Could We Be To Blame For Our Pots?????

[juliegee]

Hi All,

I know this will be controversial and I'm struggling to stay open-minded about this....Part of my son's regimen (recovery from NMH/CFS) has been receiving Integrative Manual Therapy. This was strongly recommended by Dr. Rowe at Hopkins. I've been trying it and it really seems to help. The physical therapist that we use (whom I respect) has suggested that people suffer from illness because of dysfunctional thought patterns. of course, this infuriated me! It smacks of "blaming the patient." I asked about cancer patients. He said that they are the most inflexible, close-minded group that he has ever worked with. (Forgive me, those of you who may be suffering with or surviving cancer- not my theory!) My graduate and post-graduate work is in counseling so I've been exposed to this idea before- mostly from holistic practioners.

Once I got over my anger.....I pondered this theory. There was a time when I was healthy and unbothered by POTS... It started rearing it's ugly head following traumatic periods- physically and mentally in my life. It makes me wonder if life's demands (and my response to them) could be playing a part in all of this. An autonomic dysfunction is a deregulation of the things that are supposed to happen automatically in the body. But, in our case- this automatic system goes haywire. Did I get too far away from my body's natural rhythmn? Was I not listening to what my body needed? Did I try to help and please everyone else at my own expense? Did LIFE (and my response to it) make me this way?

Mulling this concept has caused me to listen to my body's needs, focus on my HR and breathing and take more time for myself to exercise, etc. Most of us are women and we are the caretakers of our families. Do we neglect ourselves at the expense of everyone else?

Just something to think about...if we caused our own illness, do we also have the power to cure it with our own thought patterns? Next time I see my PT, I'm going to ask him about premature infants and kids born with cerebral palsy. Did THEY too cause their infirmities???

Let me know what you think.

Julie

[Maxine]

I just think this is a theory that needs a lot more support----right now it sounds more like psyco-babble.

That's all I can muster up for now because my mind is thinking of too many other sources that can cause ANS dysfunction, and my head is spinning too much to type more.

Maxine----------------------------

[helane]

i have heard the theory many times before. i agree partially, that in some cases thinking has an influence on physical health... but can we blame a person that was born physically different i.e. a hump on his back? if not, and not everything is based on mental cause then where is the dividing line? also - is it possible that as every person is different physically and they have a different length of bones, color of hair - then their nervous system is made differently as well? which may result in some differences in the body's response to natural conditions. and maybe POTS is not a disease, but a different way of living in the world? different kind of energy. i know, that scientist say that animals do not have many diseases that human do but it may only mean that the ones not fitted - i.e. penguins with POTS will simply not survive - they will not get up and run after parents from a nest...

or as in my case - i am nearly 6 feet tall, and it is only our technology, hormons etc that let me grow so much in the past. in nature - our bone structure was not naturally made for this height. so gravity is taking its toll on my bones...

and, as with every and each theory... nobody REALLY KNOWS. they all fight trying to convince us that they know. btw - why do we have to know?

h.

[Guest tearose]

I have NO question that I am NOT responsible for bringing on or adding to my POTS!!!

I have done meditation, soul searching, healing work, exercise...for many, many years. I have led workshops on positive methods to achieve peaceful balanced living...no dysfunctional thought patters, only positive loving hopeful living here.

Overall, I think it is good to ask ourself deep introspective questions once in awhile to be sure we are in touch with our inner balance. This is a healthy self questioning and knowing.

It may be for those that experience "anxiety or panic attacks" only, and brought on or made worse by fear and negative thinking...positive thinking will help alleviate some ailments. This is not a POTS person though.

For those who have a physical/anatomical problem that has caused POTS, I fail to see what possible "dysfunctional thought pattern" could have brought on the condition. Not from my experience, not from my intuition.

[pat57]

I think it is reguarded as fact that "stress kills".

the topic is very broad, and so I leave it at that!

[thejohnsongang]

I read this post and thread with great interest. I had just watched a show on TV (not sure of the name) but it talked about people that are "sensitives". I know this might sound like phyco babble to some, but it really made me think. There are of lot of people that are called "sensitives" due to their human nature. I know that I am one for sure. I am sensitive to medications and can only handle in small doses, I am sensitive to stress and emotion and can only handle in small ways, I am sensitive to others and what they are thinking far to much at times, I am sensitive and can tell from my gut when something is wrong with my kids, husband, mother etc. , I have been know to be sensitive enough to have what some people call premonition's about what is going to happen. And the list goes on and on, hot/cold, foods, smells, tastes etc., etc., etc.

