Friday Tidbits: It's the Little Things in Life

The first hyacinths - with the lavender bush coming to life...

It was quite the adventure that I had the other day.  Amazing what can happen when one's able to venture out of the house NOT via ambulance!   

It's been recovery period around here, as I'm sure readers are tired of hearing ad nauseaum, but this was almost incredible, even for a highly seasoned CFIDS/CFS/ME and fibro specialist like me.  (After 38 years of this junk, I think the word "specialist" can safely be applied to me! Joking!!!) I hadn't yet recovered from my hair appointment three weeks ago (and I barely made it to THAT if anyone chose to recall and I hope you don't want to: YOU need a life!) so yesterday started a bit ... shall we say, "strained'? 

You see, my driver's license expired back in October just as I was busy with that newly-developed hypothyroidism, and the pneumonia no one had spotted for months and then discovered only when doing a routine x-ray before taking me in for the emergency gallbladder surgery.  (Don't worry: they took a day off for the IV antibiotics to kick in before surgery: they're not barbarians, after all!)

Now why, one may ask, would someone who no longer drives, doesn't even go down to the kitchen for months on end, have need of a driver's license?   Answer: why, because it's almost un-American to NOT have a driver's license.  As if those of us who are chronically ill don't already feel like disenfranchised citizens things are just made worse by not having a driver's license.  Its as simple as that.  It serves as identification for just about everything done in person.  It's uses are mammoth.  Furthermore, by not having a valid license, it seems to be that you've simply given up all hope of every being well again.

So, Tuesday started out a bit tense (HAAAAHAAAAA she adds hysterically) - ohhh, only about a 15 on a scale of 1-10. (Potetic license).  And since today's Friday, I think I'll resort to bullet points.  Besides, I'm lucky enough to be sitting up at all.  Someone, please come over here and just shoot me!  Now!  Quickly!

• Mood: lousy.  Hubs, who normally has the patience of Job, just exuded the kind of attitude that made you KNOW things will go wrong, which rubbed off on me.  This, on the one day of all days, when I needed someone positive to be helping me, not someone ignoring the fact that I actually needed an ER instead of going to get the stupid license.  Part of me was seriously afraid they'd take a look at me and my banged-up self with black and blue marks on my forehead, hands, etc. and turn me away, just as Qantas at first refused to allow me to fly one leg of my journey to Oz because I looked THAT bad!  (Long story I'll spare you!)  PLUS, I hate being late - it makes me crazy to see lateness in anyone around me - and this was much more than "just late"!  
• Hubs and I have different visceral reactions to the DMV (for you non-American readers, that's the Department of Motor Vehicles) - like two totally different planets "different"!  Hubs started his driving "career" living in an area where one to two days were necessary in order to get through the lines, etc., and come out with any hope of a license.  Getting your licence new or renewed in NYC is a total nightmare.  Mine was a fun experience in Virginia where you ran into people you'd not seen in ages.  

A happy aside and since my mind's going, I'm not about to edit this and risk losing this funny memory!  As a neophyte, I asked my boss for a half of a personal day in order to get my New York driver's license. Understand, my boss despised allowing anyone using their personal days and would interrogate you about it, which was actually illegal.  Well, when I said that I needed to get my license, he said, "heck, take the whole day off.  In fact, if you can get it done in less than 2 days, I'll take you out to lunch." Understand, my boss was a man of his word and I got to choose. I chose the "Playboy Club."  The look on his face: priceless!  And how he hated taking a young woman about his daughter's age there and offered me ANY other place, but I do have that "stubbornness" about me.  And why was I so stubborn about this?  I wanted to see those Bunnies close and personal, especially since Gloria Steinem had famously infiltrated her way into a job there in order to write her infamous article on her experience.  I even used one of GS's essays as an example of a persuading argument when I taught writing.  

So: hubs: DMV bad.  Me: DMV (in Virginia) a friendly place PLUS in NYC I got a very interesting and great lunch out of it.  (And yes, the NYC DMV has to be experienced to be believed!)  OK ... back on track!

• Furthermore, there's just something about not having a driver's license that makes you feel as if you no longer belong to American life.  There's a completeness that's missing, almost as bad as not having a job to feed yourself or have a place to live.  And we Amercians ARE pretty helpless without our licenses.  Our public systems of travel, apart for a handful of cities, don't exist or may as well as not exist. So, though I don't drive, in an emergency, I CAN!
• Fun fact and good to know: in at least our state (and I think it's like this is most states).  there is a grace period after the license expires.  Luckily, in our state it's a 6-month grace period.  Note, you can't drive with an expired license, but you don't need to retake the tests.  I see this as an example of how the powers-that-be do realize that things beyond our means can take place.  And I absolutely could not afford to let my license lapse.  Starting the whole process again (the written test and then the driving test) wasn't going to happen any way in my lifetime.
• And as Murphy's Law commanded, I was barely able to stand up in order to get to the bathtub, do my makeup, etc.
• Hubs was "losing" it when it came to getting me out of the house and tensions were beyond high. He'd worked hard on getting all my documentation ready in these days of heightened security and needed to even order a new Social Security card for me.  It wasn't enough to remember your number as was the case (I think) in the old days.  They wanted the actual card.  I mean really, my library card (long lost) had more substance than a card little more than a thinnish piece of paper given to me many, many moons ago, somewhere around the time Noah applied for his boating license (probably at our "local" DMV, where applications for boating licenses swelled the number of people there.) 
• But luck finally came our way.  The license process went quickly, especially as a handicapped person (aren't they sweet to "upgrade" my status to "handicapped"? I wouldn't have argued "dead.") And most important to us females, the picture turned out to be the best ever.
• While reading my favorite blog, A Model Recommends, the night before going to get my renewal, I kept forgetting that the next day hubs and I were aiming to get that albatross renewed.  When I started doing my face that morning, my year and a half of following Ruth, the model, paid off.  The dreaded picture: it didn't look like the "escaped from a secure institution" because we were reminded to stay away from that, thank  you very much!  Furthermore, I exaggerated all my makeup for the photo.  Also, thanks to Ruth, I was able to narrow the appearance of my nose with contouring and highlights.  I'd even conquered the dreaded hooker lipstick look that haunts me.  Best of all, as my own worst critic, I think I actually looked younger in the new license than in the old one, taken ten and a half years ago!  GO skincare and makeup!  (Now I just need to work on some fast developing jowls!)  Crazy lady that I am, I was so relieved and thankful once I got home that I thanked Ruth on twitter AND on her site.  Fear not: she already knows I'm not batting a thousand.  And she is such a nice young lady (need we say gorgeous as well?) that she seems to care!  The Patience she must have!  (As I knock my head against keyboard realizing how CRAZY I DO sound!)
• It was incredible leaving the house because the weather was perfect blue skies with clean crisp air at 80 degrees with hyacinths and daffodils up already.  The tulip leaves making their way towards the sun enlivened me.  Of course, then that Up, Up, Up spirit of mine (totally fabricated and forced) had a price to be paid as soon as I walked back into the house, not even waiting for the usual one or two day later malaise, etc.  But some things, as I often say, are just so worth it.
• And finally, I met our new neighbors with their three children which inevitably brought the sights and sounds of 30 plus years ago when *I* was the new neighbor with the young husband and three babies.  Now our family is one of the oldest in our little neighborhood.  As I type away in what used to be my baby's bedroom, many memories come flooding back, triggered by the children's shouts in their backyard or out on the sidewalk with other neighborhood kids.  "Mrs. Neighbor" and I talked for a while, even sat on my front steps (front porch furniture not out yet) as I told her some of the history of our houses, just as the neighbor on the other side of my house had done so with me when we moved here over 30 years ago.  And sweetly, she put her phone number in my cell so that in case of emergency... Oh she has NO idea, poor woman! 

