Loving the Turbo Puppies

After two whole yoga classes, I’m ready to make a prediction about the effects of Forrest yoga on chronic pain.

Prediction: This is going to help.  Specifically, it will help a great deal with mobility without hurting my back or exacerbating other joint pain.  I will have to be conscious of positions as I continue to be sure I use the right muscles to support myself.  I also will have to be mindful of pain that is indicating injury as opposed to pain that is simply using new muscles.  This is something I have been working on for several months with Crossfit, and I think it will transfer to yoga fairly easily.  I noticed yesterday after doing wrist and finger stretches (which felt very good), my hands swelled and have not gone down again.  My feet, however, are not swelling, so that’s a good thing.  I will continue with stretching despite swelling because the swelling is not indicating injury.  It’s just my body saying, “Does that feel good?  We’ll see what we can do about that.”  Yes, my body is my interminable enemy.  Anyway, since mobility is one of my biggest concerns, I’m very optimistic about this type of exercise.

There is also a psychological aspect that I’m not 100% sold on yet, but the meditation involved with deep breathing and becoming aware of your breaths, spreading your breaths through your body and directing it at specific areas of your body does create a mindfulness that is nothing but positive.  I need to look at deep breathing and fibro.  I know that it is highly recommended, but I’d like to know why.  What is happening in the body with deep breathing that helps chronic pain.  Is it simply oxygenating the blood?  This would make sense and also explain the benefits I had with extreme aerobic activity with Crossfit.

And Now for Something Completely Different…

I’ve never been athletic.  At best I was in a big 10 marching band in high school, which was very physical.  In the early ’70s I became enamored of gymnastics and gave that a whirl.  First time on the uneven parallel bars I face planted on the mat.  It didn’t hurt, but everyone around me was horrified.  Of course I took swimming lessons as a kid.  I made it through beginning lessons just fine.  In intermediate swimming, we had to swim across the pool.  I didn’t drown, I wasn’t going to drown.  I was just a little tired and paused and treaded water.  Before I could start swimming again, this massive lifeguard (probably a scrawny high school kid) whisked me out of the water.  I failed intermediate swimming.  I’m a world class floater, however.  Well that didn’t sound quite right…

So as an adult:  I can’t run, especially on uneven surfaces.  My knee gives out every time.  Walking is good – except most days when I take a solid walk, my hands and feet swell, and very often it knocks me on my butt.  Strolling is safe.  I can stroll.  Exercising in a pool is probably the best there is, but let’s face it, self-consciousness rears its ugly head, and I can’t swim laps because what little I learned of how to swim is out of my head.  I’d like to take an adult swimming class, and that may be one of my next experiments.  I’ve always done light stretching which keeps my joints moving but does little else in terms of symptoms.  And last winter I did the Crossfit bootcamp, which started all this, because the results in terms of fibro symptoms were amazing.

Unfortunately, going to the next step, Silver Nanos, was not great.  Even as I continued to exercise twice a week, both physically and mentally I started to slide.  The difference was in the type of exercises, I think.  While bootcamp was butt-kicking aerobic exercises, Nanos incorporated weight lifting, and there was less sustained aerobic exercises.  The solution was moving into SWEAT, a class that is much more like the original bootcamp.  I think this would be effective, but it’s later at night, and I just can’t handle getting up at 5:45 AM and getting home at 9:30 PM.  The days are too long, which I think actually works against the benefits of the class.  I’m stepping away from extreme exercise for now.  I’m absolutely convinced that at least for me, the punishing aerobic exercise – without the weightlifting strengthening exercises – is what I need.  I have to find a class that doesn’t give me 16 hour days.  BUT starting next week I’m going to try something completely different.

I got into a research study that is looking at Forrest yoga and chronic pain.  The focus is not on fibromyalgia specifically, and the person doing the study originally was looking at chronic back pain.  Either way, I’m in!  I have 8 weeks of free classes twice a week.  I don’t really know what Forrest yoga is except that the instructor will be putting us in poses and adjusting us.  There’s a lot of breathing.  I think if you compare Crossfit and Forrest yoga, you’ll find them on the opposite ends of the spectrum.  It’s worth a try and will keep me in an exercise program of some sort until after the holidays, when I may try another bootcamp.

