Fibro, HGH and DHEA...

You mean you're STILL looking for what's going wrong?

I know I keep going on and on on about Human Growth Hormone "Deficiency" (I have trouble with the term but that will have to keep for another post).  You may very well be thinking, "here we go again," but there really is good reason to go on about HGH today!  Last night on twitter I happened to mention that blood work from the visit to the endocrinologist was slowly trickling in. Yawza!  My doctors and I are in a bit of a surprised state.

Fortunately, my thyroid tests are thus far all normal.  That is, the thyroid medication and dosage seem to be working a treat.  So it looks like THAT seems to be under control though to be perfectly honest with you, I personally have a problem with all thyroid testing and its accuracy.  (Another post, folks!)  But be that as it may, we need to look elsewhere for what the REAL problems may be and today we have two clues as to what may be causing me to feel as sick as I did back in 2001, if, that is, it's not the worst I've ever felt.  Period.

My doctor checked for a hormone called DHEA (Dehydroepiandrosterone).  This is not new territory for me. For those who aren't familiar with DHEA, this is a hormone that both men and women make and is released by the adrenal glands, located above each kidney.  This hormone is necessary for many bodily functions including resistance to infection, muscle toning and energy level.  In the past, I've actually been low in my DHEA level and have had to take supplements to get my levels where they should be. 

DHEA levels can actually fluctuate based on pain levels, nutrition, sleep and the presence of other diseases. Consequently, the levels should be taken (in the form of a blood test) periodically, some even advise every month or two.  (If we tested me every month or so for everything, I'd have no blood left, so we do so only about every year or so!)  Normally, DHEA levels decline with age - isn't that often the case?  Sigh!  In the past few years my DHEA levels have been pretty much spot on (hallelujah! Something that's right with moi!).  However, my most recent test shows that my level is about a third of what it should be.  (What luck!)  My doctor will be prescribing DHEA in pill form - again - to be taken once a day and we should be set on that front.  To tell you the truth, I've never felt much of a difference in taking the DHEA, but it makes the guys so happy that I just let them get their jollies with me when they can.  (Did that sound improper?  I assure you it wasn't meant to be anything but amusing!  I get my jollies where I can as well!)

However, the part that HAS intrigued me is that in taking my most recent blood work we checked out my HGH levels again, just for "fun," and there we were in for a surprise! (See previous links to HGH posts here, here, and here.)  

To be boringly accurate, one doesn't actually check for hormone levels but for by-product levels of IGF-1 (Insulin-dependent growth factor 1).  This chemical has a very long half-life so a random blood test will give the doctor a good idea of how much growth hormone has been released from the pituitary gland in the brain over the last few days.  As we age we make less and less growth hormone: this is normal.  However, as Bennett described in the literature beginning back in 1992, HGH levels in people with fibro are all too often low and in 1995 Bennett showed that growth hormone injections improved the quality of life for his fibro patients.  However, because adult growth hormone deficiency is thought to be rare, expensive and hard to obtain, doctors do not check levels of IGF-1.  Because they do not see cases of growth hormone deficiency the concept that it is rare in adults got solidified in physicians' minds, further complicating a convoluted history. (Understatement!)

OK, time to take a step back for a moment in order to understand the whole myth, "secrecy" and even legend of the whole HGH issue, though in very "Cliff Notes" style.  The whole issue became muddled when abuses began with the misuse of HGH.  In children, who indeed DO need HGH in enormous amounts in order to grow, etc, the hormone was suddenly abused by some doctors and parents who had children who did NOT have HGH deficiency but because they wanted their children to become better athletes and thus the whole system got out of whack.  Further complicating the system was when ADULTS wanted to look younger and abused the hormone for cosmetic reasons.  Do we even need to go into the abuses on behalf of adult athletes?  

The government tried to control the abuses of the hormone and imposed controls which the insurance companies took advantage of, thus making a cluster you-know-what.  When I was diagnosed with HGH deficiency in 1999 it took two YEARS for HGH to be approved on behalf of all agencies involved and we could not buy any for love or money, even though I was lying in the hospital dying with all of my organs shutting down when, finally, the HGH was shipped to us via courier.  It's still very difficult to get HGH (not available in a pharmacy but only each month, still via courier, after a call for a delivery time, date and place each and EVERY month! Talk about restrictions!).  HGH is still very difficult to obtain with lots of testing needed to "satisfy" all the powers-that-be, although much easier to obtain than back in 2001.  Now you have the back story in a nutshell, though trust me, a book could be written on this alone.

Back to today...

I just learned that my most recent IGF-1 level had dropped from a normal value about six months ago to a much lower level now.  This is quite unheard of.  We normally go to my endocrinologist to make sure that my IGF-1 level is not too high since as I age, we need to keep the level at the number that someone my age would need and NOT any higher.  Now here we are, stunned to find ourselves with a much lower number than what we ever could have imagined.

This is also surprising because my dose of HGH had not changed for many years, since 2001, in fact.  The last time my levels were taken was in September.  What could have happened to change a number so quickly or even to change it at all?

There are several possibilities that come to mind:

• Although my pneumonia was probably developing earlier, it wasn't diagnosed until October 11.  The pneumonia may have weakened me and made me more prone to develop a lower hormone level.
• At about the same time, I had my gall bladder and stones removed.  This is major surgery (as I found out the hard way!) and is a major stress on the body.
• The holidays certainly didn't help my general health.
• The remodeling and redecorating (which seems to be a permanent state of affairs here in this house) has most definitely not helped.
• We've gone from a family which has had embarrassingly great health (except for MOI - must give that caveat again!) to a family with embarrassingly BAD health with each family member undergoing major surgery in the last year and a half.  Talk about stress and worry!

At any rate, I include this info because again, I really want people out there to realize that DHEA and HGH levels are so important and frequently problematic in fibro.  Please do yourself a favor and talk to your doctors about this if you have unexplained fatigue, low stamina and muscle weakness.  Also, a deficiency of these hormones can make you flabby (as I can attest!) and unable to lose weight, no matter how much you try (again, I can attest!  Sadly!).  Again, previous posts go into other aspects of lack of HGH (see search box if need be).

I don't know that we've found my Red October in the Hunt for it (see previous posts on that) but at least we have one small explanation for my recent deterioration. We just need to see if this is yet another red herring or the real deal.

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



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"Woeful Me" ;)

Woeful daughter, "But DAAAAD!"

Today's post is not an easy one to do because for the last couple of weeks I've been feeling under the weather a bit more than usual.  Several times I told hubs that I wouldn't be able to write a post tonight but in the end my guilt got the best of me!  My life has also gotten a bit busier than is good for me - quite the opposite of what I should be doing at this stage, which is getting a lot of rest.  However, life happens and there's not much you can do, no matter how much you try.  Right?  Right!  So onward! 

