So, I think I *do* have fibromyalgia, after all.

Wow… the past few months have been full of changes for me!  There’s been a lot to deal with… but at the same time, I’ve been learning from it, and figuring a lot out.

I don’t always feel inspired to share super personal stuff on this blog, but I’ve heard from a few readers — including a few friends from real life, who decided to check out my blog– who reminded me that sharing these personal details can really help others.  So I feel moved to share some of my epiphanies with you all, for whoever may see this.

Epiphany #1.

This epiphany actually dates back to a conversation I had with another girl at my friend John’s birthday, a few months ago.  (This was before I ended up in the ER after a chiropractor visit, and subsequently fired my primary care doctor).

The girl I was speaking with, Jess, is a nurse at a primary care office.  We had never met before but she was just one of those really caring, empathetic people who’s easy to talk to.

I found myself opening up to her about my story– my health issues, chronic pain, the SI joint.

“Do you have fibromyalgia?” she asked me, stopping me in the middle of my story.

“Well, no,” I answered.  “Not really.  I have some of the symptoms, but no one’s ever really diagnosed me with it.”

She looked at me questioningly, so I continued.

“I mean, I don’t know, maybe I have it… I’ve just never really seen a doctor who seems to believe it’s a real thing.  My primary care doctor has always thought it’s in my head, and that I’m depressed.”

Now I really had her attention.

Her eyes widened and she said, “We see people in our office with fibromyalgia all the time.  It’s not an uncommon diagnosis.  Just because your doctor doesn’t believe it’s real, doesn’t mean you don’t have it.”

Somehow, Jess was about to put the entire past ten years of my life into a different perspective.

She continued, “You know, just because someone has a medical degree, it doesn’t make them the be-all, end-all authority.  They’re just people. You have to listen to yourself.  You deserve help.  Maybe there’s a better doctor out there for you.”

I was just honestly floored by this.

Jess started telling me how the doctor she worked for not only believed that fibromyalgia was a real diagnosis, but was willing (and confident) in treating patients with it herself.  Whereas my former PCP responded that it “had to be” a mental health issue, this doctor actually prescribed medication.  Not for depression or anxiety, but for fibromyalgia itself, as its own diagnosis.  And how this doctor believed her patients, and had sympathy for them and their struggles.

I couldn’t believe what I was hearing– it was like Jess was describing another world.

Since then, I’ve been reading more recent, up-to-date articles on fibromyalgia… and I think Jess is right.  

I think I do have it.

I’m not sure why I’ve always thought of my chronic pain issues as separate from fibromyalgia.  I think there’s a combination factors– the biggest of which, of course, is I’ve never met a medical professional who believed it was real.

I don’t know why this is.  I seemed to have bad luck, getting one doctor after another who believed chronic pain had to be linked to mental health.

I want to be clear about the fact that I have found significant relief through pain neurophysiology education, which I talk about on this blog. 

It’s a special form of physical therapy that teaches chronic pain patients how to work with their nervous system, rather than against it.  It’s an amazing way to reduce the cycle of chronic pain.  I can honestly say that my physical therapist Tim, who studied with pain researcher Neil Pearson, is the only medical professional who ever truly understood my pain issues.

But Jess made me realize that maybe I do deserve to have doctors treating me, who actually believe in me.  

You know what?  I still have pain.  (Pain neurophysiology education never promises to completely erase your symptoms– only to help you live with them).

The 95 degree heat we’ve been having here in Massachusetts knocks me out, seemingly more than other people.  And I have other symptoms associated with fibromyalgia, as well.  Maybe I do actually have it.

Maybe it’s a little bit ridiculous– and unnecessary– to go it alone.

Ultimately, I almost think it’s a lack of self-compassion that’s kept me from trying harder to find a doctor who believed in fibromyalgia.  Despite everything I knew intellectually about the science, on some level I had sort of internalized the idea that I was a “weird” case, or a “mental health case,” because that’s how my former primary doctor made me feel.

Looking back, I think I accepted the idea that there was no one who could help me, way too soon.

However, seeing how my former doctor reacted to my chiropractic scare really put things into perspective.

As I wrote about in this post, this experience helped me see her shortcomings a lot more clearly, compared to chronic pain.

When it was actually a question of my being paralyzed, or having damage to my reproductive organs, I saw how her inability to empathize, or actually acknowledge all of the symptoms I was presenting, actually had real world consequences.

So I switched doctors… and I’m so glad I did.

I’ll share more later about what I’ve been learning from my new doctor.  But for right now, I really wanted to address this fibromyalgia question.

Because I’ve been going back and reading recent articles online, and I’m changing my perspective.  

Fibromyalgia isn’t just one symptom of central sensitization… it is central sensitization.

The Mayo Clinic explains:

“Researchers believe repeated nerve stimulation causes the brains of people with fibromyalgia to change. This change involves an abnormal increase in levels of certain chemicals in the brain that signal pain (neurotransmitters). In addition, the brain’s pain receptors seem to develop a sort of memory of the pain and become more sensitive, meaning they can overreact to pain signals.”

Yes, that’s me.  That is what I have.  I don’t know why I didn’t see it before.