One of the things that I’ve always noticed from day 1 is that what helps today, may not help in six months.  It’s like the body thinks of ways to fight off positive forces the same way it fights off germs.  Maybe one of the keys of fibromyalgia symptom management is constantly changing things up, keeping your body guessing.

No doubt, however, exercise helps manage fibromyalgia symptoms, but everyone is different.  Everyone has started at a different physical point when they develop fibromyalgia.  What is extreme exercise for some people is a walk in the park for others.  If fibro has a motto, that’s it: What helps some people may not help others.  Fingers crossed for Forrest yoga.

Genotypes and Phenotypes

An idea keeps bumping into the back of my head.  It’s like seeing the giant red pickup in my rearview mirror as it skidded side to side, tires smoking while the guy with the mohawk valiantly tried not to accordion me between it and the Chrysler sedan stopped in front of me.  I saw the truck coming, but it was out of my control, nothing I could do but brace brace brace.  I didn’t brace well enough, but in my defense I was in a Geo Metro at the time. I loved that car.  It wasn’t ever the same afterwards, what with becoming an accordion and all.  I’m sidetracking because this is a subject I have absolutely no frame of reference for, and the likelihood of being flat out wrong or worse – yes, there ARE such a thing as stupid questions – is at 99.968%.  I’ll give myself a 0.032% chance.  Plus I haven’t done a lot of reading, but the questions keep rearing their ugly heads in that rearview mirror…. okay enough.  Here goes.

The word genotype refers to our personal genomic sequences – what genes make up “us” or very specific genes that are part of that genetic makeup.

A phenotype refers to our actual characteristics, physical, psychological/behavioral, disease risks, etc.

http://pged.org/what-is-genotype-what-is-phenotype/ describes the difference – genotypes come from “nature” while phenotypes are from “nurture” or derive from the environment we live.

There is also the question of “heritable changes,” when phenotypes change but genotypes do not change.  Phenotypical changes alter the way cells read the genes.

I don’t know exactly what the consequences are when phenotypes undergo changes.  Yes, I need to read more.  However, since there is a pretty significant genetic connection between fibromyalgia and phenotypes, it seems like this is a possibility for a trigger.

Childhood trauma can physically change the physical pain processing pathways.  They don’t develop a chronic pain syndrome immediately.  It comes later, possibly because of an inherent genetic risk.  Do they grow into chronic pain or is there a triggering mechanism after that initial childhood trauma which initially sets up the possibility of developing a chronic pain syndrome?

Adults who have not suffered childhood trauma still develop fibromyalgia or other chronic pain syndromes.  Is it possible that there is a specific phenotype that undergoes a change – why? how? – which then changes the way cells read the genetic markers, and then the mitochondria convolutes and mast cells go awry and bam! chronic pain.  Heck if I know, but maybe this could pull together the two disparate groups – those with childhood trauma and those without.

More Psychophysiopathology

It may not be a real word, but I like it.  When looking at fibromyology, one thing becomes more and more clear: everything is intertwined, psychology, physiology, pathology, and more, I’m sure.  For the moment, I’d like to focus on these three.  I’ve been reading about the psychological aspects of fibro and am noticing that fibro shares problems with both depression (not surprising) and bipolar disorder.  As always, it does not mean that everyone with fibro is either depressed or bipolar, and not every depressed or bipolar patient also has fibro.  However, they have some physiological commonalities.

For example, in both fibromyalgia and bipolar disorder there are abnormalities in the hypothalamic-pituitary-adrenal axis, problems with oxidative and nitrosative stress, and mitochondrial dysfunction (see Bortolato et al in library).  Tryptophan (and thus serotonin and melatonin) is also affected, and all this leads to “impaired neuroplasticity.”  Makes you hurt.

In depression, COMT (catechol-O-methyl-transferase) Val 158Met polymorphism is a factor.  This, as far as I can tell is an enzyme (COMT) and a phenotype (Val 158Met). There’s a lot of contradictory research regarding COMT and fibromyalgia, but according to Desmeules et al (see library, as well as Zhang et al for opposing viewpoint) there is a connection.

