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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"Outing" Myself!

In the past year plus that I've been writing this blog, I've pussyfooted my way around who my sources are and about my own qualifications regarding all things fibromyalgia and CFIDS/ME/CFS.  Though I'm not ready to out any of my medical sources, I am now ready to "out" myself.  

I think that it's common knowledge that Irritable Bowel Syndrome (IBS) is a huge unpleasant problem in CFIDS and fibromyalgia.  But do you know who was one of the first to describe this association in medical literature? Music - please.

Moi.  Me.  Yes, me.  Laughing out loud!  I've kept mum about part of my backstory here on this blog for many reasons.  One of them is that I wanted to establish myself before revealing this bit of my history. I also wanted to make real friends on twitter, for example, knowing that they are my friends because they like me and read my blog without any sort of gimmicks.  I'd wanted the support, encouragement and insight into what readers and followers gave me and what I gave them to be untainted by "whom" I might just possibly represent. I also didn't want to start going about showing off or to have people thinking that I'm showing off. However, I think I may have come off as a bit of a braggard because I was so defensive of my sources and my own complete history - just maybe!

But getting back to the IBS.  Because this was such a novel idea, at first this correlation was introduced as an abstract at a medical conference.  It was later published in a rather small journal, in our then rather-new home state.  (It didn't bother my rheumy.  He's very well published and internationally known, has a standing column in a pain journal, has out-the-wazoo credentials - I get only the best for my readers!)   It took years for this relationship, that is, IBS and fibro, to gain general acceptance.  And now look where we are.  Irritable Bowel Syndrome is so prevalent and so accepted that it might even be considered a characteristic of fibromyalgia. (Ah! Still waters do run deep don't they?  I do look so unassuming, no?) 

So why now as far as the outing goes?  I've "outed" myself because I'm tired of reading about uninlightened (shall we say?) doctors out there and what they are doing.  And I'm thoroughly disgusted with some of the medicine I see practiced by those same doctors.  

I'm also tired of seeing bad science out there.  I'm tired of reading really bad thinking and hairy schemes that patients are desperate to apply to themselves and I'm disgusted with half the psycho-babble out there.

Furthermore, I'm tired of having to write about medical problems which I know to be true and having to try to convince people that I know what I'm talking about when I do write about DHEA, Human Growth Hormone Deficiency and other hormonal deficiencies - or any other aspect of fibro and CFS for that matter.  And I want my readers to know that if I write something, it is in fact, true.  It may not apply to you, but it is grounded in fact - and is, in many ways, before its time.  (She says ever so modestly!)

If a reader doesn't know my "credentials," how can he/she begin to understand that my blog is grounded in real science and real up-to-date developments in the field?  This is a problem I've lived with since I started this blog.  For the most part, people have believed me in the past because I have been ill for so long, for 38 long years.  And doctors believed me, luckily.  I have stated that I have impeccable sources and I do, indeed, have them.  However, it's getting harder to write posts where I have to tiptoe around what my own "credentials" are.  So, in light of making my life easier, I've decided that I won't need to be quite so careful about my own credentials.  After all, getting an idea accepted by the medical community is a huge deal, being reviewed by other physicians who have huge names.  It's much bigger than a blog or even a book.  

I was, in fact, an English major in my former life and I do have a Master's degree in English - hard as it may be to believe because I know my writing sucks is so awful.  However, the "awfulness" just gives more credence to the fact that I am quite impaired by CFIDS and fibro.  Everything I've written about myself in the past year and a half has been true as far as I can remember.  OK.  Memory may be a sticky wicket here. (!!!) However - thankfully! - hubs has a good memory and I try to check with him about what he remembers.  But that English background was very useful in that it taught me how to research most subjects and, more importantly, how to think logically and thoroughly, much of it to my family's chagrin.  They have stated often enough that they don't ever want to be found inside my head.  Ever. <sigh>

So, how did this bit of medical history start?  When I came to my rheumatologist and brought up my theory of fibromyalgia coexisting with IBS, we decided I would write up a simple questionnaire for his patients and see if I was seeing things right.  Lo and behold, I was!  Other ideas I had for research (including, infamously, a question about the correlation between breast implants of women who had implants because of cancer vs. those who had implants solely for cosmetic reasons - back in the late '80s!) which I never took credit for. But I know they are out there, as do my doctors, and I have to admit that when I was in my youth I loved to stun (doctor) friends at medical conferences by asking questions - and that they had no idea where these ideas came from.  You might say that I'm good at thinking outside the box - thanks in huge part to my left brain damage  - the side that is "numbers" and science, and thus medicine as well.  My left brain is quite damaged (see this post regarding SPECT scans) and I've had to adapt to right-brain thinking, much to the betterment of understanding what's going on inside of me.  Or so I tell myself! 

It might also be the time to say that I've done my fair share of advocacy regarding fibromyaglia and CFS/ME. I did it all before there was any sort of advocacy to be done.  (Did I forget to mention that my rheumy was on the committee that famously established the criteria for fibromyalgia in 1990, the youngest on that committee?  Boy!  Did he ever have a hard time getting credence in the medical community with that "newfangled" idea!)

I take my "outing" very seriously and do so with great hesitation.  I don't want anything I write to be taken with any more seriousness than it was before.  One's doctor is always the way to find your answers.  I only write my own experiences and what I know.  I am a patient, albeit perhaps a long-term patient, who has had some pretty incredible experiences.  I've tried to make the best of my illness.  I've always said, decades before this blog could ever have been imagined, that if I had to be sick, I wanted those coming behind me to have an easier time of it, that their doctors could take a lesson from my life.  Remarkably, that has happened in the name of my doctors who believed I was sick at a time when fibromyalgia was considered something that rheumatologists and neurologists had made up in order to make more money and business for themselves.  True! 

