Restless Leg Syndrome vs. Myoclonus

There are two symptoms of fibromyalgia which are quite common: Restless Leg Syndrome (RLS) and myoclonus.  These two symptoms of fibromyalgia are extremely easy to confuse; in fact, many patients (as well as doctors) are confused by the two terms and use them interchangeably.  However, there is a huge distinction. 

But first: the commonality of the two phenomena: they both interfere with sleep. Yippee!  Just what we fibro's need, right?  (Not!)

Now to the differences:

Restless Leg Syndrome is basically defined as a "disorder in which there is an urge or need to move the legs to stop unpleasant sensations."  It's usually felt in the lower legs, between the knee and the ankle, which makes you feel as if your legs are moving but when you look down, there is no movement there.  It feels quite uncomfortable, indeed so unpleasant, that it feels as if it'll drive you mad.  It often feels as if the legs have bugs or worms underneath the skin and so the legs feel as if they are trying to get rid of them.

Furthermore, the following are characteristic of RLS, as defined by several sources as:

• usually occurring at night when you lie down, or sometimes during the day when you sit for long periods of time
• may be described as creeping, crawling, aching, pulling, searing, tingling, bubbling, or crawling 
• frequently occurring in the upper leg, feet, or arms. 

Usually, you'll want to move around and even walk and this really helps to relieve the awful sensations.  As mentioned above, they usually occur during sleep hours, which the NIH calls "periodic limb movement disorder" (PLMD) and that they annoyingly disturb sleep, that Holy Grail we fibro's crave (of course!).

The symptoms tend to worsen when you're flying or traveling by car, in class or at a meeting.  In other words, at those times when you're basically still.   All symptoms are believed to worsen during stress and emotional "upset." (Huh! What isn't?)  And yet the NIH site says "no one knows what causes RLS."  Talk about talking out of both sides of their mouths!  Watch that psychological/psychiatric wastebasket voodooism!  There's supposedly a genetic component to RLS. (Yeah, yeah, blame the parents if you don't know what causes it? Haha!)

RLS is often treated by Requip (ropinirole) and Mirapex (pramipexole).  Low dose narcotics are also used effectively in many cases.  (For more on RLS, the NIH site is here.)

Myonclonus, perhaps the "cousin" of Restless Leg Syndrome for our purposes, is defined as "a neurological condition characterized by sudden, abrupt, brief, INVOLUNTARY, jerk-like contractions of a muscle or muscle group."  In other words, the body DOES move, involuntarily, in the case of myonclonus.   

Mine, for example, is so bad that the entire body used to jerk up into the air, off the bed, plank-like, 4 feet up, and then boom, down.  It used to wake hubs up when I hit the bed like a cannon-ball.  Other times, my head is involved, as well as one shoulder or the other, jerking from being overtired, with a Tourette Syndrome-like look about it.  When I was at the "major medical center" with my sick daughter and had done too much work or gone too long without medication, the myoclonus would come roaring back and we knew it was time for another family member to relieve me for at least 12 hours of rest.

Myonclonus is often treated with Klonopin (clonazepam), though doctors are under a lot of pressure (from the insurance companies, peer pressure, the medical board, etc.) to avoid using benzodiazepines like Klonopin because it is a controlled substance in the valium family. 

However, there is a caveat that should be included here. The FDA has approved Requip for use in RLS.  On the other hand, the FDA has not approved Klonopin for treating myclonus.  Why should you care?

You should be concerned because the insurance companies have a huge say in your care.  Because the FDA has not given its OK for the use of Klonopin for the treatment of myonclonus, your insurance company may use that as an excuse to not reimburse you for Klonopin.  It's only "off label use," at the discretion of the doctor, and many knowledgeable doctors prefer Klonopin  - until they hear which insurance you have.  Rather than have a fight on their hands, they may very well cave in and go along with the FDA, an agency, I wholeheartedly admit I have no fondness for, for many legitimate reasons.  (Viagra, and it's sudden OK comes to mind; Vioxx being taken off the market for dubious reasons yet Lyrica and Lipitor remain on the market...but that's a topic for another conversation!)

