I just discovered my latest posts have not made it to Facebook.  Lucky you, I have remedied the situation.  You haven’t missed much.  I posted a new page under the Chicken and the Egg header discussing which comes first with fibro, pain or brain damage.  The jury is still out.  I can bend my flip-em-the-bird finger again, so my latest fibro attack is settling down.  I plan on getting back to Silver Nanos on May 10.  Since I was having so much hip, back, and leg pain, I got cortisone shots in the bursa in my hips.  That helps more than it’s supposed to, and I’m feeling a big difference already.  The hard part now is not diving in too quickly and undoing the effectiveness of the shots.

It’s time to go on to a different quest after spending too much time in the brain, although I’ll have to return to it, I’m sure.  Going back to chemical imbalances would be worthwhile, metabolic disorders maybe.  However, one of the interesting things that came up during the brain quest was personality disorder and fibromyalgia.  I may take a peek at that – it would be a good chicken/egg question.  If anyone has any ideas, throw them my way…

New page posted under “The Chicken or the Egg”: Pain or Brain Damage

A sneak preview of the conclusion in case you don’t want to read the whole thing:

….There’s a bottom line somewhere, but I’m not sure I can find it.  The chickens are glaring at the eggs at this point.  And the eggs are just smug.  There is really only one thing that everyone seems to agree on.  There are physical changes in the brain with chronic pain, including with fibromyalgia.  The longer a person endures the stress of chronic pain, the more pronounced the changes.  To me this indicates that the changes are caused by chronic pain.  However, there are other indications that the changes induce the chronic pain.  Medications such as pregabalin that work directly with brain mechanisms do have a positive impact on fibromyalgia symptoms by changing those affected areas, which then would make me think that the changes in the brain would be the cause of the pain.  The parallels between aging and the changes that occur in patients with fibromyalgia add a different dimension to the question.  So here are what seem to me to be the options:

1. Long term chronic pain causes changes in the brain, particularly in the pain network
2. Changes in the brain, particularly in the pain network, cause long term chronic pain
3. Fibromyalgia is caused by premature aging of the brain – people with fibromyalgia are actually “elderly” in a way.

My personal favorite: extended periods of pain train the brain to be oversensitive.  It becomes an involuntary habit, kind of like an addiction, and is “cemented” into the brain tissues themselves, affecting how the brain areas talk to each other. Unfortunately, there isn’t a 12-step program for fibromyalgia.

In looking at the brain as the problem with fibromyalgia patients, I came across an abstract, “Alterations in Gray Matter Volume are Associated with Reduced Evoked-Pain Connectivity following Acute Pregabalin Administration” (see Puiu et al in library).  Yeah…

So first of all, pregabalin has nothing to do with Thanksgiving turkeys.  The brand name is Lyrica, one of those heavily advertised drugs with the auctioneer at the end mumbling through side effects.  The study, published in January this year, looks at how pregabalin works, and that’s what’s interesting.

Apparently, taking pregabalin for a short time actually causes changes in the brain which correspond with pain reduction.  It’s a little confusing, because taking the drug caused a reduction in gray matter in the bilateral posterior insula and the medial frontal gyrus, both of which are areas that are named as having reduced gray matter in fibromyalgia already.  Reducing it more decreases pain?  I may be reading it wrong, but “Short-term PGB treatment alters brain structure and evoked-pain connectivity, and these decreases were associated with reduced clinical pain.”  Seems pretty straightforward.

So it’s more to think about.  The chicken and the egg – brain vs pain article is still forthcoming.  By the way, I haven’t tried Lyrica – it was cost prohibitive.

I can bend my flip-em-the-bird finger again!  It still hurts and is incredibly stiff, but it bends all the way again.  This latest fibro attack is pretty classic in terms of the way symptoms spiral and feed off each other to create the perfect storm.  When I have any sort of pain, people ask me all the time if it’s fibromyalgia.  The answer isn’t easy, and attacks like this illustrate why.  

Remember I have non-fibro issues, bursitis and osteoarthritis in particular.  When non-fibro issues are involved, pain management for those problems is important.  With this attack, I can say with some certainty that lower back pain combined with the acute stress of changing jobs probably initiated the fibro pain.  