And so, I hope that when you read my posts you're able to see where this bit of information of how I came to have such "vast knowledge" regarding fibro and CFIDS originated.  And for the sake of full disclosure, the presentation of the correlation of fibromyalgia and Irritable Bowel Syndrome can be found at:

• COEXISTENCE OF IRRITABLE BOWEL SYNDROME AND FIBROMYALGIA. Roma((((Blanked out name can be found if you look hard enough!), The West Virginia Medical Journal 84: 16-18 (February, 1988).
• COEXISTENCE OF FIBROMYALGIA AND IRRITABLE BOWEL SYNDROME. mano,*(Blanked out name), Romano, I. Abstract. Presented at the American Rheumatism Association* meeting Savannah, Georgia, December, 1985.

1985!  Can you believe it?  I can't!  We were still debating what the name of this disorder would be, "fibrositis" or "fibromyalgia."  Those were the days, as one song says.

And with that I leave you - but not permanently, I hope!  As always, I  hope that everyone is feeling their best, only better - fibro-logic at its best!  Ciao and paka.

(*Note: The American Rheumatism Association has since changed its name to the American College of Rheumatology.)

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What Do You Do With YOUR Time?

My Two Sons: chuckle!

Recently someone on twitter asked me what it was that I did to occupy my time while on bed rest.  I was surprised that I didn't have a good answer.  I was especially surprised because it wasn't that many years ago that my youngest had essentially asked me the same question: "how do you stand being in bed all the time. Don't you go nuts?" with so much concern on his face that I was afraid I'd start crying in front of him.

But (bravely?) I said, "I feel so lucky that I'm able to be in bed!  So many people who are sick aren't able to stay in bed - because of jobs - when they're told to do so by their doctors."  My son shook his head thoughtfully, not at all convinced, feeling very sorry for me.

But when I was recently asked what is basically the same question - or it is to me at least - I found that I had only two activities to relate to the young lady who asked: it was watching TV and writing posts for my blog.  I do think that when my son asked me this question I was in much better shape than I'm in now: I was still able to cook and garden occasionally and to read like a demon.

But now I'm not able to do these things and that has left me wondering, what do I do with my time?  I hate to admit that I spend most of my day wondering when such and such a symptom or pain will go away, when I can take my pain meds again without feeling like a drug seeker.  Am I a bit low?  Oh my, yes.

But, like an jack-in-the-box, I can't stay in one place very long.  No, I'm back to thinking, what can I do?  I had thought I'd take up putting a jig-saw puzzle together.  It sounds so lame but I remember our family putting together one of a map of Australia when the kids were in middle school.  It was so much fun and I swore to myself we'd do another.  We never did, alas.  Then I think, why the Queen and the rest of the Royals love to put together those puzzles up in Balmoral.  If it's good enough for them it should be good enough for me!  Yeah!  (Fist pump!)

There's always TV but that hasn't been very successful lately thanks to the summer season not having started yet and the regular season long gone.  But I've found some shows on On Demand that have been surprisingly interesting:

Anything to do with Chef Gordon Ramsey.  OK. I admit I wish he was a little more creative with his swear words. The "F bomb" gets ridiculously old very quickly and shows a marked deficiency in his command of the Queen's English.  But I do think he has a heart of gold, especially when family is concerned.  I even loved his "Behind Bars" miniseries where he goes into a prison to teach a select few inmates to cook/bake in hopes of using funds raised by selling goods to the general public to offset the cost of the prison system.  Good premise but ... well, you watch and see.  I watched Hell's Kitchen and my (other) son talked me into watching Master Chef. We shall exchange notes via Facebook once I get a few more episodes under my belt.

Speaking of getting into discussing shows via Facebook, that same son loved America's Got Talent and I've never liked it much.  Farmer that he is, he'd watch an hour of it with me - having begged and pleaded with me to watch with him and never ashamed to guilt me into watching if need be - and then he'd suddenly leave at 9:00, because it was so far past his bedtime - hence the nickname, "farmer."  Then I'd be left watching a show I can't stand!

But all that has changed this year.  Because that son is halfway around the world (yes, literally!) and he's not able to watch it, I found myself watching it because I wanted to be closer to him.  Get out the handkerchiefs, I know! (Wait: if he's halfway around the world, how is he able to watch anything Ramsey?  Oh forget about it... I'm sure the explanation is extremely convoluted!  These things always are!)   But how happy am I that I tuned in to see AMG this year?  I am amazed that I love Howard Stern - another potty mouth who is abstaining a lot!  He with Heidi Klum make a good team.  They have a connection.  Mel B I fell in love with from her successful stint on Dancing With the Stars a few years ago.  (She did a magnificent Paso Doble with Max!)  And Howie Mandel is just a sweetie who seems to be an innocent at times.  He makes me realize what a jaded so-and-so I am!

And I'm in love with this season's So You Think You Can Dance - I'd given up on it last year.  The try-outs, which I rarely watch, were great this year.  They got rid of the really stupid acts and made for a more cozy feel. They not only gave us the kind of backstories that I usually associated with the Olympics (like someone got a face transplant sort of thing!) to having parents come up out of the audience and dance.  It really gave me a bunch of laughs - which I was very grateful for since I was in the process of detoxing, my awful adventure with Cymbalta.  (I know: I said I would NOT mention the "C" word again, but it's sooo hard!)

But my best find: The Goodwin Games on Fox.  I'm in love with this little gem of a sit-com.  It's intelligent, it has heart.  It's based on a father who dies (Beau Bridges) and leaves a bunch of tapes to be played back to his adult children.  He's not pleased with how his kids' lives have turned out and if they want to win the many millions of dollars left in his will ... well, it's well done, believe me.  I started watching it with great reluctance and it grew on me after the second show.  Give it a try!

And there you have it: a bit of TV to catch if you're simply dying of boredom, dahhhhhlings!  Fear not: the new summer season starts making a slow appearance this week (Royal Pains has already had its first show) and slowly we'll have a few more good programs to watch....

But I'd love to hear from those of you who have "hobbies" you are able to pursue, despite the CFIDS/ME/CFS and/or fibromyalgia.  I'd love to hear ideas from normal people as well - you are the ones who can still actually think!  I mean, I really need some more activities I can amuse myself with!  I'm so afraid I'll take up coloring next!  Gag!

In the meanwhile, as always, I hope everyone is doing their best - only better!  Ciao and paka.