So, there you have it, the differences between Restless Leg Syndrome and myoclonus.

A big BTW: since both conditions contribute to insomnia, both medications have a sedating effect on most patients.  Therefore, it's wise to use them at night when you're ready to go to sleep.  In fact, I take ANY meds which may possibly have a sedating effect, at night.  I try to get the sleep wherever I can find it - legitimately, of course - and after discussing all with my team of doctors.

Basically, it all comes down to this: Restless Leg, you want to move your legs; myonclonus,  you have no control.  Now isn't that easier to understand than the BS the NIH and the FDA send out?

And in the meanwhile, I hope all are doing their best, only better.  Ciao and paka!

Nervous System Pathways

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Betrayed!

One of the best days of my life was reviewing my SPECT brain scan and seeing tangible evidence of all the damage in my left brain.

I'm not a conspiracy theorist, but if one looks at the story of CFIDS and/or fibromyalgia, one can't help thinking, "we" who are afflicted with CFIDS/ME/CFS and/or fibromyalgia were "doomed," for whatever reasons, right from the start.

It seems that NOTHING has gone right in the past almost 40 years.  Excuse me for repeating myself just a tiny bit from what I wrote in my "P*ssed Off" post, but to put us all on the same page, here are just two points I made: the few funds we fought so hard for from the NIH, were misappropriated by other agencies and really, no one cried "foul," much less was anyone taken to court for criminal activity.  When the doctors at Incline Village, Nevada could finally talk the CDC into sending a "team" to investigate the outbreak of this new disease - in a cluster - the "team" had the gall to spend its time skiing and sampling the restaurants instead, with the "team" arriving in Atlanta and declaring there was no outbreak in Incline Village.  And so it went....

It's now decades later and a third generation is becoming ill with this truly monstrous,  hideously cruel, though highly invisible, disease.  And what's happening?

Well, what's always happened, but for a few glorious years in the late '80's and '90's, is that we are being thrown back into the psychiatric wastebasket.  What???  It's the 21st century and we’re doing what?  Going back to 1970's standards?

• A couple of points first:  There are markers that can be found that prove CFIDS/ME/CFS and fibro exist.  The elevated protein in my spinal fluid is just one example, and it was seen in 1984 and 1988!  Yet are these biomarkers being used in anything that can help the CFIDS, etc, patient?   Not much.  Ampligen, around since the 1970's is still trying to get off the ground and avoid bankruptcy.  Funny, Viagra never had this problem.  Heck, Viagra was the first drug (or thereabouts) to be fast-tracked.  Those congressmen and senators wanted their...well,  you know what THEY wanted!  And they GOT it, as I'm sure everyone's aware, given all of us have gotten a spam or two trying to sell us the product, for male OR female, since we started exploring with the most primitive of computers and the Internet.
• Furthermore, just as another example - albeit a very stunning and almost unbelievable example - until the 1960's, rheumatoid arthritis, a disease NO ONE today would dispute as being a terrible physical affliction, was thought to have its origins in mental illness.  And yet man was almost to the moon when this disease was still marginalized and worse.  The term, "Rheumatoid personality" was used quite extensively until blood tests like Rheumatoid factor became commonplace.  Mental institutions a hundred years ago were filled with patients who had such physical problems as lupus and thyroid disease, to name a few.  It wasn't until objective blood testing revealed the true cause of the patients' problems and effective treatment could be sought after and implemented that the psychological wastebasket treatment was thrown out.  See a parallel with the mess we're dealing with here???

This sort of thinking is not just insulting but it's downright dangerous as well. There are consequences that will and are being paid because of this lackadaisical attitude.  Some entity, a government, a bunch of people, some sort of institute doesn't like a certain illness, well, then just throw it into a psychological wastebasket.  I think Hitler had that problem to some degree, no?   But it gets worse.  Here are some bullet points for you!