• The week before last, I did end up going to see my endocrinologist since I felt it would be too rude to turn down an appointment that was carved out for me after the cancellation.  It was a very good, though intensive, visit.  First, it took me my usual 3 hours to get ready; secondly, my sleep was so messed up that I was up at 3AM for a 3PM visit.  The drive (by hubs, not me!) to see him is a bit long and the visit took over an hour.  Normally I see him at least once a year to make sure that my Human Growth Hormone (HGH) levels are where they should be and that the dosage is correct.  This time we had so very much more to go over, including the after-effects of my gall bladder surgery (hormones involved in this aspect of my health as well) and my adjustment (or "non-adjustment") to the hypothyroidism.  Much was accomplished and many more blood tests ordered.  In other words, he doesn't like where I stand some 4 months after the diagnosis of the thyroid problem.
• Then, as luck would have it, two days later we had a meeting about the progress of the redecorating, remodeling, etc., and how it was coming along.  Let's just say that it was off-the-chart stress.  Fini.
• On top of all that, even hubs started getting worried about the disappearance of my jewelry and we've been hunting it down every chance we have.  I thought the post on the "blue men" would dissipate any nerves regarding this issue.  That is, I thought I'd be able to put things into perspective about it all and let the jewelry appear when it would, but no such luck.  The more we hunted, the more I "yelled" at hubby and the more nerves were frayed. (Ahem.) This morning, after almost two weeks of jollies on the part of the blue men the jewelry reappeared in our house.  Hubs, the stalwart one, was almost in tears because I had been so upset.  (As Marlo Thomas, Rosie Grier and the kids would sing, "it's alright to cry!"
• Which brings me to the last bit.  I've been feeling so ill from all these events (and MORE!).  My health simply keeps getting worse and worse.  I find myself falling asleep at the oddest times for many hours, then not being able to fall asleep when I've had pain out the wazoo.  And it's been the craziest things, too, which have been bothering me!  For example, last night I suddenly developed bursitis in a cheek (not one of those on my face!) and it took three well-aimed shots to get that under control so that I could move.  Suddenly, I had not only one leg I couldn't count on - the one with the neuropathy - but a second one which was collapsing on me, the one with bursitis.

Would it be too trite to say that in the last couple of weeks it feels like the old song, "if it weren't for bad luck, I'd have no luck at all..."?   

One good thing, however: despite how I felt, I only cried once.  It could have been a river but at least I was able to control that part of my life.

As always, hoping that everyone's feeling their best, only better.  Remember: don't be like me: it really IS alright to cry!  Ciao and paka! 

Friday Tidbits: How Pain Meds Work, Pt 2

Hippocrates: "First Do No Harm..."

I suffer with a chronic painful condition, but I am not alone.  It's a shocking statistic that a third of the world's population suffers from persistent or recurrent pain.  It's been estimated that this costs the American people alone approximately a hundred billion dollars annually in healthcare, compensation and litigation.  And yet, despite the enormity of this problem, there is much that needs to be understood about chronic pain. 

First, let me say that "chronic" pain differs from "actute" pain because different mechanisms are in play. There are other types of pain, such as neuropathic pain, which exists without any obvious trigger, such as you would find in acute pain, caused, for example, by a fall or blow to a part of the body.  However, even acute pain is not completely understood.  For example, we understand that when a body part is injured or about to be injured, pain signals travel from receptors in the skin or muscle, which are known as "nociceptors."  (Hang in there, people!  We'll shortly be getting into some heavy science here, but fear not, I'll try to be your guide here as best I can!  Besides, if *I* can understand it - sort of - so can you!)

With acute pain, there are different kinds of nociceptors which are associated with different kinds of nerve fibers.  One type is called the A-fiber.  This nerve fiber has a very thin coating of a protective chemical called myelin - famous to us because of it's role in MS.  This fiber, when activated, creates a fast, piecing kind of pain. 

On the other hand, there's a different fiber called the C-fiber, which has NO myelin on it, and it transmits a slower, burning type of pain. (We're still dealing with "acute" pain here!)  So far, TWO classes of C-fibers have been found.  One class contains a range of neuropeptides - neurotransmitters, if you will - including Substance P and calcitonin gene-related peptide (again, all neurotransmitters).   It also expresses a receptor for another important chemical called "nerve growth factor," which also helps in the pain transmission process (not good, in other words!).

A second C-fiber class contains fewer neuropeptides (neurotransmitters) and mediates a different type of pain than the class described above.  Once the pain is transmitted to the thalamus and other parts of the brain, the pain signals are interpreted and modulated.  Some people have the ability to block out some pain signals better than other people. There are actually cells in the spinal cord which prevent pain signals from reaching the brain. They are called "inhibitory interneurons."  Some people have a lot of these cells and are able to feel less pain than others. This may be why there is a wide variation in how people register pain and may actually explain the differences in pain threshold from person to person.  (Believe it or not, but this is definitely the Cliff Notes version!)

Chronic pain differs from acute pain in that the patient has had the pain for a relatively long period of time (authors disagree on the exact length of time but most agree it is between 3 and 6 months).  For chronic pain to persist, there does not need to be a series of inciting facts such are repeated traumas.  Chronic pain involves a fundamental change in the nervous system including neuroplasticity, which is described below. The A-fibers and the C-fibers are not major players here.  So, why go on and on so much about the acute pain?  It's nice to understand what you DON'T have.  I always feel that knowledge is power.

Not surprisingly, there does seem to be some confusion as to why certain medications are used for certain pain states as opposed to other types of medications.  It's widely accepted by the medical community that although morphine-type narcotics can be very useful in acute and in some chronic pain states, they tend to be not very effective in neuropathic pain.  Neuropathic pain comes about when there is some underlying medical problem such as diabetes or shingles.  In neuropathic pain, the pain is not useful in the sense that it doesn't warn you about imminent tissue injury, such as putting your hand on a hot stove.  It's even more complicated than that.  The nervous system itself is sending weird signals like burning and even itching to the brain.  Many patients with neuropathic pain receive anti-depressant medications and/or anti-epileptics to help control the pain.  Some researchers believe that patients who have neuropathic pain actually have fewer opioid receptors expressed on the nociceptors and spinal neurons (nerve cells).  Whatever the reason, this pain is difficult to treat.

As if things couldn't get any more complicated, one must not forget the entity known as "phantom limb pain," which is due to actual changes in the brain itself.  The patient feels pain in a limb that is no longer there.