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Friday Tidbits: Will a Rosary Be Needed?

This is, I hope, the last of my posts covering my adventure into Cymbalta-land.  What a journey it's been.  I've purposely not written much about what I've gone through because I've not wanted to go on and on about how miserable I've been and bore people to death in the process.  But now a part of me regrets that I didn't write about it more often since it really was one of the worst medicines foisted on me, ever.  (Does "foists" make sense?  I hope so!)  I regret it now because in many ways I find that this blog is a pretty good reminder of what I've done and in reading back older posts, I'm able to assess where I've been, how I'm doing now compared to before. 

With trepidation I want to say that I think the worst of the Cymbalta experience is over.  I sincerely hope so at least.  The sweating is greatly diminished though it's still there after any sort of exertion, including walking from my bed to my closet - a silly example.  The sweats really reminded me of what I've always heard malaria is like, minus the freezing cold part - although I had the freezing part as well.  I've had three cases of pneumonia -  two which were almost fatal - and have gone through extremely annoying, though normal, female hot flashes and yet never experienced sweats as badly as what I went through with the withdrawal from Cymbalta.  

The sudden feelings of anxiety coming out of nowhere peaked a couple of days ago.  I was going absolutely crazy with them.  By Wednesday I'd had enough of that "out-of-nowhere" anxiety that I'd only felt occasionally - and not anywhere as badly before - wondering where my desperation would lead me.  The part of me that could think wondered when I'd last felt this anxious.  Was it when I studied for my Oral exam for my Master's degree - when professors could ask any question they wanted relating to British and American literature, much of their histories and so forth?  That was anxiety.  But nah...I hasn't been nearly as "nervous."  

How about when I worried about my daughter getting accepted to her number one pick of universities to go to and had a phone interview?  That was a great picture that she's YET to forgive me for.  I - who do not drink - made myself a Kahlua and Cream, lit up a cigarette and grabbed a rosary (I'm not even Catholic!) and started saying the rosary.  True story. Would I lie?  

No, I can't think of anything that caused the kind of anxiety and heart racing I've felt these last few weeks thanks to the Cymbalta.  Plus, this lasted weeks, with no end in sight.  Wait a moment.  I now remember a possible anxiety-ridden contender: when I walked down the aisle to get married, anxious because I don't like to be the center of attention.  Yep. That's a good one.  "Future" hubs had to hold me up for most of the ceremony as I almost passed out.  Now that's anxiety!

Yes, indeedy.  That was a definite contender.  Now can you imagine feeling like that for weeks?  It came on every day, several times a day, with no warning.  I don't ever want to go through that again, thank you very much.  It is, perhaps, one reason why hubs and I have been married for so long: we can't imagine ever going through that sort of stress again! 

I was dealing with stress so poorly that I wondered if I didn't need to have my cortizol levels checked - again. (Appropriately, I wrote about cortizol levels last week so you may want to check out that post.)  No, I most certainly wasn't dealing with any sort of stress in a good way at all.

Continuing on: my personality transplant has gone away for the most part. I'm still not back to whatever "me" is, but I'm closer. The part that has me worried, however, is that I still don't like whatever is left of the transplanted me and hope that I go back to the old me - and soon.  

Perhaps worst: I'm still not back to laughing.  I had a chuckle the other day and hubs was ridiculously delighted.  Poor guy: it doesn't take much to make him happy.  I'm a harder audience.  Plus, I have to live with me more than he does.  He gets to go to work.  (Lucky Duck!)

Pain is still the same - pre, during and after Cymbalta.  The acid reflex is getting majorly better thanks to the melatonin.  Today I only needed one Tums, a definite improvement.  

The depression that came on with the Cymbalta was the worst I've ever felt.  The high BP.  The swelling - so bad that I had to go to the ER to eliminate any "serious" problems.  The blood sugar dropping in an instant. The out-of-control eating.  The weight gain.

Oh good heavens. I don't even remember all the things that went majorly wrong with my body because really, it's a sanity device.  Your body simply can't register all the problems at once because it is just too much.  It's all a matter of the squeaky wheel getting the most attention.  

The awful bit is that I have so far to go, still.  And I am angry about that.  I am still majorly ticked off with the prescribing doctor because his theory was that I wouldn't be in so much pain ... because I wouldn't care about the pain enough for me to "complain."  After all, he took Cymbalta.  I should have known to run for the hills once I was given that sweet morsel of information - known that he wasn't all there!  What kind of crazy thinking is that: not to care about my pain enough to complain?  Just one thought: did he not learn in medical school that pain is a good indicator that you're not doing well?  Is it not Mother Nature's way of protecting us? I got to the point where I didn't care about anyone or anything at all.  Is that living?  Is that sane?

Heaven protect us from crazy - and arrogant - doctors who think that they know how to fix us.  It's completely nuts.  They don't believe we are ill.  They think that a few sessions (or not so few, but "only") with a mental health professional will talk us out of our illness.  We have, after all, imagined it completely, as they constantly remind us.

When I was in the hospital, one of the "new" doctors wanted to know, more than once, "what bozo put you on ---" fill in the blank.  He literally used the word "bozo."  I'd not heard that word since Soupy Sales used that word.  And how disrespectful is that kind of questioning?

Having been raised in the South where we were taught manners and having been to a Catholic school where we had manners forced upon us, I was too polite to say, why don't you get board-certified in internal medicine, do a two-year fellowship in rheumatology, treat patients for 30 plus years, be past president as well as board member, etc, of a medical pain academy and then get back to me?  Testify in front of congress - as did my neurologist - and then get back to me.  Look at my spinal fluid and then get back to me.  Become a decent human being, nix the personality disorder you have, and then get back to me.

That blank for "What bozo put you on --?" was at various times "steroids," "xanax," "ritalin," and a host of medicines I've long forgotten but he had at hand because of hospital computers.  