• Throwing CFIDS into the psychological/psychiatric category causes people not to be inspired to look for the real causes or co-morbidities.  The proof is in the pudding, folks.  We're no further now in 2012 than we were back in the 1970's, really, or for all practical purposes.
• Betrayal by the American College of Rheumatology.   Now there really needs to be no touching of the patient: overlap of CFIDS & fibro, both diagnosed clinically, that have, for all practical purposes, no lab test or x-ray that leads to diagnosis are in for a lot of trouble.  Oh, some tests are available, but the testing is incredibly difficult to obtain and no insurance company is going to OK the costs.  The scarier part, to me at least, is that the American College of Rheumatology (once a great champion of fibro and CFIDS) proposed a new set of fibro criteria in 2010 which was based on the patient's history, a questionnaire which would yield a Widespread Pain Index (WPI) and a Symptom Severity Scale Score.  If the WPI reveals pain in at least a certain number of body parts and the symptoms of fatigue, cognitive problems and unrefreshing sleep are sufficiently severe then one is labeled as having fibro.  Imagine this, in contrast to the 1990 fibro criteria, where a minimum number of tender points had to be present.  Now the doctor doesn't need to touch you at all!  Furthermore, the dolorimeter, an easy, practical, HARMLESS and inexpensive test, which was used to measure pain threshold is basically gone, as is the Brain SPECT scan, which shows abnormal blood flow in the brains of fibro and CFIDS sufferers.  Yet the"useless," "harmful" and money-making (money-wasting) tilt table test is still out there, almost a relic of the Spanish Inquisition, and  persists. (Getting rid of the tilt table test is like trying to kill off Rasputin!)
• With no touching of the patient, only a questionnaire, how accurate are the criteria?  They become completely subjective and hardly objective at all.  This only gives ammunition to those who say that CFIDS and fibro are not real illnesses or that they are psychological.

Along with no - or only a cursury - physical examination, other potentially serious illnesses would likely be missed (as is already happening, me being Speciman A!):

• The sad thing is that medicine in general is become more and more depersonalized with an over-reliance on testing, and a minimum of physical contact between the doctor and patient.  When the doctor would check for fibro tender points, he would often find evidence of such co-morbidities as myofascial pain syndrome, arthritis, thyroid disease, growth hormone deficiency, to name a few.  It seems as if the newer criteria are for the convenience of the doctor, not for the benefit of the patient.  It's bad enough that fibro and CFIDS patients are labeled as being depressed or suffer from anxiety, but if this trend continues, even those docs whose hearts are in the right place will rely more and more on questionnaires and less and less on physical findings.
• This psychological wastebasket is also dangerous since once patients are labeled as mentally ill, all symptoms are viewed through that prism and physical pathology all too often goes undiscovered. It is important to note that fibro and CFIDS patients score very differently on standardized pyscholological tests than do patients with depression.  For example, the depressed patient will not attempt a task or activity, underestimating his ability to perform it, whereas the patient with CFIDS or fibro truly believes that he can accomplish a given task only to collapse when the flare of the disease knocks him down or out.  Yet that very patient believes that in the future he can attempt the task and succeed.  No two types of patients could be more different, yet the medical establishment stresses the psychological and downplays the physical.  When a rheumatologist is asked to use a questionnaire instead of a physical exam to diagnose a physical ailment, something is very wrong - after all, don't psychiatrists behave this way, never touching the patient?
• Why is it that medications such as anti-inflammatories, anlagysics, and quinine are taken off the market for problems which cause side effects in relatively rare instances?  However, medications such as Lyrica and Lunesta, which are still on the market and are so dangerous that they are required to disclose mind-blowing side-effects on their TV commercials - which not only include suicidal ideation, but suicidal actions - are still being sold like pancakes at Octoberfest?  Why is it that we are so "persecuted," since I cannot think of another word to use?

