In an article about catechol-O-methyl-transferase Val158met polymorphism and fibromyalgia (I typed that with a straight face, by the way), I came across something I never thought of before.  Just like people with chronic pain syndromes, there are people with reduced pain sensitivity.  I don’t mean people who have had strokes or other events that affect their sense of touch.  There is actually a very rare disease called CIPA (Congenital Insensitivity to Pain with Anhidrosis), which is a nervous system disorder where the patient has significantly reduced sensitivity (or no sensitivity) to pain, including temperature or even feeling the need to go to the bathroom, although they can feel pressure.  The “anhidrosis” part means they don’t sweat.

Which is worse, do you suppose?  Feeling too much or not feeling anything at all?  I vote for not feeling anything at all being worse – much worse.  Setting aside the embarrassment of not knowing when to zip into the restroom, imagine everything people with CIPA miss.  The joy of a good belly scratch, the ache after a good workout, cuddling with a kitten or a newborn, feeling a gust of wind on your face, the sensation of floating in a perfectly calm pool, a hot shower after coming in from the cold, hugs, kisses….  It puts fibromyalgia into perspective.  I’ll take the ache.  Don’t get me wrong, I’ll complain about it, but if I had the choice, I’ll take the ache.

Wait… Blandine, is that you?

For as long as I can remember, when I’ve seen someone with an injury, especially a big injury, for example when Sean was 3 and took a header in the tub and I couldn’t grab him in time and he split his chin open, I have a physical reaction to it.  When Sean got the stitches in his chin, I was the one sitting on a chair in the corner with my head between my knees.  This is an extreme example, because I think every mother feels her child’s pain to some degree, and when the injury happens on the mother’s watch, it’s all the more painful.  However, when I see someone with a pronounced limp or their arm in a sling or wincing, etc, I can at times, not always, feel pain in my leg, arm, hand, whatever.  It’s reason number 72 why I could never be a doctor or nurse.  That and the whole sit down with my head between my knees thing.

I always figured it was a sign of hypersensitivity or neurosis, and it could well be. However, I found a study by Rahm et al (see library – it’s caught up) that actually looks at this phenomenon in people with fibromyalgia (I’m not alone!).  They take it to a different level, however, and look at pain processing in first and second person.  Patients and a control group were given pictures of people in painful situations, such as a door swinging on a toe, and then told to think of themselves in that painful situation (first person) and then to think of someone else (who they don’t know – second person) in that situation.  And their brains were scanned and the blood oxygen levels in the brain were measured while they did this exercise.  This goes back to the regions of the brain that are affected by fibromyalgia (or chronic pain, I think), and the researchers were looking for confirmation that the brain was linked to the disturbed pain processing that people with fibromyalgia experience.

Their results, which I hope I’m representing okay, indicate that the responses of patients to visual stimuli – along the pain processing network in the brain – were stronger in terms of the blood oxygen levels.  In other words there was more of a stimulation.  This, according to the authors, provides evidence for “sensitization of central nervous pain processing” in patients with fibromyalgia.  In other words, when I see someone stub their toe while taking a corner too quickly and I start to limp, I’m not crazy.  My brain just jumps to attention and salutes.

I am fully aware of how ludicrous a pinky crisis is.  Fully and painfully aware.  Now that the crisis has been averted, I can sit back and explain from the point of view of fibromyalgia… hopefully.

First of all, any pain that disrupts sleep is problematic.  I was going to say “dangerous” but I’m trying to not sound dramatic.  One of the absolute necessities for people with fibromyalgia is sleep, deep restorative sleep.  It’s not an easy thing to achieve and probably the absolute easiest thing to disrupt.  When I had a sleep study done, I found out that I never once went into REM sleep, never went beyond a light sleep, until they slapped a C-PAP machine on my face, and then they couldn’t wake me up.  Unfortunately, like everything else, my body has grown accustomed to the C-PAP and that instant restorative sleep is not a guarantee anymore.  I guard it like the Hopi Diamond.

Second, severe pain in any part of the body is a trigger.  Throughout the day on Tuesday when the crisis came to a head, the pain was traveling up my hand to my wrist, elbow, shoulder, and neck.  There was nothing wrong with my wrist, elbow, shoulder, and neck except the stress of the pain in my hand.  I had to sit back, breathe, and remember where the pain really was to try to avoid messing up muscles by constantly clenching or holding my hand/arm in a strange position.