Think in terms of knee pain.  Everyone has twisted their knee at some point.  When you twist it pretty good, you probably have a tendency to limp.  Suddenly, as you limp your way to a better knee, you notice that your OTHER knee is acting up, or your back, or your hips, or your left shin.  In fact, those pains may be even worse than the initial twist.  You stop limping and the other pains settle down.  This is a simplistic version of a fibro attack.  The difference is that when you stop limping, the other pain doesn’t settle down.  In fact, it may intensify before it gets better.  It may last a few weeks or even months.  

In this case, the lower back pain probably put my stride off balance a little and exacerbated both the arthritis in my knees and the bursitis in my hips, both of which prodded along all the other pains, including the ones in my fingertips.  Remember fibro pain is a bit irrational.  My cat walked across my abdomen the other night and sparked a pain in my shoulder.  I know he caused it because he decided to walk back and forth several times before curling up on top of me.  Every time he hit a certain spot near my pelvis bone, a nerve in my shoulder came to life.

This is the reason why I was so amazed that I could exercise.  In the past with light exercise, it took only a twisted ankle, sore calf muscle, a little over-exertion, and the pain would flatten me for weeks.  Unfortunately, I have discovered now that extreme exercise during a fibro attack may not be the best way to go.  My muscles went from bouncing back and feeling good to becoming lead weights in my arms, legs, shoulders… And then fatigue set in.  Taking a break from the exercise is helping, and in a couple days I’ll get cortisone shots in my hips to fend off the bursitis, which will allow me to start walking correctly again, which will ease the lower back and knee pain, and slowly the fibro pain will continue to ease up.  Until the next time a domino falls…

One thing that most all doctors agree on and that studies support is that fibromyalgia is a condition with a multitude of symptoms.  This has made fibro difficult to diagnose and near impossible to manage and definitely impossible to cure.  Doctors can chase symptoms for patients, but it’s an unending race.

There are times I’m very sure my body deliberately resists treatments because they may work for a while and then the effectiveness stops or some new issue arises to make up for the relief I felt.  It’s like taking meds.  For example, I could take penicillin without difficulty until I was about 21 years old.  Then I was taking it for an ear infection, and it had no effect.  My ear swelled shut and the drum popped.  After about a week of taking it, I broke out into a rash and it’s been on my allergy list ever since.  All the other times I took penicillin did not guarantee that I could take it the rest of my life.

So with the multifaceted nature of fibromyalgia and the potential resistance of the body to treatments, are there any other options for treatment or management?  I’ve often wondered what would happen if fibromyalgia was dissected by symptom.  For example, sleep disorder is one of the common characteristics of fibromyalgia.  Sleep disorder causes other problems that contribute to fibromyalgia symptoms, including structural changes that seem to mirror the damage that chronic pain has on the brain, in the insular cortices.  See Park et al in the library.  I only could get the abstract, but they discuss “abnormal autonomic, affective, sensorimotor, and cognitive control networks” in patients with obstructive sleep apnea.  The study by Park et al was not centered on fibromyalgia or chronic pain at all, but the coincidence of similar damage to the same structures in the brain between OSA and fibro seems too close to ignore.

Unfortunately, I am case in proof that curing sleep apnea will not cure fibro.  But if you have one patient with several different problems all bundled together – does that bundle of issues (potentially different in each patient) “create” fibromyalgia by altering the structure of the brain and the pain network when the body becomes overwhelmed with sensation?  Does that bundle “teach” the body to feel too much?  If that is the case, combining treating individual symptoms (like apnea) immediately and doing genetic testing (yes refer to library again, several articles on genetics of fibromyalgia) to determine the risk of developing fibromyalgia could be a potential prevention method instead of waiting for the brain to remodel.  Maybe?  The trick may be to stop being stumped by trying to characterize fibromyalgia by the similarities between patients and to look at the myriad of symptoms as a marker for fibromyalgia potential.  Maybe.

The fibro attack that started a few weeks ago is in full force.  It’s difficult to know for sure how much longer I have to go before things settle down, but I thought I’d record a few observations.

