A groundbreaking new study paves the way for future treatments for fibromyalgia

Hey everyone!

If you’ve been following my blog for a while, you’ve probably seen this absolutely incredible TED talk by Dr. Elliot Krane, on the nature of chronic pain.  It is seriously one of my favorite things to watch.  Chronic pain is terrible, but it’s always so hopeful to me to keep track of how much we’re learning through scientific research.

One of the things Dr. Krane mentions in this talk, which was back in 2011, is the role of a type of nervous system cell called a glial cell in chronic pain.

For a long time, scientists didn’t think glial cells did that much, in terms of affecting our overall function.  Instead, glial cells were believed to provide a supportive rule, providing support and nutrients to other types of cells within the nervous system.

However, a new line of research has been identifying the fact that glial cells actually do way more than we give them credit for, in their own right.

Fast forward to 2018: turns out researchers at Massachusetts General Hospital as well as the Karolinska Institute in Sweden have just published a groundbreaking new study on the role of glial cells in chronic pain.

For this study, researchers used brain imaging techniques to test for the level of TSPO, a chemical related to the activity of glial cells, in several different parts of the brain.  They compared the level of this chemical in the brains of patients with fibromyalgia, as well as the brains of healthy subjects for comparison.

Not only did they find that fibromyalgia sufferers had much higher levels of the marker, but they also found that the amounts of this chemical present– and therefore, the level of glial cell activity– was actually correlated with the amount of fatigue reported by patients.

This is super fascinating because it shows that glial cell activity plays a role not just in our perception of pain and pain sensitization, but also in the debilitating fatigue that many fibromyalgia sufferers report.

Because a study like this is able to demonstrate this link so clearly, that opens the door for researchers to further investigate drug therapies which can target the glial cells, meaning we will someday have more options for chronic pain.

You can check out the original study here.

I am excited about this, so I wanted to be sure to pass it on.

Happy Monday to you all!

How I developed central sensitization: Part 5

For a few years, I was stuck: caught between all of the doctors I saw, who thought there was something wrong with me psychologically, and the fact that deep inside of me was a calm, inner voice that knew it just wasn’t true.

***

Feeling as though I’d run out of other options, I became really interested in alternative medicine.

I still wanted an explanation for my pain that had something to do with my physical body.

I wanted to be seen; I wanted to be heard: I wanted to be believed.  And the alternative medicine practitioners I saw were able to provide me with that validation.  They believed me– of course the traditional doctors hadn’t been able to solve my problem.

***

For a while, I went a little bit off the deep end.  I read just about every book I could find on energy healing.  I started taking turmeric capsules instead of Advil; I bought crystals.

I began to see traditional medicine as somewhat of a sham, propped up by the pharmaceutical companies.  And I thought anything that fell under the heading of “alternative” medicine had to be good.

***

I had a lot of reasons to reject the “establishment” view.  The establishment, after all, is what failed me.  I’d slipped through the cracks, so many times; the safety nets I’d counted on had turned out to have holes in them.  Of course, it made sense that what was “traditional” had failed me again.

***

Now, I don’t want to offend anyone by insulting or dismissing an approach that has been helpful for them.  But if I were to give you the complete list of everything I tried, well, just about every “alternative” treatment is on it.

However, the truth is that nothing I tried worked, and all of it cost me a lot of time and money.

Looking back, there were definitely times when I must have been “that crazy person,” insisting to people that they try this same new treatment I was doing, or that they consider the fact that their headaches or thyroid problem could be entirely caused by blocked energy flow in the body.

My views have changed a lot since then– the science classes I’ve taken have opened my eyes to just how much we really do know, using “regular” science.

But I still have a lot of empathy for the “crazy” people, because I was one.  I know how easy it is to believe a convincing claim from a caring person who probably genuinely thinks they’re going to to help you.  Especially if you don’t have much of a scientific background.

I used to believe some crazy shit I’d be really embarrassed to admit to you now.

That’s why, even though my perspective has changed, I don’t believe in shaming people, or embarrassing them, for trying to do something to heal themselves.  Everyone is on their own path… and some of our paths can get a bit convoluted.

***

I’m not trying to say that alternative medicine doesn’t help anyone.  I believe there are some treatments that are probably more legitimate than others (for example, acupuncture has been shown to have some pretty significant effects for pain relief, although evidence suggests it may be more due to the body releasing endorphins in response to a needle than anything else).