Who knew so much could be accomplished in one day?  I am in more pain than I could have imagined and feel as if every cell of my body is glued to the earth.  In fact, I feel as if I've moved to a HUGE planet where the gravitational pull flattens you.  But it'll eventually turn into a good memory, or so I most sincerely hope!

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


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Note: I made a mistake.  It's the passport which is renewed every 10 years.  Our driver's license is renewed every 5 years. I knew something was off with that sentence but thought it was the grammar.  Thanks to the reader who jiggled my memory.

Not Throwing Out the Baby with the Bathwater OR Holistic Healing

I was sick but had no clue how bad things would get... only joy here!  

In 1997 I was at a difficult point in my life and I told hubs in no uncertain terms that we needed to put together some sort of plan, pronto.  I didn't know what the plan was, but I knew that what was going on with my CFIDS/CFS/ME, fibromyalgia and all the problems stemming from that were totally unacceptable.  I was dying.  I couldn't stand the life-saving measures any longer.  Yes, I had three children, but they were teens and could handle life without me.  After all, I was more a hindrance than an asset to the family.  

But life turns out funny.  I had someone over to come to clean our windows one day (what, so the new wife wouldn't find dirty windows?) and by the end of the day as I dragged myself out of bed to go to the kitchen to settle the bill, the guy said to me, "can I ask you what is wrong with you?"  That was surprising: no one had EVER dared to ask me that, no matter how bad I looked, regardless of the fact that I lived in nightgowns and putting on a robe was my idea of getting dressed up and being ready to go to the Ritz.

I hesitated to tell the man that it was Chronic Fatigue Syndrome (that hated and dreaded title) and fibromyalgia.  Mind you, no one had heard of fibromyalgia at this point (we're talking way pre-commercial days for Lyrica!) and Chronic Fatigue was at its peak as being addressed by the pejorative "Yuppie Flu."  I was sooo tempted to say something else, but couldn't even think of anything else, and besides, I have that bugaboo about lies.  So I told him.

His reaction and words were: "I knew it!"  Turns out that his wife had it also and she was going to a holistic clinic in a city about a 2.5 hour drive from my house.  He really talked up the clinic, describing it as a mom-and-pop 50 year-old operation, with many treatments going on.  (I talk about this in more detail in this post.)  He was practically begging me to go and it was hard to say no.  Furthermore, I had already told hubs that we had to get a new plan because things were not going well - a bit of an understatement.  Maybe Clarence, my guardian angel, had decided to help things along as well. Who knows why these things happen?

But help and opportunity come at the least expected times and in the most unexpected places.  Hubs barely got me to the clinic, I was just that bad off.  They wanted me to stay at their very rudimentary housing for the really sick, but hubs and I both knew that would kill me off right away.  After all, I should have been in the hospital but I just couldn't bear it any longer.  And so we started driving that long drive, once a week, for a day full of different holistic treatments.  Again, if you go to this link you'll get more info.

I really got into the whole alternative medicine thing.  I didn't stop the traditional, however.  I kept seeing my GP each month, kept in touch with my neurologist, and, of course, my rheumy knew what was going on.  They and my friends could see a huge difference and everyone was so happy for me.  After several months *I* started driving to the clinic!  It was truly amazing.  Actually, it was more like an almost-miracle.  (A miracle would have been a cure!)

Well, Thanksgiving rolled around and I am an all-out cook.  I mean, I cook and bake beginning Sunday or Monday before Thanksgiving and keep on rolling till the dinner.  No matter how many or how few people are at our table, it's the same amount of cooking: enough to feed the Red Army, as they used to say!

By Thanksgiving (that's Thursday for you non-American readers) I was really worn out.  Hubs and the kids were trying to get me to go to bed, assuring me that they could handle the rest.  In their dreams!  I did NOT want what my daughter labeled a "Pillsbury Thanksgiving."  I wanted the kind we'd always had in the past, no matter how I felt.  

Finally, I couldn't take the haranguing and said, "OK, but let me just fix this one thing because you'll never get it yourself."  I can't remember what the food thing was, but I remember quite well what followed.  I, somehow, without thinking, picked up the blade of the Cuisinart and it cut well into the tip of my thumb, almost losing said tip!  Honestly, the first thought was "thank goodness that tip didn't come off; it would have ruined" what it was that I was making.  You just can't make this sort of thing up!

OK, OK!  Back to topic: The bleeding couldn't be stopped, so after about 5-10 minutes my daughter rushed me to the ER.  

Now that was a rather interesting experience - for my daughter.  I would ask my daughter to call "Dad" and tell him to put this in the oven now.  Then call again and do this, then that ... you get the picture.  A cell phone would have been sooo nice but I think we had to use the hall phone, a real pain.  I was, let's face it, micro-managing dinner preps from the ER.

Finally, all was fixed up but I needed a tetanus shot.  Well, I wasn't going to have any of that!  I mean, I was now going alternative.  I didn't need that Western medicine nonsense.  (We'll get to the medication part of this in another post!).  The negotiating that went back and forth with the tetanus shot was seemingly forever, with me even calling one of my docs to know if I absolutely needed it.  Harrumph.  Yes, he said I definitely did.

I gave in.

The following Tuesday I arrived at the clinic and everyone kept asking me what happened to my thumb as it WAS an enormous bandage that couldn't exactly go unnoticed.  It finally got tedious having to keep repeating the story but it WAS kind of funny.  After all, fibro brain had struck again!  Type A personality was in full form!  And then I saw the elderly physician who'd been running this clinic for 50 years - treating mostly those with CFIDS and fibro - and went though the whole thing, culminating with how I'd had to get a tetanus shot.  Both he and his wife (a nurse) did such a double-take that it's amazing that they didn't break their (ancient) necks.  

"Irene, are you nuts?  OF COURSE you needed a tetanus shot!!!"  Then I got THEIR take on all the things that could happen without a tetanus shot.

