Why A Daily Pitocin Shot?

Please get me some Pit - and fast!

Recently I wrote about the three shots I need daily.  I promised I'd explain why I needed pitocin and here I am, ready to deliver.  (Ha! A pun as you'll see shortly!)

I'm not completely sure how it was that I stumbled upon this bit of hope to make my days marginally better. But when I did read about it, it made complete and total sense.  There is, however and unfortunately, no way to measure one's pitocin level - or not routinely.  But my medical history - as far back as 1979 - convinced me that this would be something my body needed.  

What IS pitocin and why is it needed?  Pitocin is actually oxytocin when it's in a woman's body. It's a neuromodulator in the brain - and don't most of us with CFIDS and fibro have trouble with neuro-anything? Back in 1997ish, I'd read that really there are only a few known reasons for oxytocin but they are mighty big ones!   As many women already know - the hard way -oxytocon is needed in order to push out a baby during labor and then to make the uterus contract after delivery of that baby.  Without that contraction, a woman will bleed out.  It's also believed to help maternal bonding and breastfeeding.  Because of recent research, oxytocin has even been dubbed the "love hormone."  However, we won't get into that part today.  (In researching parts of the oxytocin story for this post, I came across other, updated reasons that might show the importance of oxytocin in other areas, but that'll have to wait for another post, my lovelies!)

Back to 1997ish.  My brain went Bingo! at reading about pitocin's (oxytocin's) role in childbirth.  After all, my thinking went, child #1 was a week late. Furthermore, my uterus didn't contract at all and within seconds I gushed out half my blood volume, almost dying in the process.  Thankfully, we had one of the best ObGyns in NYC, but I remember him screaming for more IV pitocin as my body went into convulsions and the bleeding wouldn't stop.  Everyone in the delivery room held me down so that he could stitch away at me and thus save my life, screaming also, "keep her down! Keep her down! Why is she still jerking?  More pit!  Keep her down!" in a voice no one ever wants to hear.  Yep. I had a 10-pound wonder and it made me laugh to no end that my ObGyn went around the university hospital center making sure everyone gave my daughter a good look at the nursery.  She was, if I may say, indeed splendid.

Child #2 was a whopping three weeks late and showed no signs of ever wanting to leave a perfectly happy and comfie home.  Lest you wonder if I had my due dates correct, child #2 came out looking like an old man, shriveled with long nails and lots of hair, having weighed in at 9 lbs, but having been in my belly at 10 lbs. - having lost substantial weight because the placenta had become very weak from "old age" and wasn't delivering blood efficently to the baby.  It horrified my new ObGyn (we had moved) because I did indeed have my dates right and he had "sort of" doubted me.  Child #3 went two weeks late and having learned the lesson from child #2, labor was again induced.  And pitocin was further needed after delivery, in order for my uterus to contract, yet again.  (Just for your info: that child was also a 10 lb. wonder - see the picture above!)

Adding to all the complications, child #1 was a mid-forceps delivery and child #3 was a vacuum extraction.

So, did it not make sense that I had a bit of a pitocin problem?  I mean, the handwriting was on the wall - how much clearer could it be?

Evidently not clear enough.  My GP and rheumy/immunologist were reluctant to go the pitocin route.  They were, understandably, concerned about going to such drastic measures when there was no real literature out there about pitocin and helping CFIDS/ME/CFS and fibromyalgia.  But after two years of debates (yes, 2 years!) they gave in and the grand experiment started.

Within minutes of getting my first injection I noticed that my eyesight was better.  For once, my bad memory came in handy.  I was reading a book when that first shot was given - I'm a complete chicken when it comes to needles and preferred not to watch the thing going in.  About five minutes later I yelled out to hubs, who was on his way out the door, "hey, I can see better!  What's that all about?"

I'd already forgotten that I'd had a shot.  Groan!  But I also forgot that I'd read that if you do indeed have a pitocin deficiency, it should register with your eyesight within 10 minutes.  That was the acid test!