My thought on this is: Are we ( all dysautonomia suffers) "sensitive" people who feel more than the normal population and are more aware of when our bodies do not feel right? And by doing this are we more aware our own problems more so than the general public? There is a whole untapped population out there that suffer from pots and it''s related symptoms that never receive treatment and live their lives out just fine. Then there are others (like us) who suffer such severe symptoms that we have trouble with daily life. Is it a medical issue or is it a emotional/spiritual issue? You hear a lot of psychotherapists talk about being in touch with your inner self..are we to in touch with our inner self?

Yes being mostly women...we are the heart and soul of our families and do carry a lot of stress and problems on our shoulders...as women we have done this for hundreds of years...why now is this just coming to light. Were women perceived as just crazy years ago and this new field of study is justifying our weaknesses. Or were they "sensitives" that just didn't know it?

No...I'm not crazy and neither are any of you...but years ago thats what we would have been diagnosed as. Men or women..it wouldn't have mattered. Now it is a true disorder that is recognized by most, but not all. Anyway, before I turn this into a 2 page reply.....Can we just be people that are very in touch with our inner self and be more aware of what is going on than most people? A "sensitive" by true nature?

I would love to hear other peoples thoughts on this. If you don't want to reply in this thread, please e-mail me at thejohnsongang@adelphia.net.

[MomtoGiuliana]

I definitely understand you anger--and why you are pondering this. I went through a period where I "blamed" myself for my POTS. This was due to the fact that three doctors I went to suggested my problems were primarily rooted in anxiety. I never thought of myself as an anxious person, but I was having bouts of unexplained anxiety due to adrenaline rushes. I thought for awhile that I could talk myself out of POTS--only b/c that is what uninformed doctors seemed to be suggesting to me. Finally I found an EP/specialist who validated my condition as a condition rooted in a physical cause. I do believe that stress exaccerbates symptoms, just like eating poorly does, and any number of other things we do that are not good for us. I strongly believe that this is a condition rooted in physical explanations, not emotional. Someday it will be better understood.

Katherine

[briarrose]

Well you all had good responses but Hellane & Johnsongang replies really got my attention.

Some of these theories might be correct but how can you explain that NASA astronauts experience POTS symptoms upon their immediate return to Earth? Were they too stressed out on their mission? I think that something changed in their autonomic system which caused them to experience Dysautonomia symptoms.

This syndrome is dated back over a Century in military illnesses. Yes those men & now women are under extreme mental fatigue but their body is taking a beating as well.

http://www.gulflink.osd.mil/medical/med_syndrome.htm

Are women who develop POTS while Pregnant unable to handle the mental challenges of pregnancy?

Chris Caulder has some good explanations for POTS are they all stress related, I personally don't think so.

(please look under the causes he has listed http://home.att.net/~potsweb/POTS.html)

I think that the brain plays a part in all of this but it's more closely related to the functioning or dysfunctioning of the Hypothalamus/Thalamus. Could the nervous system be so stressed out that it altered the autonomic functioning of this gland to cause our systems to go haywire?

And how can you explain the youngest Dysautonomia patients being from their infancy, are they stressed out as well? I didn?t even know that babies could experience such mental fatigue. This theory could possibly be linked to SID?s. SID's is still an open field, could they be close to making the link to some sort of Dysauotomia?

Here's some ideas - http://www.sidscenter.org/SleepPosition.aspx

Everyone had good ideas to ponder, how far can your mind take you?

I don't think that 1 person (your PT) that doesn't know anything about Dysautonomia, should be so quickly to judge or lump us into 1 thought pattern of illness. Dysautonomia is so complex, some of the top docs say that research is 20 years away from knowing anything pertinent.

[kmpower]

I think too many people don't feel comfortable with the illnesses and troubles of others and handle their own discomfort by blaming the victim. Even people who care about us struggle with how to help us on a bad day.

Since no-one knows for sure what causes just about anything it seems that the kind thing for any healer to do would be to help, if possible, and not judge or accuse.

Life is stressful, but dysautonomia from all its causes may result in poor neurologic responses to everyday situations. My 2 cents.

OLL

[Lukkychrm42]

OK anyone who will generalize about all people with certain illnesses needs to be FIRED! Seriously, please find someone who's willing to work with you rather than against you.