Note: This is an example of brain neuroplasticisy where the brain actually changes in how it processes and registers pain.  The pain of many fibro patients is believed to be due to this phenomenon which may help explain why fibro can be treated but not cured.  The brain, unfortunately, has actually changed, as can be seen in brain-imagining studies.

This may also explain why different types of pains in the same person responds differently to different types of medication.  For example, a person with migraine headaches who also suffers from back pain may need more than one type of med to treat both problems even though one might think pain is pain and that both conditions would be helped by a pain medication like morphine.  

Quite the opposite is true. The migraine type of pain tends to respond to a family of drugs called "triptans." Here is a type of pain which is pretty much understood!  We now have "triptans" which include Imitrex, Frova, and Axert.   Triptans are thought to work on the brain circulation to make it more normal so the headaches can be treated effectively.  However, these medications don't work on back pain, which is typically mediated through nociceptors and neurotransmitters like Substance P.

I so wish that doctors and the medical community could appreciate this well-understood part of medicine so much better.  For example, I was once hospitalized for some sort of problem - who can even remember why or what at this time?  YOU think YOU need a scorecard in trying to keep things straight.  Here's a bit of a secret: *I* need a darn scorecard even more!

As an example, though I'll explain the circumstances at another time, under "humorous events": Suffice it to say that during this particular hospitalization I needed pain medication for my regular fibro and CFIDS/CFS/ME issues, which I was given.  However, I also had huge pain in my back which wasn't helped by my "usual" meds.  This was pain that resulted from the lack of Human Growth Hormone (HGH).  This lack of the highly-regulated HGH  (which we couldn't even pay for it ourselves) caused my spine to become eroded and discs to deteriorate, while we couldn't get the HGH for two years, by any means tried and despite the fact that I passed the "gold standard" test with flying colors!

Moving on, the arrogant nurse who came to my room felt that I didn't need the added pain medication (already ordered by my doctor!) and promptly gave me a lecture on how serious it was that I was in the hospital for detoxing!  Excuse me?  Shut your mouth first and secondly, follow doctor's orders!  Furthermore, reading my chart wouldn't be amiss as well!  Hubs got a middle of the night call from me blubbering that I needed to go home NOW, my doctors who knew me and my case inside and out were displeased to be called by a hospital staff member who felt he should be some sort of "missionary" for the misguided, moi.  Said missionary could not begin to understand that different meds work on different nerve paths and that the problems I was having was a perfect example of that.  Being a mere patient, he also didn't want any "excuses" from me when I tried to explain how pain meds work, and gave me a lecture about that as well!  

I'm only grateful that this was in a well-regarded local hospital where the bureaucracy was little and not in a "major medical center" where they claim to know much but are sorely lacking in the non-sexy departments which - interestingly enough - don't bring in the big bucks when it comes to fund-raising.  Nor DO they care, as I found out through the many lengthy hospitalizations my daughter had to endure.

So there you have it, a bit more of how pain meds work or don't work.  I hope this helps - especially since I'm not able to write up these sorts of medically sophisticated posts too often!  They are killers!  (Joke!)

As always, wishing that everyone is feeling their best, only better.  Ciao and paka.


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My Personal & Fun Theory on Items Lost

What were THEY hunting for?

I'm not sure what it is exactly about my problems with finding things.  It's no exaggeration that I must spend about half my waking hours (which are many) looking for the most banal things one could imagine.  Yes, I understand that as we get older, we do tend to lose track of some things.  However, the concept of the "loss of things" which *I* experience is completely not understood even by moi.  After all, due to my CFIDS/ME/CFS and fibromyalgia I spend almost 24/7 in bed and don't need all that many things. Yet I must spend about five hours a day looking for just a few objects: my distance glasses, my reading glasses, my thyroid medications (the "old" meds belong to a "system" now so that's not a problem) plus the TV remote, Kindle, two iPads and my new (and sooo not understood) iPhone.  

Hubs, not to make him sound like a cruel fellow," finds it "hysterical."  You see, I get up to look for something, and within seconds forget whatever it was that I'm looking for.  Consequently, a twirling dance begins as I go in circles, much like a cat chasing its tale, trying to look for whatever's lost and hope I'll find it when I see it.  After a few moments of not finding it, I get back into bed but within a few minutes I pop back out again, repeating the routine.  Eventually hubs can't take it and asks me what it IS that I'm trying to find.  Half the time I can't remember!  Finally, I remember and he finds whatever it is or then spends time looking in such weird places that I want to strangle him!  It actually HURTS to see him being "ineffectual."  Just you wait, those of you who are relatively newly-married: this is what you get after 37 years! (Imagine the Smiley Face!)

But it all goes back to the question: how many times can a person misplace things?  A LOT, let me assure you!

But hang in there.  I need to give you a bit of a back story first and that might seem tedious, but I think you'll like this in the long-run.  And yes, we all know my posts are way too long, but let's admit it: you really do get some good stuff sometimes!  ("Sometimes"?  I think I better work on ALL the time.)  But back to topic...yes, yes, yes!

In a previous post I wrote about autopilot and muscle memory (see this link if you're curious) and in there I only touched upon the all-encompassing problem of mislaid objects.  It truly drives me crazy, especially because I "live" in a rather small area. However, there are a few complications:

• Our "new" bedroom is not completed - a negative for the "finding things" category because the "stuff" are in new places, other things not brought in (we've been taking turns being too sick!)  However, the room's rather clutter-free thus far - a negative in the "finding things" category as to "how the heck can THAT happen?
• I'm not used to the new bathroom which guilts me to no end due to it coming out looking like something out of a House Beautiful magazine of some sort, large, many cabinets and drawers, and rather organized... which for me means too easy for things to get lost!
• my little room, which we've dubbed my "office," is definitely a mixed-up cause!  I had to give up on my great strides once I got the cellulitis, knowing that my body was trying to tell me, "you don't want to rest?  Well, I'll SHOW you!" 
• Oh, and then there's the new closet which has definitely thrown me off balance, but again, it's not very cluttered since I gave away so many things on the principle that the more I give away, the fewer things I need to look through to find said object(s).  

The "funniest" thing is that I'm not alone!  After the "memory loss" post, several friends wrote to me that in reading that post they thought I was describing their own lives!  It turns out that you do not even need to have to be fibro-brain'ed to have this problem, though of course, fibro-brain makes it all that much more interesting; we often crawl around looking for said objects, get a migraine from all the scouting (don't even get me started on what all that up-and-down does to one's head) and are only exhausted if we are REALLY lucky.  The only good thing that I can say about hunting for lost things is that you inevitably find something you'd been looking for the day before, the week before, the month before: you get my drift! 