Well blow me over!  Who knew?

So, the moral of this story?  Don't throw out any therapies, procedures, ways of healing.  Use everything you can get your hands on.  

And holistic/alternative/natural medicine doesn't mean you throw out the Western medicine.  All  have good things that help.  We can't be rigid in our thinking.  I haven't used that line about "rigidity" in a while and it bears repeating periodically.  Yep, we can't be rigid in our thinking!  (There you go!) 

And, BTW, you may actually wonder why I named my guardian angel?  (See link for the naming!)  Because he's EARNED it!   He has certainly helped me out of a lot of situations.  I'm so grateful to the window cleaning man who recognized the CFIDS/fibro woman and insisted so earnestly that she/I go to the holistic clinic for their magic.  It WAS magic, indeed, with Western medicine thrown in as well.

As always, hoping everyone's feeling better.  Caio and paka.


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A Great Topical Gel...

As many of my regular readers know, I've been going through a bit of a rough patch lately. (Falls and the rest are just "rough patches"?  Surely you jest, self!)  I'm getting a bit sick and definitely tired of the CFIDS/CFS/ME and fibromalgia and all the illnesses, conditions and problems that stem from them.

Lately I've had so much hip and buttock pain that it was affecting how I walk and was probably a big factor in some of my falls.  No, somehow I don't think it was responsible for the one where I thought getting out of bed via the foot board was faster and smarter than getting out via the side!  (That colored link will give you a funny -I hope - account.)  

When one of my doctors examined me, he found numerous areas of muscle spasm and even bursitis on both sides.  Local injections with lidocaine (for trigger points in the areas of muscle spasm) and cortisone with lidocaine (for inflammation of the bursa) helped but I still had a fair amount of pain in the hip and buttock area to the point that I was waking up in huge pain.  Usually, if I can finally fall asleep, pain doesn't wake me up, so you can imagine that I was NOT a happy camper - all week.  (And you know what they say, "If mama ain't happy..."  Yeah!  Cheerful place around here, let me tell you!)

I was already taking a maximum dose of Celebrex, which is an extremely safe anti-inflammatory medication, compared to the other anti-imflammatories out there.  I'm getting ahead of myself here, but I've long wanted to point out that Celebrex is much safer on the stomach than the other anti-inflammatories and is well tolerated by most, EVEN the stuff that's over the counter like Advil, Aleve, MotrinIB.   HOWEVER, the one draw-back is that you can't take Celebrex if you are allergic to sulfa-drugs.  (Thank heavens, a problem I DON'T have and it works well for me! Yipee!)  

Another point I've wanted to make is that when you read the side-effects of this gel, as with many other medications, the warning is overblown because it has to be.  That is, in the case of the gel, the same warning goes as for the oral meds, which we'll cover later.  However, you'll see why this is even a bit "deceiving" and certainly alarming.  But then you guys know how I feel about the FDA, etc.  Lyrica and Lunesta on the market despite SUICIDAL ideation and actions, but Vioxx taken off?  Nuts! 

But back on track... I'm already taking a narcotic medication - as needed for pain - along with a few other medications in my arsenal that should work but aren't.  So we got to the point where I've gone for the numerous injections in the hip and buttock area.  It's always worked before but this time we were really having trouble with the pain.  It was helping but not enough.  Mind you, I don't expect to be pain-free, but I can't live at a 9.5 and let the shots or meds get me to a 9.  It's hardly worth the "poisoning" of my body.  So, unfortunately, I was still having significant discomfort.  What's a girl to do?  (That last line seems to be a thread in my posts lately.)

Fortunately, there is a topical anti-inflammatory medication which has been approved by the FDA for osteoarthritis.  Any licensed physician can prescribe a medication "off-label," which as many of you know, means that if a medicine is approved for an indication such as arthritis, the doctor can legally prescribe it for other conditions such as bursitis, tendinitis, etc.  That's what's  happened in my case.  My doctor told me that the topical preparation, Voltaren Gel, might help me since it's effective in blocking the inflammation found in arthritic joints.  I applied Voltaren Gel liberally to both hips and buttock area (lots of real estate going on there!) and noticed a significant improvement in the pain and stiffness.  

So, what is this stuff anyway?

Voltaren is the brand name of diclofenac, an extremely potent non-steroidal anti-inflammatory medication (NSAID). Taken by mouth, it can relieve the pain, swelling and stiffness associated with arthritis.  However, it has major draw-backs. It can cause bleeding stomach ulcers, kidney failure, and liver damage when taken orally.  

On the other hand, the gel form is far safer than the pill form since only a tiny amount of the medication gets into the general circulation.  The bulk of the medication stays in the area where you put it and penetrates the skin to get to the area of inflammation. Therefore, as mentioned above, Voltaren Gel is far safer than any of other anti-inflammatory medications even those that are over the counter, such as Advil, Aleve, Motrin IB, etc.  Furthermore, Voltaren Gel has been around for well over over five years, so side effects have been seen and reported, analyzed, with no cases of stomach, kidney, liver toxicity.

Every year in this country approximately 16,500 people die of gastrointestinal complications due to ORAL anti-inflammatory medications.  I can't stress this strongly enough.  Taken as prescribed, ORAL anti-inflammatory medication can kill you or harm you, especially if you are susceptible to side-effects due to advanced age, have a prior history of ulcer disease, and/or weakened system due to other diseases.  

On the other hand, as my pain specialist explained, the topical gel form of Voltaren is very safe.  The only real problem with using this product is that if you are allergic to aspirin you MUST NOT use this product as its use could trigger a severe allergic reaction.   Otherwise, this preparation is very safe and potentially very effective as was my experience yesterday.  I'll let you know how it goes, but for the moment, I've got a bit of relief!  That's great in my book.

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


(Did you enjoy this article?  Please subscribe to my blog and you'll never miss anything.  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!) 

Friday Tidbits: The Saga of my Thinning Hair Continues...

OK, add a few decades, shorten the bangs area and put in some highlights and you'd have what I look like now...yeah!  In my dreams!

Anyone who knows me knows that I'd literally prefer a root canal rather than get my hair done.  (Oh, how I wish I were joking!)  Thin, fine hair makes for a very scary prospect as I walk into a salon for color, highlights, low lights and cut.  Yes, I know that hair can grow out, but that isn't the situation with me.  I've gotten to the point where I actually have "hair envy" when I look at any person on TV.  How in the world DID I get such lousy hair genes?  

