And another health care provider reveals they are clueless how CFS/ME works

[southwestforests]

Aw man, that is a lot to drop on a person all at once. I would much prefer an approach like, "There are several things which could be done to help, but let's rock your world one step at a time instead of doing them all at once like some kind of Noah's flood deluge."

My own experience with food is along the lines of what was suggested there. And it is known and written about that in that category a big factor is the interplay of cost, availability, how much energy your body has, time, other health issues which may be involved, and even transportation to go acquire the food.

In my case, the dollar amount of Social Security Disability was about eleven dollars a month below the poverty level last time I checked. And that's because that though I worked for a couple decades my health has always been a mess and I never could do a middle class pay level job long enough for it to count in the disability payment math when it was figured based on what I made when I was working.

And that has an impact.

On everything.

 

[Likaloha]

Aw man, that is a lot to drop on a person all at once. I would much prefer an approach like, "There are several things which could be done to help, but let's rock your world one step at a time instead of doing them all at once like some kind of Noah's flood deluge."

My own experience with food is along the lines of what was suggested there. And it is known and written about that in that category a big factor is the interplay of cost, availability, how much energy your body has, time, other health issues which may be involved, and even transportation to go acquire the food.

In my case, the dollar amount of Social Security Disability was about eleven dollars a month below the poverty level last time I checked. And that's because that though I worked for a couple decades my health has always been a mess and I never could do a middle class pay level job long enough for it to count in the disability payment math when it was figured based on what I made when I was working.

And that has an impact.

On everything.

Thanks for the reply...I appreciate the understanding!

 

[YippeeKi YOW !!]

@Likaloha

Sorry to go on so....just needed a place to vent where I am undestood! Thanks to those who could read this long!

Like all unsolicited opinions, this one is worth what you paid for it or slightly less, but I'd avoid your new doc like Ebola. Just my reaction, but to me, he reeks of "Whoopee .... more fast money here !!!"

I know how hard it is to find any Dr to help with this little mingey maelstrom of an illness, but I've also learned how damaging the wrong one can be.

Approach with caution !!!

 

[Likaloha]

Aw man, that is a lot to drop on a person all at once. I would much prefer an approach like, "There are several things which could be done to help, but let's rock your world one step at a time instead of doing them all at once like some kind of Noah's flood deluge."

My own experience with food is along the lines of what was suggested there. And it is known and written about that in that category a big factor is the interplay of cost, availability, how much energy your body has, time, other health issues which may be involved, and even transportation to go acquire the food.

In my case, the dollar amount of Social Security Disability was about eleven dollars a month below the poverty level last time I checked. And that's because that though I worked for a couple decades my health has always been a mess and I never could do a middle class pay level job long enough for it to count in the disability payment math when it was figured based on what I made when I was working.

And that has an impact.

On everything.

I checked out the load of bread he said I could have and it was between 6 and 8 dollars...what a joke!

 

[Likaloha]

@Likaloha

Like all unsolicited opinions, this one is worth what you paid for it or slightly less, but I'd avoid your new doc like Ebola. Just my reaction, but to me, he reeks of "Whoopee .... more fast money here !!!"

I know how hard it is to find any Dr to help with this little mingey maelstrom of an illness, but I've also learned how damaging the wrong one can be.

Approach with caution !!!

Thanks...I am really getting more and more upset the more and more I think of it...I saw him on Friday and tried to spend the weekend not upsetting myself about it....the more and more I think about it, the angrier I get...at him and at me...I should have been more assertive, but when I tried he just kept at me....after all these years you would think my backbone would be stronger, but I am still often intimidated by the m.d.

 

[YippeeKi YOW !!]

@Likaloha

after all these years you would think my backbone would be stronger, but I am still often intimidated by the m.d.

It's precisely all those years of enduring the depredations of this crappy little fogbank of an illness that makes us all so susceptible to the kinds of poundings that Drs like this dish out when we have objections to their methods or questions about their protocols, which I suspect they know, in the depths of whatver passes for a soul with them, are questionable at best, bogus at worst.

Don;t beat yourself up !!!! You're looking for answers and help under sub-optimal conditions, and your courage is laudable, don't give up on the search !!!

 

[Rufous McKinney]

.I should have been more assertive, but when I tried he just kept at me....after all these years you would think my backbone would be stronger, but I am still often intimidated by the m.d.

Don't beat yourself up....its incredibly difficult to successfully convey and exchange useful information with another living human. Let alone a doctor during: The Appointment.

Mine first had to discuss a) his nobel prize nomination; b) the third edition of his book; c) married the gal 40 years younger last week; d) I still didn't take the one pill he gave me. (Modafinil).

Did he answer that question? Duh I don't think so. He thought of some test I should get- out comes a prescription, with flair and I'm handed another illegible scrap of paper. (wonder what this test will be testing)...