Back story again: I have a reader/friend (hi M!).  We communicate on my Facebook page because of some sort of glitch that I cannot begin to understand: she can read my posts but for some reason ever since Hurricane Sandy is not able to comment on my blog (not an unusual problem for some reason!).  Being ever resourceful, she discovered that she can comment on my Facebook page.  Ah!  Yet another reason to "like" my FB page!  Somehow, that's the ONLY way she can comment.  (Hint Hint! LIKE my FB page!) Wow!  That was about as subtle as hitting one over the head with a hammer?  No?  I'll then have to try harder, I suppose! ;)

At any rate, one thing led to another and it turns out that our reader had lost some treasures and had combed her own living areas as well.  Understandably, she was quite upset, knowing they had to be around but not being able to find them.  Exhaustion anyone?  I know it was wiping her out.  I wrote to her that her "adventure" would make for a very good post but it took me until today to finally "keep that promise."  I'm ashamed to say that the reason for doing so today is because I've been equally upset about MY problem for the last few days.  Desperate times and all...  But you'll also understand my hesitation when you realize how difficult this is to describe.

Which DOES now bring us to the present, SORT of!  

Back in the mid-'70's, there was a VERY short-lived show which had its premise around a bunch of "blue men" who existed only to conform to the way time worked.  For every second or millisecond, they would replace the things in the rooms or areas you were to be found in.  Hang in there.  It's a weird explanation and a bit convoluted. 

This sci-fi series - yet another reason I've never cared for sci-fi but this was in the first year or so of our marriage so I had a LOT more patience with hubs!  I admit I was more of a "perfect wife."  How times have changed!  (Smile, dear: just joking!)

The premise!  The premise!  OK.  For some reason, the way time worked, if no one was to be in a room or a certain place, that space did not need to be set up with furniture, books, clothes, trees (for woods, obviously!) and so forth.  In a strange way it worked on the premise of "if a tree falls in the woods and no one hears it, did it really fall?"  This was, now that I think about it, quite a topic of discussion back in the day.  Thank heavens cable TV was finally invented!

So, if, for example, hubs and I were sitting in our living room watching "I Claudius," riveted by the BBC miniseries with no commercial interruptions, the little blue men didn't have to touch the kitchen and bedroom areas because we, hubs and I, were not moving off that sofa for the next however many minutes.  But in the living room they would have to keep changing from second to second or millisecond to millisecond.  

The problem would lie in the fact that the more cluttered the area, the more that had to be put in it's place from milisecond to milisecond and sometimes things were "forgotten."  After all, these "blue men" must have been overwhelmed by all they had to do and perhaps were even a bit resentful of all the "stuff" that people had.  (Did I mention that the blue men were invisible to the people who lived inside the TV?)

This show actually came around at a good time. Vatican 2 was still reverberating with all of us due to the sea-changes.  Lots of saints got knocked off the list.  I'm not sure if St. Anthony, the saint of lost things, was done away with but I never felt the right to pray for superficial things.  If I lost someone's love, for example, that would be "legit" in my book.  Finding the lost notebook with excellent notes for a particular course on the night before the exam would be a borderline request.  The soul-examination, in the end, was never worth calling in of a favor from that poor exhausted (and perhaps status-loss-now) saint.  I felt I should use him for really big stuff like a lost child, not a lost necklace (if I'd had a necklace in the first place!).  There was a little Russian ditty which I would use but that wasn't very effective. (Sigh!)

But the "blue men"?  Oh, we loved the silly show just because there we were able to conjure up a reason for why you couldn't find something, would look for something "forever" and finally find it in the spot you'd looked at a dozen times without it being there!  (And yes, part of the story line was the guilt that the blue men felt when they forgot something and we mortals were forced to look for them.)

The series only survived a few episodes but the concept has stayed in our family for the last 30 plus years!  

I'm now on a hunt for my new watch, my wedding band, my engagement ring and a special decorative ring.  This may not sound like much to you, but these are objects that I intend to will to my kids.  The kid who will get whichever is always changing.  Ever the practical woman, I keep changing my mind as to who will get what, IF AT ALL, according to how I am treated.  Yes, I may sound totally bonkers, but as we all know, there are times when you become totally sad because of the way you feel you're being handled by family or someone does something that totally outrages you and you can't do anything about it because you're stuck in bed, for heaven's sake!  Combine bored with feeling lousy and then add slights or even more than slights and you begin to hallucinate dream of somehow getting "even."  Soon, if I stay true to the Southern tradition, I might start putting color-coded stickers underneath all furniture and other "valuables" as to who gets what!   When you're someone with fibro and or CFIDS, you want to get SOME sort of control in one's world.

At any rate, I'm particularly annoyed by the "blue men" while all the time hoping that is IS the blue men and not a robbery - on the one day I chose to go to see whichever doctor it was that I went to see before my endocrinologist.

If I find my watch, etc., I'll be laughing again about those impish "blue men."  If I don't, I have NO idea what I'll do: my most sentimental "worldly goods" have been lost. 

On that cheerful note (though I do hope that this post was a bit of amusement for your world and will give you one more thing for the survival arsenal) I hope that all are feeling their very best, only better!  Ciao and paka!

How Pain Meds Work

Oh to be young and pain free...

With my Friday Tidbit post discussing fibromyalgia, there were three comments, all of which addressed very important points regarding pain medication and the unusual effects that these medications can have on different people.  It was interesting to see that all three readers who commented on the post stressed that pain management must be individualized and that there is no cookbook for it.  Yippee!  I was so happy to see that we all seem to be on the same page, so to speak: no rigid thinking and no one-size-fits-all approach. Hallelujah!  This was definitely music to my ears. (Excuse me while a shed a few tears that a) people are reading my blog; b) comments were made; and c) we are all basically on the same page!)  

However, there were a few points which I thought needed to be addressed and to answer them in the comments would be cumbersome as well as somewhat of a waste: these are points that I have wanted to address, or points I did address long ago, and deserve a second look, with this being a good chance to repeat some of them now.  See this link for one discussion, the "pain contract."

The first point I want to make has to do with my own experience.  Many years ago, my pain had become intolerable and the "gold standard" pain medications had no effect.  Fortunately, two things were on my side: first, my doctor had the insight and the courage to persevere and not give up on me.   

Second, he went so far as to admit me to the hospital to try to get the pain under control in a safe environment where I could be monitored.  That was a bold move even back then. Unfortunately, in today's state of medical care, this would be almost impossible, as I've stated in at least two posts in the past.  