But at the end of the day, I was struggling from the effects of central sensitization, which none of these belief/treatment systems had any means of addressing.  There’s no way any of these treatments were going to help me, because even my original “diagnosis” was always wrong.

I felt better, emotionally, when I was given an explanation that had to do with my physical body… but ultimately, all of the treatments fell short.

After all, there was no way any school of thought was going to help me, if it didn’t even have a name for my problem.

To be continued in Part 6!

To read this series from the beginning:

How I developed central sensitization, Part 4

I began to wonder if something about the compartment syndrome and the leg surgery could have changed something in my chemical makeup, weakening my body and depleting its healing response.

After all, pain was supposed to be my body’s way of telling me that I was injured.  Something was broken; something was wrong.

Time and time again, I’d go to see a doctor, and they wouldn’t be able to find anything wrong.  My elbow was fine; my wrists were fine.  One of my shoulder muscles had a knot the size of a pea, but according to the pain specialist I saw, it  “shouldn’t be causing this much pain.”

It was honestly so, so frustrating.  I really started to think there was something wrong with me that doctors just couldn’t find.  Something wrong in my tissues; maybe some kind of problem with inflammation.

***

My primary care doctor back home started to think there was something wrong with me psychologically; that maybe this was depression, or anxiety.

But her suggestions just didn’t resonate with me.  I’d been depressed before.  I knew what it felt like, and this wasn’t it.  As much physical pain as I was in, I was still in so much less pain, emotionally, than I’d been in as a teenager.

After all, I’d been through a time when it felt like daggers just to breathe; when I was so exhausted from trying to make it through the day that the walk from my parents’ driveway into the house seemed so far I might not make it, and I had to rest in my car.

I’d been through all that, and it hadn’t resulted in physical pain like this.  In fact, my body had been at its peak, running faster and faster.

Now I’d come out of all of that– the clouds had finally lifted, and for the first time, I felt like knew what I wanted out of life.  I was enjoying my classes, and the fact that I was meeting so many like-minded people.  I felt like we were all going to graduate and change the world together.  Finally knew what it felt like to be happy, when before it had been just a word.

How could depression be causing this debilitating pain now, when it never had before?   Apart from the pain itself, I was actually happy with my life now.  It didn’t make any sense.

To be continued in Part 5.

To start from the beginning of this series:

 

How I developed central sensitization: Part 3

Okay, I still can’t believe I’m writing about this part of my story publicly.  But it seems like I’ve reached the point in my life where my need to say something is beginning to outweigh my fear.  So here we go:

***

I was 21.

I’d finally had leg surgery, which had successfully cured my compartment syndrome.  And now I’d just stopped needing to take painkillers for my back.  I’d completed three semesters of college, and I was excited to keep moving forward and try to live a normal life.

These posts have been pretty heavy so far, so I want to take a moment and actually reassure you that this was a really positive time in my life.  I loved my new school, and my new friends, and I loved what I was studying.  I was completely at home in the socially conscious, hippie atmosphere of Western MA–  I felt as though I was finally where I was meant to be.

But something had changed within my body.  Even though I no longer had a major injury, it seemed like every little thing I did could set off some kind of pain.

I’d open a heavy door, and my elbow would hurt afterwards, for days.

I’d do a lot of typing, and my wrists would burn so intensely that I’d start wondering if I had carpal tunnel.

I tried to get back into running, but the first time I reached a good speed, I developed a stabbing pain underneath my right shoulder blade and had to back off.

At the time, I’d had no idea this could have anything to do with the way my nervous system was functioning.  It just seemed like my body had changed; like it wasn’t able to heal from things anymore.

I actually started to wonder if there was something fundamentally wrong, deep in my tissues, and now I was somehow prone to getting injured really easily.  It seemed like every little thing I did created more pain.

***

I didn’t like this new body, and I wanted my old body back.

I remembered what it was like, before my surgery and this whole episode with “glass back syndrome”– before pain had encapsulated my whole body.

I’d had other injuries before, of course– shin splints, as well as a partial tear of my hip flexor tendon during my freshman year of high school.   But what had made these injuries different is the pain always stayed in one place, and when the injury had healed, I was strong.