Well, like the kids say, duh!  Good thing hubs doesn't suffer from a poor memory - knock on wood and a tphoo! tphoo! tphoo!

So what's this thing with eyesight all about?  What we have, according to my rheumy, is a problem of the brain's inability to correctly interpret the signals from the eyes.  Who knew?

So, there you have it: I've had these pitocin shots daily since approximately 1998.  I consider it a good move. My overall plan is that if I can improve my life 1% here, 2% there, .5% in yet another area, pretty soon those numbers add up to what is, for me, a significant number, one that makes life more bearable.  So, there you go.  The pitocin is helping in some indefinable way, more than just the eyesight.  I consider the improved eyesight to be just the tip of the iceberg.

And my brain, which is always thinking in very frightening ways, can't help but wonder, is this a reason perhaps why women get CFIDS and fibro more often than men?  We all pretty much agree that what is known as CFIDS and fibro may indeed be different illnesses but at the moment put under the same umbrella.  Who knows where MY subgroup will end up?  Food for thought?

As always, I hope everyone's doing their best, only better!  Ciao and paka.


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The Insomnia/Weight Monsters

What I've lately restrained myself from mentioning is my weight.  It' so very frustrating because about five years ago I took off approximately 50+ pounds and managed to keep it off.  Getting rid of some medications made it easier to lose the weight.

However, since my hospitalization, one huge contributing factor in my weight gain had been a result of changes in medication, out-of-wack hormones and stress.  How could this have happened?  Oh, but the strangest things happen to those who have CFIDS/CFS/ME and/or fibromyalgia, I think you'll agree. Part of the problem is that my sleep (or lack thereof) has put on the poundage to my bod.  I mean, let's get real: only three hours of sleep in 42 hours simply doesn't cut it.  

As I've written before, studies have shown that there are two critical hormones (leptin and ghrelin) which the medical community has come to understand, relatively recently, and that's the sleep/weight relationship - the how and why this happens.  Link over to the little purple bit and you'll get a bit of explanation of how these hormones have such powerful effects on us - and the impact when hormones are out of wack.  Have you doubts?  

"According to the Atlanta School of Sleep Medicine: "Leptin and ghrelin work in a kind of 'checks and balances' system to control feelings of hunger and fullness. Ghrelin, which is produced in the gastrointestinal tract, stimulates appetite, while leptin, produces fat cells, sends a signal to the brain when you are full." ~from this post. 

Remember then, when the teenager hormones which make a kid crazy, come into full speed ahead?  And we all laugh at how "hormonal " women become once they're pregnant, not to mention the postparnum blues.  With me - as is with many of you out there - things are further complicated by the CFIDS/fibro nightmare. I've got many hormones going against me and one example is: we're now seeing the mess my hypothyroidism alone has cost me.  Furthermore, take into account the mess in terms of other factors that contribute to weight loss and weight gain and you've got yourself a real puzzle.  Part of the problem is that my sleep (or lack thereof) has put on the poundage.

My medications have been changed quite a bit in the last six weeks and some are those that make you gain weight.  Do you see why I want to get off of those meds as quickly as possible?  Tapering is just taking way too long.  Soon I've be rivaling any overweight walrus. Gloom.  Despair!  (And agony on me... !)  For a laugh, check out the YouTube clip from HeeHaw.

The pain I experience - be it from body pain or in the form of migraines - has been almost out the wazoo and I'm realizing - yet again - that if pain is not under control you're going to add weight.  It has to be that some primitive part of us believes that eating is indeed the answer to all.  

I'd lived my very own version of the "Lamaze" principle as far back as I can remember.  I was thrilled to be able to learn this "distraction" method officially because finally I'd get real instruction as to surviving much pain.  I'd be able to endure much pain - which was only fair as I failed Lamaze with my three pregnancies and labors.  Yes, I learned from early childhood how to try to get your mind on anything but the pain.  Wherever I lived, I always had the cleanest floors which sparkled:  mindless work in which to get your brain as far away from the pain as can be.

