a shrink, and use some anti-depressant' card.

Now I know mental illness has a huge impact on how we feel physically. I am also sure, at least in my case, most of my flares are blamed on my mental state. But fibro is definitely also a real illness I have to cope with. It won't go away if, by magic, I am cleared off of depressive moods and this constant anxiety.

It is the never ending question isnt't? How can you not be in physical pain when you are mentally really sick? and the other way around, how can you be mentally healthy if you have pain and fatigue all the time?

doctors....and us patients.....

I wish there was a doctor here with fibro (and more), wouldn't that be very helpful!?!
 

Tipnatee N

Very helpful member
Joined
May 8, 2017
Messages
594
Reason
DX FIBRO
Diagnosis
11/2012
Country
us
State
New york
There are doctor with fibro, I even posted a video of doctor who have fibro talking about fibro on this site. Sadly he's not in my location.

Yes lol I have been told to see psychaitrist or therapist always. My introduction on my first session with any therapists or psychiatrists regarding of any question about my childhood traumas is uaually " well my dad have a degree in child psychologist ,2 in therapist , and to top that of he's also a pastor " for some reason I've alway found the look on their faces after I told them that to be rather quite interesting. :shock:
 
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Lubkos way

Distinguished member
Joined
Oct 3, 2017
Messages
123
Reason
DX FIBRO
Diagnosis
03/2002
Country
Can
State
Quebec
I will share an experience,which really destroyed my ability to trust any doctors ever again.I am sure my being "treated" by a GP for an infection called H.Pylori was the cause of my descent from being a healthy person.All this nightmare,I believe,because of a large duodenal ulcer in my stomach.He gave me an antibody blood test for the bacteria,whose numbers were very high.So I was given a strong antibiotic cocktail for 10 days.It was a fist full of 5 different large pills twice a day.I could barely finish them,I was in agony!But,as we all have had it drummed into our heads,you must finish the full treatment to avoid being resistant,so I completed it as I should.Three months after,I went back,only to be told that the antibody blood test I had taken a week before the appointment,showed very high numbers still,and I would have to have another different stronger cocktail.This is where it all went wrong,and worse,he did it one more time again,in another three months with the same blood test.The problem was,that his memory for treatment of H.Pylori was faulty(he was a GP,not a gastro enterologist).I found out two years after, when I got my first computer,and researched the treatment.When you first are tested for H.Pylori you can have the antibody blood test,and if the numbers are high,you are positive for the infection.After you are treated,you cannot use the antibody blood test to measure if you still are infected.The levels stay high for up to two years after it has been killed!The only accurate tests are a hydrogen breath test,or a gastroscopy with a biopsy of my stomach lining.So,basically he gave me two extra cocktails of ever stronger antibiotics completely unnecessarily,and layed waste to my digestive tract,kind of like a drano effect! I stopped going to him after the third cocktail,sensing that something went wrong!I began my decline with Terrible stomach aches,Permanent diarrhea,Exhausted,Extremely long periods to recover after exercise,Swearing I would never go to another doctor again!What a mistake,my life would never be the same!At the time,I thought my athletic work ethic would help me recover.But,little did I know,that was the genesis of the perfect priming conditions for the weakening of my immune system.Then came the remaining 2 triggers for the perfect storm to seal my fate.My work accident,which was almost losing two finger tips(cutting through the finger nails to the bones).My mom suffering two months in the hospital and dying anyway.It destroyed me emotionally,because she suffered many indignities,which I witnessed and they still haunt me.I really have lost all faith in modern medicine and all the other money hungry vultures,like big pharma,holistic promisers,that end up like a bad relationship that just keeps taking,and never gives anything real back that lasts.Writing this has made me feel a little sad,but it is getting a little bit less painful every time I think deeply about it.And as time passes,therapy for me has become spending time with the few people that mean the most to me,and planning my itinerary for healing this coming week.Tomorrow looks wonderful because it will be sunny,warm and,I have the beginning of my second treatment,I am so excited because the first treatment,only two months ago,had nothing to do with doctors and big pharma,and neither do any of the others......
 

vickythecat

Senior member
Joined
Jan 5, 2017
Messages
364
Reason
DX FIBRO
Diagnosis
01/2013
Country
EU
State
Earth
I really have lost all faith in modern medicine and all the other money hungry vultures,like big pharma,holistic promisers,that end up like a bad relationship that just keeps taking,and never gives anything real back that lasts.Writing this has made me feel a little sad,but it is getting a little bit less painful every time I think deeply about it.And as time passes,therapy for me has become spending time with the few people that mean the most to me,and planning my itinerary for healing this coming week.Tomorrow looks wonderful because it will be sunny,warm and,I have the beginning of my second treatment,I am so excited because the first treatment,only two months ago,had nothing to do with doctors and big pharma,and neither do any of the others......
I feel your pain and frustration.