As I wrote - and paraphrase to suit the subject at hand: 

My first GP, bless his heart, admitted me to the hospital (back in the late '80's) and was determined that "we" would find a pain med that actually works.... During that stay I was given a pump with a button to press every time I needed a hit of pain medication.  When the pain level was at least an 8, if I'm not mistaken, my finger would hit that sucker.  Though I didn't realize it at the time (how could I when I kept looking at walls and ceilings and wondering how I could pull off climbing them: desperate times and all!) the reading of how many times I hit that button showed how much the medication we were trying was actually working and when it looked like it was a no-go, we'd move on to the next med.  Morphine, as with every other pain med tried, made no difference. I was so afraid that there would be nothing that would help but my doctors kept reassuring me that something would be found.  And after about a week that "miracle" happened.  Once I was given Demerol, a medication I'd never even heard of at the time, MY magic bullet was found.

Yes, different pain medications were tried and were found to be totally ineffective, even morphine.  Now, understand that in the pain management field, morphine is considered the standard by which other pain meds are measured.  In fact, the term, "morphine equivalents," refers to the strength of different pain medications.  In my case, we discovered that the only medication at that time which could control my migraines (body migraines as well as head migraines) and my fibro pain was Demerol (generic name, "meperidine").  Unfortunately, many doctors and entire medical centers frown on the use of this medication yet it works for me and, without it, I would have even more problems functioning than I do already.  

Consequently, over the years I've often asked, what is the reason for this negative attitude toward meperidine?  Some pain specialists who keep opioids as options in their arsenal have told me it's because Demerol's by-product, normeperidine, has psycho-active properties. That is, it works on the brain and can change your mood. (Really? could have fooled me!)   Furthermore, in some cases, it can build up in the system and become toxic.  In taking this medication for at least 20 years, some years so bad that I would count every single pill every day, several times a day, other years when I was in better shape, needing the medication hardly at all, this has never happened with me.  I've never ever felt any "euphoria."   All I've ever felt with Demerol has been relief from pain that is worse than what I experienced when giving birth to three 10-lb babies, two of whom were "back labor."  Note: our Lamaze instructor said, "all bets are off if you go into 'back labor.'"  Aren't I the lucky gal?  

Considering how much help Demerol has been over the years (understatement!), I simply cannot understand why there is such a bias against this medication.  Perhaps it is because to treat patients with Demerol requires a great deal of skill - and TIME, which some doctors don't wish or can't afford to spend with their patients.  I am required to see my doctor each time I need a refill, which is essentially every month and each visit inevitably turns into at least a one-hour session of talk about just the most important things going on with me: there's never enough time for everything.  The question then becomes: how many doctors can afford such complicated cases as myself?  How many doctors are willing to take on such a time-consuming and headache-inducing patient such as myself? 

But getting back to the question of opioids, there's another issue at hand:  I personally have never experienced it, but there is a phenomenon called opioid-induced hyperalgesia.  This is where increasing doses of pain medication can actually cause increased pain instead of decreased pain.  The only way to know if someone is suffering from this problem is to cut the dose of the painkiller and observe what happens.  If the patient feels less pain after taking the decreased pain medication, then this is then an example of opioid-induced hyperalgesia.  Ideally, this should be done in a hospital where a patient can be monitored and protected.  Furthermore, we now know that there is more than one type of opioid receptor in the brain which may explain why some patients respond well to one type of pain med but not to another. (Another post, my lovelies, another post!)

All of this discussion about opioids is not just of theoretical interest.  As healthcare costs become more and more of an issue, there is a tendency on the part of 3rd-party payers to restrict the number of medications on their formularies, groups of medications that are "preferred" by the third-party payers. This is purely a financial ploy and not for legitimate medical reasons.  To make things even more confusing is that a patient may become tolerant to a particular painkiller and may need to be switched to a different painkiller for the pain to be brought under control.  This is known as "opioid rotation."

Therefore, as was the case with one commenter, the painkiller Vicodin (a combination of hydrocodone and tylenol) may not work to ease pain and may actually have caused the pain to increase.  This is a classic example of opioid-induced hyperalgesia.  

Although the exact mechanism is not known, one may be able to speculate as to the reason.  For example, before medications come to market, they (obviously) need to be approved by the FDA.  The FDA reviews clinical trials where the medication was tested on thousands of patients.  Typically, these subjects are of European background with almost no Native Americans and other minority groups.  My rheumy/immunologist/pain specialist told me that whenever one of his patients has an unusual reaction to a medication or is extremely sensitive to even a small dose of medication, the search for non-European ancestry usually provides positive results.  Yes, we are very similar but we are also very different from each other.  Look at peanut butter, for heaven's sake!  It's part of the lunch of choice for most American children, but look at what can happen to that tiny fraction of children who are allergic to peanut butter!  Yet another example: I can't live without animal protein whereas my own mother cannot tolerate most animal protein. Just saying!  (Especially since my mom cannot understand nor accept the fact that I absolutely need animal protein, which she considers to be "poison" - and worse!)

Another commenter reported that after long-term use, the pain medication simply stopped working.  (I do love the comments!  Thanks!)  

Likely, this is an example of "opioid tolerance."  Instead of giving up on the painkillers altogether,  the doctor might want to try rotating the pain medications.  So, for example, if hydrocodone stops working, perhaps a med like oxycodone (in Percocet) or hydro-morphone (Dilaudid) might be effective.  It's important to note (I'm so tempted to put this all into bold capital letters but will restrain myself): when a patient claims that the pain medications stop working that does not mean he/she is drug-seeking or has a psychiatric problem.  It is most likely that he/she may have simply become tolerant to that medication and needs to have his/her situation re-evaluated.  

Pain management is complicated and simple, all at the same time.  It's complicated because there IS no one-size-fits-all and it is a very time-intensive type of care for the physician.  I know that I'm biased.  However, not allowing a patient to be hospitalized in order to find the right medications that actually works is frankly insane and criminal in my book.  When I was hospitalized in order to find the right "pain med" back in the late '80's, it was a very gutsy move, though in the long-run it helped lower my hospitalization bills to my insurance company.  It took only a week, perhaps less, to find the pain medication that worked for me.  As I've stated in other posts, today to find the right medication would take months because the patient needs to keep running back and forth to the doctor's office.  

Furthermore, in giving me the medication through an IV pump, we could go through the various medications at a faster rate: if it didn't work within 8-12 hours, it was on to the next med.  In pill form, you'd need days to establish what worked and what didn't and you'd also need to take so many other factors into the equation: were toddlers at home throwing off results?  Were running errands factored into the medication not working? Was the music from your neighbor's house driving you nuts and thus perhaps throwing things off? (JOKE?)  I mean the list is literally quite endless.  And once we hit the right med, again, it saved the insurance company a lot of money because I had fewer hospitalizations.  In other words, everyone won.  Ok, back to topic at hand.... I do tend to get carried away, I KNOW!  Imagine how much the doctor vetting this piece is loving my asides!  (What?  You thought I would just throw this info out into the world without having all this stuff vetted?  I may only be a blogger, but I'm trying to be as responsible as possible!)