My last visit to get my hair done was truly a shocker. First, it had been nine months since my last hair appointment.  Can you imagine?  I mean, I could have had a baby in that period if I weren't so old!  My stylist/colorist works wonders on volumizing my hair, but this last time was the most difficult time ever.  My five bald spots are growing in for the most part, but let's admit it: my receding hair line is the pits.  When my colorist started putting in those "foils," she exclaimed, "what in the world happened?"  A couple of years ago, I lost about 1/3 of my hair.  It was finally growing in nicely thanks to Rogaine and my Phyto vitamins for hair. My stylist wanted to know what in the world had happened to me now, horrified.  She was literally shocked by what I had - or in my case what I didn't have - on my head.  Instead of my six strands of pathetic hair on my head, I now had three!  (OK, slight exaggeration, though not by much!)

But this time, I had at least half my hair volume missing.  When I looked at the little, pathetic bits of cut hair on the floor, it literally floored me (pun, anyone?).  My stylist cut the hair little by little so that the bald spots would be covered but not having my hair too long because of the problems of maintaining hair for a chronically ill person.  The result is always some variation of the "pixie," easy, peasy.


According to the Mayo Clinic's web site:

 "Thyroid problems. The thyroid gland helps regulate hormone levels in your body.  If the gland isn't working properly, hair loss may result..." 

And:

"Sudden loosening of hair. A physical or emotional shock can cause hair to loosen.  Handfuls of hair may come out when combing or washing or even after gentle tugging.  This type of hair loss usually causes overall hair thinning and not bald spots." 

Shedding?  Oh my heavens, yes.  Not only was my hair brush full of hair each day, but the bathtub full of hair after a bath was frightening.  It got to the point that the shedding was so bad that hair was even getting into my mouth.  Yum!   And yes, I have the characteristic of the last third of my brows not there any longer, not that they were ever too prominent to begin with.  PLUS, my bald spots were caused by bad falls, not hormone-related.

So, what are the reasons/factors which put me into this state?  If I were a betting woman, I'd say:

• My hypothyroidism (see link for symptoms)
• My lowered HGH level
• My lowered DHEA level
• The stress of my gall bladder surgery
• The physical stress of undiagnosed pneumonia - for a few MONTHS!
• The emotional stress about seemingly everything: worries about my kids being the biggest factor, perhaps. (I can always find something to worry about, but I'm working on refraining from worry.)
• Flying halfway around the world to Malaysia (though I wouldn't change anything about the trip!)

I could come up with a few other factors if I really thought about it.  The compartment surgery of a year and a half ago when I almost died didn't help - obviously?

It's been three weeks since the hair appointment.  At least I now look like I can go out in public without scaring little children and unsuspecting men.

I'm back (as of yesterday) to using Rogaine on my barely-there eyebrows and the receding hairline.  I'm also using SmartLash on my eyelashes.  Yep.  Those, too, are rather skimpy.  And I actually had a discussion with hubs about "brown soap," Octagon.  But that's for another post!

BTW: Anyone have opinions on Octagon soap used as shampoo?  I'm off to do my research!

As always, hoping everyone's feeling their best, only better!  Ciao and paka!



(NOTE: I must emphasize that you check with your doctor before using Rogaine.  Menoxidil was originally used to lower blood pressure, for example. Since so many of us have low BP's, that needs to be factored in.)

The Beauty of the SED Rate

Not too long ago, I mentioned the SED rate in a post (link).  I'd heard about it for ages but for some reason it never REALLY made it to my radar.

What I've found interesting is that I've had these tests done - and didn't know it because so many tests are run on me.  My rheumy told me that when I've had fibromyalgia flares the SED rate came back normal. However, when I've had CFIDS/ME/CFS flares, characterized by fevers, sweats and swollen lymph nodes - common occurrences with me across the board - the SED rate numbers were often mildly to moderately elevated, only to fall back to normal when the above hallmarks of infection went away.  

But one fine day, while talking to my rheumy, he said something that made me go "whoa"!  Sayeth my rheumy, "If I had to choose only one test to use for the rest of my career, it would without a doubt be the SED rate."  Well blow me over!  It's just THAT good and useful?

So the follow-up question was, what exactly IS a SED rate?  I had a good idea of it: that is, it was a blood test and involved inflammation and I knew it was crucial for lupus, but didn't understand it well enough to explain it to anyone.

But my lovelies, I'm here to explain the test now!  It's a simple blood test which has been around since 1897, invented by Polish physician Edmund Biermackego  - in some parts of the world it is still referred to as "Biemacki's Reaction" - and then "rediscovered" in 1918 by two Swedish physicians, pathologist Robert Sanno Fahraeus and Alf Vilhelm Albertsson Westergren.  (Sorry about the butchering of the names!)  The two Swedes are remembered by this test with the name "Fahraeus-Westergren Test" (FW) and in the UK as the "Westergren test."  But I digress...

I find it incredible that the SED rate is performed in every hospital in this country.  It doesn't need to be sent out to a special lab and results are ready within an hour and a half.  Furthermore, it's not very expensive! (There's finally a break for us after all!)

Continuing: the SED rate (Erythrocyte Sedimentation Rate) is a measurement of inflammation in an individual. It's a simple measurement of how far a column of red blood cells (erythrocytes) fall in one hour. The further the cells fall, the higher the SED rate and the more serious the inflammatory problem. In fact, the red cells tend to clump when measured in the test tube and these clumps - due to inflammation - tend to make them heavier, thus the fast fall.  The rate is measured in millimeters.  For example:

• An infection such as Tuberculosis (TB) or severe pneumonia would have a high SED rate, usually above 50 mm.  
• Other medical problems such as tension headache, fibromyalgia and osteoarthritis would be represented by a normal SED rate, usually less than 20 mm. 
• The really bad, life-threatening conditions such as rheumatoid vasculitis and giant cell arteritis have extremely high SED rates, typically over 100 mm.

I guess you can see where we're going here!  A normal SED rate helps the doctor rule out a huge number of conditions, typically inflammatory or infectious.  If, however, the SED rate is abnormal, the doctor must figure out why since the SED rate is not specific for any one disease but it is extremely sensitive.  In other words, if you have a bad infection or have severe inflammation the SED rate will pick it up but it won't tell you which disease you actually have.  

Some examples of how my rheumy uses the SED rate are: 

• Distinguishing between fibro (normal SED rate) and polymyalgia rheumatica (high SED rate).
• Helping to determine if the patient has osteoarthritis (normal SED rate) or rheumatoid arthritis (high SED rate). 
• Determining whether the patient's chest pain and abnormal EKG is due to atherosclerotic coronary artery disease (normal SED rate) or coronary angiitis (high SED rate). 
• Monitoring therapy.  When a vasculitis (high SED rate) is being treated successfully, the SED rate should tend to go back down to normal.  If that doesn't happen the doctor should rethink his treatment decision and perhaps raise the dose of cortisone, as an example, to get the inflammation under control.  
• Reassuring the patient whose Sed Rate is normal that he/she does not have a life-threatening case of Wegener's Granulomatosus (because the Internet strikes again, putting fear into us where there shouldn't be any), despite the patient's insistence that he/she does in fact have this dreaded disease.  
• Tracking the course of a patient's disease. For example, a lupus patient might not need to take medication such as cortisone which can have a myriad of side-effects if the SED rate is consistently normal and the lupus mainly affects the skin and a few joints. However, if there is a spike in the SED rate there could be major organ damage if the lupus flare is not addressed.  
• Figuring out if the new patient who has just walked into a doctor's office with a complaint of headache needs immediate intervention to prevent blindness or stroke as one would fear with Giant Cell Arteritis  (very high SED rate) or can be treated using medications to only ease the symptom, as in tension headache, migraine headache or mixed headache disorder (normal SED rate).  