So some questions/thoughts:  It is very clear (at least to me, being on an antidepressant and knowing what happens when I go off it) that depression is a chemical imbalance in the brain (in very simplistic terms).  From what I know of bipolar disorder, that seems to be the case too.  Fix the chemicals, and you control the disorder – at least you can get some relief or go into remission.  If a lot of the same chemical pathways are affected in these disorders, why doesn’t treating depression also treat fibro?  I know antidepressants (such as amitriptyline) are used to help control pain in fibro patients, and these are meds I can’t take, so I can’t say for sure that they don’t work, but when I was trying them, they didn’t work.

Also, looking at this in the same light as looking at childhood trauma, where pain processing systems are physiologically affected during development, is it possible that the same thing can happen in terms of depression/bipolar disorder?  Chicken and the egg again, but is it possible that not treating depression/bipolar disorder can affect pain pathways in a physiological way?  Is it possible to “break” the pathways with psychological stress so that they physically change?  Kind of like “broken-heart syndrome”?  I have no idea.

One thing I am thinking, however, is that this definitely indicates that fibro is a physiological disorder, much like depression and bipolar disorder – a physiological disorder that affects patients psychologically too.  I think looking at the physiological connections to mental disorders would be helpful.  Plunging back in….

I Slept!

I know you’ve all been wondering.  YES!  I slept last night.  All night.  I don’t think I woke once.  First time in a little too long.  Everything was the same.  One cat at my head, one cat on my legs, snuggled into the memory foam, fluffy blankies, CPAP strapped to my face.  I know it’s an attractive picture…  I started off with a movie to calm my mind.  It shut itself down, and I kept on sleeping.  I didn’t wake up to go to the bathroom.  There was no brain chatter.  I was sound enough asleep that I was really stiff this morning simply because I didn’t move most of the night.  No anxiety, no palpitations.  Just some solid, much needed sleep.  What was the difference?  No prednisone.

My hands and face don’t have that inflated feeling today.  I’m stiff and sore, and my joints are yelling at me today, make no mistake.  Prednisone helps with joint pain.  But I’m so much more comfortable.  The brain chatter isn’t completely gone – I keep distracting myself today at work – and I’m still very tired.  My lungs aren’t any worse for the wear not taking it, and I have an inhaler in case I need it for the next little bit while I heal.

A friend sent a list of long term side effects of taking prednisone on a regular basis – diabetes, compromise immune system, bone death (!!), osteoporosis, muscle wasting, thinning of the skin… and I see on line I can add cataracts and easy bruising.  I already have an excellent chance at developing diabetes between family history and weight, I already have a compromised immune system, my bones and muscles are thus far okay and they may as well stay that way, my hair’s so thin I don’t need my skin to thin out too, I have plenty of problems with my eyes, and already bruise darn well.  There’s not much for benefit here.  Sore joints or a boatload of other issues or a compounding of other issues?  Not worth it – at least not for me.  And thus steroidal medications are laid to rest.


Greener Grass

Last week with my little bout of bronchitis, the doctor gave me prednisone.  I’ve asked multiple doctors about prednisone, because if non-steroidal antiinflammatory drugs aren’t working, gimme some steroidals!  They’ve always shook their heads patiently and told me prednisone wouldn’t work for fibromyalgia.  I’ve always doubted it, because one of my primary symptoms has been inflammation of the joints.  So now I’ve been on prednisone for about four days.

The first day I took it, absolutely every joint in my body was aching.  The prednisone acted like an aspirin-on-steroids.  The pain didn’t vanish but I could move again.  It also worked wonders on my lungs.  The inflammation in my bronchial tube was gone and I could breathe again.  Wonder drug…?

No.  Unfortunately, while I can tell that the inflammation in my joints has reduced and there is a little more freedom of movement, there are some serious drawbacks.  First, I’m jittery.  This would not be a big deal if I wasn’t working pretty hard at trying to keep my world calm and even.  Palpitations are rearing their ugly head.  Second, I’ve had an explosion of brain chatter which has not only affected my sleep but even my waking.  I’m not 100% sure it’s a result of the prednisone, but I’m pretty sure it’s not from the antibiotic.  Third, I’m puffy.  My joints may have settled, but soft tissue is expanding.  Did the fluid in the joints just seep into muscle and fat?  I suspect if I were to continue to take prednisone, I would continue to expand, which I’m doing very well all by myself, thank you very much.