As I wrote in an earlier post, Stalin, in his great sanity (not!) decided to punish the "rich," "peasant" class, the most productive class in Russia and the Ukraine, called them "kulaks" and took all their land, food and shelter away from them, then shipping them to Siberia in cattle cars.  This occurred in the famine he induced, on purpose, in order to kill at least 10 million Ukrainians in just one winter, 1932-33.  These two countries, Russia and the Ukraine, are still feeling the repercussions of having lost so much talent, 80 years ago.

Somehow I feel as if this country - plus a few others; we are not alone in this criminal behavior - in the land of the free and the brave, is treating each of us as "kulaks" also, again.  The vast majority of us with CFIDS/ME/CFS and fibromyalgia were all highly productive citizens at one time, contributing to taxes, the economy, the work force, but many are now trying to get by on meager government funding, which is barely enough to stay alive. Think of how much good to society we are wasting when we allow such a highly-motivated and skilled population to rot away. Yep, we're like the kulaks. The only difference is that we're just dying at a somewhat slower pace.

We paid our taxes, we trusted our government, as well as the medical system, and we've been betrayed in the worst possible way.

What can be done about our situations?  I'm not really sure, but here are just a few thoughts:

•  I know that celebrities have often changed the course of illnesses or causes.  AIDS' "perfect storm" was when Rock Hudson, the beloved movie star, contracted AIDS.  The country softened its views about AIDS.  To further away the stigma, then Elizabeth Taylor, Princess Diana (under great criticism), Elton John and young Ryan White, who was helped by Elton John, were able to stir the conscience of this country's attitude toward AIDS and funding - and to make it not feared like leprosy - an analogy which I've always found to be repulsive since why should leprosy be stigmatized?  Actually, it took a lot more pieces for that "perfect storm," but these were the ones that put AIDS on the map and made it no longer the fatal disease it was in its first years, if medication is taken properly.  Yes, it's expensive, but then so too is my Human Growth Hormone alone, not to mention the 25 plus meds that I'm on, give or take a few, depending on which year it happens to be.
• Mothers Against Drunk Driving (MADD) worked because Candice Lightner, the mother of a girl tragically killed by a drunk driver, knocked on every congressman and senator's door, repeatedly, befriending staff with coffee and donuts until she found someone who might be able to help.  It was a tough job but look what it led to!  (And yes, there are political problems, but again, look at the results!)
• Breast Cancer awareness began at a grassroots level.  Parkinson's entered the mainstream with Michael J. Fox, and his dogged determination.
• Autism became big when upper-class parents united.

But CFIDS and fibro?  We need to find our celebrities, our dogged pursuers, the ganging together by healthy people who are on our side and start a huge funding project for our cause.  How this will happen when the American College of Rheumatology has given up on us as well, I'm not sure.  I know it's not going to happen for a while.  But happen it must.

Our country can't afford to keep losing its greatest resources, its best and its brightest.

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


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P*ssed OFF!!!!

Edward Munch's "The Scream": Note the two men in the background: the two disinterested parties!

Today I happened upon yet another article about CFS and/or vs. ME and let me tell you it hurt - badly.  I am so damn tired of all the psycho-babble I've had to put up with for 38 years and frankly I'm p*ssed.  However, if I'm truly honest, I'm mostly hurt.  It just feels more demeaning to admit that I'm hurt, since it takes away my power - or what's left of it, that is -it makes me feel vulnerable and one thing I've never been is "vulnerable." 

I'm a strong woman whose family survived Lenin, Stalin and Hitler.  Try living with those genes and DNA!  For background, just to show you what "we" are made  of, in 1932 when 10 million Ukrainians died from the Stalin-induced famine, our family made it.  So, you think a bit of psychology is going to make me sick?  Our huge amount of hectares gifted by Catherine the Great was taken away - for the infamous "collective farms," or "kolkhozy" - and the family was shipped in cattle cars to Siberia, but we endured.  