My rheumy (thank you, kind sir!) stressed to me that any doctor, regardless of specialty, can use the SED rate to his advantage in treating a whole variety of conditions.

As always, hoping everyone is doing their best, only better.  Ciao and paka! 


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Catching Up....

Soon, I hope!!!

I've been on a bad streak in the last two weeks, to put it mildly. Nausea, migraines, my fibro beyond the pale, the CFIS/ME/CFS kicking in all at the same time.  I had thought this last bad streak had finally culminated. Ah! But that wasn't the case at all.  By 4:00AM Thursday hubs found my head not on the keyboard - oh no, that would have been too simple.  Instead he found me on the floor, having fallen sideways off a rather substantial upholstered chair.  

Yes.  Falls: my life, it seems.  I was left with a hint of a black eye, abraded hand, swollen lip, swollen inside the mouth with a front tooth that hurt whenever my tongue would touch it or I attempted to eat, plus a few other goodies I've forgotten, thanks to short-term memory problems.  So, basically not to disturb my tooth, I'd given up on food for a few days.

But did my adventures stop there?  OF course not!   Yesterday, hubs found me on the sofa by my bed. Evidently, I wanted to write a post (can you imagine the gobbledygook??) and to make it "easier" to get to the computer, I thought I'd get out of bed via the foot board.  (Yes, because getting out of bed via a wooden foot board would be SOOO much easier and faster than getting out of the bed the conventional way!)  I hated to call hubs at work.  However, I didn't know WHAT was going on with me.  (And how I got to my cell phone is beyond me!)

I must say that I'd really done a great job of it.  That left leg of mine is completely unreliable thanks to my compartment syndrome surgery: I must have hit a nerve in my hip which was untreatable.  Unfortunately, having used that left leg for so many decades, I'd learned to rely on it, quite a bit in fact.  Ditto my left hand, which was damaged and underwent emergency compartment syndrome surgery.  Therefore, it's rather easy to misuse that foot and hand, and thus get myself into a FINE pickle.  At any rate, I fell hard, having hit my eye (again) and increasing the slowly developing "almost" black eye, with beautiful abrasions on that eye.  Cheek, yep.  Forehead, yep.  Left hand abraded and it looked like nice black and blue marks might appear, yep, with some abrasion on the right hand as well.

What's a girl to do?  I have no idea.  These past two weeks it seems as if I have been living on migraine meds and painkillers with very little relief, if at all.  The migraines are so bad that the ONLY reason I won't go to the ER is because I fear the treatment I'll receive because migraines are "invisible."  You get there and the TV blares, staff becomes rude because they assume you're a drug-seeker.  Going through a repeat of my history is daunting.  Lighting there is a nightmare and too many of the staff were never taught to speak with their "inside" voice, not shout as if I'm deaf - or perhaps don't understand English  - not quite getting it that loud talking won't cure anything at all.  Worse, upon having hubs politely explaining that I have a migraine and could the person please speak more softly, only gets taken as an insult and the voice inevitably gets louder.

The nausea is almost non-stop.  And I've also developed a couple of crazy symptoms: upon eating I get pain. Not, a stomach ache, but huge pain all over.  Doctors have told me that this has been described in medical literature, but no one knows what causes it.  You'd think this would stop me from chowing down everything in sight, but nope, I still consider that food is going to makes things better. Plus my appetite is completely out of control! I tried to stop eating for a few days but no joy!

So, those of you who are followers of my blog, followers on Facebook, and my twitter family, you can see why I've been mostly out of commission.  I think the video below expresses my sentiments MUCH better than I can. Besides they're cuter!

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

For those who can't get this on their mobile devices, the short song is here.  I'm not quite sure how it works with YouTube: hope giving credit to the person posting it is kosher!delboy85017  The song you want is "Gloom, Despair, and Agony on me...:

Friday Tidbits: Dr. Wolfe, Friend or Foe?

There is an old saying, "with friends like this, who needs enemies"?   Yesterday, this saying came to mind yet again when I stumbled upon an interview with Dr. Frederick Wolfe of the University of Kansas School of Medicine which appeared on news-medical.net/news/.  I know the name well.  Dr. Wolfe is a "well-respected" rheumatologist who was head of both the 1990 and the 2010 fibromyalgia criteria committees and has authored more than a few articles on fibromyalgia.  His forté is doing clinical research, typically with questionnaires and analyzing the data using statistical methods. 

Despite his impressive credentials, there is much in this published interview which I take issue with.  He describes the symptoms of fibro fairly well and is spot on when he tells us about the prevalence of fibro in the population.  However, he's made some statements which are questionable.  Wolfie just can't help being Wolfie, I'm afraid.  Bless his heart.  Examples of these are:

• Doubting that trauma can cause fibro despite copious medical literature which links trauma and fibro in a cause/effect relationship.  This is especially disturbing since Dr. Wolfe wrote an article, published in 1994, entitled Post-Traumatic Fibromyalgia and in a subsequent article published in 1997, he wrote that trauma may cause fibro.  (Is there an inconsistency here somewhere?  Duh!)  
• Stating that women have a lower pain threshold than men: is he kidding?  Does he not talk to women?  Has he never had a mother, a wife?  Has he never talked to a woman who's gone through labor?  Did he skip the ob/gyn rotation?  Had he not seen or helped in delivering babies?  Shame, shame, Wolfie!  You might want to think about taking that one back!
• He spends a lot of time talking about psychiatric illnesses suggesting that fibro is a "physical symptom disorder," a condition that is a psychiatric problem which can be found in the psychiatrist's bible, known as the Diagnostic and Statistical Manual of Mental Disorders, 5th edition (DSM-5), about to be published, despite great criticism, in May.  Does he really expect us to swallow this hogwash?  Has he forgotten or simply ignored the research that has shown, among other things, spinal fluid and muscle abnormalities in fibro patients?  This is not to say that some fibro patients don't have mental disorders BUT these psychiatric problems are on top of the fibro -  a far cry from labeling fibro patients as having purely psychiatric problems.  
• He implies that fibro patients go to the doctor only to obtain disability benefits and to manipulate the system. Is he on crack?  What fibro patient doesn't want to get better?  In fact, some fibro patients are so frustrated with their lack of progress that they often go from doctor to doctor NOT seeking "drugs" as some may try to make us believe, but in order to find real help for real health problems.  To suggest that fibro patients are malingering and only out for money is insulting! Shame on you, Dr. Wolfe!
• He said that "fibromyalgia represents a dominant theology."  This is just too bizarre for words.  What does "theology" have to do with anything in regards to fibro?  
• He bashes the pharmaceutical companies for coming up with medications to treat fibro.  Again, the issue is money.  Somehow, in Dr. Wolfe's mind, the pharmaceutical companies are preying on fibro patients in order to make profits.  Does he not prescribe ANY medications for HIS patients? Urrr.... I don't think he actually sees patients other than to hand out one of his blasted questionnaires.  Yes, these companies do want to make profits, but they went to the trouble of developing and marketing medications that help a lot of people.  Does Dr. Wolfe work for free? 