Why did I get these meds?  Because at the time these were the wisest theories and hopes - at a time when CFIDS/ME/CFS and fibromyalia had just been recognized and not yet understood - not that these are understood now.  And at every step, everything I'd ever been given was explored - at length - as to whether or not it was a useful and logical progression, whether the pros outweighed the cons.  I can't even begin to tell you how many medications were explored and discarded because they were just too high a risk.  But never, ever, was I bullied into taking medications like I was bullied into taking the Cymbalta.  

I'd like to know that I've gone through this nightmare for a reason.  Consequently, I've wrecked my brains trying to find the bright spot in all of this.  What have I taken away from this experience?

I know that I will not allow myself to be bullied again without a fight.  I've had enough of it.  And if they can't respect me for what I am - a person with real biomarkers for CFIDS and fibromyalgia - then they can kiss my grits.  At least respect me for my old age.  

Yep.  I'm ticked.  I'm beyond angry. I hope that part of my anger doesn't leave me because I need it in order to be protected.  And I need to ask myself this as well: perhaps I'm angry because I should have known better? I've been bullied into believing that I need to see guidance counselors, psychologists and psychiatrists practically since the day I was diagnosed with CFIDS/ME/CFS and fibromyalgia - since around 1986.  I don't know why I keep giving these bozos - that is a good word after all! - a chance to deal with me.  I can unequivocally say that they always end up doing more harm than good.  At least in the past it's been more "psychological" harm than "psychological" good.  Now they've managed to do much more - adding physical harm.  Shame on them - but shame on me for having allowed that bullying!  

Furthermore, I do hope that I can get back to laughing.  This is a gift I was given and I've always been thankful for it.  I pray I haven't lost it forever.

Whew.  That felt good!  Thanks for allowing me to vent - I really needed that.  Hopefully a rosary - plus a cigarette with a Kahlua and Cream - won't be necessary to get me back to where I was.  Goodbye, Cymbalta-world.

And as always, I hope everyone is feeling their very best - only better.  Ciao and paka.



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Melatonin and Acid Reflux

I've tried to make the best of my detoxing nightmare with the Cymbalta and it's been hard, but I think I may have found one good thing to come out of this whole mess!  Before I get there, however, I need to say that I'm at around Day #27 of the detoxing and I think I might - just might - get out of this nightmare eventually. And I say "eventually" with great trepidation for fear of jinxing myself.

But the bit of an upside?  The other day I turned to the Internet for some sort of question but as per my usual MO, I ended up looking for everything but what I'd started on.  OK, that's nothing new.  But I like to think that I'm not alone with this sort of meandering so-called brain which can't help exploring anything and everything that pops into it. 

At any rate, last week I'd written that my acid reflex has gotten so bad that I am well into a second bottle of Tums.  I rarely get acid reflex but when it does happen, all bets are off because even the "little purple pill" advertised during the nightly news doesn't help, much less Tums.  Luckily, I normally have a "cure" for "heart burn" and it's simply stop pigging out and/or get enough sleep!

But recently the GERD has been completely out of control no matter what: sleep or no sleep, eating right or not eating right.  Acid reflux had found its way into me and wasn't about to loosen its grip on me anytime soon.  Yes, it's another of the many legacies of the Cymbalta fiasco.  I'm so glad that this stuff (the Cymbalta) will soon be out of my system and I am saying right now that I will "brever" take this sort of medicine again. ("Never say never," so I'm making up a new word, "brever.")  

May I add that over the years I've taken an embarrassing number of antidepressants - as well as all other sorts of medications - because of my CFIDS/ME/CFS and fibromyalgia, and its many comorbidities?  I've needed all sorts of medications to address the problems at hand, from steroids to Klonopin to Effexor, from Pamelor to Xanax to about 80% of the medicines out there that have at any time been thought to be great for these problems.  Then those medications get replaced by other medicines as new ones come out, as theories and thinking changes....

But the kicker has been that I've never had any sort of withdrawal problems in all the years that I've taken medicine to combat any old thing.  Not one medication whatsoever has caused significant problems as far as my (long-suffering) GP, (ever-suffering) rheumy and (most-suffering) me can remember.  This is wicked.  In the beginning I laughed and said it was no worse than being pregnant - trying to make light of what was happening - and only a semi-joke because my pregnancies were indeed nightmarish.  However, I really jinxed myself by "laughing" off the detoxing.  

But a little of relief has been found!  As I already said, the other day I got onto my trusty iPad and started looking up other symptoms I'm living with and I found a treasure.  Yippee!  And it's one that is a great bit of info to have, whether you're ill or healthy.  Surprise!

Dr. Andrew Weil reported that a group of Polish researchers found that melatonin may help with acid reflex. Wow!  If true, this would be truly amazing news to me. 

I pulled (ever-suffering) hubs into our bedroom and started interrogating him as to when I complained about acid reflex.  What, over the last 37 years, does he remember?  Although I trust his memory more than I do mine, I do remember that the first time that I ever had acid reflex was in grad school when I would pull all-nighters, having too many papers to grade, lesson plans to work up, my own coursework attended to, and so forth.

I also remember saying to my fellow students, "don't you just hate that awful burning that goes on if you get only an hour or two of sleep?"  They had no idea what I was talking about - perhaps because they weren't idiotic enough to pull as many all-nighters as I did?  (But then they were much brighter than I could ever be. Me: I just have more persistence than most.  I'm not as smart as most; I'm just a hard worker.)

Anyhoo, hubs and I do remember me having acid reflex when my middle child had colic for 11 and a half months.  Yet somehow, I've not had many episodes of acid reflex despite my significant lack of sleep.  For the most part, I'm really careful about what I eat.  I thought this was why my GERD wasn't torturing me.

So, hubs trudged out to our local pharmacy and picked up melatonin.  I've taken it now for the last two nights and blissfully, I've not had much, if any, acid reflex.

It finally occurred to me today that until about a couple of years ago, I'd been taking melatonin every night for at least 25 years - well, more or less.  However, somehow the melatonin ball got dropped a couple of years ago.  Actually, for any number of reasons many balls got dropped and I've been slow on the uptake in getting those parts of my health routine back on course.  I suspect the melatonin ball wasn't picked up earlier because I've seen chatter on the Internet in using caution when thinking about taking melatonin for CFIDS and fibromyalgia.  I suppose I've sort of been - kinda, maybe - waiting in the sidelines for some sort of definitive answer one way of the other - or an excuse to go one way or the other with it.  (What, me not being able to make a decision?  Nah!)