I’ve looked online at what people with fibro have said about taking prednisone, and it looks like there’s a solid split in opinion.  Some people talk about their experiences with prednisone in terms of knowing what it’s like to feel normal or remembering what it felt like to be young.  Others talk about gaining 170 pounds and other major issues with taking it.  One woman says she keeps some on hand for when she is having a flair up, and it helps get her through bad times, but because of long term issues with taking it, she doesn’t take it all the time.

With such a solid split and with the probability that there are many subsets of fibromyalgia patients, it seems like this is legitimate.  Maybe there is a place for steroidal antiinflammatory drugs for some patients at some times – but not necessarily as a maintenance med.  It would be great if I could get the joint relief without the rest of the side effects.  Unfortunately, the side effects are outweighing the joint relief – which is not 100% – so, since my bronchitis is much better, I’m going to stop taking the prednisone.  There are only a few doses more anyway, and I really need to get my brain to calm and get some solid sleep tonight.

Brain Chatter

I haven’t been sleeping well for a couple weeks now.  There’s a combination of factors. Last night, however, it was all brain chatter, and it was classic.  For those of you who have never had brain chatter or who aren’t sure if they have had brain chatter, I’ll try to describe it.  You can take the name at face value.  Have you ever heard a person on a cell phone talking?  And you suddenly realize she (face it, it’s usually a she) hasn’t actually breathed for the last 10 minutes, much less stopped talking and let the person who is presumably on the other end of the cell phone talk?  Keep that in your head.

Then add this.  For those of you who are old enough, remember when you would scroll through radio stations on a dial radio?  There would be the intermittent static with brief snatches of music or voices, nothing really intelligible, but if you pause on the dial, you hear a word or two or a note or two and then move through the static/stations some more.  Keep that in your head.

Then add this.  Have you ever had a song run through your head?  Not the whole song, just a snippet.  Sometimes it’s just a phrase, less than a chorus, sometimes a little more. Over and over, and you can’t move past the phrase to the next stage of the song.  For those of you who are old enough, remember when a record got stuck?  The needle skips on the record and you hear the same thing over and over until you go nudge the needle.  Keep that in your head.

Then add this.  Have you ever laid down in bed and start listing?  You think of the things you have to do the next day or the things you didn’t do that day.  Now imagine the list being on a circuit that repeats.  You know how you repeat something three times to remember it?  Instead, obsessively repeat that thing until it goes through your head without effort. Keep that in your head.

Pour all ingredients into a bowl and fold together gently.  Sometimes you can distinguish the ingredients.  Sometimes they mash together.  Ebb and flow.  Cacophony, endless chaotic noise.

Last night I slept well from 10:00 PM to about 2:00 AM.  At 2:00, it started.  It’s easy to say: calm your mind, meditate, just…stop.  Especially coming out of a deep sleep, rationality and mental cooperation is not exactly a given.  The only real relief I get when the brain chatter takes over like it did last night is to turn on a movie or TV show that I’ve seen before and focus on the dialogue – very bad sleep hygiene.  I can often break the chatter pattern with a little concentration.  Sometimes concentration isn’t possible, however, and the movie/TV show simply adds to the noise.  Yep, I dozed a little from 2:00 AM to about 6:00 AM, and then got another two hours or so of decent sleep.  Fortunately, being Saturday morning I wasn’t required to jump out of bed at 5:00 AM, so I’m feeling okay.

A lot of people are affected by brain chatter. Not everyone who has brain chatter has fibromyalgia, and not everyone with fibromyalgia has brain chatter.  There is a connection, although I’m not sure exactly what.  There is a bit of a chicken and egg question here too.  Fibro, sleep disorder, brain chatter.  Brain chatter, sleep disorder, fibro.  Sleep disorder, brain chatter, fibro… It’s not pretty.

New Page

There’s a new page on the main website under “Trigger Without a Mechanism.”  Discuss the role of early childhood stress/trauma in more detail.  Remember, not a doctor – not a health care worker… Trying, but I don’t understand all the implications and connections.  I can recognize patterns, but without deep medical knowledge, it’s hard to make conclusions.  So, conclusions are welcome… anybody?