And now I've worked myself  into an all-too-common vicious cycle: in order to avoid confronting the pain, we then end up overdoing it. 

• I've long wanted to do something on what we call "social media" and reading. In taking on the project in my little converted room with 1/4 of books in the house, a wonderful thing happened.  I found one of my notebooks in which I kept a list of each book I've read over a few years.  The notebook was tattered - but then so am I!
• Going through that notebook and seeing the book titles I was able to remember what was going on in my life at the time.  It was almost easier to go back in time with book titles than with aromatherapy essential oil (which have yet to reach my house).
• I've meant to start a reading list to this blog...
• Books are all over the house and getting to them, at the moment, is harder than qualifying for the Olympics.  Now that I've found this notebook, however, I've got many valid reasons if my book list doesn't pan out. 

Yesterday, I tried to ignore my pain by cleaning the little room which holds some of my books. (Yay! It's great that I found books I'd been looking for.)  But today I'm sweating like no tomorrow and running a fever, fighting a migraine and all sort of other goodies.  But it was so worth it.  Few things can compete with clean and nice-looking surroundings.

It's an absolute must that I return to my own version of  "eating healthy and well."  Through years (decades?) of experimenting, I've found a diet that works for me which not only takes off weight - instead the real bonus?  My migraines go away as long as I'm dedicated to that sort of eating. 

Goodbye, you nasty pounds - that's about 2.5 stone for our British cousins.  I hope you understand why in my case the extra weight must get lost!

And as always, I hope that everyone is doing their absolute best - only better.  Ciao and paka.


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Lupus & DHEA

About four weeks ago, I wrote a post about hormone deficiencies in fibromyalgia, specifically Growth Hormone and DHEA (Dehydroepiandrosterone).  I made a point of mentioning that levels of these hormones, or their by-products, are usually measured by blood tests and that these hormones are prescribed when deficiencies are discovered. However, because I've realized via twitter just how many lupus patients also have fibromyalgia and because for various reasons, lupus has long been on my personal radar, my ears perked up when I discovered that DHEA is used in lupus, though differently than it is where fibro is involved.  In other words, DHEA is "different" for lupus treatment.  When I heard my rheumy say that DHEA is prescribed for many lupus patients without a base line blood test for DHEA having been drawn, I was hooked, not to mention almost shocked. The "almost" with "shocked" is added only because really, with lupus, not much is "normal" at all.

To get back to the DHEA matter, I also found this interesting since too much DHEA can cause facial hair growth and acne, side-effects which are quite undesirable for women. In that earlier post when I mentioned that I'd been on and off of DHEA for a few decades (link), in the interest of brevity I didn't mention that I know my DHEA level is getting too high and that levels are now "fixed" until my next major health crisis comes along by the much increased peach fuzz on my face.  Being practically hairless on my face, it's a shocker to see anything show up in the "beard" area.  Actually, you'd think that when I have no "peach fuzz" whatsoever, it would be signal to me that my DHEA is low, but we're talking about moi here, the "queen of no short-term memory," after all!

But back to DHEA and lupus.  Unfortunately for the female of the species, it is women who tend to get lupus far more often than men.  (Yes, walk into a rheumy's office and you see about the same female to male ratio as you get in the audience of "The View" - or in an ob/gyn's office for that matter: take your pick!)  Normally, when a doctor prescribes a hormone to someone who is deficient in that particular hormone, the doctor prescribes it to make up for a deficiency.  Pretty straight forward here, right?   However (and you just knew a "however" would come sooner or later!) when it comes to women and lupus, DHEA is often prescribed to them even though they may actually have normal levels of DHEA.  Interestingly enough, DHEA is ordered for them without blood levels having been measured, in which case the DHEA is intended to act like a drug (medication).   Consequently, the DHEA in lupus has effects beyond simply maintaining the body's hormone balance. Why do they do this, pray tell?  At first glance, it would seem so irresponsible and reckless!

