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:

5 thoughts on “So, I think I *do* have fibromyalgia, after all.

  1. There are many times when it is hard sharing super personal details on a blog with people you have not ever met. But writing how you are feeling and what you are dealing with may help you and in turn help others battling something similar. I do not have Fibro, but have friends that do so I understand some about it. I battle with Multiple Sclerosis and I tend to write about what I am going through. There are benefits to it because I have learned a lot from others and have also been able to help some that were newly diagnosed or have had MS for a while but they are struggling. The best advice I can give is only share what you are comfortable with and do not pressure yourself.

    • Hi Alyssa, thanks so much for chiming in :) Yes, in the end, I suppose I’m still writing because the benefits have outweighed the risks! It really is an amazing feeling to share a piece of your story, and hear that it’s helped others. I really appreciate you sharing your thoughts– thanks for stopping by!

    • Wow! You know, I remember once reading a blog from a reader in the UK who was on some type of disability for fibromyalgia. She had a case worker coming to her house, and everything. I was so stunned, hearing all this– I thought I must have misread something. But instead, it seems like there is a pretty pronounced cultural difference going on. It would be so amazing if we had that level of understanding here. Thank you so much for sharing!

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