Well, whatever the debate and results may be, the melatonin seems to have helped me in two aspects of this miserable time I'm having vis a vis the Cymbalta withdrawal.  I've had two days of little if any acid reflex (no Tums!) and two nights of sleep - and miracle of miracles, the sleep was refreshing!

How wonderful has this been?  Considering that one of the unfortunate problems that those of us with CFS and fibro have is that our sleep is non-restorative that's pretty darn good.  Lately my sleep has gotten worse, hard as that might be to imagine.  Actually, my sleep has felt positively destructive.  I feel as if I'm in much worse shape after sleep, as if I'm paying some sort of price for working so hard at getting to sleep and staying asleep.  It's gotten so bad that I've been thinking, "how long can I go with such an essential part of life being destructive?"   It's like being allergic to water - or oxygen!  

So, thanks Dr. Weil, for bringing that rather long-ago study (2007) to our attention.  And, of course, melatonin has some pretty great properties: it's supposedly good for our immune systems (which may be controversial when it comes to CFIDS but I'll chance it), great for antiaging and as an antioxidant. I'm sure my brain will get used to the melatonin after a bit and it's effectiveness will be almost zero as far as sleep is concerned, but if I can get a few nights of restorative sleep, I'll consider myself lucky.

In the meantime, I hope this is the end of the GERD.  Now, if I could just get over the other gazillion problems that I'm experiencing from my Cymbalta withdrawal.  I wouldn't wish this on my worst enemy - if indeed I had one.

Is this melatonin thing not cool?  I'm so afraid that I might be jinxing this "find."  Perhaps a "knock on wood" and a tphoo! tphoo! tphoo! is needed - just in case!

In the meanwhile, I hope everyone is doing their very best, only better.  Ciao and paka!



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Friday Tidbits: Cortisol 101

Have you been tested for "everything" and "everything" comes back normal - yet you're fatigued and just want to cry or scream because you still have no plan of attack for getting better?  Are you (or your doctor) on the hunt for another reason why you are constantly running out of gas?  Do you yearn for a non-psychiatric diagnosis, some sort of tangible answer to at least some of the problems you're having, in addition to or because of your CFIDS/ME/CFS and/or fibromyalgia?  Are you tired of being looked at askance, or even accused of being depressed when you know you're not, or know that if you are depressed it's a secondary depression caused by illness, not CAUSING your CFIDS or fibro?  (I address the differences in depression here - and it's one of my favorite posts.)

How many patients with "invisible" illnesses have been told that they are in denial when they express their opposition to the notion that they're depressed and want their doctors to search for medical reasons why they're in pain, fatigued, have low stamina and overall feel like poop?

I've already written - ad nauseum for some I'm sure - about certain hormone deficiencies in patients with fibromyalgia, such as low levels of DHEA, growth hormone and thyroid hormone.  One hormone I've not gone into, however, is cortisol, the body's natural cortisone.  It was alluded to when I wrote about Dr. Janet Travell, one of my "medicine heroes."  She discovered that then-senator John Kennedy was suffering a severe deficiency of cortisol known as Addison's Disease and she treated him with cortisone injections. Without them JFK would never have had the energy or the stamina for the presidency.  This underscored how vital cortisol was for the body to function, especially in stressful situations.  (Remember the Cuban Missile Crisis from your history books - ancient broad that I am I barely recall it, remembering only the drills for nuclear holocaust!  And good heavens: can you imagine how many spoons JFK needed for that "tiny" little episode???)

Anyway... skip to more than half a century later, into a new millennium and doctors today understand its significance much better.  That, unfortunately, doesn't mean patients are being tested for cortisol deficiency when indicated.  Mind you, we are not talking about the cortisone shot that you may get if you've had the miserable misfortune of finding yourself reading a book in a field of poison ivy - as I did at age 9.  Whoops. And they only gave us calamine lotion! Whoops again... tangent!

What we are discussing in this post is a deficiency of cortisol and using cortisone medications to replace what the body should be making in the first place.  Again, my point being?

Many years ago, Dr. Leslie Crawford of the University of Michigan discovered that some of her fibromyalgia patients had low levels of serum cortisol.  And why is cortisol important?

I'm so glad you asked!  Cortisol is important for everyone. It keeps healthy people healthy.  Simple! Specifically, it's important because it enables us to tolerate stressful situations without literally collapsing from a strain on the body.  This hormone is made by the adrenal glands. Yes, DHEA is made in the adrenal glands, but in a different section.  

Dr. Crawford suspected that a subgroup of her fibromyalgia patients might be cortisol-deficient and tested her patients by drawing the cortisol blood test in the morning.  (More on adrenal failure and the possible CFS/ME connection in a future post.)  Lo and behold, Dr. Crawford discovered that many of her fibromyalgia patients had levels that were so low that they would become weak, very fatigued and have almost no stamina.  

Dr. Crawford postulated that many of her fibromyalgia patients have a disturbance or a dysfunction of the hypothalamic-pituitary-adrenal axis.  The hypothalamus, which is in the deep part of the brain, sends a signal to the pituitary gland (the same gland where growth hormone comes from) which, in turn, sends a message to the adrenal glands to make sufficient quantities of cortisol.  An interruption in any of these steps results in the body not making enough cortisol to function properly.  If this deficiency is not identified, often the patient will not be able to do the simplest tasks without stressing out his/her body. 

The problem is that if you can't make enough cortisol you can't even respond to the stress since cortisol is one of the body's stress hormones.  The good news is that if a cortisol deficiency is identified, treatment is relatively simple and inexpensive. But if this problem is not identified the quality of life, as you can imagine, suffers greatly. 

What to do? 