It all comes down to the effect of sex hormones on patients with lupus.  The more "female" a woman is, the more likely her lupus is going to be severe, and possibly life-threatening.  This "phenomenon" became known over 30 years ago when animal studies were done and data collected.  There is a strain of mouse which develops pathology that is almost identical to lupus in humans.  These are NZB/NZW (New Zealand Black/New Zealand White hybrid) mice, which have been extensively studied in order to gain insight into lupus in humans.  When the ovaries are removed from the female mice and the mice become less "feminine," they live longer and have less kidney disease than their female counterparts.  On the other hand, if the testes of the male mice are removed, they die sooner than their male counterparts.

The same pattern holds true with hormone injections.  If you give male hormones to the female mice, the development of lupus is delayed and they live longer.  If you give female hormones to the male mice they die sooner because they get lupus earlier than their male counterparts.

DHEA is made by the adrenal glands of both men and women (humans).  But men typically have much higher levels than women until advanced age.  That being the case, medical investigators decided to treat female lupus patients with DHEA to make them less "female."  It seemed to work and lupus patients receiving DHEA seem to fare better than they did before they started getting their DHEA.

It actually made a lot of sense since those women with lupus who became more "female" by taking birth control pills or becoming pregnant faced horrible complications due to lupus flares.

Before I get into the home stretch of this post (hallelujah!) I would like to point out that in the case of DHEA and lupus, not only should you discuss this with your physician because there are a number of circumstances that would preclude you from taking DHEA.  Furthermore, the DHEA should be bought from a compounding pharmacy to insure the highest quality preparation possible, vis a vis, consistency and excellent bioavailabily.

Here is a prime example of a hormone being used as a medication to treat a disease instead of a supplement to normalize the body's hormone status.  Even though some of the women with lupus receiving DHEA develop facial hair growth and acne, most would prefer these side effects to having a miscarriage or needing to go on kidney dialysis.  Moreover, an added bonus of taking DHEA for lupus is that the disease becomes more easily controlled, allowing the patient to often get by with less medication, including prednisone and it's humongous list of potential side-effects. 

Even though fibro is found in more women than men my rheumy told me that the only time he uses DHEA for fibro patients is when they are indeed deficient in it.  Of interest is that my rheumy has actually measured DHEA in his lupus patients.  Many of these unfortunate women were found to have no detectable DHEA in their blood.  So perhaps giving DHEA for lupus without testing isn't so crazy after all.  It seems to get results.

And you wonder why I find lupus fascinating?

As always, hoping everyone out there is feeling their best, only better.  Ciao and paka!


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Just Thinking: The Sleep and Weight Connection

                                                They look so deceptively cute when they're asleep!


Just in the last few days I've sort of been browsing the Internet to see if there were any good ideas left that I'd not considered regarding weight loss, or ideas I'd forgotten (very likely!).  It's strange how most of those who have CFIDS/ME/fibro and insomnia tend to have weight issues and everyone seems to blame the meds which need to be taken (valid point) and the inactivity, for legitimate reasons, on the part of the  patients (also a valid point).  However, the vast majority of "us" have too much weight and the lesser percentage of patients with these issues tend to have trouble keeping weight on.


What, pray tell, is it that makes for one group to gain and the other to have trouble keeping weight on?  It just doesn't seem to be all medicine and not enough activity, at least not in my case.  I've done a lot of thinking about it, thought back to my own early days of this illness and then thought about those whom I've personally known with the illness(es).


I'm not sure if anyone has looked into one theory I've come up with.  When I mentioned this to one of my doctors recently, he said that he'd never thought about it quite the way I had.  I tend to do a LOT of thinking, much of it outside the box, and I also have an awful lot of time on my hands, so, what else is there to do BUT think?