Around here, people seem to be able to discuss: the tests they got. I find that: really a great mystery.

 

[southwestforests]

I checked out the load of bread he said I could have and it was between 6 and 8 dollars...what a joke!

Yep, that's off the menu.
I just don't buy bread at all any more.
No loaves, no rolls, no cakes, no muffins.
Will still once or twice a month have a hamburger eating out, with their buns.
I took years before I finally capitulated and gave up pizza.
It was primary comfort food until my troubles with dairy and tomatoes got bad enough in addition to the known troubles my gut was having with breads that, okay, yeah, it's kind of in my face obvious this pizza consumption must end now.

And now, even crackers cause issues.

I and earlier my Dad have both found that avoiding citrus helps, but then we both have fibromyalgia as well as CFS/ME and it is known that citrus and fibro don't play together well. I do not recall any specific info on citrus and CFS, which doesn't mean there isn't any, just means that I don't presently remember any.

 

[Likaloha]

@Likaloha

It's precisely all those years of enduring the depredations of this crappy little fogbank of an illness that makes us all so susceptible to the kinds of poundings that Drs like this dish out when we have objections to their methods or questions about their protocols, which I suspect they know, in the depths of whatver passes for a soul with them, are questionable at best, bogus at worst.

Don;t beat yourself up !!!! You're looking for answers and help under sub-optimal conditions, and your courage is laudable, don't give up on the search !!!

Thanks for the support! This doc is so lauded in some circles, but I wonder if all those good ratings he gets are from people like us...those so complicated and so worn down!

 

[Likaloha]

Don't beat yourself up....its incredibly difficult to successfully convey and exchange useful information with another living human. Let alone a doctor during: The Appointment.

Mine first had to discuss a) his nobel prize nomination; b) the third edition of his book; c) married the gal 40 years younger last week; d) I still didn't take the one pill he gave me. (Modafinil).

Did he answer that question? Duh I don't think so. He thought of some test I should get- out comes a prescription, with flair and I'm handed another illegible scrap of paper. (wonder what this test will be testing)...

Around here, people seem to be able to discuss: the tests they got. I find that: really a great mystery.

I don't understand much of what these tests are either, and what they really have to do with helping me anyway! I just want to have a little energy and have the pain be at a tolerable level.....I am not asking to be cured, but would love a little understanding of my day to day life and a little help getting through that......tests are anymore a mystery to me, and the results meaningless anymore!

 

[southwestforests]

I am not asking to be cured, but would love a little understanding of my day to day life and a little help getting through that.....

That last bit about understanding seems to get more intensely treated as asking too much than does asking to be cured.

 

[Sushi]

And another health care provider reveals they are clueless how CFS/ME works, which means I won't be going back to this Nurse Practitioner who gets so many good reviews from both patients and other health care professionals & who a couple of my friends had suggested would be better than the rural health care clinic and hospital where I had been going.
Today she went down the "e

Yes, discouraging! I’m in a slightly different situation in that a severely leaking mitral valve kept me couch/bedbound for 7 months until I had surgery to fix it. This left me profoundly deconditioned with so much muscle loss that daily tasks were much harder than “before severe leakage.” I was offered cardiac rehab though my electrophysiologist said that I would have to educate the rehab people about exercise and ME/CFS, and that it would take a lot of “fiddling.”

After a few false starts that didn’t work (i.e. I got severe PEM) today I presented them with some new research data (from a patient of Dr. Systrom’s at Brigham and Women’s) and they completely redesigned my program so that now it is close to what Dr. Nancy Klimas recommends. It is so hard to find the balance between exercise that leads to PEM, and an appropriate program that will rebuild lost muscle. I am thankful that this facility is so flexible. They also put an HR monitor you and check you with a pulse ox after every element.

 

[YippeeKi YOW !!]

After a few false starts that didn’t work (i.e. I got severe PEM) today I presented them with some new research data (from a patient of Dr. Systrom’s at Brigham and Women’s) and they completely redesigned my program so that now it is close to what Dr. Nancy Klimas recommends.

Good Lord, @Sushi, where do you find the incredible members of your medical team? Down the line, they've been head and shoulders above what most of the rest of us experience.

Truly, New Mexico is the Land of Enchantment ....

Am so glad to know that you're doing progressively better and better, and it's good to see you here ....

 

[Sushi]

Good Lord, @Sushi, where do you find the incredible members of your medical team? Down the line, they've been head and shoulders above what most of the rest of us experience.

