"Hypochondriac" - Anyone called that?

[Nodzy]

thimarine,
I feel the same... the tremendous amount of shared knowledge here surpasses that of professional sleep clinics, I would bet.



James,
I certainly agree with the "lets educate the doctors" concept. Most certainly need it in the OSA/SDB field. But, I have to say... there are RT's and doctors who are great at understanding it all, and putting the pieces together. Just far too few of them.


Nodzy

[Panhandler]

I sure agree with James and Nodzy that the docs could use some education. Aren't there groups that are supposed to do that sort of thing? I know there are other forums out there, but this one is by far more active, informative and entertaining!

I've been talking with my PCP about my experiences since joining this group, and he suggested the other day that I could make a business out of troubleshooting other folks' CPAP. I can't, of course, 'cuz that would be practicing medicine without a license, but there must be some way to together with that part of the medical community who are open to patient involvement.

[Julie]

Yes, it's happened to me (if not a flat-out label, then certainly the attitude of the MDs), but mine was a bit different as my most definitive symptom for a long time was a serious reaction to any acidy food or caffeine - I didn't have a lot of recognizable overnight GERD, but did get lousy pains in the evening - to the extent I went for ECG's once or twice until after years a scope finally showed gastritis, and while that alone wouldn't necessarily mean I had OSA, it would have been nice for someone to believe something was wrong and not assume I was crazy when I said all the antacids and/or prescriptions actually backfired (too many, causing me to produce even more acid than otherwise).

[DreamDiver]

Count me in. Give me the text and the photos. I'll arrange the pages as you like, ready for print from pdf at any preferred print house in North America.

[Susanm]

In mid 2006, just before getting diagnosed with severe sleep apnea I had a doctor tell me point blank that I was a hypochondriac. He said there was NO way that I was having all those symptoms. That list turned out to be almost every symptom of sleep apnea.

Ouch, I had a similar experience ... one of my genius docs said "If you really felt as bad as you say you do all the time, you'd be dead by now." Wow. I didn't even know people could hit a certain level of crappy-feelingness and just keel over dead. Must be one of those secret things only doctors know about.

But yeah ... hypochondriac .... lazy bum .... and general loser/slacker.

Susan M

[mindy]

There are several people on this forum that have helped me get my therapy straight and gone above and beyond.

Right on! I have been helped a great deal by members of this forum. Sometimes in very practical ways and in large part because the members of this group are so *inventive* and that keeps me from getting discouraged when I have some bad nights. It also helps to know that I'm not alone. Even though we sort of know we aren't alone to begin with, it's not the same as having real, live people to communicate with.

Since I joined this group of hoseheads I have run into several people I know outside the forum who had given up and had cpap machines gathering dust in the closet. They have told me they are now motivated to try again!

Mindy

[mindy]

I sure agree with James and Nodzy that the docs could use some education. Aren't there groups that are supposed to do that sort of thing? I know there are other forums out there, but this one is by far more active, informative and entertaining!

I've been talking with my PCP about my experiences since joining this group, and he suggested the other day that I could make a business out of troubleshooting other folks' CPAP. I can't, of course, 'cuz that would be practicing medicine without a license, but there must be some way to together with that part of the medical community who are open to patient involvement.

Panhandler,

I think that what you've been doing (talking with your PCP about your experiences) is the most important thing you can do as far as the medical profession.

They are bombarded with information and don't have time to read and digest it all. They rarely have time to keep up with the medical journals they need to read. So I think a one-on-one approach may be the most productive. Eventually the good ones will keep it in mind. Also, there is more interest in medical research about sleep apnea and that will also gradually help. For example, sleep apnea is a "hot topic" in cardiology and it was my cardiologist who referred me for sleep study.

As far as I'm aware, I don't think there is definitive information on what causes what but it seems that inflammatory conditions somehow may manifest in multiple ways. That research still has a long way to go.

Finally, I notice that our local sleep clinic has an amazingly increased load so I would take that to mean that there is more awareness of and interest in sleep studies.

Mindy

[Panhandler]

I think that what you've been doing (talking with your PCP about your experiences) is the most important thing you can do as far as the medical profession.

They are bombarded with information and don't have time to read and digest it all. They rarely have time to keep up with the medical journals they need to read. So I think a one-on-one approach may be the most productive. Eventually the good ones will keep it in mind. Also, there is more interest in medical research about sleep apnea and that will also gradually help. For example, sleep apnea is a "hot topic" in cardiology and it was my cardiologist who referred me for sleep study.

Mindy, I think you're absolutely right. A one-to-one personal endorsement is always best, and you're right about the information overload in the medical community. It would be nice to speed things up, but these issues and the general conservatism of the medical community make changes really slow.

[RosemaryB]

I think that what you've been doing (talking with your PCP about your experiences) is the most important thing you can do as far as the medical profession.

They are bombarded with information and don't have time to read and digest it all. They rarely have time to keep up with the medical journals they need to read. So I think a one-on-one approach may be the most productive. Eventually the good ones will keep it in mind. Also, there is more interest in medical research about sleep apnea and that will also gradually help. For example, sleep apnea is a "hot topic" in cardiology and it was my cardiologist who referred me for sleep study.