On the other hand, pain management is a relatively easy field in that so much is known about the way many of these pain medications do work.  For example, one area that we know a little bit about is: why does codeine not work at all for some patients?  Codeine's a pretty powerful pain med and yet some patients say that simple Tylenol helps more than the schedule 3 codeine. What's up with that?

It turns out that codeine is not active on its own but rather needs to get changed to morphine in the body for it to be effective.  About a tenth of the population lacks this conversion ability due to a particular gene not being present.  How many doctors know this?  It's hard to say.  The literature is out there but not all doctors keep up with it, due to many reasons, including the time-factor or specialization factor.  This is precisely why I think that if you have a real pain problem that is (almost) intolerable, it is wise to see an expert in the field. And might I add that if you're a praying type of person, pray for that doctor with your whole heart and soul because they ARE difficult to find!  My GP, etc, all take up quite a bit of my prayer allotment time! I do NOT want to have to start finding a new doctor when my almost-retirement age docs start closing their practices! Talk about the stuff of nightmares...

Pain management:  there is so much more to know and to be uncovered in this complicated and fascinating field of study.  

This is, at the very least, only one aspect of pain management and the way pain meds work.  I'd like to get into much more, but it's simply too much for a single post and will be addressed in a future one.  Therefore, as they say, stay tuned!

With that, as always, I hope all are feeling their best, only better.  Ciao and paka!


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Friday Tidbits: Straight Talk about Fibro

Just between you and me....

"To quote the University of California San Diego psychiatrist Stephen Stahl, 'fibromyalgia is emerging as a diagnosable and potentially treatable syndrome' (Stahl 2001).  While acknowledging that psychological influences are powerful modulators of pain related suffering and dysfunction, there is now a growing understanding that fibromyalgia cannot be 'written off' as a somatoform pain disorder.  Fibromyalgia is a multi-symptomatic syndrome defined by the core feature of chronic widespread pain."  Robert Bennett (fibromyalgia pioneer)

                                                               
Much has been written lately regarding the notion that fibromyalgia is fundamentally a psychiatric disorder. The term "affective spectrum disorder" comes to mind and this term suggests that mood is paramount in the pathology of fibromyalgia.  I've been around long enough to see that this concept is not new and appears about every decade or so, only to be debunked over and over and over again.  Why is there a push to throw fibro into the psychiatric arena?  I mean, look at the quote at the beginning of this post: even the "up there" psychiatrists understand that fibro is not a psychological or psychiatric disorder. How much does it take to get the rest of the medical community (and the media!) to finally get that message?

One reason might be that it is convenient for doctors to think that fibro patients are mentally ill and they can be shoved into the direction of psychologist/psychiatrists.  Another reason is that once a fibro patient is labeled as having primarily a mental problem, the search for co-morbidities ceases.  This makes it very economical for third-party payers who seem to be more and more reluctant to pay for needed tests and treatments.  Just ask your doctor about how difficult it is to get insurance companies to pay for newer medications or to allow patients to get expensive tests! 

I believe it's time to set the record straight and, hopefully, the information below will put things into their proper perspective.  This is not to say that some fibro patients don't have psychiatric and/or psychological problems but rather to say that fibro patients have objective quantifiable physical problems and as a result may become depressed.  

Three important points need to be made to distinguish fibro from any sort of primary mental illness:

• About 20 years ago, fibro researchers Vaeroy and Russell found that the spinal fluid of fibro patients was much different than that of normal controls.  A chemical that transmits painful signals from the rest of the body to the brain, Substance P, was found to be three to four times higher in concentration in the spinal fluid of fibro patients, compared to controls.  This is definitely a neuro-chemical phenomenon and most certainly NOT a psychological or psychiatric manifestation.
• In 1992 Bennett reported a fascinating phenomenon that was found in the muscles of young fibro patients that was not seen in control subjects of the same age.  He used a sophisticated technique employing radioactive phosphorus and measured the patterns of muscle activity using NMR spectroscopy and found that the young fibro patients had an abnormal pattern known technically as "phosphodiester peaks" but they were nowhere to be found in the young controls.  Rather, these peaks were found in the muscles of elderly subjects.  This certainly can explain why fibro patients have fatigue and low stamina ... it's not because they are depressed.  
• Neuro-psychological testing is another tool that differentiates fibro patients from patients suffering from depression.  The two profiles are very different.  For example, the depressed patient is convinced that he cannot do a particular task whereas the fibro patient is confident, often insistent, that the task can be done - only to be disappointed because the task couldn't be accomplished, either because of pain, fatigue or cognitive difficulties, including mental fatigue. 

The diagnosis of fibro can be made by applying either the 1990 criteria or the 2010 proposed criteria (by the American College of Rheumatology) or both.  In neither case is mood or depression ever mentioned.  These problems can CO-EXIST in certain patients with fibro, but they are not PART of fibro.  This distinction is very important because it affects the lives of patients who may be denied benefits or even employment if they are thought to have a solely psychiatric problem.  The facts speak for themselves but one must have an unbiased and receptive ear to hear them.  

As always, I hope all are feeling their best, only better.  Have a great weekend all!  Ciao and paka! 

Determined to Read Again & Book Reviews

Reading in the school library in more stress-free times...

Oh for goodness sake!  I'm trying to write a post while fibro-brain appears to be at its worse?  My concern is: will I even make any sense?

But before I go on, I can't help "promoting" myself a bit. There aren't too many "highs" in my life, so this is a rather biggie for me.  Another blog, fibrodaily has a segment called "Fibro Warrior of the Week" and I was asked to be interviewed as their latest warriors, the seventh.  It came out yesterday.  Thanks so much FibroDaily: you made it all so easy and were so kind with what you said before the interview started.  

OK: enough with the odds and ends (moi) and let's get to the problems at hand.  

With the "cold" weather (understatement) it's the perfect time to curl up and read some mindless and fun books. If I'm to get back in my reading to where I was a few years ago, I need to get to the point where I lie down and not even notice the time passing by as I read.  So, it seems that for a while I'll need to forget Einstein's biography (true: what possessed me to buy one?)  or catching up on my Proust (made that one up) or reading about Malaria and how it ruled the world for thousands and thousands of years even into the present time in some places - like Papua New Guinea where my son "holidayed" not once, not twice, but three times when he finally came down with Malaria.  You'd think his mama would have taught him better!  But enough on the foibles (insanity) of my family.