Although Dr. Wolfe is considered an expert in fibro I truly doubt that he has practical experience in treating  patients.  Since he is the one who brings up money, I would like to see the sources of his income.  I'll wager that the bulk of his income comes from government and pharmaceutical company grants and not from providing direct patient care.  

So, having said all of this, who am *I* to "pick" on Dr. Wolfe?  

Well, prior to the 1994 Vancouver meeting, I'd been to quite a few conferences on fibromyalgia or had sources who had been to many meetings.  These were meetings where the doctors who came together were enthusiastic physicians who were seeing a "new" entity and wanted to get to the bottom of what was happening to their patients.  

A rheumatologist known to me did his fellowship under one of the, if not THE, foremost world experts in lupus.  When he decided to leave benchwork research for the world of private practice, he was overwhelmingly surprised that the patients inundating his office were not lupus patients but were patients presenting with some sort of new entity that he'd not seen much of before.  This happened to a lot of doctors of that era.  And that new crop of rheumatologists saw that something had to be done about this newly-developing illness/syndrome.  Thus was the fibromyalgia criteria committee formed in 1986 which culminated in the publication of unified fibromyalgia criteria in 1990 - yes, the ones that Dr. Wolfe was in charge of.

These doctors were our heroes, that is, the hero to those of us who suffer from fibromyalgia.  They were made fun of and mocked by their fellow (older) physicians.  I know of one incident where a plastic surgeon came up to a rheumatologist at a party and said, "so, just between you and me, do you really believe in this fibromyalgia thing or are you guys just trying to make more money?"  OK, so the plastics guy had had a bit too much to drink, but this is a great example of how these young rheumotolgists were treated across the board by other doctors at the time.  And, I must say: EXCUSE ME?  Talk about nerve!  We patients have had to put up with a lot of crud, but think about what those pioneering docs had to put up with! 

When I went to the Vancouver meeting, I was shocked.  Gone was the comradery.  Instead the place was divided and the tension was the proverbial kind you could cut with a knife.  Everyone was in the foulest of moods and I don't think it had anything to do with the fact that OJ had just murdered Nicole that weekend.

Today, Dr. Wolfe is "respected" mainly for one reason.  He holds the key to many grants.  This is called "sucking up" in most places.  Furthermore, the behavior on the part of Dr. Wolfe is the kind of behavior which has caused many other specialists in other fields to leave benchwork behind, knowing what sort of petty people are responsible for handing out the research dollars.  Frankly, I believe many (if not most) academic rheumatologists are afraid of crossing him, allowing him to spout off unchallenged for the most part. 

A wolf in sheep's clothing?  You decide. 

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

The Scoop on Finding a Great Doctor

"The good physician treats the disease; the great physician treats the patient who has the disease."
                                                                                                 -Sir William Osler

I often get inquires from various sources asking how one goes about finding a great doctor.  Let me assure you that soon I'll find myself in that same position as well and I absolutely dread it.  After all, I'm in a pretty good situation, doctor-wise, for the most part.  (It took me long enough!)  When we moved to our "little town" - with it's freakish excellent medical care and a long story as to how THAT came about: for humanitarian reasons I'll spare you.  My doctors were, on the whole, about ten years older than myself.  Now it's time for that crop of doctors to retire and it scares me for many reasons.  Recalling how I went about building my arsenal before, and in thinking about what will soon be, I've come up with some tips as to how to go about trying to find those "treasures" out there.  I hope the following tips will be of help.  Here we go: Drum roll please!

• Probably familiar to all is the referral from a TRUSTED family doctor who knows you as a person, not just as a number or a disease and knows the "inside story" as to who's "good" and who's not so good.  This came in handy (understatement!) when our daughter became so deathly ill.  We trusted her local GI man but he said he wanted her to be at the other, farther away  "major medical center" when her colon blew (not IF, but WHEN).  I was shocked because we had already discussed that as a vague possibility and that she might need to be sent off to a city an hour away from us and one always hears about it on the news.  But he was adamant about her being a MMC 3 hours away, because, he emphasized - looking me straight in the eye with no joking about - that he wanted her to be known to whichever surgeon would be doing the inevitable surgery when the "unthinkable" happened.   He wanted her to be known as so-and-so, who loves music, teaches children with severe autism, loves to travel and so forth.  He most certainly didn't want her to be patient number #24601.  (Did I accidentally assign my daughter Jean Val Jean's number?  I think so!)  And how right he was.  Her to-be surgeon saw her at least once a day with his "fellow" seeing her, separately, once a day as well.  She was well known when she was rushed to emergency surgery when that sucker blew and we were all so thankful to her GI who had such wisdom and courage to demand she go to the "best place" in the US.  Furthermore, when *I* started to "negotiate" for bits and pieces of her colon, my daughter calmly said, "nah, take it out!"  She had THAT much confidence in her surgeon. (I'm sparing you the screaming in pain that went on with that "nah, get it out" bit.)
• "Nothing succeeds like success."  Word of mouth from family and friends can be extremely valuable.  You are looking for a doctor who will treat all of you, not just an organ or a hormone level.  If someone you know and trust has had great results consider going to that doctor for a work-up and treatment.  (See the Osler quote above.)
• Do your homework.  You want a doctor who is extremely competent and with excellent credentials.  Make sure that the doctor is board-certified in his particular specialty and if possible, credentialed in pain management by the American Academy of Pain Management or certified in Pain Medicine by the American Academy of Pain Medicine.  That's a good start.
• Make sure you investigate your prospective doctor's office policies ahead of time if at all possible.  Get a feel for how long the initial visit will take, how much actual face time you will have with the doctor, whether a nurse practitioner or a physician's assistant will be involved in your care (instead???), how much the visits will cost, and whether or not the doctor accepts your insurance coverage.  I've found that there's nothing worse than going to a specialist and finding out that there has been a bait and swich. You want to see the doctor you plan on seeing, not someone who was simply trained by that particular doctor.  Worse, you want to see the doctor you plan on seeing and not be shoved off to a physician's assistant.  I don't have a problem with PA's and so forth if 

• it is a minor matter and not for my CFIDS/fibro/endocrinological/neurological, etc, care 
• I see the doctor whom I've dished out a lot of money to see and traveled a long way to help me.  Some of you would die of horror if you know which doctor did this to me. 