• Make sure that your doctor checks hormone levels if you are fatigued and have low stamina and the explanations you're given don't seem to jive with what you're feeling.  ("Jive" - how about that word!)
• If growth hormone, DHEA, thyroid levels are OK, an AM cortisol level should be checked.
• Often low AM cortisol levels can explain symptoms and then proper hormone replacement therapy can begin.  

So, here are the take-aways for today: 

• On the whole, rarely is cortisol considered in fibromyalgia.  And it should be! 
• In order for your body to deal with stress, any kind of stress, it needs cortisol at its proper level.
• Taking cortisone for a cortisol deficiency is not the same thing as taking cortisone for the inflammation common in problems such as hives, poison ivy reactions and the like.

If "everything" has been run, discuss with your endocrinologist (or rheumy who should refer you to an endocrinologist) how likely it is that you're hormone deficient in this area.  I find it truly amazing how many answers to the fibromyalgia and myofascial pain questions come back to hormones these days.  Truly amazed. And it gives me hope!!!  Hear that?  It gives me hope!

And there you have it.  Yet another hormone that might, just might, play a role in how you feel.

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



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I'm Not "Me" Any Longer?

Where in the world did I get that spunk? I've long lost count of how many moves this promise to myself survived: at the very least 15! 

Just a quick note on how the "detox" is coming along in regards to the Cymbalta and trazadone.  

In one word, it's been pure h*ll.  And I thought the worst was over last week.  It's as if I have a sign going across my forehead that says, "In your dreams, girl, if you think you're almost finished with this mess." 

I've quit smoking cold turkey, twice, successfully.  "They" say that smoking is harder to give up than any opioid - you hear it all the time.  Well, I can say that it's nothing compared to what I'm going through right now with the antidepressants withdrawal.  Three complicated labors weren't this bad. There is so much going on in my body that I (it) can hardly tell where to focus my attention. 

But of course it's the squeaky wheel that gets the grease.  When that's addressed, however, another two or three problems come flying to the forefront and I'm battling those with little relief.  There is no rest from these symptoms.  True, some are just CFIDS or fibro problems intensified but I really, really did not need this withdrawal stuff on top of everything else.  We seem to have forgotten that I was on a mission to pin down what it was that was a new-majorly-wrong-with-me problem(s), what I so nonchalantly penned, "The Hunt for Red October." 

The sweats are coming-out-of-the-pool sweats.  

We passed "annoying" days and days ago.  

An example of the latest crud: the dizziness and nausea are killing me.  As a certified CFIDSer/ME/CFSer and fibromyalger (I'm making up my own names and grammar here!) I know that part of the lousy deal is vertigo. In fact, I've taken medication for that (religiously) for approximately 15 years.  The medication works therefore I'm fine with that.  Now we have a catch: the medicine I've taken so successfully hasn't been helpful lately, not one iota. Neither are the two other meds that are fallbacks for those (relatively) rare times when I do have nausea, as well as vertigo.

Imagine if you will: I get up out of bed to retrieve something.  I'm into the bathroom now and cannot remember what I wanted.  I spin around a few times and nothing triggers my memory as to what I got up for. I lie down and within five minutes I'm a jack-in-the-box as I pop up and go toward my closet.  Halfway there, I have no idea what I'm looking for.  I go back to bed.  Repeat.  Repeat the whole process.  Repeat again, again and again and again.  Hubs gets his jollies watching me perform this dance - and has the nerve to say so! (Isn't that akin to answering wife, "yes!" when asked that "infamous" question, "does my a** look big in these jeans?")

I try to be conscious of the spinning routine but it's almost impossible.  

There are a ton of other side-effects I'm having a la-di-da with.  I've gone through a big bottle of Tums.  This acid reflex reminds me of my third pregnancy.  I'm halfway though the second bottle of Tums, optimist that I am. They don't work. 

I'm eating even though I'm not hungry.  I can't stop eating and have gained so much weight that I won't get on my bathroom scales. Last night I had a dream that there were "words exchanged" with an - only in my dream - new nurse in my GP's office about my getting on the scales.  I told her - in my dream - that we had an agreement in the office that I tell them my weight and don't need to hop on the office scales and suffer public humiliation.  "Ask anyone here  - I don't get on the scales!" I was trying to make her see reason.  Thank goodness I woke up.  In a complete and total sweat.  It was too much to start changing bed linen. I was too tired to put on a clean dry nightgown - yet again.  And so it goes every night and day.

But the worst thing about this whole antidepressants business, by far, is the change in my personality. The ME-ness. My core.

I no longer laugh.  I'll watch TV and think, "that was funny" but don't even give it a half-hearted smile.  I am flat.  I have few positive emotions.  I could care less about anyone else.  Be there, don't be there.  It matters naught.  Just don't bug me.  The things that I didn't like about you in a distant sort of way are monster annoyances now. 

I'm very angry. I was angry before. At least I was angry in the way that you say, "That makes me so mad" when you see someone cutting in some line somewhere.  But this is different. This is rage. I've never experienced anything like this before.  

And that scares the living daylights out of me.  You could say that I've never suffered fools gladly. Well, now I've gone beyond that.

Will I be like this forever?  How much longer will it take to flush the Cymbalta and trazadone out of my body? Will my personality changes be permanent?  I've been scouring the Internet for answers to these questions.

If I take my pain-killers, the "detoxing" is bearable.  But I don't want to take those pain-killers for this.  This is not pain.  I don't know what this is.  I just know that I'm ticked off at the doctors that thought this was such a great thing and my tested tried-and-true meds were wrong, all capital letters, wrong.  Such arrogance!  Such gall to tell me how I feel.  

I feel as if I've had a chemical lobotomy.  

And in the back of my mind I have to think:  

How much does a Cymbalta pill cost?  How much does a demerol pill cost?   Need I say more?  But in case I do, here you go: who's paying to advertise the new BRAND pill?  Look at a medical journal - any medical journal. Most of those glossy full-page ads - well, someone's paying big bucks for that.  Look at the TV commercials during the news hour.  That's huge overhead.  And so subliminal messages are being sent to physicians.  The idea is "out with the old, in with the new."  Forget that we have no idea how the new meds work, in the long term especially.

