There’s a fun book called Spinsters Abroad: Victorian Lady Explorers, by Dea Birkett (2002).  It recounts the stories of several female explorers from 19th Century England.  One woman explored the male-dominated Middle East, another climbed mountains, another discovered a wide range of plants.  She also became an esteemed fauna artist, having a building at Kew Gardens in London displaying her work that stands today.  I don’t remember all their names (or any of them, really) or everywhere they went.  One explored the Nile. What they all had in common was when they were home, they were pretty close to helpless invalids.  If I remember right, the woman who climbed mountains had a chronic back issue that kept her prone most of the time. That wasn’t the focus of the book.  The focus was the extraordinary accomplishments of women in Victorian England, when (ironically because a female was on the throne) women had little standing in society.

I don’t know, but it’s possible that their struggle with chronic health issues was only a side note because it seems a bit unbelievable.  Did they really have chronic pain, chronic fatigue?  How could they and then still go all over the world.  Why were they healthy outside of their native environments?  Were they?  I would love to read their diaries. It’s important to note, these were middle class women with access to the resources they needed to travel and the resources to be able to focus on planning travel instead of earning a living or cleaning a house.

The thing is, when someone is suffering from chronic pain or fatigue or likely both, it helps to plan things to do, places to go, people to see.  It helps to have an adventure.  It doesn’t mean that person was faking it the day before when he or she stayed in bed all day.  These women found an energy reserve just through sheer determination to do the things they did.  I would bet everyone of them went to bed swollen and sore and woke to fibro flu only to get up and do it again.  I’ve done it myself.  I did it today.

Every day I get up and go to work.  I don’t have a choice, being a single income residence.  I work all day and go home and collapse.  Today, Friday, there was a blizzard, and the commuter bus wasn’t running, so I stayed home.  You would think I would normally have been working for 8-1/2 hours plus an hour commute both ways, tired and struggling sometimes, but functional, so I should be able to clean the house today.  I’ve been working on it all day, since about 6:00 AM.  I’ve napped and lounged and just collapsed between tasks.  It’s getting slowly done, but what should have taken a couple hours has taken 14 and I’m not done.  My mind looks at my circumstances today – I don’t have to answer to anyone, don’t have to be conscious, don’t have to function, so it relaxes, and my body and determination to function does too.  I would totally be that woman in the 19th Century. Give me half a chance and I’d be trotting the globe only to come home and collapse for months on end, until the next trip. It doesn’t mean I’m faking it when I can’t get out of bed after traveling the Nile, it means sheer determination took my body away from its prison for a little while.

It doesn’t make my chronic pain fake.  It doesn’t make my chronic fatigue fake.  They are my every day reality.  I accept them as part of me, but they aren’t me.  I’m that spinster in a corset and petticoat perched on a camel in the desert with a parasol, exploring the pyramids while everyone around me scratches their heads and says, “Huh.”

Every now and then I overhear conversations, people with health complaints who are struggling with doctors and testing, wondering what’s wrong and when it’s going to get better.  I try to stay away from conversations like that because I’m never quite sure what to say.  I hope that they find what’s wrong and I hope they get better.  Maybe that’s all I have to say.  At the same time, I admit to a difficult time listening to these conversations, and the attitude is all my problem.

There is no test I can take that will diagnose fibromyalgia.  It’s a diagnosis of elimination. I’ve said more than once to people who just frown at me disapprovingly that I would love to be diagnosed with a tumor or something that could just be cut out of me so I can just get on with life.  Or not.  However it happens.  Fibromyalgia and a lot of chronic disorders are like living in limbo.  Doctors sort of fade in and out, maybe half-heartedly offer a test or two, suggest that I lose weight, that I exercise, eat right, get proper sleep, meditate, yada yada yada.  All the things I’ve been experimenting with forever and haven’t offered any long term solutions.

If I’m completely honest with myself, I find that I become a little resentful of people who have cures, who can get parts replaced or cut away or take a magic pill and then go climb mountains.  I find I feel resentment when I hear about people undergoing all the tests, when I have to give my doctor solid proof that I should have that one blood test that MIGHT make a difference (but probably will come back negative).  I feel resentment when they get a diagnosis and treatment.  I’m glad for them – I really am.  I love people and never want anyone to feel like I do.  Ever.  But in all honesty, I have to admit, it’s there.  It’s not healthy, and I’ve never acknowledged it before, but it’s there.