I need books that will get my brain to start working out like you would exercise a muscle to stay in shape.  After all, in recent decades there were times when I had to force myself to read.  There were all too many days when my brain couldn't handle the usual and I had to adjust to that.  It was a funny time, one day a Harlequin-type romance, the next day a prize-winning novel.  In my shorthand way, I tend to say that I'm a moody reader.  However,  I've realized that's far from the truth.  It's that my brain simply can't tolerate or take in huge concepts, ideas, glorious writing which makes me gasp at the perfection of a word used or a sentence structure.  But in decades past, the Harlequin-type novel would creep in because the most important thing, as far as I'm concerned, is to read or you WILL lose that ability.  For example, I've never been the best at reading Russian, but I could do it.  The frustration set in because I read rather quickly in English but the Russian had always lagged behind,   However, in college I even read Dr. Zhivago in its original, plus a few other goodies.  But that sight reading is gone now.  So, use it or lose it!  I can't afford to allow this to happen with English.  

And so I'm into those baby-steps.  I focus on not thinking about my daughter and what she, as well as WE - our entire family - went through in her care.  I've had my own near-death experiences since my daughter's but enough time has passed that I need to get back to using that oh so important "muscle."  Now!  Fast and frequently.  Besides, reading is me.  I started back when I was four and would constantly get into trouble because I just couldn't bear not having a book in my hands.  I hear a title and it brings back memories of what we as a family were going through, almost more so than a picture.  

So, I'm admitting to a few books which I've read in the last few weeks, with the hope that some here will find a way to take a vacation from our DD:

• The Secret Keeper by Kate Morton.  I'd read her other novels and can't remember anything at all about them.  At the moment that's a good thing.  I find that if I reread a book, it's much easier to get into the reading habit, at the moment.  I certainly hope to progress beyond what I have already read, however. I did very much enjoy The Secret Keeper because it kept me guessing the "answer." I look forward to rereading her other novels. (BTW: forgetting what a book is about is not a negative: it's just the way my brain works.  I rarely remember what went on in a book a day later and that's one of the reasons I need to read a book in a single day or one sitting: otherwise I cannot  remember what had happened in the book the previous day!)
• My Mother Was Nuts by Penny Marshall.  This definitely belongs in the laughter category: by now I think everyone knows how I feel about laughter.  I've fallen in love with all the Marshalls.  What a family!  Funny as you would imagine, but there are so many more aspects to them to admire.  I love their love of family (despite the title: I won't give out more for fear of a "spoiler.") I loved this book so much that I then read her brother, Garry Marshall's, memoir, My Happy Days in Hollywood.   Anyone who grew up in the NYC area in the 50's and even 60's will absolutely love both books. BTW: I was able to "borrow" Penny Marshall's book for free with Prime on Amazon.
• Call the Midwife by Jennifer Worth is actually a trilogy and the last two are finally available here in the States through Amazon and kindle.  I absolutely adored the first book, and was extremely surprised that the TV version  actually respected the memoir, give or take a few minor liberties. I'm about halfway through the second book, Call the Midwife: Shadows of the Workhouse.  In this edition of her memoir Worth speaks about fewer people so that we can understand how certain things turned out the way they did in fewer characters' lives.  Her depiction of the workhouses is a great tribute/reminder to the horrific conditions that those "thrown" into those places had to endure.  It's a very compassionate and very well-researched book - though often as heart-breaking as it is eye-opening.  However, something about Worth's matter-of-factness and bits of humor here and there make this an enchanting memoir, definitely worth reading.
• I've rediscovered Nevil Shute's A Town Like Alice and loved it as much as I did 50 plus years ago. 
• I also reread To Kill A Mockingbird by Harper Lee.  Mockingbird really should be read every few years.  The love and gentleness of that particular era is striking. The quiet wisdom keeps you thinking long after you've finished reading the book.  You fall in love with Atticus with his quiet strength and goodness, as well as Scout, that observer of everything.  In other words, you fall in love with the characters all over again.  It's such a readable book and yet such a classic, perhaps one of the best American novels ever written.
• The Secret Life of Marilyn Monroe by J Randy Taraborrelli.  I knew very little about her, but just enough that I had the outline more or less already configured in this so-called brain of mine. This was a great reading foothold.  I can see the horizon where I'll be able to read almost anything that tickles my fancy!  Bring it on!  

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

Fibro Is No Accident

If you're going to fall, fall the right way!

There are many ways in which a person might develop fibromyalgia.  In my particular case I can recall having several significant accidents which involved my head and neck as a child. (Not surprising is it?)  Thankfully these weren't  severe enough for me to have surgery or even any hospitalizations.  However, looking back, I can't help but feel that those falls contributed to my present health problems. (Wanna know how to freak out a rheumy nor neurologist?  Tell him about your head traumas and watch him turn white!)  Although my CFIDS/ME/CFS was most probably caused by a bad "flu" in 1975, my doctors and I believe that the fibro was just ready to come popping out as in "the straw that broke the camel's back": I had become predisposed (by a LOT!) towards fibro because of the freaky (and I do mean "freaky") head and neck trauma I sustained.  I 'll have to save those gems for another post when we all need a huge laugh!

Quite a few people have mentioned to me that it wasn't until they had been in a bad fall or in a motor vehicle accident that they developed fibro.  Would they have gotten fibro anyway?  Or did the trauma somehow trigger the development of fibro in those people?  

Many years ago there was disagreement among doctors as to which it was.  For example, there was a large conference in Vancouver, B.C., Canada in 1994 to settle the issue.  It did just the opposite.  The doctors felt that they needed more information and more studies to answer the questions as to whether or not trauma could cause fibromyalgia.  Up until that time, there were only four published studies linking trauma and fibro in a cause-effect relationship.  The proceedings were published in the Journal of Rheumatology in 1996. 

Since that time, more studies have been done and by 2001 the consensus of the leading rheumatologists at a conference in Toronto, Canada was that in some cases trauma can indeed  trigger the development of fibromyalgia.  This opinion was unanimous and the paper was published in 2003 in a special edition of The Journal of Musculoskeletal Pain whose editor and chief is I. John Russell, MD, PhD., a prominent internationally known fibro expert who was also a member of the committee that published the fibromyalgia criteria in 1990 (mentioned previously).