Third, new pains are too often something I have to get used to.  There is a strong psychological dread with new pain.  Is this another “permanent” untreatable pain?  Am I going to be sent home with a wait-and-see attitude yet again?  Can thinking like this make the pain worse?  Probably.  I admit to walking into the doctor’s office dreading that there’s-nothing-we-can-do-about-this-take-ibuprofen-oh-it-gives-you-stomach-cramps-take-naproxin lecture.

I had a doctor once tell me that people with fibromyalgia were like “saints” to work with.  At the time, he was poking a red-hot cauterizer into my tear ducts to try to ease my dry eye problems.  Apparently we are very patient as a group.  I explained to him, that no, we’re not saints.  It’s just that it is very easy to take pain that we know is going to go away. Pain that doesn’t go away… that’s another story.  Since those pains can be pretty abundant, it becomes more and more difficult to accept more.  My hands hurt very close to 24/7, but not like that.  Not so I can’t function.  That’s my fear – to stop being able to function.  If my pinky pain hadn’t eased up (no, it’s not gone completely), I would have not been able to continue working.  Yes, it was that bad.  Yes, I dread the possibility of not being able to work, I’m afraid of it.  I don’t have a second income to fall back on. I have to work, pain or no.

That’s why the pinky pain was such a problem.  Yes, it’s a little pinky, the smallest, most insignificant finger on my hand, but so very important.  By the way, I had to stop using the gel that was working so well.  It was burning the skin on my hand.  I still have it and will slather it on as needed, but an end-all, be-all of joint pain, nope, it’s not.  Just once, wouldn’t it be nice if just one thing on my body would cooperate?

So yesterday I was practically immobilized by a sore pinky.  To be precise, it was the joint where the pinky met the hand.  I was rating that pain at a 10, relentless at a 10.  It was the most extreme joint pain I have ever had, and if that is the way rheumatic arthritis feels, my hats off to anyone with that crap.  Notice I’m speaking in past tense.  No, it’s not gone. But it’s better.  I went to the doctor.  Yup, I called them up and said I have to see someone today, my pinky hurts worse than all hell fire.  They got me in.

Now to put this all in perspective.  My hand didn’t look bad.  It was a bit swollen at that joint, very minor redness, probably just from the minor swelling.  When I put it next to my left hand, yes, I could see a pronounced difference, but it only looked bad in comparison.  I know I seemed very crazy walking in there declaring my little pinky at a 10 in pain.  The nurse looked at me with her doubtful eyebrows, at which I declared, “Hey, I’ve had a kidney stone and ptosin-induced childbirth.  Those are my 10 ratings, and this is just as bad only in my hand.”  Her eyebrows settled a little back to normal, obviously knowing I wasn’t going to be shaken from my 10 declaration.

The doctor poked my poor swollen joint a few times, explained how since there was no injury she really couldn’t do any imaging.  She had the doubtful eyebrows too.  I considered underscoring the direness of my pinky situation by crying or throwing up, but I’ve trained myself for the last 40 years to not express or show pain except when I’m by myself or among close family members who don’t mind when I moan and groan so much.  I’m like my collie who limped on three legs for a few days and then pranced around on all fours like a puppy at the vet’s office when I took her in.  Instead of crying or throwing up, I explained very clearly and concisely that my hand HURT.  That’s it and that’s all.

“Could be gout,” the doctor said doubtfully, “But that would be really weird.”  Tell me about it, I thought – I’m not an old English gentleman with an English manor and serfs, and only old Englishmen, usually with a title of some sort, get gout.  Right?

Game plan – treat this conservatively.  Naproxin and an analgesic gel.  That’s what she would have given the 41st Earl of Chechistershire for his gout.  It will be better probably by the end of next week.  I visualized myself sawing my hand off with a rusty hacksaw by the next morning.  I reminded her that I’m a secretary.  “So you do some typing…” Her voice trailed off as if I needed to remind her that I needed my right hand to type.  I fluttered my fingers in air-typing and she nodded.  “Yeah, it hurts.”  Damn right it hurts!  I didn’t say that out loud.