I was also 'possibly' diagnosed with a duodenal ulcer by an internist. Again, this was before I was a 'smart' patient and this was in a private expensive hospital, but because I had full insurance from work, I never questioned things, was new to the system & country. He referred me right away for an endoscopy but I was scared of having the procedure (I had no one who'd accompany me etc), so I used the meds, my complaints were resolved for a while, and never went back. Months later, I realized he should've asked for a blood/stool test (duh!), and a test for H. pylori. A colleague told me that internists get bonuses for getting patients to have the expensive endoscopy in such private hospitals! The messed up world of medicine....money money money.

I have had many many doctors that left me seriously question the medical profession. Yet, I try to focus on the 3 amazing doctors I have met throughout my life. My GP for many years when I lived overseas, my urologist and my first oby-gyn. These 3 doctors were truly amazing; they listened, they looked at all treatment options and I could really be me with them, tell them anything and I knew they'd listen and come up with a solution together. Whenever I left their office, I felt happy and hopeful, no matter how serious my illness was.

So I have a glitter of hope of ever bumping into that perfect doctor again. I will switch as many doctors as it takes to find that person. I have to stay strong and smart till then. Very strong and very smart.

I really hope you find a way to find a place for the trauma's you've been through. I love your attitude now though; focusing on the healing and putting yourself first. :)
 

Tipnatee N

Very helpful member
Joined
May 8, 2017
Messages
594
Reason
DX FIBRO
Diagnosis
11/2012
Country
us
State
New york
Me too , I was dianosed with stomach virus when I was 7, it was 3 months hospital stay which left me with long term lucer treatments and loads of cocktails drugs and every meal of that white chalk tasted glue. I cound't eat anything much for many years. After endoscopies I was told that there were over 100 ulcers wounds in my stomach in my age of 14 not sure if they were exaggerated or not. The hospital doctors speculated stomach cancer. My parent sent me to the different part of the world to get my operation . Only to be found out just a few second before my stomach was slice open that it was not cancer. I escaped the live of the stomach bag hanging outside of my belly for the rest of my life just in the nick of time. Still after all that the thing that finally saved my stomach was turmeric and other herbal supplement ( cause I rather tasted that than anymore medications). Sadly my stomach had shrinked so much after healed I have to eat like a bird for the rest of my life. Little small amount only each time.

Doctors are human , so good and bad one are in the mix since they have authority to probe, poke, cut and slice our bodies with our own consent .

With my mom hospital situation , they almost killed her much earlier than her time. They left the lung fluid draining machine on high while I was't there and accused my mom for being a baby crying that she couldn't breath . Luckily god was still loved her do to some unforeseen circumstances , the machine broke just on time before it sucked all my mom's lung tissue out and kill her right on the spot. The chife hospital have to come over to appologize over and over cause for 4 days my mom's lunges was collapsing and partly stucked together while nobody listen to her cried. And because she had thick accent they treated her like the non-english speaker. As far as I remember her english is 10 times better than me in terms of writting or reading.

They called her condition non-smoking lung cancer which supposedly much worse than smoking lung cancer with 0% no surviver do to their fast spreading type cancer that quickly spreaded to bones and brain. But while all the media demonized cigarette, when anyone heard that my mom was dianosed with lung cancer they looked at her like 'oh so she must have been a smoker that's why she have lung cancer!' and then the looked of 'she sure deserved it' . .. it's sad... cause my mother Hates cigarette with passion since she was little. :cry:

Now I don't know what I hated more, medical world or media.
 

Lubkos way

Distinguished member
Joined
Oct 3, 2017
Messages
123
Reason
DX FIBRO
Diagnosis
03/2002
Country
Can
State
Quebec
If anyone has a reason to dislike so called modern medicine,and to be a skeptic,it is you!You have my sympathies.What happened to the first rule of medicine,your patient should never be left worse off than when you first came to them?I bet the numbers of mistakes are much larger than what is reported in the medical community and literature.I am afraid to know the truth!The endless snake oil salesmen are such a nuisance(possibly a danger too) and with the internet,it has become the wild west,with no rules or integrity to speak of.It is one of the reasons I try to keep any supplements or treatments to the minimum,keeping only the ones that are based on solid needs and have a real track record of helping!
 

Tipnatee N

Very helpful member
Joined
May 8, 2017
Messages
594
Reason
DX FIBRO
Diagnosis
11/2012
Country
us
State
New york
What I would never put my turst in is the 'marketing'

I don't believe in anything as easily as I once was. But I won't demonize anything nor anyone either. Hates maybe there underneath my subconscious, but I will give anything or anyone a benifit of a doubt regardless of what kind of history I had with. Simply because I hate to admit defeat of my own misfortune.

I couldn't help but constantly in my crazy mind imagining of what would the old world people do? By old world I mean few hundreads years ago or maybe thousand . Did fibro existed then? It must have looked like somekind of dark magic curse... what did they use that was actually helpful? There has to be some forgotten remedies there somewhere that safe enough to try. Forget the snake oil ..my shopping list is now in the caveman era.
 
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