Going forward:

I’m going to do myself a favor, and see myself as someone who legitimately has fibromyalgia and deserves help.

I have written this so many times on my blog.   Believe in yourself, believe in yourself, believe in yourself.  It’s a lesson I’ve had to learn so many times over, and am still learning.   Unfortunately (or fortunately, depending on how you look at it), it’s a lesson life never seems to stop offering me opportunities to learn.

I’m not quite sure exactly what implications this has for my future treatment.  I do think that, despite my lack of diagnosis, I’ve still tried most of the treatments available to fibromyalgia patients.  (I’ve tried just about all of the medications, with no success).

But… who knows?  Maybe something else is out there for me.  And going through life answering “no” when people asked me if I had fibromyalgia was probably not going to help me find it.

So… that’s all for now.

I actually have a few other epiphanies coming up to share with you– it has been such an intense (but good!) time for me, learning wise.

Hope you stay tuned!

Related posts you may want to check out:

Grateful to be okay

Well, if there’s anything I can say I learned last week week (in addition to chiropractors are dangerous), it’s this:

How very, very grateful I am not to have a permanent nerve injury.

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I guess that’s sort of the obvious thing for anyone to say in this situation.  But what really surprised me was that my biggest fear was not how difficult daily life was going to be if my nerve issues turned out to be permanent.

Instead, what scared me the most was that I might have to give up my chosen career– or, at least, not be able to do it in the way that I want.

It was sort of a reminder for me, in a way, of how much I really want to become a physical therapist.  Because in my daily life, I often get bogged down in the practicalities.  The few remaining prerequisites I would need to take in order to apply to certain programs.  Taking the GRE (again, that is– let’s not talk about how I scored the first time!).

Last Friday, I consulted a neurologist, and was very encouraged by what she said.  On the way home, I stopped in the town of Newburyport, Mass., which is always one of my favorite places to go in the summer.

I could feel my body telling me it was okay to move, that it was okay to start using my legs again.  So I walked around and took in the sunset, gathering my thoughts.

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And I was just sort of thinking of everything I’ve been working on so far– my classes, my blog, my Youtube channel (I have so many ideas for videos I mean to make!).

And of course, the e-book I’ve been working on– Exercises for the Sacroiliac Joint.  It will be quite a bit easier to get back into concentrating on that, now that the question of whether I’ll be partially paralyzed for the rest of my life has been taken off the table.

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As I have said before, I don’t necessarily think everything happens for a reason.  But as my friend Nicole told me once, “You can make meaning out of things for yourself.”

So there a few lessons I can draw from what happened:

1) I need to explore alternatives to chiropractic adjustments.  Who knows where this will take me?  Maybe I’ll discover something even better, something that will benefit my future patients and make me a better PT.

2) I have such a better understanding now of what it feels like to have nerve damage.  Before, it was something I only could imagine.  Now I have felt it– thankfully, only for about a week.

And 3) What a reminder of how much I really do want to do this.  I want to teach people, I want to educate (and thank God I’ll still be able to use my own body as a tool to do so with).

Sometimes I feel myself get slowed down by the demands of daily life, and the things I have to do just to get into school.   So in a way, it was quite the wake-up call to get in touch with the fear I had, at the thought it could be taken away.

So now, I am grateful to be okay, and it is back to business.

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When the going gets tough, the tough start researching…

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Hi everyone!

Today I wanted to share with you this post from my friend Clare over at Jelly-Like Joints.

Clare is a science-lover and “bookish crafter” –a book lover who also enjoys arts and crafts.   She was born with a genetic condition that affects her connective tissues.   This causes her to have hypermobile joints, along with chronic pain and other symptoms.

In her post, Clare writes about how she’s been struggling with some new symptoms lately, specifically in regards to her voice.  (Connective tissue disorders can cause a wide range of symptoms, because connective tissue can be found just about everywhere in your body).

I wanted to share her post with you because I really admired her mindset– it’s the approach I try to take as well, when I have setbacks.

Which is to take a step back and say, ok.  I have this new problem I wasn’t expecting.  But that also means there are new potential solutions out there I haven’t tried.

Of course, this is easier said than done.  And I admit, it is not always my immediate reaction.  But when I work through the anger and frustration, this is usually the point I get to that feels right, that lets me know I’m on the right path.

Keep going.  Don’t stop looking for answers.

So what I really admired about Clare’s post is how, not only is she mentioning things that could be helpful to her, she keeps trying to help others at the same time.

So… check out her post!

You may notice that she’s included a link to one of my blog posts ;) I also struggle with hypermobile joints, however mine are hypermobile for a different reason.  I am very fortunate not to have a connective tissue disorder…  I was just born with joints that don’t fit together in the most stable way, making them more prone to pain and potential injury.  (It just happens to some people, through luck of the genetic lottery).

I also really thought the part about the acupressure mat was interesting.  For those that don’t know, the term proprioception means a general awareness of where your body is in space, and the different stimuli affecting it.  Our sense of balance, for example, depends on different types of proprioceptive input through our nervous system.

Sometimes when we have a chronic illness, or injury, or chronic pain, our sense of proprioception to different parts of our body can be impeded, so an important part of therapy is to help the nervous system “remember” to check for different types of information.