We were at an impasse.  She was insisting on being conservative, I was insisting on amputation.  I would have settled for a drug-induced coma until it went away, but no.  She won.  I got back to Winona in time to pick up the analgesic gel and a bottle of generic naproxin.  By the way, if you get gout in your pinky joint, don’t drive a manual car.  It’s very complicated.

The gel helped right away, so I got a good night’s sleep.  Today, I can touch my hand without looking for the spike that went right through.  The wind can blow on my hand without making me wince.  I can almost make a fist and practically straighten it.  Yes, there are still issues, but nothing I can’t handle.  So I’m thinking, hey fibromyalgia analgesic cream!  If it can solve my pinky problems, can’t I just take a bath in the stuff?  No really!  It’s a big tube….

My right pinky has decided it hates me.  I can’t straighten it or use it to function.  Typing is very difficult, driving was almost impossible, even showering and getting dressed this morning was a challenge.  There is no injury.  I didn’t hit it with a hammer.  There is no infection, no romantic rose thorn pricks.  No one stepped on it.  I didn’t slam it into a wall accidentally.  Absolutely nothing wrong with it.  The pain scale is at a 10 when I move it, 9 when I don’t.  On the relentlessness scale it’s at a 10.  It woke me up at 3:30 this morning and wouldn’t let me get back to sleep.  There is some swelling, nothing alarming, no discoloration.  Like I said, no injury.  So what’s the problem?  I have no idea, and I’m reluctant to walk into an ER and say, hello, my little finger is sore.

The pain started at the end of last week, just a twinge here and there, and has built since then.  Hopefully it’s on the way down again, and I’ll be able to sleep tonight.  If experience says anything, sleep will help reduce the pain.

There’s really only one reason to contact a doctor about my little finger.  I’m hitting that magic age when some of these random things could actually be age-related, and there could actually be some method of pain control or treatment.  I just read an article that said something like fibromyalgia was the most common cause of chronic pain in women between the ages of 18 and 55.  I’m 54.  I take that to mean one of two things:  fibromyalgia goes away with aging, or fibromyalgia morphs into other treatable conditions with age.  Either would be just fine.  Of course the third option is the rest of the population catches up to the chronic pain statistics, and age-related chronic pain outstrips us with fibromyalgia.  No one wins at that point.

I’ll have to look further into that.  In the meantime, I need to get through the workday typing away with an uncooperative finger that I’m ready to just disconnect completely, and then I have to go exercise with it.  I wonder if there will be pushups tonight.  Could be a big problem.  But we’ll see what happens and take it a moment at a time.

This is my 100th post!  I’m not sure how helpful all this has been to anyone except me, but thank you to everyone who has been reading.  I thought this might be a good time to recap a little bit.  My initial goal was to simply to figure out why and how my body reacts to different things, foods, exercises, stress, etc, and how to manage fibromyalgia, since it seems that a cure is not forthcoming.  As I’ve gotten older, the pain has increased, mobility has decreased, and my brain isn’t getting any nimbler.  However, reading about the studies and theories about fibromyalgia is most definitely sliding headfirst down the rabbit hole, and I’ve had a change of mind about some aspects of fibro.