And so I can't help wondering if there isn't another huge factor involved here?


Could it be that in the first stages of this illness, sleeping so much in the beginning of CFIDS/ME may affect our appetite and weight?  I've stayed away from the sleep issue thus far mainly.  It's such a difficult and complex subject and each time I start a post on it, everything gets all jumbled up.  I want to get it ALL out there and can't seem to manage the "baby steps" approach.  I'm hoping that today's effort actually works!


In recent years it's become clear that when it comes to sleep - or lack of it - there are many hormones at play - and they all heavily influence our gaining or losing weight.  Basically, the less you sleep, the more poundage you put on, the more (as well as better sleep - very important point!) you sleep, the less poundage you put on.  I have to resort to simple explanations because I'm not a scientist, after all, only a patient. But what brought the sleep and weight relationship to the fore was when studies started to home in on appetite and specifically, research on the hormones leptin and ghrelin.  Doctors say that both can influence our appetite and studies have shown that production of both may be influenced by how much or how little we sleep.


Suddenly doctors saw that if a patient experienced a sleepless night followed by a day when no matter what the patient ate, he/she never felt full and/or satisfied, these doctors surmised that the patient was experiencing the workings of leptin and ghrelin.  According to the Atlanta School of Sleep Medicine "Leptin and ghrelin work in a kind of 'checks and balances' system to control feelings of hunger and fullness. Ghrelin, which is produced in the gastrointestinal tract, stimulates appetite, while leptin, produced in fat cells, sends a signal to the brain when you are full."


So what's the connection to sleep? "When you don't get enough sleep, it drives leptin levels down, which means you don't feel as satisfied after you eat. Lack of sleep also causes ghrelin levels to rise, which means your appetite is stimulated, so you want more food."


The two combined, the sleep specialists say, can set the stage for overeating, which in turn may lead to weight gain.

There's a whole lot more to this whole thing, but these are the latest basics. And I'm so glad the docs have finally figured it out - I've been telling them for at least 30 years but no one listened!  At least one neuro acknowledged his amazement and asked, "how did you know?"  My answer: "YOU try living my life and you'd know too!"  Note to doctors: please listen to your patients!


So, if in the early stages a patient with CFIDS/ME and fibro, sleeps a great deal of the time, can that explain why that person fails to keep weight on while others - ones who don't sleep - have trouble keeping it off?  I remember that when hubby and I first got married, he was shocked at how much I slept on the weekends.  We both remember my arriving home from work on Fridays and sleeping through till Sunday, on the living room couch, still in my work clothes, in our teeny tiny NYC apartment with hubby moving around and not waking me in the slightest.  


And is there a point where things get switched around?  That is, because of all too many factors, "we" eventually start having trouble sleeping: because pain sets in and interferes with any sleep patterns, as do school and deadlines, colicy babies, and so the hormones are off again and weight is put on, big time?


There are so many more issues at play here, but I did want to at least start this unorthodox dialogue.  I, personally, am really scared of the whole sleep bit.  It's getting harder and I'm getting older and I simply don't have the stamina needed to fall asleep - it's so much work -  because make no mistake, sleeping with no schedule, not enough hours for any period of time, and the lack of good quality sleep, all takes a huge toll on you.  However, at night I'm definitely not desperate enough to take rohypnol, the date rape drug one neurologist insisted on for two years!  Ambien has caused me enough trouble, thank you very much.  I'm not even going to mention the mess Lunesta got me into!  I'm trying to cut back as much as possible with those meds which make me gain weight (because I find it easier to function with less weight rather than more weight) and, of course, I check and recheck all my meds to keep track of side-effects which might interfere with sleep. I don't take ANY chances of ingesting anything that might interfere with sleep.


Is sleep the bane of people's existence out there, too?   Don't be shy. We'd love to hear others' experiences.


Here's to everyone feeling their absolute best, only better!