Mindy, I think you're absolutely right. A one-to-one personal endorsement is always best, and you're right about the information overload in the medical community. It would be nice to speed things up, but these issues and the general conservatism of the medical community make changes really slow.

Interestingly, I went to see my endocrinologist recently. The resident was the one who interviewed me, then I met with both of them. When the endo discovered I have OSA and am on CPAP he commented to the resident, "See, she doesn't fit the profile at all, yet she has it. I wonder how many others like her there are out there?" This led me to believe that the message is getting through. (I don't fit the profile because I'm slim, with a thin neck, I don't snore, and I'm female).

[Nodzy]

Interestingly, I went to see my endocrinologist recently. The resident was the one who interviewed me, then I met with both of them. When the endo discovered I have OSA and am on CPAP he commented to the resident, "See, she doesn't fit the profile at all, yet she has it. I wonder how many others like her there are out there?" This led me to believe that the message is getting through. (I don't fit the profile because I'm slim, with a thin neck, I don't snore, and I'm female).

Rosemary,
Exactly. Many people do not fit the physical, sleep-snore, profile and still have OSA/SDB in some form. Many others may be borderline with obvious or instrument recordable symptoms, yet have very troubling resultant body symptoms. It is too often a silent killer.

Nodzy

[sharon1965]

i've shared this story before, so i won't bore with the details, but just before i fired my gp, he told me, while looking at my latest lab results
"on paper you're a superstar! you'll live to be 100"

when i said, "i don't want to, if i have to feel this crappy for the next 60 years"

he said, "sharon, i'd hate to see you if you had a REAL problem"

to which i replied, "that works out well, then, cause you'll never see me again"

i switched to a new gp(not an easy feat in these parts) who pretended to care about my symptoms, telling me we'll address them one by one and get to the bottom of it, then turning around and prescribing me anti-depressants and telling me to "eat less and move more"

when i heard about osa from a friend and thought it sounded like me, i went back to her for a referral...first she was ticked that i hadn't taken the meds, then she was skeptical, saying, "hm, i don't think that sounds like you", till i pointed to the 16 x 20 poster behind her showing a guy snoozing on the couch and listing OSA symptoms and said, "if you had taken the time to read the list of my symptoms i gave you at my first app't, you'd see that they match up with your poster back there"...she grudgingly made the referral, but hasn't acknowledged my dx of severe OSA since...

hmmm, it looks like i did bore with the details

[GumbyCT]

You go Sharon

[msheda]

"eat less and move more"

Sounds like my GP whom I finally got to meet. I asked what he could suggest to help support weight loss, he said "Remember, there are no overweight people in concentration camps"

OKEY DOKEY... Strike 1.

If it weren't for a fantastic Nurse Practiioner, I would be outta there.

Luckily in the 6 times I have been there, I have only had to interact with a "real" Dr. once.

I almost asked him how he did he know I wasn't jewish. not only did it p!xx me off because of the non-answer. (ie: dont eat so much... no kidding? wow, wish I had thought of that.. how much is too much? I've been doing 600 calorie days and still putting it on.. etc... ) but I really thought it was in bad taste.

[Nodzy]

"i don't want to, if i have to feel this crappy for the next 60 years"

then turning around and prescribing me anti-depressants and telling me to "eat less and move more"

but hasn't acknowledged my dx of severe OSA since...

hmmm, it looks like i did bore with the details

Sharon,

No, not at all boring in any manner.

What you experienced was akin to what very many others went through, or will endure. Some repeatedly, like me. I prove to them at my expense for machine, masks and software that they mis-prescribed and forced me to endure almost nonexistent therapy for over 5-years… and then in that same exam where I am prescribed a BIPAP without hesitation, I am listed as a “hypochondriac.”

There’s no doubt that it was part punishment for proving them wrong, as we know some doctors suffer from Fragilicus Egolitis Syndrome and / or Pedestalofticus Maximus Syndrome. And in part it was a “Cover My ASSet” effort in case my worsening condition through those 5-years of almost no therapy becomes a point of medical contention, clinical review or litigation. And this was a doctor with impressive additional medical degrees – but none in the OSA/SDB field or any psychiatric specialty.

In fairness, the vast majority of doctors are honorable despite that they can't know everything, or are unable to correlate seemingly disjointed symptoms to very apparent to obvious base ailments.

So, the truth is… some of them would likely do less overall harm by being in a non-diagnostic profession, than by misdiagnosing and prescribing “psych” drugs to people whose multiple physical ailments those doctors arbitrarily refuse to believe are real.

DISCLAIMER: I admire all doctors and medical professionals -- most for their knowledge, skills, intuition and dedication to patients, and others for their glaring, pompous audacity.

Yep, Nodzy said it.

[schnertling]

As I said in previous posts, it's AMAZING to see so many going through the same things.

Although I can't prove on paper that the mental issues are resolving since CPAP, I CAN show my MD a list of daily blood pressure readings that are now NORMAL!

It seems that some physicians, although very well educated, spent too much time in book work and not enough time in social-skills class. An unfortunate imbalance.