1. I went into this thinking that fibro was a central nervous system disorder.  I always joked about having brain damage but always thought in terms of the central nervous system.  I don’t think that’s the case anymore.  I think the central nervous system is affected and helps perpetuate the symptoms, but I’m not convinced that the origins are in the central nervous system.
2. Joking about brain damage isn’t so far off, which is a scary thought. The brain is directly affected by fibromyalgia in terms of gray matter at the very least.  There are, however, a dozen parts of the brain that are affected by chronic pain, making brain damage at the very least a result of firbomyalgia.  Again, however, I’m not convinced that the origins are in the brain.  I think brain changes are consequences of prolonged pain.
3. I went into this getting annoyed by people saying it was a psychological problem, as if I could will myself to feel better.  That still annoys me – I admit it.  However, psychology is more important than I acknowledged for two reasons:
   • First, while you may not will yourself to get rid of fibromyalgia, you can will yourself to move even when you don’t feel well, and moving is key to fibromyalgia.
   • Second, I’m finding physiological changes that happen to the body due to stress (either physical or psychological).   I never really thought of the possibility of physiological changes happening with psychological stress.  But they do happen, and fibro, while not a “fake” problem can possibly be a real physiological issue that arises from psychological issues.  In our stressed out world and lifestyle, it is easy to connect the rise of fibro to the stresses we endure in our everyday life (psychological stress, sensory stresses, etc – the world is very different now).
4. While I’ve always suspected a genetic influence on the development of fibro, I’m more convinced that there is something happening, not only on the genetic level but also on a general cellular level.  Are they separate?  I don’t know.  I don’t understand genetics well enough to go into this and not prove my interminable ignorance.  The difference that I see, (here I go proving it) however, is that genetics could be the origin of fibromyalgia while the cellular changes seen in patients could be a consequence.  Certain people could be genetically predisposed to developing fibro if exposed to the proper stress (there’s that word again), a physical injury, a trauma, etc.
5. While I always thought of fibro as being “systemic” – affecting multiple systems and the entire body, I never realized how the body reacts like dominoes.  Tip one the wrong way and everything cascades out of control.  Fibro is looking more like a disease of imbalance.  But instead of being Weebles (wobble but they don’t fall over), we’re dominoes.  We hit the table after pushing the next problem along and lay flat on our faces when we get out of balance.

My favorite ideas have to do with mast cells (my new pet), thyroid insufficiency, and dopamine.  While thyroid and dopamine are related in some ways, mast cells don’t seem to connect to them.  Unfortunately, I’m not really convinced that finding an origin to fibromyalgia will lead to a cure as such.  It may, however, lead to a way to identify people who are at risk of developing it, and possibly ways to prevent it.

Most of all, looking at management options is still really important.  So often I read about people who insist on one thing that helps above everything.  Do this and you’ll feel better.  I’m absolutely convinced that’s the wrong approach.  Again, balance is the key.  It’s going to take multiple balancing points to figure out how to feel better and continue to stay better.  People with fibro are a breed alone in that way if for no other reason.  Our management options are as fluctuating as the disease itself.

Disclaimer: As always, I don’t know what the heck I’m talking about.  Take nothing seriously.

If you look long enough you find surprises, sometimes pleasant ones.  I found another article about the relationship between mast cells and fibromyalgia, and it’s from 2016!  See Tsilioni et al.  Instead of trying to summarize on a blog post, I’ll create a new page. However, to sum up:

• Mast cells are located in the neurons in the skin and in the diencephalon (the part of the brain which contains the epithalamus, thalamus, hypothalamus, and the ventral thalamus – which are key in the exploration of the origins of fibromyalgia)
• Environmental, immune, or infectious triggers stimulate mast cells
• This then stimulates the secretion of
  • Heparin
  • Histamine
  • Serotonin
  • Proteases (tryptase)
  • Tumor necrosis factor (a cytokine)
  • De novo synthesized leukotrienes
  • Prostaglandines (PG2 in particular)
  • Cytokines IL-1, IL-6, IL-8)
• Histamine, PGD2, IL-6, tumor necrosis factor, and tryptase stimulates microglia (cells that eat up bad things) and corticotrophin-releasing hormone (CRH)
• The stimulation of both PGD2 and CRH together can be the cause of both neuroinflammation and mental disorders.

There are more connections; substance P ties in as well as other cytokines and neuropeptides.  There are also connections to the blood-brain barrier that connect back to mast cells and CRH.

According to Tsilion et al:  “Preventing the secretion of CRH, SP, and/or HK-1, and their ability to stimulate release of IL-6 and TNF from MCs, microglia, or other imune cells, may constitute a potential new treatment approach for FMS.”  Lots of abbreviations there.  In short, stop mast cells from releasing the chemicals that stimulate other chemicals that stimulate fibromyalgia symptoms.

This is promising.  A lot of the connections are there – not all of them, but a lot of them.  It’s definitely worth looking further.

This whole fibromyalgia project started when I discovered that extreme exercise was remarkably good for me.  Bootcamp was the first time in literally decades that I had run, jumped, and generally moved beyond a brisk walk.  I was sore and tired, but my body was snapping back.  Even being tired, my brain seemed to be a little more active too.  What was happening to apparently reduce fibromyalgia symptoms when light or moderate exercise didn’t have an effect or make symptoms worse?  I still haven’t answered that question.