Another article about swimming and fibromyalgia: Swimming improves pain and functional capacity of patients with fibromyalgia: A randomized controlled trial, by Fernandes et al (see library).  This one is interesting in two ways:

1. Their study has two groups, one walking and one swimming.  Both groups swam/walked for 50 minutes, three times a week, for 12 weeks.  There was no difference in pain reduction results between the swimming group and the walking group.  There were also equal improvements in functional capacity and quality of life between both groups.
2. Both groups exercised at below aerobic capacity, therefore their aerobic capacity did not improve over the 12 weeks.

The second is the most interesting to me.  This is (I think) the first study that targeted anaerobic levels of exercise.  I’ll have to look further, but so far, for me, the exercises that hit aerobic capacity – or beyond in the case of Crossfit – have done the best in terms of pain reduction, and I’ve always read that mild to moderate aerobic conditioning  was best for fibro patients.  Again, as always, everyone is different.

Generally, what I’m reading is that patients should start at below their exercising capacity and then work up to low to moderate levels of exercise two to three times a week.  This study mentions another study (Hauser et al – I’ll need to find it) that says fibro patients should exercise at an intensity that they can carry on a conversation with another person while they exercise.  I’ve never had benefit from any exercise when I could talk reasonably at the same time.

I’ve done the walking – brisk walking is the only pace that helps over time, and I can’t converse while walking briskly.  I’ve done the stretching – that has only helped individual joints and back, for short periods of time.

Exercises where I can feel my heart rate increase, where I get out of breath and can’t talk to the person next to me – those are the ones that have had solid pain reduction results.  In addition, weight lifting, which is quite anaerobic, was detrimental for pain reduction.

I’ll have to check out other studies that have looked at the differences in effects between aerobic and anaerobic exercises.

When I first started really wondering what was wrong with me, (mid-30s trying to keep up with my son, work, and go to school all at the same time) and being a critic of fast-paced American society with fast food and chemicals everywhere you turn, I started out by wondering how much of an “American” problem chronic pain/fatigue was (I wasn’t formally diagnosed yet).  If only we had Bank Holidays like in the UK, or real vacation time, or just time off, maybe we would all feel better.  Typical ethnocentric American.  And typical human – if there’s nothing wrong with me, there must be something wrong with my environment.  Something external must be causing the pain and fatigue.  Right?  The fast-paced, stress-filled American way of life must be it.

Nope, it’s not.  Many of the articles that I read about fibromyalgia studies and populations are from other countries, all around the world, the people who have clicked onto this website are from all over the world.  The list of visitors are below.  Unfortunately, it indicates how wide of a reach fibromyalgia has.  I’ve had visitors from every continent with the exception of Antarctica (and Greenland, if Greenland is actually considered a continent, which why isn’t it?)  Anyway, thank you all for reading!

An article titled “High-intensity swimming exercise decreases glutamate-induced nociception by activation of G-protein-coupled receptors inhibiting phosphorylated protein kinase A” by Martins et al (see library) discusses why swimming helps mediate chronic pain.  In short, swimming (as well as other forms of exercise) releases the body’s natural opioid, adenosine, and cannabinoid receptors – yep, our bodies can give us a buzz.

This particular study, which was done on mice who were trained to swim for up to 30 minutes at a time, focused on glutamate-induced pain.  Glutamate is a neurotransmitter. Nerve cells use it to talk to each other (glutamate – as in monosodium glutamate – is one of the things fibro patients should avoid in foods).  They injected glutamate in the mice, either in the paw (causing the mice to lick, indicating pain) or the spine, and then they set them on a two-week training program where they eventually swam 30 minutes per day.  Swimming essentially stopped pain reactions to the injected glutamine.  They also noted that untrained mice had increased blood lactate levels (lactic acid causes muscle pain during exercise) when they were set to swimming, but as they trained, those levels decreased.

There is a lot more to this study, including levels of protein kinase A and phosphorylation, but my own understanding of all this is too limited.  I have several other articles to read through, so hopefully I’ll understand better as I read, and I can explain more then.  In the meantime, I can say (to myself as an encouragement) swimming will help with time.  I’m not sure, however, if I’m swimming enough and at a high enough intensity to get the effects described in this article.  Today, besides the overall general fibro-flu (relentlessness scale = 9; pain scale = 6), the backs of my hands and feet hurt whenever I move them.  I never thought about muscles being on the back of my hands and feet.

Anyway, I’m starting week three.  Go natural opioids, cannabinioids, and adenosine!

It’s Valentine’s Day, a day that does not usually get a lot of attention from me.  This year is different, however, with the addition of a very important person, Mr. B.  Love and acceptance is the best support anyone can have, and for people with fibro, it’s like air.  I’ve never had the unconditional love and acceptance that he gives me. After two divorces and years of loneliness, I’m only just starting to believe in the possibility.