• You want to make sure that an initial visit will be long enough to deal with your problem in great depth.  I see my GP for almost an hour each time, which is why he always sees me at the end of the day, knowing how complex my case is.  (OK, he also like to rattle my chain, but that's a small price to pay, especially since I like to rattle his chain as well!)  My endocrinologist's office assistant is upset with me, I think, because the endo spent at least a hour or so with me this last time; remember: he needed to deal with my usual HGH problem, the new hypothyroidism problem and the reality of having had gall bladder surgery and what THAT was doing to my hormones.  Furthermore, since things weren't going well with the thyroid and I am/was convinced that we are on a "Hunt For Red October"*, we needed to make a plan as to how we would proceed.  *I* was ready to scream "uncle" in order to get out of there, but there was a lot that had to be gone over.  And finally, my rheumy takes between two and four hours for an initial visit, but then he sees what I call the "train wrecks."  I hope this gives you a good guide for what is reasonable and unreasonable.  Hint: 20 minutes is absolutely unreasonable for a big problem. In fact, if all you get is 20 minutes with the doctor, you are being cheated - get out of there fast and find someone else, pronto!
• If you are complex and require a lot of time with the doctor, make sure that enough time is allotted for him to evaluate you thoroughly and for him to answer all the questions you have.  This is especially true when you consider that you don't want the doctor to allot x amount of hours, or x amount of minutes and then feel as if you're getting the bum's rush because he has a waiting room full of patients yet to be seen.  If  you are a complex case, you might let the receptionist know that you are going to need a lot of time.  If the answer to your question as to how much time does the doctor spend with you, total, is minimal, run - fast! - to another doctor. (This is experience talking here, not just run-of-the-mill hypothetical situations.)
• Do NOT go to a doctor ONLY because he is in your insurance company's network or he is "preferred" by your third-party carrier.  All too often, this doctor will unintentionally short-change you because there are quotas which need to be met and all sorts of corners which need to be cut when you have a third party, all because the bottom line is at stake. Third-party payers come between you and your doctor. In my humble opinion, you get what you pay for, but there AREexceptions to the rule.  Our family has made sacrifices and continues to give up a LOT of things in order to pay my doctor and medicine bills.  Priorities need to be made.  Our family's priority is the best medical care we can find, especially for me, since I have a 38 year history and a LOT, LOT, LOT of baggage.
• Make sure the tests your doctor orders or does not order, are based on your doctor's clinical judgement, NOT because he is being pressured by the insurers or the government when it comes to making these decisions.  In other words, will the doctor fight for you or kowtow to those higher up the ladder.  When I had my tonsils taken out, it should have been an in and out thing.  No biggie.  However, I couldn't swallow anything at all, be it from the infamous ice cream to my own saliva.  My ENT surgeon fought my insurance company tooth and nail for what turned into a 5-day ordeal.  But do you see how you need someone who WILL take on the system?
• It's a great idea when the doctor wants your records sent to him in advance so he can review all before you are seen.  This doesn't insure that he WILL indeed read all beforehand.  I was furious when I realized that a certain so-called specialist read my very complex history (which took a huge effort on our part to collect and put together) as I waited for him in the waiting room. And he still managed to get facts wrong in his follow-up letter.  Scary!  But see if you can ask around and find out if the info sent beforehand is indeed read well ahead of time.
• Be prepared to pay out-of-pocket for the care that you need, no matter how complicated your case is, or especially if your case is complicated.  Oftentimes, several patients who have the same diagnosis require vastly different treatments based on the unique characteristics of each patient.  Don't be bamboozled by rhetoric that suggests that a treatment will work for you despite evidence to the contrary.  (See link for the scientific method.)
• This is not the time to be politically correct.  A good doctor does not mind a frank discussion concerning your medical problems and he is not offended if you tell him that a treatment approach is not working.  If the doctor you have chosen gets haughty and defensive after you communicate with him honestly (and respectfully) find another doctor.  (Then see steps the steps above!)
• When you see your doctor for the first time, try to be on your best behavior. This might sound insulting, but you'd be surprised at how rude some patients are. Newsflash: Most doctors would be happy not to see another fibro and/or ME patient ever again.  Hear me: EVER!!!  Let's face it, just about every other type of patient is easier to treat than we are. 
• Too many of us who have CFIDS/ME/CFS and fibo, have a chip on their shoulders for various reasons: divorces, bad doctors, loss of jobs, financial concerns, a huge amount of pain and so forth.  Don't take it out on the world and don't take it out on your doctor.  Now if your doctor messes up with social niceties, and does a rotten job to top it all off, THEN I can sort of understand a bit of "speaking up." But try to remember you'll catch more flies with honey than with vinegar (sorry about the cliche).

And finally: don't give up.  It is your life, fight for it.

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

(Note: the sweet dog pictured above was a "healing dog" part of the "major medical center's" program to visit those who'd had surgery. More on that later if you wish to hear about it. There IS a funny story involved.) 

A Request...

Lately I've had more than a few people on twitter who have approached me about various aspects of healthcare, whether they be about my view of what I think should be done about a particular matter or my information as a "co-victim" or any number of other issues regarding health.  Normally, I enjoy "hanging out" with my twitter family, but lately I've found it a bit unsettling because of the advice factor.  

I love sharing with friends and getting to know people (not necessarily in that order) and I admit that I feel honored that anyone would want to know something of any substance from me.  But the other side of that double-edged sword is that at times I don't feel comfortable about some of the questions posed to me. 

I know that this might sound rather hypocritical of me when I have a blog dealing with CFIDS/CFS /ME and fibromyalgia and  touch on any number of other issues.  I have, however,  made it clear that I'm not a doctor. Furthermore, if you recall my vocality about how it makes me uncomfortable that doctors are on twitter, think how uncomfortable I feel talking too much about information as a fellow patient, though unlike a doctor, I don't have "better" things to do!  But I do try to let you know that the things I talk about are information, generalizations and my own life experiences.  However, things have become so uncomfortable of late that I thought it was time to state my feelings about twitter and make a request.  First the problems with twitter comments/questions.

