About Me

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I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Friday, June 28, 2013

Friday Tidbits: The Necessity for a Real Doctor

Let's face it.  We with fibromyalgia and/or CFIDS/ME/CFS are complex and have very complicated medical problems. That being the case, we need real medical help and advice from competent and caring doctors. Sound obvious?

Well, not necessarily.  How many of you have made an appointment to see a doctor only to be met by a physician's assistant (PA) or nurse practitioner (NP) instead of the doctor?  

There appears to be a disturbing trend in medicine these days which may possibly be OK for patients with simple problems but absolutely unacceptable for patients who suffer from CFIDS/ME/CFS and fibromyalgia where even the experts differ as to optimal treatment.  I'm not going to go into how this trend began and seems to have overtaken medical care in this country.  But I did want to warn you that if it hasn't happened to you already, it may very well happen to you in the future.  

So, if you don't mind, here are some survival tips to help you navigate the world of modern American medicine:
  • When making an appointment to see a doctor for the first time, make sure you specify that you do not want to seen and treated by either a PA or an NP but the doctor him or herself.  You always want to ask how much time the actual doctor will spend with you, discussing all the relevant problems you believe are important and which are controlling your life. 
  • In most states PA's and NP's need to be supervised by real doctors.  All too often this does not happen in the strictest sense so make sure you have sufficient face time with the actual doctor to insure that your problems are considered seriously and appropriate treatment is initiated.  You need to see the doctor each and every time. We are just too complicated.  Our conditions are in a constant state of flux and the doctor needs to be aware of our condition at each visit.
  • Remember, you and your insurance company are being billed for a doctor visit.  If you do not spend sufficient time with the doctor you are being cheated and your insurance company is being defrauded.

This is very strong language but it is what it is.  Sometimes the truth really hurts. However, this is not the time to be squeamish or excessively polite.  There is simply too much at stake.  

The medications which are commonly used to treat our problems are difficult to prescribe in the first place. Furthermore, they can have numerous, as well as serious, side effects which PA's and NP's are simply not qualified to treat, nor do they have the depth of experience and training to recognize and appreciate many of these problems.  

This evening, I was watching TV with hubs when two commercials for "brain" meds touted their effectiveness during the evening news half hour.  I think you'd have to be living under a rock if you've not seen these commercials.  They mentioned such horrible side effects (at incredible speed) as suicidal ideation and suicidal actions as well as some disturbing side effects, such as weight gain, swelling of the extremities.  Well, the side effects are so numerous that it might be easier to add from Lyrica's website just some of the admitted side effects and I quote:
"These changes may include new or worsening depression, anxiety, restlessness, trouble sleeping, panic attacks, anger, irritability, agitation, aggression, dangerous impulses or violence, or extreme increases in activity or talking.  If you have suicidal thoughts or actions, do not stop LYRICA without first talking to your doctor."  -from Lyrica.com
We don't expect flight attendants to pilot a plane do we?  Do you honestly think PA's and NP's are prepared for incredibly complicated patients who are taking some mighty tricky medications?  I just "loved" it when the "real" person in the commercial was described as having gone to a "medical professional" (code for PA's and NP's) yet when it came to having these dangerous side effects we were told to go to a doctor!  Yes, a doctor we may not have seen in the first place?  

Don't be fooled, get real medical advice from a doctor and settle for no less. 

As always, I hope everyone's doing their very best, 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: 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 it's a firm promise!) 

Thursday, June 27, 2013

The Case of Opioids vs."Brain" Meds

When I finally got a diagnosis and pain meds which allowed me to be more socially active.  OMG: did we really wear our hair this crazy!  (Sorry about the bad scanning!)

I've always been defensive about my use of opioids, otherwise also known as narcotics.  Rarely has anyone outside of my immediate family known that I've taken a certain opioid since the late '80's, all because I know that opioids have a "bad name."  It's always, "Oooo!"  An outside-the-family person takes a pause, and later whispers "narcotics!" to someone else, with most often a judgmental voice, thrilled to know this juicy bit of gossip.  To make things worse, commercials on TV for certain medications proclaim that the medication they're touting is "a non-narcotic" medication, making it very clear that their new medication is far, far superior to a narcotic and that narcotics are completely and totally undesirable. Talk about propaganda (or brainwashing). 