For all you fibro and chronic pain sufferers out there, today can be a rough day. Chronic pain can be a relationship killer, and usually the person with chronic pain is going to be the one blaming himself or herself. I’ve been a failure at relationships my whole life, but there’s one thing I know: Be your own valentine before trying to be someone else’s.  Love yourself, unconditionally.  Accept you as you are, because you are wonderful.

I hope you all have someone who makes you feel loved and special.
Happy Valentine’s Day.

Prague and Brno are on my destination bucket list.  Thank you for taking part!

It was definitely a mistake to look at Google yesterday.  I’m still annoyed.  It’s been a year now since I started on this quest to get an understanding of why I’ve hurt my whole life and how I can hurt and be perfectly healthy at the same time.  I understand it – pain does not equal injury, I should do anything I want, and just understand there will be consequences.  Does it make me a wimp?  I don’t care.  Does it slow me down?  Yes, definitely.  Do I have to put extra effort into life?  Absolutely.  Do I want to lay down and take a nap right here and now? Hell yeah. But the big question is and always has been: Is this all real or just in my head? Am I just lazy? I see people from the Facebook fibro support groups wrestling with feeling inadequate or feeling like other people think they’re inadequate, that chronic pain paranoia that gets under all our skins and stems mostly from our own fears of inadequacy.

I can state irrevocably – fibromyalgia is a real thing.  It is a physiological phenomenon. Not only are our chemicals and hormones out of whack, there are permanent changes in our brain structure, permanent changes to our pain processing centers.  No, I can’t say why this has happened, what the underlying cause is – possibly genetic or a combination of genetics and other factors. It’s real.

Yes, my mood can make the pain worse; stress can put me under the table. Psychology plays a real role in being able to keep functioning despite the pain.  Psychology can make me curl up in a ball and groan all day, if I let it.  Psychology can make me clench my jaw and say dammit I’m going to work no matter what.  One day at a time makes a week. No matter how closely psychology is tied to my ability to function day to day, it is only peripherally tied to the condition itself.

I didn’t will myself to be in pain back when I was 15 years old. I didn’t say to myself, hey this will be an easy out if I just can’t stay awake at my desk. I certainly didn’t will myself to go through the best years of my life feeling like I was breaking bones and joints whenever I did something fun. If doctors ran the tests on me that researchers run on fibro patients, they will see those out of whack chemicals.  If they image my brain, they’ll see decreased gray matter.  If they test my pain processing system they’ll see those changes as well. Fibro is real. Nope, I don’t know why it is, but I can say absolutely, yes, it is.

And now, I’ll let it go. It doesn’t matter what people think.

See the main website and the library for articles about possible root causes of fibro. There are a few pages that I need to get written, but the basics are out there, and the research is cited in the library.

I made the mistake this morning of using a Google search trying to find an article I had seen quite a while ago.  The article was about a study that researchers had done to determine how the general public view people with fibromyalgia.  It was a surprising article because well over 90% of the respondents not only empathized with fibro patients, they understood in general what fibro patients were going through.  I have to find that article again.  Since I just found the sports bras and yoga pants I’ve been missing for over a week and they were exactly where they were supposed to be, I’m expecting to put my finger on that article within a week…

What I found on line were mostly older posts – I think the newest was from 2012 – but they were disheartening, calling fibro a “fake” syndrome and more.  The thing is, attitudes have changed a great deal.  Researchers are obviously taking fibromyalgia seriously because they are putting time and resources into looking at the underlying causes of fibromyalgia – NOT how fibromyalgia is all in patients’ heads.

Researchers are getting closer, however, and it is possible to give a pretty solid answer to people who ask (possibly doubtfully) what fibro actually is:  Fibro patients have elevated levels of pain neurotransmitters and lower levels of pain neuromodulators. In other words, fibro patients have increased levels of substance P, nerve-growth factor, and glutamate – the stuff that increases painful sensation – while at the same time they  have decreased levels of dopamine, serotonin, and norepinephrine – the stuff that suppresses pain.  This is very simplistic, and only a tip of the fibro iceberg, and no one knows why fibro patients have “off” chemistry, but it is an established fact that fibromyalgia is not a psychological disorder, it is a physiological disorder, and the chemical imbalance indicates that.

We have pain without injury.  We have the added challenge of acknowledging that our pain is not causing injury and to keep moving despite the pain.  Like my doctor told me when she first diagnosed me – every day we have a mountain to climb that no one else sees, but we have to keep climbing it.  Fibro is not about what we can’t do.  Fibro is about everything we can do.

You have wonderful food… Thank you for taking a peek!