Pressure points are universal.  Everyone has pressure points.  Ask the martial arts dude down the street.  Any martial arts dude worth his or her while will explain how to take an opponent down with his or her little finger.  I’ve always wondered then why pressure points have been a sign of fibromyalgia.  Something I have to look into.  In the meantime, I can say, yes it’s true, of the specified pressure points to indicate fibromyalgia, I have the requisite amount, and there is a difference between when a pressure point really hurts big time or when it just kinda hurts.  Imagine (or try) this.  You have a large bruise on your leg.  Big, black and green, the kind that will turn yellow before it goes away.  Your other leg is clear of bruises.  Press the clear leg with your pointer finger hard, hard enough it hurts.  Then press the center of the bruise hard, then harder.  The point when it hurts intolerably is how a pressure point for a person with fibro feels.  But there’s more.  Imagine the peak of that pain continuing for several minutes after you stop pressing on it.  In fact, you can still feel it hours later if you hit a really good one.  Now imagine that feeling when you press on an unbruised part of your body.

Since people with fibro can sense pain where other people can’t, it makes sense to me that what should be fairly painless is quite painful, but it doesn’t mean that the pain is not real.  It is very real, and the fact that some points that should hurt don’t hurt, to me, is proof that this is very real pain.

By the way, cats are excellent pressure point detectors.

 

I found an article from Brain Sciences called “Exercise Strengthens Central Nervous System Modulation of Pain in Fibromyalgia.”  I haven’t read it yet.  That’s today’s chore, but here’s what I think…  Exercise can both relieve and exacerbate fibromyalgia pain.  Some exercises, like pool exercises, feel tremendous when I am doing them, but afterwards I get knocked silly, flat on my butt with an extreme increase in the “white noise,” low level, chronic pain, and fatigue spikes.  Walking reduces the “white noise” pain on the whole, but the sharp, acute pain increases.  Some days walking is very difficult, more difficult than it should be.  But without a doubt NO exercise exacerbates fibro pain many times over.  People with fibromyalgia have to keeping moving.  Absolutely.  Finding the right level of exercise is tricky, however.

Personally, I hate exercise.  It’s boring and it hurts.  I’ve never been athletic (with the exception of being in a Big 10 Marching Band in high school).  I’ve always felt awkward and weak, and the idea of exercising in front of people has always been horrifying.  So I joined a bootcamp this last winter.  I’m doing extreme exercises, wanting to die or throw up or pass out most nights, working out in front of a group of people and trainers, doing things I’ve never done or haven’t done in years (like burpees), and for the first time ever, I have had a noticeable difference in the way I feel.  It’s the exact opposite of pretty much anything a doctor has ever told me to do, it is definitely not geared toward people with chronic pain, and it’s working.  Doesn’t make sense, so I’m going to figure out why it is.

“Adaptive Copers”

I just discovered a new name: Adaptive Copers (see Fischer et al in library).  These are what doctors call people with fibromyalgia who essentially don’t succumb to the disease.  They have a lower pain intensity, they function in life, and they are not as affected by mental disorders (e.g. major depression).  I have decided to align myself to this select group of patients.

I’ve always said, I have no choice.  I can’t stay home, collect disability, not get out of bed in the morning.  I am my own support system at home.  I have to bring home a paycheck – who else is going to pay for the kitty litter?

The Relentlessness Scale

Of all the questions patients are asked in the doctor’s office, one of the most difficult is “On a scale of 1 to 10…” and the nurse or clinical assistant points to a series of not-so smiley faces, and you’re expected to rate your pain.  This is problematic.  First of all, and this is for any patient, there is no common point of reference for that particular question.  If a nurse were to ask me, “With childbirth and kidney stone as 10, rate your pain,” I could answer because in my world, those are the two worst pains I have had.  Secondly, for fibromyalgia patients, there are a minimum of two different types of pain.  I always give two answers.  “Acute” pain (usually occurring with movement, sharp, sudden, and short in duration) can range from 5 to 9.  But sitting still and answering questions, it would possibly be zero.  “Chronic” pain (what I refer to as white noise pain, a constant low-level pain with or without movement) can range from 3 to 6.

More important than levels of pain, however, is the level of relentlessness of the pain.  Acute pain comes and goes, but chronic or white noise pain is relentless.  It is this relentlessness that is most important to me.  It is relentlessness that causes depression and fatigue, not the amount of pain.  Low-level, chronic pain would have a relentlessness score of 9 or 10.  Sharp, quick acute pain would have a relentlessness score of 2 or 3.  When the lower levels of white noise pain are reduced, my energy levels go up, my brain clears, and I can think and function again.  The acute pain is just a distraction.  Chronic pain has a subconscious element – I am not always aware of the low-level pain until it takes a break, and then I am conscious of it by its absence.