After bootcamp, I signed up for a Crossfit class for people over 40, Silver Nanos, a great program with two parts, strengthening and cardio.  The first part of the workout usually focuses on weight training with barbells, etc.  The second part of the workout usually focuses more on cardio but often with a weight element.  At first things were going pretty well, but it wasn’t long before things started sliding.  At first muscle pain didn’t snap back as quickly. Then my hips became unbearable, and I got cortisone shots to ease that up. The shots didn’t work, and pretty soon my lower back was joining in the chorus of “oh no you don’t…”  I cut back on the exercise, going once a week instead of twice. I immediately started losing cardiac stamina, and shortness of breath was knocking me down.  Then the psychological factors kicked in, anxiety and panic, and I had gotten to the point that I just couldn’t walk in the door.

Last week I started a different program at Crossfit, STEAM, which is a cardio workout.  The workout is more sustained at 25 or 30 minutes instead of broken up.  It’s really tough.  The last one included 20 walking lunges as part of the AMRAP25.  In total, I did 75 lunges.  That was two days ago.

Yesterday I went to work and out to dinner and a movie, got home late, exhausted, sore, but it was in general a good day.  Today is Saturday, and I can’t move.  Every thigh muscle is screaming at me.  Sitting, standing, walking, it’s torture.  However – and this is a big however – this is the very satisfying sore muscle pain that I had with bootcamp.  My back is yelling at me, but no more than before.

My theory is that a strictly cardio workout – vigorous, not light and well past moderate – is what fibro needs to either settle down or create enough regular “real” muscle pain to take the mind off the fibro pain.  Without knowing what I’m talking about, I think it involves what happens on a cellular level with fibromyalgia.  What, I don’t know.  I’ve read about the mitochondrial changes and the mast cell proliferation.  I know that a lot of the chemicals and hormones that people with fibro are short on react on a cellular level.  There is something that happens during cardio (aerobic) exercises that does not happen during strength training (anaerobic) exercises.  There must be some way to figure out exactly what the difference is – on a cellular level.  If so, then would there be a possibility of coming up with some answers about fibro management?  Or the origin of fibro?  I don’t know… still.

I’m still looking at mast cells. This is yet another intriguing possibility.  I found on line that mast cells are something that people on fibromyalgia blogs chatter pretty constantly about.  One woman claims that she went on a diet that eliminated all histamines (which are released by mast cells) and felt much better.  She figured she might be histamine intolerant rather than have fibromyalgia.  Histamine isn’t something I ever considered, especially since I overreact so badly to antihistamines.  However, keeping an open mind, if I wanted to eliminate histamine from my diet, there are two types of food to eliminate, foods that are high in histamine and foods that release histamine.  The list is long and eliminates almost my entire diet that I just put together.  There would be:

• No dried fruits, such as raisins, etc
• No citrus fruits, no bananas (although apples and watermelon are okay…huh)
• No aged cheese (all the good ones)
• No nuts (although “pure peanut butter” is okay, which gives me tummy cramps)
• No spinach
• No tomatoes
• No tuna (the only fish I actually like)

There are a bunch more that wouldn’t affect my diet as much as these (see http://www.mindbodygreen.com/0-11175/everything-you-need-to-know-about-histamine-intolerance.html).

So what it really boils down to is that eating for fibromyalgia is a lot like having fibromyalgia.  There are a lot of contradictory recommendations.  Do you eat to boost your system or eat to inhibit things like histamines?  You can’t really do both.  Maybe eliminating food from my diet completely and surviving on protein powder and supplements is the way to go.  An intravenous diet while I sleep at night?  That seems almost as rational.

Okay, after getting that out of my system, I’m going to stay the course with what I decided on before.  I’m going to eat to boost rather than eat to eliminate.  My theory is that boosting will help keep what needs to be eliminated under control.  At least I think that would be a better shot than eliminating to boost.  To me, that seems like a better bet to balance the imbalances (with the caveat that sugar and preservatives, etc, do need to be eliminated).  Crisis over.  I’ll revisit this as needed….