[morgan617]

I think people may be physically predisposed to certain illnesses. Then a boat load of stress depletes your body of any of the reserves it has to keep an illness at bay, and you get sick. Some people just have stronger constitutions than others.

It's the chicken and egg theory, however I believe the chicken (the physical aspect) is well embedded before the egg appears.

I can't think of a single person who would wish this on themselves. My theory is, if we wanted all this attention and could bring it on ourselves, we'd at least give ourselves something that doctors can identify and not resort to calling us crazy!

I have OCD and when I am having a bad flare, I think that something I do or don't do or think may cause something bad to happen to someone I love. I KNOW this is NOT the case, but it's just the way OCD works. However, psychiatrists are quick to point out that this phenomena is called "magical thinking." We can not control what happens to other people or ourselves, if we just think the right things or wash our hands just right.

This is the catagory I would put this theory in to. I was tired and magically thought myself into a wheel chair and no life? I don't think so. I find it rather odd that my magical thinking with OCD can't do anything with myself or others, help or hurt, but when they can't figure out what's wrong with me medically, it's my magical thinking that gets me sick......does anyone else notice how convenient this is for medical people???? Or am I the only one to see something wrong with this hypocritical picture?

I think we all suffer from enough guilt and anger and pain to just accept that we have magically brought this on ourselves. I believe stress can trigger something that's already physically there, and that's as far as I will go with this. This sounds angry, but trust me, I'm not. It's just my point of view. That's the problem with just seeing words, it's hard to see the emotion in words.

I'm too tired to get angry any more.....

[Guest tearose]

morgan-I had never heard or understood what magical thinking was, thank you for that clear explanation. It is like saying wishing ourselves well is also "delusional and crazy".

I think for people who like me, have had many years of dealing with POTS, we have "tried it all" and so when we hear something we tried and tried and tried again....it gets to a point where I want to keep an open mind but I want to be realistic too.

I personally think pollyanna (from the old walt disney movie) was one of my role models from a young age...she played the glad game. I grew through this and learned how to keep the positive attitude but not "play the game". In my years I have learned that I OWN positive in every cell of my body, mind and spirit...to the greatest extent possible for me.

Not magical thinking, just doing my spiritual work in this physical vessel.

tearose

[Elegiamore]

Gang,

Mack's Mom, thanks for bringing this out into the open, as it's all the rage now. Look on AOL.com - The Secret is the top selling book; it is all about how thinking positive attracts good things into your life and that illness, poverty, etc. is caused by negative thinking!

I saw an episode of Larry King that was all about this issue - it is based on something called the Law of Attraction - positive thoughts attract health, wealth and happiness, but these people, like Mack's Mom's PT, take it to extremes.

The Law of Attraction originated from Abraham, a channeling group of spirits that spoke to the Hicks, who have probably made a fortune over the years selling tapes of their communications. My own husband came home with one of their books, after his aunt pushed him to read it - and I'm nervous that he's beginning to think I cause my own illness!

Larry King asked the speaker, one of the authors of The Secret, how it was that he had emergency appendicitis if he could avoid illness by "attracting" positive thoughts - the guy actually said that he gave himself appendicitis because he knew inside that he needed a vacation, but didn't take one! No kidding!

My own sister gave me the book "Remembering Wholeness" for Christmas, which parroted this idea. The author claims to have gotten rid of a tumor by thinking positive. Yes, there is some evidence in medical literature that positive attitudes improve health, but let's get real - we would all be immortal according to these people! The author of this book states that people die when they have completed their job on Earth and need to die to help others! Please!

Yes, Mack's Mom, this stems from the truckloads of people who think our illness is mental (the CFS deal). But I agree with Momto - I know that I have panics from massive adrenaline attacks; I know I am depressed because of years of being medically abused and told I was crazy before we had documentation of our illnesses. People want it both ways - my sister wouldn't let me hold my niece as a baby because she thought I would give her CFS, and then she turns around and says I'm a lazy no-good loafer and refused to help me in any way.

I have been sick ever since I was raped and caugh numerous types of herpes, so I guess I am at fault for that.