I think that the key is that the providers I’ve mentioned are in a very well defined specialty—cardiology—and associated with a very good hospital that rates well in the cardiology world. Cardiology is not a murky medical backwater but one that attracts some of the brightest and most progressive doctors—and they actually keep up with medical journals. My entrance into their world was not through an ME/CFS diagnosis but through an excellent electrophysiologist whom I chose because she is dysautonomia-aware. So from the get-go I had dysautonomia and myalgicencephalomyelitis on my official medical record and all the cardiologists and rehab doctors I have seen since have access to these records and accept these diagnoses. The cardiac-pulmonary rehab facility that my electrophysiologist referred me too has experience with patients who have a number of co-morbid illnesses and they seem dedicated to being flexible to design programs that fit each individual.

Still, I have been very lucky—there are lots of local players who would have given me the royal run-around. I was similarly lucky that at the time I realized that I had dysautonomia I lived in a small to medium sized city that had one of the few dysautonomia specialists practicing there and he did a really sophisticated tilt table test and my later doctors have taken that test seriously. For instance, when faced with the possibility of open heart surgery, I traveled and sought a second opinion from one of the best heart valve centers in the country. Because of what the surgeon saw on my tilt table test and his own examination and testing, he recommended the much less invasive mitral valve repair that I finally did have. For me, seeing that he had Marfan’s Syndrome as one of his research interests made his opinion even more attractive.

 

[Rufous McKinney]

So from the get-go I had dysautonomia and myalgicencephalomyelitis on my official medical record and all the cardiologists and rehab doctors I have seen since have access to these records and accept these diagnoses.

Geez we must live in different countries or something.

I could not get National Insurance Company A to provide my records to National Insurance Company B.

(but I see it wouldn't have mattered, as Company A just stared).

 

[YippeeKi YOW !!]

@Sushi
Thank you for your explanation!!! It could be extremely helpful to those in the community who can qualify as cardiology patients, which Im pretty sure a number of us can, if only because of fibrillation issues.

It's also good to know that there are some really good Drs left, especially since they're in a discipline that's literally life-and-death .....

Again, so good to see you posting !!!! I've wondered where you'd gotten to, but didnt want to be a pest ....

 

[Sushi]

Thank you for your explanation!!! It could be extremely helpful to those in the community who can qualify as cardiology patients, which Im pretty sure a number of us can, if only because of fibrillation issues.

It's also good to know that there are some really good Drs left, especially since they're in a discipline that's literally life-and-death .....

I’d also suggest that for anyone considering seeing a cardiologist for anything related to heart rhythms (tachycardia, bradycardia, pauses, premature beats, arrhythmias, etc.) to look for an electrophysiologist as they are the “electricians” in the cardiology field rather than the “plumbers.” An electrophysiologist is a cardiologist who has further specialized in areas that may apply to some of us. And, amongst electrophysiologists, the best ones will be fellows of the Heart Rhythm Society. https://www.hrsonline.org/find-a-specialist

Earlier I saw a general cardiologist who was very nice but hopeless for my needs.

Interesting note: Some of these very bright, younger cardiologists have started communicating with each other (and patients) on Twitter, giving us a whole new level of access.

Before my “valve fix” I was able to watch a digital presentation of it—step by step—presented by one of these guys. I appreciated this as then there were no surprises and I knew exactly what questions to ask.

 

[Judee]

so that now it is close to what Dr. Nancy Klimas recommends

@Sushi, I like this guy's video. He is/was a patient of Dr Klimas, I believe and talks about how using the monitor and exercising helped him.

 

[Sushi]

@Sushi, I like this guy's video. He is/was a patient of Dr Klimas, I believe and talks about how using the monitor and exercising helped him.

Thanks for posting this video. I’ve also always found Dan to be a good source of information. I would need another way to monitor whether I have crossed the anaerobic threshold as I have a pacemaker so my resting heart rate is always the same—i.e. programmed by my pacemaker. The heart monitor used by my rehab center is a three lead EKG, though they check you after every exercise interval with a pulse ox which also measures oxygen levels. At this point I guess I’ll just have to wing it and judge whether I have crossed the anaerobic by the effects I experience later.

 

[Judee]

@Sushi, I do some some symptoms of some type of OI (standing still for too long is hard) but don't get the extreme tachycardia that others do. I don't get extreme anything but still feel my pulse rocking me sometimes even if my pulse is only going up to 105 per min.

My issues are more with heart pain and heaviness and feeling what I call "heart tired" like my tiredness as PEM seems to originate from my heart sometimes. Plus, I have times when I feel air hunger like others experience.

My new PCP did refer me to a cardiologist for a tilt table test but his office refused to set the appointment because they said he isn't "doing POTS clinic anymore." I let it go and my PCP referred me to a local neurologist that does dysautonomia and tilt-table testing instead but I really wanted to go to the cardiologist.

This week I got a letter from the department saying, "You're doctor referred you to an electrophysiologist but you have not set the appointment yet." I'm guess that means I can pick one in the group and go but now I'm not sure what questions to ask when I go. Plus, up til now pretty much everything has been coming back normal. I don't want to go through all that just to be told the same thing again.

Any ideas or suggestions?