Bringing up a post from below

[Jackie]

I just wanted to post a site I found yesterday that looked really interesting about connections between CFS, IBS, autonomic problems, etc.

http://www.mind-body-health.net/

I think it is very interesting because I myself when I got sick last year, thought that it seemed like there was some quirk in my HPA axis because of awakening at the same time each morning early between 4-7 (?) to have diarrhea which is the time that the HPA releases all the hormones....later with calcium supplementation which caused me to have excessive thirst and urination which was like a diabetes insipidus-type syndrome my symptoms progressed to awakening at the same time drenched in sweat with my heart racing, hands and feet sweating profusely, and loose bowel movement, etc....then came all the extreme body aches and nausea, inability to eat, quick weight loss, and was just the beginning of the electrolyte inbalance and palpitations which progressed later to anxiety and panic attacks once they started me on anxiety meds, etc. The trembling problem I never had until they tried me on the dose of Lexapro and guess what...sometimes it is still there, usually not visible but inside like others describe and that is how I know it is time to take my Xanax. Talk about fear of meds. Anyhoo....

Interestingly, on this website it is theorized that chronic fatigue syndrome and fibromyalgia, etc., may have to do with a dysruption in the HPA axis and hormone secretion, etc.

I know I probably sound crazy - ? what else is new? but I really think I know my body and this stuff makes sense to me but yet without a degree in medicine I don't know how to put all the pieces together. I know how it all started...exactly as above..and I theorize that the dysruption in my body's ability to regulate fluids because of whatever reason when I took the calcium caused the POTS to present itself fully when I had only had subtle symptoms over my lifetime....in other words aggravated everything and threw me into a complete POTS flare.

I told my husband that someday, maybe 20 years from now they are going to know what to do about this stuff and it probably will boil down to something ridiculously simple like a shot once a month or something of some hormone or something and they are going to be shocked looking back that they had everybody taking all these meds we are on. It reminds me in a way of that one movie Lorenzo's Oil and I apologize I don't remember the name of the disease but it boiled down to a simple treatment but it took somebody taking time and effort to keep putting the pieces together until they unlocked the secret which was an easy cure once it was discovered what the body was missing/lacking, etc.

Anyway, check it out and let me know what you guys think. My doctor once mentioned during all this that I could have CFS because of a high EBV titer...like everything else though who knows and labels without definitive treatment is not exactly helpful. When are they going to get to the bottom of these disorders/conditions?

[calypso]

I had also stumbled upon this site a couple months ago ... I agree and think that stress, either from illness or life, triggers nearly all illnesses like POTS, CFS, etc. One thing falls out of balance and the rest follows; then your body tries like crazy to keep compensating for things. So far, the one true thing that helps my POTS is exercise every day, eating well, sleeping well and relaxation/meditation.

[EarthMother]

Jackie,

Thanks for the link, I also like the HPA material I've read. It's a strange circle of symptoms many of us have in common.

I also like meditation & stress relaxation tools.

BTW I put up another free 10 minute meditation, this one on relaxation, on my web site. One by one I'll post them all as free downloads for fellow POTS friends.

Enjoy!

EM

http://www.coolkarma.com

[EarthMother]

I just finished reading this guys' book from the web site Jackie posted below

http://www.mind-body-health.net/

It's really cool. First, I love the concept ... 'download my book in pdf format for FREE ... then if you like it you can make a donation.' If Doctors followed that business rule, we'd all be in better shape!!! ;-)

The book reads like a master's dissertation on the psycho-physiology of stress. Which is a cool thing for me because my college thesis was in the same field <many moons ago.>

The HPA axis theory is strong and for those of us with CFIDS, POTS, panic or depression ... it is likely an important piece of the puzzle.

The author spends a lot of time talking about the plasebo effect. But don't let this put you off ... what I think the deeper message is here is the power and wisdom of our body-mind. Indeed I'll go a step further and say it is the idea of 'perceived control' that is the key element in our recovery. If we believe there is a means for our body to rebuild, then we have a better chance at success.

Look at the implication here for our medical professionals ... we all know how much better we feel when someone finally believes us and we know they are on our side. Equally as important then are those encouters with the uninformed 'doctors' who tell us we are crazy and attempt to diminish our confidence and remove our perception of control.

The antidote for the latter is ofcourse this wonderful website, where we can come and validate our experience, our wisdom and drink in the confidence that we are not alone, but rather in very good company as we travel down this healing road.

Warm embraces of gratitude.

EM

[Jackie]

I know isn't a cool site for information really. I haven't downloaded and read the whole thing but from what I looked at, it sure seemed to make sense. I definitely believe the HPA axis plays a role for some of us who have trouble with fatigue, sleep problems, brain fog, panic attacks, anxiety/depression, sweating, etc.

My sister who was diagnosed with MS has had problems for years before her diagnosis with bladder leakage and actually breast discharge/leakage. She had it worked up at one point in her 20s (the breast leakage) looking for pituitary problems and they didn't find anything significant that I remember. Anyway, fast forward to her mid 30s and she ends up diagnosed with MS...still has the breast leakage at times but no lesions or anything showed on CTs or MRIs of her brain on the pituitary and she has neurogenic bladder which means she has to pretty much wear panty liners all the time. If the MS is attacking that part of her brain, you would think plaques would show up, however, they have found no plaques to date actually but the specialist she sees definitely believes she has MS as she has right sided neuro deficits, spasms, burning pain sensations all over her body, etc., etc. To talk to her about her symptoms, I don't know how she stands it. Medication I suppose. She puts me to shame though because I think I would have lost it a long time ago with what she has been through.

Anyhoo, yes I personally think there is a link too. Thanks you guys for checking out the site and thanks EM for the link to the relaxation. You know, after my go-around with an outpatient program to help me get on some medication for my nerves after they messed me up pretty well with medication from the ER and the dose of Lexapro I couldn't tolerate, I was actively seeking relaxation tapes/CDs because we used them in class occasionally and they really helped. I had no luck whatsoever except 1 outdated one from the library that I borrowed. The ones you post..do they have subliminal messages or anything or just plain talking or music? I didn't listen yet but will probably try it...it's been so long I gave up on finding any!

[Jackie]

Oh and I also wanted to say about the placebo effect...I wasn't bothered by that because I do believe our minds are powerful and can effect so much like you said about outlook, etc. I was just telling my husband, I almost wish some doctor would say "oh yes, POTS, yes that is completely treatable, etc....just take this...no side effects, etc." (sugar pill or whatever) and you will be completely healed...and if it worked and tricked my brain into thinking I was healed then GREAT!!! I really don't care how it happens at this point so if I ever get back on track financially I'm planning to look into acupuncture, etc. too. It couldn't hurt I figure!