Elegiamore

[blsvlo]

I am a very open minded person..... I am a researher....give me something and i will do everything i can to study it... my family was involved for a few years in a church that believed like the secret believes.... we are God's children and we are not suppose to be sick of any kind and it is of the devil.... when God led us out of that box I realized that for a year my daughter was sick and all we did was speak over her that "we do not claim this illness it is of the devil and you are healed"...we spoke it into her over and over...... when our eyes were opened we came to the conclusion that she needed medical attention and we shceduled her for surgery and 3 years later she suffers no more ..... How ignorant were we....that should be against the law and to me now that is neglect..... i use to cry many nights thinking i could have hurt my precious child for the rest of her life and she suffered while we pretended she was not sick.

I was a very healthy adult and didn't even have a family doctor because never went to the doctors.... never dwelled on anykind of illness.... i had some tingling in areas of my body i could n't tolerate excessive workouts but never minded or thought of it as anything to worry about....

after a wonderful vacation with my family i had to go to the er because of some crazy symptoms i was experiencing...they ran test ...mri shows 6 lesions on my brain, spinal tap show....multiple sclerosis.....what? what is that?

I consider myself a very strong person and mentally sane and have found my God center......

today at 31 i am bedridden because of symptoms of POTS along with MS......drs. are so baffled but i'm fighting so hard to find someone who will say to me this is a easy fix and you can start playing with your 3 little girsl again....

I cannot see how I called this into my life. when i watched the secret i could not connect with it at all....we have enough to handle to pile on guilt that we may have caused this whole thing....

too many people in our lives are suffering...

another aspect to consider is the chemical we eat everyday and the toxic environment we live in... they say eat healthier but healthy food is way too expensive for the average person....

who in your life have you come across that inspired you the most????

i have found it was the ones who face disabilities or those who are going through some things that you could never imagine how they are handling it....those children in the cancer ward who still have beautiful smiles on their faces and are so strong and it makes our problems seem so small.....

>>>>>something to think about<<<<<<< God uses all of us,,,sick, well,, suffering...

we would look like a bunch of robots looking the same acting the same and speaking the same....how boring would that be.... God made us all unique.....

hugs to all LIsa

[runningshoe]

I am very weary today but my thoughts are:

I too could not make sense of my illness when I tried to apply "the Secret." My first pots symptom was on a beautiful day when I took my dog running in the woods with a bunch of friends. Happy and healthy (so I thought), I jumped in my car and headed for home. That's when everything went dark and I had my first "episode." No, the secret does not explain my illness.

Today I went to an energy healer. She was amazing and knowing nothing about me she said "there has been a miscommunciation between you brain and the rest of your body" YES. She said so many things that made sense ( too many to list but things such as scar tissue over my belly - Hysterectomy...) Okay, my point, and you don't have to believe in this stuff but it helped me today. She said your body wants you to know that you didn't make this happen and it is not your fault. I wept because there are so many people who want to point the finger and say "I don't live like her so I won't get sick like her. " There are shelves of books at the store about healing your own pain by just ignoring it etc. I wouldn't wish this on anyone including myself!

But, I do believe we have to listen to our bodies. We have to respect their limitations. We have to allow time to heal. When I was first sick with pots I just kept on going. I worked, took care of my kids, etc. It proved to be too much for me and I fell apart. I should have given myself time to rest and regroup. Lesson learned! In yoga class the instructor reminds us to thank our bodies for what they can do. That I what I choose to think about.

[yogini]

For me, this issue is not even open for debate. With so many of us that have other family members with POTS, or other documented conditions which cause our POTS (like EDS), there is no way that POTS is in our heads or caused by thoughts. I have a documented BP of 90/60 my whole life - this was even before getting POTS and being otherwise completely healthy.

I do agree with Morgan that some of us have underlying conditions which might be worsened by stress. I was definitely pushing my body to the limits when I got POTS and I blame myself for that somewhat. But then I see many other people my age pushing themselves to those same limits and not getting sick. This to me means that something is different with my body than other people.

I think part of the problem is that people who aren't chronically ill just can't understand. I must admit that before getting ill I never understood chronic illnesses such as CFS. I remember having a classmate in high school with CFS and wondering why she wasn't "just" getting better...although I never would have had the gall to accuse someone that their thoughts were causing their illness. And your PT is a medical professional, so he/she really has no excuse.

I did buy The Secret DVD and I think it is useful in some ways. I often find myself thinking negative thoughts worrying about having a POTS attack when many times it does not happen. I do think it would help me to think more positively, and this might be true for others with moderate POTS like me. However, I totally disagree with the medical portion of The Secret. It even goes so far as to say that people can cure cancer with positive thoughts - that is just insane! ABC News did a piece on it last week, and many doctors and others are outraged. I was able to ignore that portion and focus on the concepts in the Secret that would be helpful to me. I think the basic message iof the Secret s to visualize your goals and to take affirmative steps to accomplish them. I know I lose sight of this sometimes in getting caught up in my illness and also just basic life.