Given this sort of background, what some sort of unhappiness is going to ruin my health?  My mom had a swollen belly from starvation for a year, suffered malaria for seven years, worked in a German forced labor (slave labor) camp during the end of WW ll and some sort of psychology/psychiatry is going to hurt my health?  I was raised on daily freshly squeezed carrot juice each morning (don't ask!), hot porridge, fresh soup, meat and veggies every single day until I left for college, but for two wonderful years in boarding schools, and I'm going to get sick because of some stupid psychological reasons?  We had a strong community.  I went to Russian Orthodox camp each year for the experience and the wonderful Catskills Mountains.

I hate it when the whole psycho-babble is brought out.  Nothing, and I mean NOTHING, could be further from the truth.

When I got sick in 1975, I was very thin, too thin.  I also had very little money so I finished my BA in English literature in three years and one quarter, quite the feat, but because we paid by the quarter, not the credit hour, I felt I had to do it that way.  Almost everyone of my fellow campers were high achievers, typical type-A personalities who ended up working prestigious jobs such as translators for the joint US/USSR space programs, top translators for US presidents, professors at ivy league schools.

I took such heavy loads that I had to get special permission from the dean.  I also had to take all heavy reading and writing courses towards that end because I started out as a math major and had other courses to make up for that deficit as I finished my BA.

But my days at university were the happiest of my life up to that time.  I loved my "uni."  I absolutely thrived there.  I felt as if I had friends from all sorts of fields and when I started my Master's and met one of my best friends in grad school, she marveled that I knew "everyone" on campus.  I didn't, of course, but crossing the drill field was often quite a social event because I always knew quite a few people. 

I got on very well with my profs, one of whom is still a great friend to this day.  In fact, I brought my fiancé down to meet him and got "Papa Squires'" OK on marrying the guy.  It was not an easy-peasy interview, poor hubs.

So, when I got sick in grad school it was because of reasons that had to do with finishing my Master's while simultaneously writing papers, doing original research, writing my Master's thesis and reading ten novels a week, reading critical analyses of the works I read, and often writing papers on the novels, as well as teaching two freshman English courses, and grading approximately six papers each quarter (with huge corrections and suggestions along with conferences) for about 30 kids per class.  

Then I got sick in March of 1975 but as soon as my mom could get me well enough in April, my friends all pitched in to help me study for my Master's Oral's, the dreaded two-hour exam with several professors who could ask me anything at all to do with any period of British or American literature (from minutiae such as obscure quotes and dates to my take on huge literary overviews) as well as the history of the two nations (with a tiny bit of French history thrown in, given the impact of the French revolution on British and American literature).  All this with only a can of tuna each day, with 2 teaspoons of mayo mixed in and 2 saltine crackers.

People commented about my weight and I loved it.  Skinny was in, maybe even more so then than now.

Another "mistake" I made was my lack of sleep.  My final year I lived on 2-4 hours of sleep a night and was famous for my all-nighters.  However, what will always stick out in my mind is Thanksgiving week when I couldn't make the 12-hour drive home and stayed at school to finish as much work as possible for the quarter.  That week I survived on 2-4 hours TOTAL for 7 days and nights.  Nuts?  Maybe and probably, looking back, but it was a "no pain, no gain era."   Furthermore, I had always been driven and determined.

But happy?  I was in absolute 7th heaven.  I was able to get my BA and my Masters in just 5 years total - which should have taken me 7 or more years - all while teaching too.  The only downside was that after the flu (six weeks and going back way too soon but I was so determined!) I was suddenly having trouble recovering my stamina.  I couldn't do what I did before.  I even ended up in the hospital that summer (at my mom's home in NJ) with a bad case of colitis from all the antibiotics I had to take, because all my secondary infections had secondary infections.