As anyone who has read much of my blog in the last month or so knows, I'm still in withdrawal from my Cymbalta, which I'd taken for only three weeks.  Recently I wrote a post saying that I hoped I'd "brnever" bring up Cymbalta again. I was so optimistic that I was almost out of Cymbalta-world - I most certainly didn't expect yet another week of withdrawal.  

I've been extremely desperate to know why my withdrawal is taking so long.  "Existing" has became so unbearable that I interrogated my rheumy to the point where I thought it was a distinct possibility that he would cry "uncle" - or kill me, whichever opportunity came first.  I wanted to know why I had such a severe and prolonged withdrawal for the first time in a decades-long medical history with medications to treat my CFIDS/ME/CFS, fibromyalgia symptoms and the comorbidities.  I wanted to know why the doctors in the hospital (back in April/May) were so adamantly opposed to opioids and so pro the "brain" medications.  After all, Demerol and Ultram have never given me any problems - as an example.

Three of the most annoying symptoms I'm still having trouble dealing with are: 

  • I still break out in huge sweats - and I'm tired of my very sticky skin and changing bed linens
  •  my eating is completely out of control (this is a problem with the limbic system, if I remember my college psych courses correctly - joking!  Of course I ran this by an authority!)
  • the newest thing to have hit me EVER!: if my mind wanders and I happen to think about a slightest embarrassing thing in the past, I become anxious with my heart beating madly, again with the sweats, a decidedly unsettling feeling that makes me wonder what lengths I'd go to just to get rid of that feeling.  This is completely and totally new. Just thinking about something that is slightly upsetting - but which so often has a humorous angle to it -gives me this sort of anxiety. There's the time I wanted to wear a red checkered dress instead of a white one to a huge piano recital and I argued vehemently with the Mother Superior as well as my mom that red would do. I was so wrong. Or when I think about the time I was upset with my mom because she wouldn't allow 9-year old me to have an Indian - yes, a real live Indian who knew what he was doing - throw an hatchet at me while I stood against a wooden wall, on a real live Indian reservation.  Sheesh!   OK...I know, I'm getting off topic. (But I hope you liked the Indian hatchet story: hubs has said often enough, "time to get over it, honey!" to which I reply, "my name is 'Irene,' not 'honey.'"  Yeah, OK. Enough of the dynamics in this house as well!)

Here are the relevant facts I took away from the "interrogation."  It feels as if rheumy and my GP are working overtime to rescue me from those doctors who preferred "brain meds" over opioids.  They tried their hardest to brainwash me yet again that I'm "self-medicating" or addicted to my pain meds.  The "brain med" doctors have scarred me by saying I'm not physically ill but being dramatic. I don't need any wheelchair or cane to walk around.  The dizzy/passing out things can be conquered.  "We" can get your insomnia in order with this (mild) medicine.  Right...!  And I'm going to go to Antarctica to check out the penguins.

What I'd like these doctors to learn:

  • Narcotics have been around a very long time and their effects and side effects are well-known and understood.  The "brain meds" like Cymbalta, Savella, and Lyrica are incompletely understood and new dangerous side effects are being discovered all the time. Just look at any TV commercial for examples.
  • It's unknown to what extent the brain meds cause long-term problems.  For example, what effect do they have on a developing fetus?  True, a woman taking pharmaceutical opioid (not the crud on the street) when pregnant may deliver a child who is prone to withdrawal but that can be easily addressed in the hospital before the baby gets home. Fetal malformations from opioids are few and far between, if present at all.  With the "brain meds" we have no idea.
  • Opioids do not give you an artificial high if taken as directed.  I have never felt a high at all.  Luckily for me, I don't like the feeling of a high and that's made for a life of rarely having a drink - or wanting to take too many pain meds. 
  • Cymbalta and such actually change your personality.  I'm STILL not back to laughing.  I am chuckling a bit.  Child #1 came by last night and what would usually have had me laughing my fool head off, found me saying instead, "now that's funny" with very little affect.  I've had a personality transplant which has found me saying to hubs,"I'm sorry I'm such biatch, but I can't help it."  And today I was in this mode:" I'm sorry I keep blaming everything on the Cymbalta, as if I can't take responsibility for my own actions!"  In other words, I'm tired of apologizing at every step.  And do you realize how shocking it is to apologize to hubs?  He's ready to start filming these (for me) humiliating situations. 
  • Taken as prescribed, narcotics are extremely safe. On the other hand, taken as prescribed, anti-inflammatory pills, many of which are over the counter, kill (and I mean KILL!) thousands of Americans each year because of bleeding ulcers and other such complications, as Dr. C.M.Wilcox described in 2006 in the journal Clinical Gastroenterology and Hepatology.  Mind  you, this has happened and continues to happen despite the anti-inflammatory medication being taken properly.  And we are afraid of narcotics?  
  • Taken the wrong way, narcotics can be dangerous but that should not concern legitimate patients who follow their doctor's advice and take the narcotics in the proper manner.
  • Opioids do not mess with your neurotransmitters the way the non-opioid, newer medications do. That is not to say that no one should take medications like Cymbalta, Savella or Lyrica.  However, one should not be conned into thinking that these alternatives to opioids are safer or even more effective for chronic painful conditions. 
  • If  you read the package insert that the FDA requires pharmaceutical companies to include with every medication, you won't find the terms, "suicidal ideations," "suicidal actions," and the like for any opioid!  There are a lot of warnings about what can happen if you take opioids the wrong way, but taken as prescribed, opioids do not lead to suicides, as opposed to other medications.  
  • If for some reason or another, you need to stop taking opioids it is much easier to "detox" (if you even need detoxing!).  On the other hand, withdrawal from "brain meds" such as the Cymbalta, Savella and Lyrica is all too often extremely lengthy and pretty "unpleasant."  (Yawza" to the "unpleasant." Such an understatement.)  So please tell me, why are opioids undesirable while other meds preferred?  