[Rachel]

Wow. I will second what Maxine says. This sounds more like psycho-babble. I wonder what the physical therapist's theory would be if he got cancer or some other serious disease. I actually think it is pretty arrogant of someone to think that they can control all aspects of their health. Yes, we can make wise decisions: eat healthy, rest, exercise, etc. But we can't control everything. Even the most positive "positive thinker" will one day die.

I can say with certainty that I did not cause my health problems.

I could go on, but I won't!

Rachel

[MightyMouse]

Your practitioner is feeding you a crock of poo. Explain to me how my errant thought patterns changed my genetic make up as a one cell organism, before I even possessed a brain to think with in my mother's uterus? Did her bad thoughts make my genes faulty, since I didn't yet have a brain to think with? or I caused my own EDS and POTS/NCS,? Absolute rubbish...

perhaps the practioners improper thinking patterns have caused him to spew errant theories. That's my 2 cents, or perhaps a whole dollar's worth.

Nina

[deucykub]

Nina just put into much, much nicer words what I have been thinking since I read the post on your PTs theory and since seeing that god-awful Oprah episode on "The Secret" (well, half of it - I turned that bunk off). (I think Oprah forgot to take her discernment pills this month - I mean... really, what nonsense! Let's all believe an egocentric woman with no formal training who writes a book - and gets rich off of other's suffering - about controlling our universe through an unscientific LAW??? Can I have some of what she's smoking, cause maybe it will make me feel better, too! )

So, I'll just keep my mouth shut (can you believe this is me keeping my mouth shut? ) and say that I agree with Nina, 100%.

It's so easy to let people lead us with non-scientific theories that put us in control because maybe, just maybe, we can think our way out of feeling so awful. Please don't let anyone ever deceive you into believing this is your own fault, because that is the by-product of those types of theories.

People who espouse such theories, particularly those in the medical field, to those dealing with chronic illness are irresponsible and thoughtless.

Okay, I said a little more, but really, I'll zip my lip now...

Deucykub

[pat57]

LOL, Nina- you go!

[MightyMouse]

I wanted to clarify that I'll concede there's an impact that stress--physical and emotional--can have on a person with autonomic problems, and that to some degree we can change how we react to day to day hurdles. However, saying that our thoughts cause the genesis of our disorder flies in the face of science. See the "causes" and "mechanisms" sections of DINET for clarification on this topic.

Nina

[juliegee]

Wow, guys-

Thank you for all of the responses. I appreciate your frank insights. For the record, I don't believe that I caused my POTS. The genetic component is too strong in my family, with my grandmother, mother, myself and son all affected. (I can just hear some new-age quack saying, that's because you all were reared in a similar environment (not true!) and suffer from the same cognitive distorters.) I really do believe POTS is basically physiological in nature.

I apologize if this topic offended anyone. The concept of blaming the patient, frankly, greatly offends me. But, it was interesting to read all of your ponderings. The push and pull between physiology and psychology is interesting to explore. I suspect that all of us were born with a genetic predisposition towards POTS and various traumas in our lives (illnesses, surgeries, accidents, childbirth, psychological traumas, etc.) pushed us over the edge.

For what it's worth, I don't think any of you caused your POTS either. I am daily awed by your (collective) courage and strength.

Rachel, I, too would love to see how my PT would change his tune if he were to become stricken ;-)

Julie

[MightyMouse]

Julie, you haven't offended me... however, you can tell your PT he's now on my hit list.

Nina

[deucykub]

Hi, Julie:

No offense here either! I'm actually really glad that you brought up the subject, and we were all able to express our opinions about it. I think this line of thought is always brewing, whether in our own minds or in the minds of those around us. We hesitate to talk about it because most of us have been accused of not really being sick at one time or another - often by doctors. Discussing this gives us a good arsenal for those misdirected souls who point the finger our way and dare to tell us.

My previous post was written tongue-in-cheek. I stand by everything I wrote, but to stay sane in this world, I like to keep laughing at the ludicrousness of it all.

Thank you for bringing up such an important topic for all of us!

Deucykub

[morgan617]

I wasn't at all offended, but am constantly amazed at the complete stupidity of people...or ignorance, or whatever it is....