But I swear: If I EVER again come close to a medical professional/specialist who SHOULD know better who DARES to imply that anything was psychological or psychiatric to my illness, I may have to b*tch-slap him or her.  And I don't give a flying "F" if I'm jailed for it: it might be the only advocacy I can see myself doing at this stage in my life!  Psychological factors can be nothing further from the truth.  

Shortly thereafter, (that is, after receiving my MA), I met my hubby and I knew the moment I laid eyes on him, 38 years ago if anyone is counting, on an unwanted "blind date" that we would marry ("Aw sh*t, this is what I've been waiting for all my life?!?" is what ran through my head as I laid eyes on him - I so was NOT looking for marriage but wanted my career).   Yet within a month we were making wedding plans.  Two days later I started working at another university a few states away from NY, started my PhD, something I'd wanted all my life.  

However, I knew that I couldn't handle a long-distance romance, teaching, and working on my final degree, though ironically, I had very little time to finish my PhD.  For some reason, all my credits were applied towards my PhD and since my Master's thesis was original, I had to just fill it out a bit.  But going back to school wasn't working.  I was happy but I was too sick.  I had a good friend who would occasionally con me into playing racket ball with him but I couldn't go but five or ten minutes without falling.  I soooo loved going to school.  I was making friends and I had my old friends from camp at church, much to my joy, plus my married BFF lived in the area.  

Instead Lady Luck came around when I decided I would stop after one semester.  I got two jobs in prestigious publishing houses in NYC, right on 5th Avenue.  People fought for or only dreamed of these kinds of jobs and then in the mailrooms (as I'd have been happy to get a job there just to get my foot in the door).  Scribner's and Norton's?  OMG!  But I arrived in NYC with glowing recommendations and immediately found a job with an editor who spent most of his time telling me stories about Franklin Roosevelt, the Kennedy's and even Svetlana Alliluyeva, Stalin's daughter: that was the sort of family he came from.  

When his assistant came back after almost 3 months of medical leave, I already had a job lined up in trade sales at Scribner's where I made decisions as to which books got reprinted and how many copies.  Those were pretty major publishing houses!  They were something I couldn't have imagined in my wildest dreams, the home of Hemingway and Fitzgerald in the case of Scribner's, just to name two greats.  I eventually had three wonderful children and my hubby is a professional.  What more can/could a girl ask for?

No, my real nightmare began only once I started to complain to doctors that there was definitely something wrong with me.  Then the "psychological sh*t" aspects of my health started to come into question.  But they were so very wrong.   Very wrong.  Things were great.  "So, up your's," ANYONE who wants to take it up with me!  I'm game!  MORE than GAME!

At this point, I can safely say, I know MORE than most frigging so-called specialists.  Want a fight, an argument?  You have NO idea whom you are dealing with and who I have on my side as the experts, so step down and shut the "F" up!   Stop torturing the kids who are coming up now, a third generation, for God's sake!

Shame on you that you guys never had the nerve to stop or truly investigate the criminal misappropriations of the very few funds the NIH had to research CFIDS.  Shame on the CDC guys who went out to Incline Village to investigate the breakout of a "new" disease and spent their time skiing instead.  And shame on some of the so-called specialists out there who are, frankly, media whores.

That's how I see it and that's 38 years of crap that I've put up with which has done nothing, but allowed a third generation to now be just as sick as I got back in 1975.  For heaven's sake, 15-year olds are now getting sick!  THAT IS JUST UNJUSTIFIABLE AND WORSE!!!!   It's criminal!

Yes, I'm all for breast cancer awareness and research.  But perhaps it's time to put some of those dollars into CFIDS and fibro.  The three leading causes of death for CFIDS?  Cancer, heart disease and suicide.   Funny, how the government doesn't even keep track of the suicide rate.  And the suicide is NOT psychological.  It's the pain and suffering that can't be tolerated any longer.  Make no mistake: the treatment by the so-called specialists is also killing them/us.

There's an expression, "they kill horses, don't they?"  Trust me.  We are suffering MUCH more than horses!!!

Guess Who the Idiots ARE: The NIH?

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