Demerol.  It costs less than a dollar per pill.  Much less.  The effects, good and bad, are well-known and documented.  But the pharmaceutical companies aren't making money on the old meds.  Now a  medication such as demerol is verbotin in far too many places.  Why?  Draw your own conclusions.

And to add to all the confusion, how much of this new "personality" is the hypothyroidism?  After all, my hair is still falling out and my nails are "brittle" beyond belief - just two examples which can be chalked up to the whole mess.  Who knew that your nails can tear down towards the half moon of the nail bed? 

And off I am to take another 2 or 6 Tums.  

What are some of the weird/annoying/funny side effects you've had with medications?  We'd all like to hear!

In the meanwhile, I hope everyone's doing their best - only better.  Ciao and paka.



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Friday Tidbits: My Three Daily Shots

Needles: I thoroughly hate them - I have a true phobia. I think that the Guy Upstairs has a very funny sense of humor because I need three shots daily. Or, perhaps, I lived a very strange sort of existence in a former life and my punishment is having to get so many shots in this lifetime.

People seem to be curious about medications our fellow sick ones take and I'm private about some things, yet share others.  A lot also has to do with how much I think others might want to hear, preferring not to bore people to death.  But it's Friday, I'm feeling cruddy with all that's going on, still with the nausea, recovering somewhat with the swelling and bloating, pain, you-know-the-drill, much of it still where I was last week.  I've had a few other problems that are getting to me but I'm still sitting on the fence as to whether anyone would want to hear about it or not.  Other things are driving me nuts: I'm trying to hold out and see if there is any rhyme or reason - hint: rashes and hives amongst other annoyances.

Hubs is out of town for a long weekend, I'm forced to give myself my own shots and so I finally decided I'd "go there" - that is, tell you about the three shots I dread so much that everyone but in the family but myself knows how to administer.  I should say that I'm so bad about needles that back in the day when the only way to get over a migraine - besides waiting it out - was a shot, my 13-years old daughter came to her dad and said, "it's about time you teach me how to give mom her migraine shot. You're not always around to do it, you know."  Or words to that effect.  That summer, bossy daughter and I were going to fly to Oxford and she wanted to make sure I was covered.  Have I mentioned lately that the girl's got guts?

Luckily, needles are not the only way to go in order to treat migraines any longer.  Those little pills are such a convenience!  I'm so bad that I prefer going through life with migraines than have a shot - or the occasional DHE-45 IV given over an extended period of time in the ER with hit-and-miss results.  See how ancient I am? It's as if I lived in the age before antibiotics were invented!  Not quite, but almost.

But the Guy Upstairs still has His joke with me on a daily basis with:

• Vitamin B-12  Yes, I could go with the pill form, even the sublingual form, but that didn't work for me.  Despite getting B-12 the way the rest of us get it, back in 1997 my test results showed that suddenly I was extremely deficient in B-12.  In fact, I was low despite the IV nutritionals I was getting weekly at the holistic clinic I went to over two hours away by car, each week for a year.  The funny thing - not haha but strange - is that it takes two years for your body to make up the deficiency. Therefore, though the tests may come back with your level of B-12 - registering in normal amounts - and though the blood tests may reassure you, guess what!  Your cellular level of B-12 may still be low.  I now get a daily shot of B-12 and do get tested periodically to make sure that my levels are in the normal range, not too high, not too low.

• Pitocin   I'm sure many out there with Chronic Fatigue and Immune Dysfunction Syndrome (CFS/ME), fibromyalgia and many other autoimmune illnesses have problems with vision changing day-to-day and even hour-to-hour.  But it's not a vision problem, per se.  Instead, it's the brain not able to interpret what the eyes see.  This makes sense to me (my case, that is) because of two factors. On my worst days, my vision is kaput. I can't get anything to focus right.  On my better days, my vision is not annoying, although unlike Goldilocks, it's never just right. 

Which leads me into a smooth transition. The second reason I get a daily pitocin shot is because "some" believe that it may be a pituitary problem. It's a bit much to go into today, so I'll address this in a future posting, soon.  It's a truly amazing thing that we've discovered, so it perhaps deserves its own post!  (Am I getting good at ya'll anticipating a post?  I'm tryin'!)

• HGH (Human Growth Hormone)  I think I've gone on and on about this, more than most ever want to hear.  These  HGH posts are found here (weight gain),  here (impact on fibromyalgia) and here (hormonal impact/levels).  But as I've mentioned once before, my rheumy is really worried that the HGH deficiencies he's seeing in his practice are almost epidemic.  (I'm adding the "almost," and underplaying his concern and alarm.)

 

And off we go into another weekend!  As always, I hope everyone's doing their very best, only better!  Wishing you a wonderful weekend.  Ciao and paka! 


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In the ER Again: the Mystery Continues

No...it just comes from CFIDS now! 

I was on such a wonderful roll last week with finally getting back in action and writing posts.  But after this weekend, I feel as if getting back to square one would be an improvement on things.  Always first with the bad news in order to get it out of the way: I ended up in the ER on Saturday for multiple problems. The good news: I didn't need to go there in an ambulance!  Glory be: I almost feel as if I were letting the neighbors down by not having provided them with some entertainment - but then I remember we all have cable.   

Incredibly, the hospital staff was polite, concerned and ran many tests.  Perhaps it helped that my normal BP at home on bed rest runs a high of up to 90/70 but in pain at 120/80 (as documented by the hospital computer, yay!) yet in the ER it was a whopping 151/90.  I was immediately given medication for nausea. When I got to the point that my pain was so severe that I couldn't hold back the tears and asked for pain medication, they  immediately gave me IV pain meds which were documented as working.  Unfortunately, for the first time ever, the Demerol didn't touch the pain. A couple of hours later, another dose was given and I felt relief for a moment then nothing. This scared me. I don't like to think that I'm getting worse, overall, in my CFS/ME saga. 

After much testing we were able to establish that I wasn't dying - or not anytime soon. We were lucky on the one hand to find "nothing."  However, we were still stuck with most of the same symptoms, some getting worse, some remaining the same, and only one better but that's because I'm on complete and total bed rest. 