Why, pray tell, are opioids not prescribed for patients with chronic pain?  Why are they prescribed only begrudgingly by some doctors whose intentions are good - I must say - but who have been influenced by the propaganda against the legitimate use of these effective medications?  

Here are some of the considerations which need to be taken into account. 

  • It is far more newsworthy to report a narcotic/opioid overdose concerning a celebrity than to report how thousands of patients suffering from chronic pain get relief from opioid medications.  
  • It is not the fault of the medication or the manufacturers of opioid medications that these meds are too often diverted in the form of  being sold on the street, kids raiding their parents' medicine cabinets for crazy "pharm" parties (and the like) or taken in excess by patients who, for many reasons, want to escape their reality. 
  • To put a personal spin on this: I've taken Demerol for almost 30 years.  My doctors (some have retired, some have moved) have always prescribed x amount of pills each month.  Over these years, I've taken a rather high amount of Demerol when I was almost deadly ill.  HOWEVER: other years when I've felt not as ill, I've barely taken any Demerol at all. With my forgetful brain, out of sight is out of mind.  When I don't need a pain med, I don't even think about pain meds.  But those years when I've been sicker than a polar bear in a desert, I've almost pill counted each day because it was the only way I could get through a day.  But that is NOT addiction.  That is being dependent on a medication which helps you or makes your life bearable, no different than insulin for a diabetic, digitalis for a heart patient or antibiotics for someone who has an infection.  
The brain is extremely complex. In fact it's so complex that many in medicine call it "the final frontier," including the Nobel laureate, Dr. Eric Kandel.   Doctors and researchers are discovering new things about the brain and neurotransmitters at a pretty fast rate. 

Is it any wonder then, that manipulation of the levels of these neurotransmitters in the brain can cause dire consequences for some patients who are very fragile?  Disruption of the balance of neurotransmitters like serotonin, dopamine, and norepinephrine can cause behavioral changes and physiological changes which may persist even when the "brain meds" are discontinued. 

I've never ever had a problem with stopping any medication, including Ultram, Demerol, Xanax and countless other medications.  This messing with the brain scares me.

But I do want to say this.  I am happy that we DO have Cymbalta, etc.  Some patients get real, absolutely necessary relief from brain meds.  My point is that we cannot and should not throw out the opioids because they happen to be medically politically incorrect.

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

(Did you enjoy this post?  Please subscribe to my blog and you'll never miss another 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 it's a firm promise!)

Tuesday, June 25, 2013

BB Cream and My Successful Outing

Each time I look at this box, I think how perfect it would be for a person with lupus.  "Believe" and butterflies.  A great find from TJ Maxx.

Today I had a dental appointment, postponed from a couple of weeks ago when I chipped (yet) another tooth. It was tough getting me out the house, always the hardest thing to do.  For the first time ever, I took my pain med two hours after I'd taken a previous dose. Without it, however, it would have been another canceled appointment... something that makes me feel like a rotten person. 

I was also able to get myself together because I'd finally reconciled it with myself that I wouldn't go with the whole makeup bit. Taking a bath, washing my hair and getting dressed was absolutely all I was up to doing even with hubs' usual help.