1.  Last night was the first night I missed Nanos for other than a blizzard.  I’m holding off for a little because the line between hurting and injuring is blurring.  My muscles aren’t bouncing back like they were, aches are lingering longer, hurting worse, and swelling is at a maximum in my joints.
2. The primary pain is in my hips, legs, and lower back (walking has become more than a challenge).  The one thing that I have been able to do for pain that works on a consistent basis is getting cortisone shots in my hips.  That eases up the bursitis pain, which is quite strong right now, and remarkably also helps the lower back and legs, even though it’s not supposed to.  I’m going to lay low for a week – next week I’ll get the shots – and then I’ll need to let the injections heal for at least a week or more.  Then I’ll be good through the summer at least.  Hopefully with continued muscle strengthening, I will not need the shots as often.
3. My hands are a mess.  One of the first symptoms I had as a teenager was sore and swollen hands.  I’ve been checked multiple times for arthritis, and I don’t have it.  I can’t imagine what it would feel like to have arthritis in the hands.  My middle flip-em-the-bird finger on my right hand doesn’t completely bend because of swelling, and even the topmost finger joints are sore to the touch.  That’s the finger joint most people aren’t even aware of.  Typing is a challenge at the moment.
4. Headaches are daily.  These are not the same headaches as I was having in the other office from tobacco residue.  These are coming from my eyes, which are wearing out halfway through the day.  Fatigue usually brings that on.  (I have no lung or throat discomfort in the new office – such a relief.)
5. Sleep is disrupted with pain in my legs and hips.  I am having regular dreams about not being able to walk because of pain.  Last night I was trying to get treatment for it, but was turned away… twice.  And then I woke up.  The vicious circle comes into play here.  Disrupted sleep is a bit disastrous for pain management for multiple reasons.

On the basic pain scale, white noise pain (low level chronic) is at about a 7.  Sharp shooting pains (now both at rest and in movement) are a solid 9.  On the RELENTLESSNESS scale, I’ve topped it at a 10 for the chronic pain and a 7 for the acute pain.  There is no moment when I don’t feel something, pain or discomfort or fatigue.  It’s like a fog of sensation.  Noises are louder, lights are brighter.  Concentration is at a minimum.

I’m working on a page for the Chicken and the Egg section regarding fibromyalgia and the brain.  Keep an eye open for that….

I may need to give up this quest.  Now I’m discovering research that indicates that people with fibromyalgia are really experiencing premature aging of the brain.  Those gray matter bits that are dwindling as pain lingers do usually dwindle as we age anyway.  It’s just that us fibro folks are dwindling at a rate of 9.5% faster than “normal” folks (see Kuchinad in library).  So when I’ve said I feel 80 years old and I’m worried about how I’m going to feel when I’m actually 80 years old, I may be on to something.

Russell and Larson (see library) give a different definition of fibromyalgia: “a disorder of premature neurologic aging.”  In addition, Hassett et al (see library) also discuss premature aging in fibromyalgia, but not in terms of just the brain, but earlier onset of age-related diseases in general, earlier cognitive dysfunction, earlier “physical decline,” and yes, earlier death.  Once a doctor looked at my chart and commented that I was sort of ahead of the game.  I went through premature menopause (but I was happy about that, actually), and I have paroxysmal atrial fibrillation (a given for older people), arthritis, bursitis, and severe obstructive sleep apnea.  Good thing I’m pretty immature to make up for my aged body.

I still have to find what links all this together.  We have chemical imbalances, mitochondrial changes, premature aging and structural changes of the brain which affect the central nervous system, inadequate thyroid regulation, infection/virus, and I’m probably forgetting some.  Is fibromyalgia just like a set of dominoes?  Does one of these set the rest off?  Is it a perfect storm where several of these brew together to create fibromyalgia?

One of my questions about chronic pain has always centered on what happens to the body when it is subjected to chronic pain over a long duration of time.  In other words, do baby pains grow up into monster pains at some point?  Is there a point of no return?  Is there a possibility of early intervention that may prevent the monster from rearing its ugly head?

