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!



(Did you enjoy this post?  Please subscribe to my blog and you'll never miss anything again!  It's easy: see the directions on the right-hand corner of this page.  And BTW: I'll never sell, share or rent your contact information.  I don't even know where to find it, so that's a firm promise!) 

One "Beautiful" Day in the Life of Irina Vladimirovna

Worried and exhausted....

Are you in the same boat as I am in when it comes to your face, body and sweating? Yes, that's right, another one of the "uglies," the sweats. 


You find that you need to be somewhere - be it a doctor's appointment, your son's wedding half-way around the world (ahem), or you simply need to meet with someone in your home for a thousand different reasons. But you have severe CFIDS/ME and/or fibromyalgia so how are you going to accomplish this goal?


You've taken your bath (hallelujah!). If you've thought things through, you feel you might be prepared. You've put out all the paraphernalia needed to get yourself clean and presentable, from washing your hair to washing your face with a couple of facial treatments thrown in - at the very least, hopefully a cleanser that's also exfoliated the skin because we do want to get rid of those nasty dead cells and encourage new cell turn-over.


If you've thought things through and planned, that means you've also thrown a serum of some sort onto your bed BEFORE climbing into the tub because if you'd been thinking clearly before the bath, you'd realize that after your bath, it will be a challenge (huh!) getting from the tub to the bed - you know you will collapse. Forget about towel-drying yourself completely or the wet hair: who cares? You're about dead!


What happens is that, hopefully, you have collapsed on the bed and not on the floor before reaching said bed. The little cheerleader in you is happy, rooting you on! The realist in you is nagging you. But the part of you scarred by society and too many ignorant psychiatrists and psychologists is worse than any military sergeant in basic-training yelling in your face, "you have to get up now! What are you...a wimp?" as you want to simply melt into the bed linens further, into the very mattress.


"No," you want to scream. "I are NOT a wimp!", although secretly you do doubt yourself deep inside because of the messages sent to you even by some CFIDS/ME specialists, who too often do not take into account how different each of our cases are.


You've now spent the vast majority of those precious "health credits" - the ones you'd worked so hard on saving in the previous days, weeks, even a month or two - on the initial part of the ritual. Something within you doesn't allow anyone outside your most intimate circle to see you when you are not at your best, and that most certainly includes those times when you and the cleansing part of your routine are NOT, let's say, "best friends." 


Your hand searches and hopes that you did indeed remember to throw a serum onto the bed, as well as a small towel because you're drenched in sweat. You feel as if you need to stand under the shower in order to wash off the sweat, but you couldn't take a shower to begin with because you have orthostatic intolerance and can't stand up. Forget about the chair in the shower bit: that's just another thing to fall over or off of and get yourself tangled up with, risking not just bruises, bumps but also body parts - as you well know from previous experiences, the hard way. Besides, rinsing off in a shower still will make you sweat all over again...it's the illness, stupid (you tell yourself!).


But you want the serum on your face! After all, your dead skin cells are (hopefully) gone and your face is ready to receive whichever treatment you've decided upon, in my case either a hydrating one or a "radiance" one to get me that special glow. (Eye-roll!)


Until just recently, I had an air conditioning unit stuck in my bedroom window and after I gathered enough strength to drag myself off the bed, I'd turn the a/c on. I'm sure if anyone were outside my window when the temperature outside was 30 degrees or worse, 20 degrees out there - that's below freezing for those of you on the Celsius system - they must have had validation that the family in our house was indeed insane. But naked as a j-bird, I'd stand(ish) in front of that sucker and let it cool my body off from the assault of taking a simple bath.


Ah yes....dried sweat. That's always a treat. But what else can you do?


Now, however, I'm trying to figure out a new system as the a/c unit has been removed and the addition that's my bedroom has been hooked up to the central system. I may try sticking my head in the little fridge in my closet and hope that works. There's the possibility of having a "volunteer slave" (huh! Think hubby or perhaps daughter) handing me cold compresses to cool my body temperature, which oddly enough is still at its usual 95.5.


Over the next two hours, I'll need to stop (lie down in bed), get up, put a bit of make-up on, rest, put a bit more make-up on, rest - you get the drill - over and over again.


Finally, my ordeal is over. The hair is about as good as it's going to get and the "beauty routine" is finished with eyeliner more or less in place - what can I say? I'm a product of my generation in addition to having invisible eyelashes and eyebrows. Hopefully, I've found something in my closet that actually fits and works. Between whatever my real weight may be and body fluid shifts, huge bloating -or miraculously, no bloating - my clothes sizes change drastically - even my shoe size - forcing me to have many different sizes of everything I wear, including shoes. Is it surprising that I live and die by the scale? It gives me a clue as to where to start on the clothes front.


But one final thing keeps going wrong: the sweats. No matter what, I can't keep my head from sweating. I can blow dry my hair throughout, but my scalp starts sweating and just won't stop. My hair frizzes. I start to look as if I've stuck my head under the shower.


I keep up with my make-up, but that, too, keeps sweating. Put on a layer of anything and the exertion makes my face WET! How is it possible to have dehydrated skin and sweating skin both at the same time, I constantly wonder? You envision a person in the middle of the desert, stranded, and you gulp water like crazy to make up for the water lost to perspiring, only to find yourself bloating even more, and the face sweating off any product you put on it.


So it's back to bed, yet again, flopping down and as you stare at the ceiling you try to think, what are you going to do? Your slave (hubby or daughter, sometimes both!) try to give suggestions you've completely forgotten because fibro-brain has set in long ago, big time. You ask how much time you have left until you need to leave the house or simply need to be ready and are told what the time is. You try to hold on to your last bit of patience because you don't care what the darn time is. You can see the clock or your watch perfectly well. If you were able to calculate the time now to the zero hour, the time you need to be ready, there would be no need to have to ask how much more time is left!


You're almost there. You know your hair is not going to get drier - that's a lost cause, but at least your scalp is clean. Your makeup's on, but unfortunately, it's just about to slide off your face.


Forget the shakes - you've long ago learned to live with them. Your "slave" helps you with the bottle of water that you chug down, with a supply of a half dozen more in a bag he/she carries for wherever you're going, and hands you the cane you have a love/hate relationship with. It helps keep you away from a wheelchair, but it IS a defeat and a sign for all to see that you do have a problem.


You walk out the front door, smiling at the world. Your daughter tells you you are better than any Oscar-winning actress because almost no one suspects how ill you are, wondering only why there's bit of a sheen on your face....


And very soon, we'll talk about how to get rid of said sheen, to make you look your best - so healthy, in fact, that it leads people to say those words we hate most - for oh so many reasons - "but you don't look sick!"


Until then, I hope all are feeling the best they can be, only better. Ciao and paka!


(Did you enjoy this post?  Please subscribe to my blog and you'll never miss another one again. It's easy: follow the directions on the upper right-hand corner of this page. And BTW: I'll never sell, share or rent your contact information. I don't even know where to find it, so fear not: it's a firm promise!)