That is something the acupressure mat could do, by giving TONS of information to our nervous system about what’s going on with your feet!  So I thought that was cool.

Anyway, I hope you’re doing well, and that you all head on over to check out Jelly-Like Joints!

The thing I was most embarrassed to write about

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Technically, I suppose it’s bad form to brag about how much traffic you’ve been getting on your blog.

However, I feel like it’s a little different when a positive message comes with the bragging, so I wanted to share some of my updates with you all.

I’ve come so far from where I was when I wrote my first post about the sacroiliac joint. Despite everything I’d already been through with central sensitization and learning to believe in myself, I still had trouble taking myself seriously when it came to the SI joints.

I mean, I remember why I thought that way, when none of the doctors or physical therapists I saw seemed to know what I was talking about.

But now I know from running my blogs, and hearing from all of the readers who’ve shared their stories with me, that I was far from alone.  I’ve been hearing from so many different people, and I think it’s safe to say that just about everyone who struggles with SI joint dysfunction feels this same way at first.

So, a big thank you to everyone who’s shared their story with me.  Technically, you’ve been reaching out to me for help, but in the end, I think I’ve benefited as much as you.  It’s meant so much to me to know that I was never alone, either, and that the topic I was so afraid to write about is now the topic that’s getting me the most views.

In that spirit, I wanted to share my traffic stats from February with you. My traffic over on My Sacroiliac Joint Saga has been increasing each month, and in February it hit an all-time high, of over 15,000 views.

 

While I wish Sunlight in Winter got anywhere near this much traffic, it just goes to show how many people there are out there looking for information on SI joint dysfunction.

I wish I could show you all of the meaningful emails I’ve gotten, but since I keep all my messages confidential, these numbers will have to do.

But to me, sharing these numbers with you isn’t about bragging– it’s about proof that good can come from sharing the parts of your story you think no one will want to hear.

The Four Categories of Pain– Dr. Jay Joshi

Hi everyone!

I’ve just discovered this awesome talk on central sensitization by pain management physician Dr. Jay Joshi.  It’s totally packed with information I want to share with you all– such as why it’s so hard to get help for central sensitization, and how ketamine infusion treatments can help.  There’s so much here, though, that I thought I’d break it down into bite-sized information for you.

So, to start out, let’s look at what Dr. Joshi says are the four main types of pain.  (For the purposes of this blog post, I’m actually jumping ahead to the 8:50 mark– later, we’ll come back to the beginning).  

The four types:

  1. Nociceptive
  2. Neuropathic
  3. Inflammatory
  4. Central Sensitization

1. Nociceptive pain: pain that results from actual tissue damage, or potential tissue damage (like if you’re starting to bend a joint past its normal range of motion).  It is “the common discomfort we have all experienced as a result of injury — a paper cut, a broken bone, or appendicitis, among other things.

More on nociceptive pain and its subtypes

2. Neuropathic pain: involves physical damage to the nerves or the central nervous system itself.  It can also occur when the person has a tumor that’s pressing upon a nerve.

3. Inflammatory Pain: Pain produced by the chemicals our body releases as part of the inflammatory or healing process.  On a small scale, think of how a bruise swells up and is painful to the touch.  This is because our body is sending special cells and chemical messengers to that part of our body in order to heal it– and also to make it painful, so that we know to protect the area.  This is inflammatory pain, and it can also happen on a much larger scale with more serious injuries.

4. Central Sensitization: And here we are– the type of pain that’s most affected my life.  It has to do with the concept of neuroplasticity: that the central nervous system (the brain and spinal cord) can change in response to the things it experiences.

When your body experiences a painful event or an injury, it learns from that experience, the same way it learns from anything.  Practice makes perfect– when your brain gets enough practice at sending pain signals, it gets better at it gets better at it.  In a way, this is for your protection– you learn and become more sensitive to performing the same kinds of actions or motions that may have caused this injury in the first place.

However, as a protective mechanism, central sensitization can sort of backfire.  Eventually, we can reach a point where our nervous systems are trying to protect us too much, when we’re not really at risk of injury anymore.

So these are the four main types.

Unfortunately for those of us suffering from central sensitization, it’s the type of pain that doctors and other medical professionals know the least about.

As Dr. Joshi explains, “there are physicians who claim to be pain physicians… who are anesthesiologists… who don’t even understand it.  And they’re teaching at major programs.  It’s scary.”

Central sensitization is as real a type of pain as any of the other three.  And, as Dr. Joshi says, if you’re going to be able to adequately treat pain as a doctor, you better be aware of all four categories.

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Dr. Joshi also has some really great analogies which help to explain the phenomenon of central sensitization further.  I’ll be elaborating on some of those in my next post.

I hope this was helpful!

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Also: you may have noticed that I’ve been playing around with my blog’s format.  I’ve honestly never truly been happy with the appearance of my blog, because I find my options are so limited with premade WordPress themes.  I’m beginning to experiment a little (and even spend a little bit extra!) to try to get things right.  If you have any thoughts or suggestions how improve the appearance of my blog, please let me know!