Looking at studies regarding actual physical changes that occur in the brain with long-term chronic pain, things start leaning toward hopeless for pain veterans.  I may not have this completely right, but here goes:

1.  There is a decrease in gray matter, but not in overall gray matter.  I’m not sure how that works.  It sounds almost like other bits of the brain make up for the bits that have deteriorated so the overall volume stays constant?
2. There isn’t a definite link between the decrease in gray matter and an association with pain duration, depression, etc.  However, there is a link to pain sensitivity.
3. The thalamus is “deactivated” as is the “brain’s pain-inhibitory network” (and other areas).  So there is more of a perception of pain.
4. I’ve read a couple times too that there is more of an anticipation of pain due to these changes.  This is not a matter of the patient wincing and saying ouch before anything happens.  This is the brain reacting and the reaction being detected by functional MRI.
5. There is a greater difference in patients depending on how long they have had chronic pain.  It gets worse as time goes on.

There are a lot more articles to read and I don’t know enough about brain and brain damage to understand the implications of these kinds of change, but it seems safe to say that the longer pain goes untreated, the worse it gets, the greater the physiological changes.

Thinking in terms of cause and effect, it would be possibly be safe to say that pain comes first, then brain damage.  So if deactivation of core parts of the brain are the consequence of long-term chronic pain, then we still don’t have a clue about the underlying cause of fibromyalgia….

Keeping with the theory of inadequate thyroid hormone regulation for a little.  I found another couple articles by Dr. John Lowe, who seems to be one of the main proponents for this theory.  He’s pretty unequivocal: “…the main underlying cause of fibromyalgia. That cause is too little thyroid hormone regulation of patients’ bodies. The deficient thyroid hormone regulation results from two conditions. First is an undiagnosed or undertreated deficiency of thyroid hormone. Second is the resistance of patients’ tissues to thyroid hormone. ‘Resistance’ means that patients’ tissues need higher than ‘normal’ amounts of thyroid hormone to maintain normal metabolism” (see library).

He cites research that indicates thyroid treatment not only helps but essentially cures fibro patients, so that they are no longer classified as having fibromyalgia.  While many of the articles associated with this theory are from around 2006, there are newer articles making this assertion, so far up to 2013.  I haven’t been able to confirm that Dr. Lowe is still the Director of Research for the Fibromyalgia Research Foundation, but when he announced these findings, he was.  He has not kept his research a secret.  It’s out there, and I have not found research refuting his ideas, but the search is young yet.

So here’s my problem:  This is a reasonable hypothesis that has been tested with clinical studies, fibro patients have been treated with replacement thyroid, and even with a 5-year followup on at least one study, there have been significantly positive results, and the results have been reported in the literature, not just news sources.  Why isn’t it one of the first roads for possible treatment?  Why doesn’t it top the guidelines for possible treatments?  Why does research seem to veer away instead of trying to confirm or refute?  Is this too simplistic a solution?

An article in the Washington Post a couple years ago (see library, Mountjoy) reports on studies from two different groups, one in the UK and one in the US, about the relationship between fibromyalgia and thyroid, coming up with kind of a different definition of fibromyalgia:  patients who have all the symptoms of hypothyroidism with normal levels of thyroid on TSH tests have fibro.  Essentially, they are saying that people who have fibromyalgia symptoms (which usually mirror low thyroid symptoms), should be treated with thyroid replacement therapy even if their thyroid levels are normal.  Fibromyalgia is caused by “inadequate thyroid hormone regulation,” apparently.

While the Washington Post article is from 2014, it looks like Dr. John Lowe’s research (Fibromyalgia Research Institute in the UK) has been ongoing since the late 1990s.  The other research the article cites comes from Dr. Elizabeth Vliet from All Saints Hospital in Fort Worth, TX.  Dr. Vliet has written several books related to this topic and some articles, most from around the turn of the century (although I need to look further).

This theory is one I admit I’m partial to, but it does raise a few questions.  First, what is the root cause for inadequate thyroid hormone regulation?  Is it possible that it’s more than thyroid that creates the fibromyalgia storm?  Could different hormones (and the inadequate regulation thereof) be the cause for different symptoms, especially since there has been plenty of evidence that there are multiple chemicals/hormones, etc, that are deficient in fibro patients?  I’ll read a bit more of Dr. Lowe’s research and find more about Dr. Vliet’s and see what I can figure out.