My question then is: Would it be helpful, in terms of looking for causes of and possibly treatments for fibromyalgia, to look at these two completely different types of pains separately?  Do they have different triggers or mechanisms?  Would they react to different treatments?

Blaming Mom and Dad

I just read an article about the possible genetic link to fibromyalgia (and other chronic pain syndromes).  This is a slightly older article (Buskila et al, see library), so it will be interesting to find more up-to-date information.  I do NOT assert that I understood all of the 5-HTTLPR and T102C and polymorphisms and everything they go on about….

There does seem to be a genetic predisposition to chronic pain in families.  Most of the study subjects come from families with multiple cases of chronic pain, either diagnosed or undiagnosed.  Interestingly, this includes not just fibromyalgia, but chronic fatigue syndrome, irritable bowel syndrome, and gulf war syndrome (or more generally post-traumatic disorder).  In other words, there seems to be a genetic predisposition that dictates how our bodies will handle physical and emotional stress.

This makes perfect sense to me.  I’m not the only member of my family with a chronic pain syndrome.  I’m just the loudest.

However, simple genetic predisposition is not a guarantee of being affected by these chronic pain disorders.  It seems like the genes may be the bullet in the chronic pain gun, but environmental factors may be the firing mechanism, which may explain better why families have multiple cases of chronic pain.  In other words, people with the genes need a trigger.  My question becomes what are these external factors that can trigger fibromyalgia?  Exposure to toxic environments or chemicals?  Are people with these genes more susceptible to toxicity?  Can the trigger be emotional or psychological?  Extreme stress?  Yes…?

 

 

Last night I started my second week of a 32 week commitment to be a Silver Nano.  I don’t know why it’s called that – it’s Crossfit for over 40s.  We work our butts off twice a week. Last night was rowing, lifting weights, sit-ups, and more…  I left with noodle legs, noodle arms, and my lungs had that well-used, tight, I-did-my-cardio feeling.  It was great.  This morning, I was stiff and sore and tired, and it felt so good.  Hot shower, a stretch, a few pops and cracks, and a nap on the bus and I was as good as new.

It’s a conundrum.  Why hasn’t extreme exercise, first with a 6-week bootcamp and then with a Crossfit program, knocked me on my butt?  Why am I not only still standing but feeling rejuvenated both physically and mentally, even as my body aches?  Why have the actual fibromyalgia pains decreased with extreme exercise?  I’m doing the opposite of what doctors have told me and what seems to be recommended generally, and I didn’t work up to it.  I started extreme exercise at my lowest point physically.

In the Okifuji article (see library), he says that exercises that generally help to reduce symptoms are “submaximal aerobic exercise, along with strengthening and stretching elements.”  I’m doing hypermaximal aerobic exercise and intense strengthening with minimal stretching.  I’ve done the submaximal aerobic exercises, like walking, and gentle stretching.  Pool exercises feel great while I do them, but the fibro pain is intense afterwards.  None of the exercises I’ve done have ever actually reduced the fibro pain consistently until these extreme exercise programs.

I’ve been careful of my knees and back – osteoarthritis – so I don’t injure myself.  I am careful about landing jumps, about making sure my back is straight and my abdomen strong when I’m lifting.  I’m a little slow, but successful.

Bottom line question for me: Why do the aches and pains of an extreme exercise fade within 24 hours?  Why don’t aches and pains from submaximal exercises fade like that?  Why does extreme exercise reduce the random fibromyalgia pain?

In case you’re wondering, I love aching from exercise.  I wince when I raise my arm because my shoulder hurts, and I know WHY my shoulder hurts.  It’s very satisfying.

The Okifuji article (see library) on management of fibromyalgia raised a few questions (besides that ever elusive “will there ever be a cure?” question):

Maybe the more pertinent question that is raised by looking at fibro management strategies is: “How can there ever be a cure?”  You put 10 fibro patients in a room and you will have 10 different symptom arrays, 10 different mechanical triggers, 10 different methods of coping with the syndrome… Put the same 10 fibro patients in a room six months later and you will have an entirely new set of symptoms, triggers, coping methods…

You can imagine how frustrating a constantly changing patient landscape can be for a physician.  Does the physician chase the symptoms?  Imagine now being the patient who has to relearn every few months how to cope, how to avoid exacerbation.  What worked six months ago may not work now.  If just one symptom has worsened in that time period it could trigger an avalanche of other symptoms, and we have to start learning once more.

What is needed is a completely unique way to treat fibromyalgia patients on a case-by-case basis, recognizing that each patient is unique and that what works for one may or may not work for another.  The treatment algorithm has to be fluid and changing.  Gosh, sounds like ideal healthcare for everyone, doesn’t it?  But how can a healthcare system that is manipulated and ruled by tyrant insurance companies, whose bottom line is only the bottom line not the patient’s well-being, ever rise to this type of challenge when disease is considered a drain on the healthcare system?

Thinking…thinking…