Once I got home, I thought I'd write a post about my little outing and grooming - and taking a third dose in the meanwhile: unheard of!  I thought you'd find something of interest here.  I so hope I was right and that I'm not about to bore anyone to tears.

First, I had no energy to start doing foundation, and trust me, I do need foundation - always have, always will. The freckles I used to mask have become, in my old age, ugly old age spots.  However, I just knew I couldn't, in good conscience, go about risking exposing men and little children to my un-madeup face without scarring them for life.  What to do? 

Finally I decided to go with a quick layer of my favorite BB cream, the fantastic Dr. Jart+ - marked as "the premium" (whatever that means).  It has a whopping SPF 45.  The BB cream went on beautifully and was my moisturizer, primer, foundation and sunscreen all in one product.  Heaven!  I wrote a review of Dr. Jart+ in a post long ago and it can be read here.  This BB cream did not disappoint.  No one was scarred in the couple of hours I was out and about.  Little does the population of my town know how close they came to disaster!

For the three or four age spots, the under eye area, around my (wide) nostrils, and two zits (where did they come from?) I used Estee Lauter's Double Wear Concealer, always a huge success.  

Eyebrow pencil was my love, MAC's basic eyebrow pencil which is a retractable "thingie," not the need-to-be-sharpened bit.  I could have gone whole hog on the eyebrows but I didn't need that today.  I told myself that a couple of good swips would do.  Actually, it had to do as I found myself longingly thinking of taking yet another dose of painkiller.  Energy and pain-wise, I wasn't doing so hot.  But like an octogenarian trying to climb Mt. Everest, I was just trucked along, even turning on some upbeat music to rev myself up.  Nope, that didn't help either.  Nothing but forcing myself was going to do in my getting-ready maneuvers!  (Martyr!)

I ended it all with a quick application of blush, this time by one of my almost-never-fail Trish McEvoy's.  She has a nice blush and tanner combo in the little page out of one of her organizers that I was quite happy with.   

Recently I've read in various places that if you're going to go out and don't have time for a fully camouflaged face (huh! I have *time* but I don't have energy) it's always a must to put on blush - or so sayeth some proponents - or to make sure you always do your eyebrows - or so sayeth others.  I decided I truly didn't need any more decision-making in my day.  Here we were, still in early morning and so many decisions.  (She says ever so dramatically.)

The most important thing was that I didn't scare anyone.  There was enough coverage of the little areas (really, "little"?) that needed attention and the blush and brows were taken care of, keeping me away from the albino look.

As  you can imagine, getting home I had absolutely no energy at all, especially as I tried not to think about how much dental work lay ahead.  The root canal I need has be addressed first. Who knows how much else needs to be done.  A huge Ugh!

Upon arrival at home, I needed yet more painkiller.  This was turning out to be a record day, not too different from my renewal of driver's license day - it was shortly thereafter that I had my long adventure, ie, my lengthy hospitalization. 

Which brings us to a huge fibromyalgia, CFIDS/ME/CFS and spoonie tip. I didn't have the energy and wherewithal to wash my face so I used miscellar water on cotton pads to take the junk off.  I've been meaning to write again about my love of miscellar water but keep forgetting.  For that bit of "how-fantastic-is-this-product," see my review and explanation by hitting this link.

There's more in terms of my getting myself together skincare wise, but that's for later.  I did want to share my modified makeup job, however, since I know all too well how hard it is to make ourselves as presentable as possible without using up too many "health credits" (which I had so pathetically saved up) or "spoons."  And as old age creeps in, so much more effort is needed. (Yikes!)

At any rate, my face feels fine.  Unlike most times I've gone out the house in the past couple of years (not via ambulance), this routine may indeed be a keeper.  My funky fibro and CFIDS senstive skin didn't get any rashes or blotchy angry spots and it really took so little energy.

I, however, forgot to mention that I still have scars from where that central line went into my neck when I was in the hospital a couple of months ago. The Dr. Jart+ did a fantastic job of covering up that area as well. Those red marks make me look like a high school kid who.... well, I'm not even going there!  

Finally, as always when I bid you an adieu, I hope everyone's doing their best, only better!  Ciao and paka.

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Monday, June 24, 2013

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.

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

Sunday, June 23, 2013

"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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Saturday, June 22, 2013

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, June 21, 2013

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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Tuesday, June 18, 2013

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, June 14, 2013

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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