Now my body was profoundly different.  I felt like it couldn’t withstand anything; couldn’t stand up to life.  Every little thing made me feel like something was broken, or that I was “injured.”

If I opened a door wrong, or carried something heavy, or went for a walk when it was super cold out— every little thing I did seemed to create a “micro-injury.”  I’d have pain, or pins and needles, or some other weird symptom, and feel like I couldn’t use that part of my body for days.

My once powerful body, that had carried me up hills, and down rocky slopes– the body that made half of the girls on my cross-country team hate me, because I was always #1– somehow, right as the rest of my life was starting to get back on track, it had turned to glass.

To be continued in Part 4.

To start from the beginning of this series:

Can music block pain signals? Music-induced analgesia

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I, personally, have known for a long time that music could help reduce my pain levels.  It’s just something that I always knew intuitively. Listen to music (good music, of course) –> feel better.

That’s why I was so intrigued when I found the following post from my friend Jo Malby on some of the science behind how music can lessen our experience of pain.  (I’m sharing it here with her permission, of course!).

Jo writes:

“The joy we derive from listening to music we love, much like anything that brings us joy, is always beneficial in helping us cope with chronic illness and pain. According to ongoing studies, researchers have found that there are many reasons for pain patients to listen to music they love.

Outside of the times when pain is too fierce or your body too sensitized and flared-up for sound or vibration, music can be a useful coping tool, though not only for the joy and escape music brings you.

With real physiological changes in the brain, listening to your favourite music can have a significant, positive impact on perception of chronic pain, as well as the pain itself, with some studies even finding music resulted in less intense pain levels.

Music also reduces anxiety and depression, both often natural consequences of unpredictable debilitating chronic illness and pain, and both difficult to manage and treat. Though it’s often under used as an natural anti-depressant.

Research has drawn its theories on how nerve impulses in the central nervous system are affected by music. Anything that distracts us from pain may reduce the extent to which we focus on it; music helps us shift our attention from the pain but it’s also emotionally engaging, especially if the piece has memories or associations.

With even the rarest of tunes now online — from YouTube to Spotify to Soundcloud to more exclusive sites — search for some of your favourite sounds or create playlists with songs that specifically help you through particularly difficult times or when pain is especially severe, and you need to calm it and your state of mind.

Personally, nothing gives my mood a lift like a little Billy Holiday, Dusty Springfield or Aretha; if feeling frustrated, Chavela Vegas (anger’s better in Spanish). More recently, Mozart’s been on repeat. I love music. (Almost) every genre. Find what you love. Play it. See if it helps you cope, lifts your mood, or offers a momentary sonic escape from the complexities that come with pain and chronic illness.

Scientists now know that listening to music involves a huge portion of the brain — auditory areas, of course, but also motor (movement) areas, the limbic system (involved in emotions), and areas of the brain believed to be responsible for increased creative thought.

Anything that lights up areas in the brain other than pain may also be helpful to reduce that pain.  ((Sidenote from Christy: this reminds me of some of the really cool resources I’ve linked to from Neil Pearson!)).

These effects may not be powerful enough in isolation but added to your pain management toolkit, using music when you are feeling frustrated or sad, depressed or angry, lost or alone, all can help you cope, feel better emotionally, and even lessen a tiny bit of pain.

A study conducted by Peter Vuust, of the Center for Functionally Integrative Neuroscience (CFIN) at Aarhus University, Denmark, found that fibromyalgia patients experienced less chronic pain after listening to their favourite music.

Additionally, recent studies on music therapy and chronic pain conditions found that music reduces anxiety, depression and pain— just from listening to music.

The effect is often referred to as ‘music-induced analgesia‘, and though that analgesia may be more subtle than profound, anything that helps you must be embraced.”

Some additional links:

The Conversation: How music can relieve chronic pain

BBC News: How music can reduce chronic pain

Prevention.com: More music, less pain?

Body in Mind: Music modulation of pain perception

And for more from Jo:

Jo Malby is an amazing writer living with and sharing her experience of complex regional pain syndrome (CRPS) on her site The Princess in the Tower.

She also runs the site Inspire Portal, where she shares resources to provide creative inspiration to writers (and other artists!).

Definitely check out more of what she has to say!