• As already stated, I'm not a doctor, and don't want to give out medical advice, only saying things like, "this is MY experience," blah,blah, blah," or I've heard this, read this.  Furthermore, I do have my good sources.  However, a doctor I am not.
• I've said often enough that I'm techno-UNsavvy and half the time I don't even know where to find questions, resorting to my email account to find messages to me.  Sad, I know!  But old dog, new tricks... you get the picture!   Half the time I'm afraid I'm appearing rude because it takes me forever to find things addressed to me, or because I don't put hash marks in correctly, and so forth. I'm trying to get the hang of twitter, but talk about ulcers!
• To complicate issues, there are only 140 characters allowed for any tweet.  Do you see how long my posts are?  Is there anyone reading my blog who thinks for a moment that I can answer any question in 140 characters or less, much less complex questions?  Good heavens, half the time I don't even know what the person on twitter means at all, or even which post someone is referring to.  I know I must sound even more idiotic there than I do here! 
• With twitter, answers need not only be short but thought out, quickly.  With my comments here on my blog I usually read a comment and give myself a day to allow the reader's comment to gel.  I have Fibro-brain, after all.  We are most certainly not quick on our feet!
• Furthermore, to put things bluntly, I will not engage in a p*ssing contest!  Sorry for the vulgarity but that gets the point across most succinctly.  On this blog, I let comments come through and except for obvious spam (for Rogaine, etc.) I let comments through uncensored.  On twitter, I'm not sure I even see everything addressed to me.  However, I am not going to get into a "debate" with someone on here nor on twitter if I make a comment and circular reasoning is given as a retort.  Frankly, I could care less!  I know when NOT to kick "gomno."  My mom taught me the principle when I was a kid.  You kick it and it will smell and get all over your feet.  It's not worth the effort because for some people nothing will ever be enough, they will simply go around in circles: a little like Omarosa on "Celebrity Apprentice."  Who wants to argue with her?  She is not worth anyone's time and energy.  (Except for "The Donald," perhaps.)
• Finally, a little bit of respect is appreciated.  I had one person ask me which medicine I'm taking for something.  No "please," no "would you mind sharing," or any of the niceties that our moms or kindergarten teachers taught us at a young age.  Just "what medicine are you taking?"  As I've stated before, I do have a private life and there are certain things I don't discuss.  Furthermore, if I get to know someone, I may feel more comfortable about mentioning what I'm taking and other such questions.  But to make a "demand" without a please or introduction?  I'm not playing that sort of game at all.  No one should have to either! 

So, I have a request.  You know I love feedback and comments.  I absolutely love them.  But please, if you want to discuss an issue, make that comment here on this blog and not on twitter.   For all the above reasons, there is just no way that I can even begin to comment on some of the issues when I get a 140-character message, which is complex and often incomprehensible - and be expected to answer back in 140 characters. For those who are unable to comment here, because of whatever computer problems, my Facebook page is another way to go - at least there we have more than 140 characters to put across a thought. 

I have no problems with anyone asking me if I can cover a certain issue or suggests a topic for me to address. If I can do it, I'll do so.  Or, if a comment to you is too long and complex, I can write a post as a reply, as I've done on at least one occasion.  But twitter is just too much for this old bag... in fact it's too short for anyone when it comes to serious and complex issues.

Sorry, but it's the only way I can see myself as being responsible.  And I know that some of you who have been extremely wonderful in the way you've asked me things, will immediately think that I've got you in mind, and that's not the case at all.  Passing the time of day, so to speak, is fun.  Being supportive of one another is wonderful.  Laughing together about silliness is a joy.  It's just the rest that becomes a problem....

As always, I hope all are doing their best, only better.  Ciao and paka! 

It Can LOOK Like Fibro...

Trust me!  

Chances are that if you are reading my blog you are interested in fibromyalgia and/or CFIDS/ME/CFS.  You might even think that you or someone you know has fibro.  Complicating things, however, is that for many reasons, all too many people out there are being forced to make self-diagnoses, be it because of not finding the "right" doctor, not getting access to the "right" doctor, finances, or even not feeling well enough to get yourself into a doctor's office because of pain and/or fatigue.  (Oh no! Is this post going to be full of "and/or's"?)

However, that being said, as with every illness and/or disorder out there, a diagnosis of fibro and/or CFIDS is not one that can be made by the patient alone.  There's an old saying, "a doctor who treats himself, has a fool for a patient."  Actually, it was Sir William Osler, considered to be one of the greatest doctors of modern medicine and familiar to those of us with CFIDS, who penned that old adage.  We know of him because of the classic book by Hillary Johnson on CFIDS, Osler's Web.  If you're interested in it, this link provides an excellent review of the book.  But to get back to the matter at hand...

The same adage of a doctor and a fool goes as well for the layman when it comes to diagnosing his or her problem.  An accurate diagnosis is essential because without it proper treatment can't be obtained. Fortunately, there are criteria that enable your doctor to make an accurate diagnosis of fibromyalgia.  The American College of Rheumatology (ACR) published the first criteria in 1990 and proposed a new set of criteria in 2010.  So, why do I bring this up (again)?

There are conditions which cause widespread pain but are not, indeed, fibro.  If some of these conditions aren't accurately diagnosed, the patient may die prematurely, go blind or require kidney dialysis.  Here is a short "for example" list of some of these disorders.  

• Polymyalgia Rheumatica (PMR): This is an inflammatory connective tissue disease that causes the patient, typically over the age of 50, to hurt all over.  However, it differs from fibro in that a blood test - an erythrocyte sedimentation rate (ESR) - is abnormal.  Routine blood tests like the ESR, on the other hand, are normal in fibro patients.  If left undiagnosed, PMR can lead to a vasculitis, which can cause blindness, heart attacks and kidney failure.  Needless to say, you don't want to miss this diagnosis!  Yet how easy would it be to think you have fibro.  PMR should absolutely be ruled out. 
• Early Rheumatoid Arthritis (RA): In its early stages, RA can cause widespread pain without the joints being visibly swollen.  RA can be diagnosed with the use of diagnostic criteria published by the ACR.  The earlier a correct diagnosis of RA is made, the better the chances of significant crippling being prevented.  The patient who mistakenly thinks she has fibro, but really has early RA, is at a big disadvantage in getting timely treatment and may actually suffer permanent joint damage as a result.
• Systemic Lupus Erythematosis (SLE): This serious, often life-threatening, disease has been called "the great imitator."  Left undiagnosed, a patient with lupus can suffer significant kidney damage, permanent neurological deficits and may actually die prematurely from heart, lung, or brain involvement.  Again, there are accepted criteria for the diagnosis for SLE.  You don't want to miss this diagnosis either.  

What makes things even more complicated is that none of these diseases, including fibro, are disorders that only exist as single entities.  As I've pointed out in at least one previous post, a patient can have lupus and fibro, for example.  

My rheumy and I have spoken at length about this.  (Actually, I think he's about ready to take me out back and shoot me!)  Be that as it may, the bottom line is don't be your own doctor.  Get an accurate diagnosis and appropriate treatment.  

As always, hoping everyone is doing their best, only better.  Ciao and paka!  

(And I've actually written a short post!  Yay me!  I'm a slow learner but....)

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