Despite all of this information there is often resistance on the part of accident insurance companies to pay for the medical expenses of someone who's developed fibomyalgia in a motor vehicle accident due to someone else's negligence.  Just because you can't see this "invisible' problem does not mean that it does not exist. Giving insurers the benefit of the doubt (ahem) this can very well be because the insurers do not understand how a "whiplash" injury to the neck or a low back injury due to a rear end collision can evolve into a widespread pain problem like fibro.  What further complicates the situation is that it takes time for the fibomyalgia to develop.  Even more confusing, is that many patients with such injuries do NOT develop fibromyalgia.  Consequently, a careful evaluation must be made in each and every case to determine whether or not an injury caused fibro.

This situation is not only of theoretical importance.  Injured people need the best treatment possible and conventional health insurance can only go so far.  If an individual is injured by someone else in a motor vehicle, for example, all of their injuries, including fibromyalgia, should be covered.  This often requires a large settlement to cover the cost of medications and treatments that will likely be needed indefinitely as there is no "cure" for fibro.

What can be done?  If you're injured, make sure you get an excellent evaluation and if widespread pain was not present before the accident, make sure your doctor checks you for fibro.  Remember, there are now two different sets of criteria that can be used: the 1990 criteria published in Arthritis and Rheumatism and the 2010 criteria published in Arthritis, Care and Research.  Fibro is not a "wastebasket" diagnosis and can cause a great deal of suffering and even so much impairment as to be disabling.  (See other post re disability.)

Don't let this problem get out of hand.  Take advantage of the "window of opportunity" when healing is still very much a possibility.  Get early diagnosis and treatment so that things don't progress to the point of where you can no longer live a productive life.

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


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Friday Tidbits: Fibro Disability Woes

Don't let this be the end of the road for you!

Fibromyalgia patients come in all shapes and sizes and the severity of the illness varies from patient to patient.  While some are only mildly affected others are completely devastated.  The most severely affected cannot work to support themselves or contribute to the family income in any way.  Fortunately, many such patients have worked for companies which had provided them with long-term disability benefits in the event that they became too ill to work.  Yet another safety net is social security benefits.  However, a problem all too often arises when it comes to trying to obtain the benefits which a patient deserves.  After all, who wants to dish out money?  Worse yet, who want to dish out money for an "invisible" illness?  Consequently, often the disability carrier or the social security administrative law judge rely on a "Functional Capacity Evaluation" (FCE) to make the final determinations. 

Few will argue that FCE's are useful tools for evaluating a patient's ability to perform physical tasks, such as walking, lifting and carrying, especially useful in the evaluations of patients with such neurological diseases as MS, Parkinson's Disease and strokes.  However (and WHAT a "however" it is!), FCE's are woefully inadequate in the evaluation of patients with fibromyalgia.  

Why, you may ask? 

It's because even the most severely affected fibro patient may be able to function fairly well on a good day for a short period of time.  However (another big "however"!), typically they are not able to SUSTAIN that level of activity for longer periods of time as would be required in a work place situation. This is not just my idea but Dr. Robert Bennett, a world famous fibro researcher, published an article in the Journal of Rheumatology twenty years ago making just this point.  Many things about fibo have changed over the years, there are many controversies in the world of the fibro, but this is one fact that's remained constant. 

In his article entitled, "Disabling Fibromyalgia: Appearance vs. Reality,"  Bennett makes the very important point that the time element, for the most part, is left out in most FCE tasks.  That is, the physical therapist who typically would evaluate the patient, might determine how much weight someone could lift, or the ease with which a patient could change positions.  But this does not represent the type of impairment most fibro patients typically have.  Namely, the fibro patient cannot perform these tasks over and over again nor can the evaluator see one of the hallmarks of fibro, that of post-exertional malaise.  The evalutor doesn't see what condition the fibro patient is in 24-48 hours after testing.

Another example, which we who have fibro understand all too well, is that on a bad day the patient may only be able to lift a light weight a few times, but even on a good day that very same patient might do better - BUT not well enough to qualify that person to be gainfully employed. 

Furthermore, the FCE does not take into account the cognitive impairment that many fibro patients have. Add in the certainty that the FCE cannot measure or take into account comorbidities like growth hormone efficiency, or postural hypotention and you have a real mess. 

So, if you cannot work and you are applying for disability benefits you will likely be required to take the FCE. Don't be discouraged if the therapist or the doctor hired by the disability company decrees that you are capable of employment.  Remember they are likely relying mainly on the FCE.  

So, the question then becomes: what should you do?  

• First: Get your treating doctor to write a report explaining your condition and specifically describe why you cannot be productive in the workforce.  The more details and observations your doctor is able to put into the report, the better.
• Second: If you are denied benefits after submitting your doctor's report, consult an attorney who will likely have you seen by an expert in the field, who can explain to the disability carrier or the Social Security administration why you can't work. 
• Third: Get your local politician to act on your behalf.  Often your congressman can do some phone calling and get things moving in YOUR direction.  As I wrote in an earlier post, this may not always work since it often depends on how populated your area is and thus how high or low you are on the totem pole when it comes to your congress person.  But that person is a good place to go because - just think about it - that congress person needs to be reelected every two years: he/she needs your vote and the vote of your acquaintances, family, friends and even fellow church-goers, members of the Knights of Columbus, Kiwanis, People On Behalf of Saving the Blue Lagoon, for that matter. Congress(wo)men fear losing votes!

The point is that the FCE can and is most often misleading because no one wants to hand out money to you - or to anyone for that matter - especially in today's economy with budget cuts at every turn.   

At some point most fibro patients get to the point where they are pretty well educated about their illness, often due to the truism that it's hard to find a sympathetic and knowledgeable fibro expert.  Therefore, "Educate yourself"  is often redundant advise.  However, thanks to fibro-brain, not all of us are "together enough" to see straight when it comes to the paperwork, nor the legalities of what we are entitled to, how much we are impaired, and so forth.  So, if you see that you're in for a long fight, going the legal way is often wise.  I know, it's all difficult to deal with, but it's still a necessary evil.  

Furthermore, don't be a victim.  Just as with health insurance, most insurers will turn you down the first time because they bank on those who put in a claim to take the rejection as the final word.  They know a certain percentage of those who are denied will "assume" that it's a lost cause.  Well, it's not!  Don't let some entity which is in the money-making business and seeing only the bottom line ruin your life.  You've already been dealt a wicked hand.  Don't let things go completely against you. 

You, the patient, were promised these disability benefits so if you need and deserve them, fight for them or have someone fight for them on your behalf.  This is not easy to do, but if you know your rights and the literature out there (such as the aforementioned article by Bennett) you may well figure out a way of going about getting what you deserve.  

Hopefully, the aforementioned tips will be of help to some.  (One can only wish!)

As always, I hope all are feeling their best, only better.  Happy weekend, everybody!  Ciao and paka!


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