Ah, but I'm missing the "why" I went to the ER in the first place!  How foolish of me. OK, now get this. I do hope those of you not ill with Chronic Fatigue Syndrome and/or fibromyalgia are sitting down and those of you who are ill, are lying down.  We don't want anyone passing out because of my earth-shattering news.  (Yes, I do hope that you know this is meant to be humorous and not a case of being totally self-absorbed!)  So, drums and trumpets, please!

I got so bloated and swollen that I was afraid I was "getting" anasarca again. Those of you not familiar with the term, don't feel badly. I think you really only know the term if  you, or a close loved one, has had it. Even most of the staff at the hospital weren't familiar with the term and I had to keep repeating the word as I was asked, "Ana-what?"  

Basically, anasarca is generalized massive edema, a  fluid build-up in the tissues. It differs from regular edema in that the person gets extremely swollen all over.  It's also most common in patients with heart failure, renal failure and those who are extremely ill. 

Yeah, not fun and yeah, a bit scary - especially when I was told that I had to get two blood transfusions a couple of years ago.  There was fluid around all my vital organs: the heart, the lungs and so forth - pretty heady stuff.  I'd blown up like the Pillsbury Doughboy in less than three days, putting on 50 lbs in that amount of time and wouldn't stop accumulating fluid, on death's door, literally, as all my organs started to shut down. However, after the transfusions, it was quickly under control and I had water leaking out of every part of me that can leak, for months - including my ears.

He was much cuter than me!

Well, I've been swollen and bloated.  I actually took pictures of my feet but they are just too gross to put up. (See, I do have some self-restraint!)  In fact, I couldn't find anything in the closet that would fit, finally hauling out a long dress which was all stretch, so tight it made me look like a cheap hooker.  When I tried to find shoes hubs suggested, "just put your Uggs on!" and I croaked out "are you nuts?"  After trying on about ten pairs of shoes (how I wish I were exaggerating) I went with the Uggs in the back of the closet.  Hubs had to haul them out himself since my swollen body couldn't do much bending and we had trouble getting those on! In the ER I was so embarrassed that I told the doctor that I wasn't actually crazy - that Uggs were created in Australia so that those on the sandy beaches of Sydney would be more comfortable playing volleyball.  She looked at me like I was nuts - and who could blame her?  I don't think her opinion of me changed much when I asked if her last name was Hungarian.  Vhaaaaattt, folks?  It's a legitimate question.  I like to know these things. I'm always curious.

Back to the why I was there. I was so happy that someone finally knew what anasarca was.  That made the doc OK in my book.  My other symptoms were heavy, profuse sweating - like turning-off-the-shower-before-the-towel wet.  A migraine yet again.  And great numbness in my left side affecting ear down through arms and hands, the left leg and foot, getting worse every day.  An EKG was run, blood taken, urine analysis, x-ray ... all of it. Nothing was found to explain the symptoms, though much was ruled out.

So, this was the bad news in the sense that I was stuck without a diagnosis, but it was nonetheless reassuring in the sense that an ER is there to rule out the stuff that will make you drop dead immediately.  (Not too blunt, am I?) The stuff that is chronic really should be explored by a physician who knows you and if he can't find out what's wrong, then he sends you on to a specialist. That's how the system works and as long as everyone is playing by the rules, I'm fine.  I was greatly relieved that I didn't have pneumonia. (Whoops: I didn't mention the congestion, etc., did I?  Well, too much going on!)  I was relieved I wasn't in the midst of a heart attack.  I may have seemed like a hypochondriac but that episode of having pneumonia for two months last year and discovering it only because of a routine chest x-ray before surgery kind of made me realize that I needed to get to the bottom of things sooner rather than later. 

So, where do we stand now?  My rheumy thinks the sweating may be something "subtle."  I wanted to know: in what world is sweating so profusely-that-you're-pouring-down-water-and-can't-move-in-bed-because-you're-so frozen and feel as-if-your-guts-are-falling-out and finally resort to pain pills for something that isn't pain per se, but is just feeling like you-might-die-and-very-much-wish-you-could, be normal or "subtle."   Well, it may be that I'm in withdrawal from the Cybalta and/or the trazadone. 

Yes, it was my decision to get off the Cybalta without tapering. (See this post for more on my Cymbalta adventure.)  We all agreed that I hadn't been on it long enough to have things get too tough - though due to weird circumstances I had taken it longer than I wanted. My doctors observed that I don't appear to have an "addictive personality."  That is, I've never had any withdrawal from any other medications over the past 26 years - I'd started on medications only after I'd been officially diagnosed with CFIDS and fibromyalgia, therefore I write 25 and not 37 years. And so after discussing the mechanisms of how Cymbalta and trazadone tapering off works differently form the way nicotine and opioid withdrawal might work, if I felt OK with stopping suddenly, to go for it. I don't like to draw things out and went off cigarettes cold turkey without any problems after smoking for a few years.  (Do I sound defensive if I say do you have any idea how much reading and writing is done as an English literature student?  LOL!)  I took up smoking once my kids were older and then again stopped cold turkey almost three years ago and had no problems - other than more pain in general that still hasn't stopped.  But the smoking is another story.  I've never had opioid withdrawal at all, knock on wood.

At any rate, yesterday was truly hell and I hope that I'm over the worst of it.  I slept last night after a dreadfully long day full of severe nausea, lessening numbness, moderate migraine and  sweats out the wazoo - my bedding was more drenched than ever, something I thought to be impossible.

My rheumy said that we can all hope that it's withdrawal symptoms and not anything more "serious," so I'll hold out for a bit longer.  Hallelujah for the no sweats upon waking up this morning, just a bit this morning with sweats every once in a while which I can take.  The shaking is gone for the most part.  No migraine, only a bit of a headache that I can tolerate.  My hands are only slightly swollen. Yeehaw!

I also want to know in what world is opioids considered addictive and Cymbalta and other such medications not? But that's for another post.

Do you agree with my rheumy and think what I'm going through now might be withdrawal from the Cymbalta and trazadone?  

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



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