My Story, Women's Health

An Update on Life with One Ovary

One of the topics readers most frequently contact me about is the time I had to have emergency surgery to remove my right ovary.

In case you aren’t familiar with the story, I had had abdominal pain throughout most of my twenties.  Doctors had told me it was nothing to worry about– just digestive issues.

Well, in February 2013– just a few days before my 28th birthday– the pain in my right side, and nausea, became so severe that I went to the emergency room.

There, an ultrasound revealed that I was suffering from ovarian torsion— something had caused my right ovary to rotate, with the Fallopian tube wrapped around it in such a way that its blood supply was being cut off.

The doctors rushed me in to surgery in an attempt to reverse this process and restore blood flow, but it was too late.  The ovary had to be removed.

For months, after this– I’d say a year, really– I suffered from both physical and emotional fall out.  And actually, a lot of what I experienced me is what my readers say they also go through.

I decided it’s high time I give everyone an update on this situation, and I’m here to tell you that, three years later, everything is alright.

***

Physical Symptoms:

I was in pretty significant pain for about two weeks following my surgery.  I really relied on narcotic painkillers.  They masked the pain so well that I’d think I was better and didn’t need them anymore.  Then my last dose would wear off and I’d feel like my world was coming to an end.  Other people (mainly my parents) would have to remind me that I was due for another Percoset, and then I’d come back into my rational mind again.  (By the way, I am a FIRM believer in the usefulness of opioid medications.  This entire ordeal would have been much more emotionally scarring if I’d had to bear the brunt of this mind-warping pain without them) .

After about two weeks I was okay… until my next period.

This is pretty graphic, but I figure if you’re here, you’re interested.  I went back to my OB doc in agony again, like I’d just had the surgery yesterday.  He explained that basically, now that I was menstruating, blood was coming out of  the side my uterus and leaking into my abdomen, because now I had a gap where the Fallopian tube used to be.  Basically, it was a totally benign phenomenon– my body would just reabsorb it– it was just causing pain because there was fluid where fluid wasn’t supposed to be.

At the time, my doctor told me it would be like this every time I got my period, and suggested I take the birth control pill to lighten my periods and ease the pain.  I did this for a few months, but eventually as time wore on, things stopped being painful.  Now I believe that my body just hadn’t fully healed from the surgery.  It’s also possible, as one nurse practitioner suggested, that my nervous system had become sensitized to pain in that area (gee, that sounds familiar!).

What I do know, for sure, is that three years later, I am having normal periods without agonizing pain.  I sometimes do notice that during my period, I’m a little sore on the right side, but it’s something I am pretty much able to ignore.

Mood/Emotions/How Do I Feel?

I feel totally and completely normal.  What all of the doctors told me is true– when you lose one ovary, the other one completely takes over.  You don’t really need two.  (In fact, there’s a reason why we have two).

My left ovary is a magical little powerhouse and it has taken over completely, doing everything I need it to do.  I feel the same.

Blame/Doubt

It took me a really, really long time to work through some of the emotions that came from this.

I am still mad at the doctors who so easily brushed my concerns aside.  To be fair, they were gastroenterologists, not ob-gyns.  But still.  One of them literally even wrote a book on digestive disorders in women.  (I don’t hate her enough to name her here– in fact, she is still my doctor because I think she’s a good gastroenterologist).

But still, on this, she did brush me aside and tell me it was irritable bowel syndrome.  Seeing that I am a woman of child-bearing age, I wish she had thought to tell me to consult an OB-GYN.

I also still think that the gluten-free craze is just a fad, and that it has power to do just as much harm as it does good.  (This doctor’s advice to me, the last time I saw her before this happened, was to try switching to a gluten-free diet to see if I felt better).

But I’m no longer mad at myself.  I did the best I could with the information I had at the time.

I try not to judge myself for the way I handle things.  There have been times I’ve under-reacted, and there have been times I’ve overreacted.  Nobody is perfect.  We do what we can.  Pragmatism is my goal.

Fear of it happening again

And this. This is really the number one thing women write to me about– the fear that the same thing will happen to your good ovary.

I can’t promise you that nothing will, but I can tell you that so far, nothing has happened to mine.  It is just fine.

They told me what happened to me was about as rare as getting hit by a bus, or being struck by lightning.  The odds are like one in a million.  The odds of it happening again? Almost minuscule.

Still, there have been a number of times that I’ve freaked out and rushed into the doctor’s office for an emergency same-day ultrasound.  (When you’ve already been that one in a million, it doesn’t really make you feel like taking chances).  But my ovary has never been twisted.

I’ll tell you the truth, in the past three years, I think I’ve had six of these.  I know that’s a lot.  But I know that it won’t seem like a lot to any of the women who’ve emailed me.

The majority of the times, the doctors were able to decipher what had happened to cause me pain.  That I had ovulated, or was about to ovulate (normal ovulation causes the formation of a little cyst, which then releases the egg).

Some of these cysts, they said, wouldn’t be enough to cause pain in every woman, but for whatever reason, in me– probably now that I’m hyper-focused to that area– I notice it.

And there were a few times I was really scared, when it hurt a lot.  But I learned that, in some women, normal ovulation can be really painful– even more painful than what I was reporting.  So I would just have to trust in the ultrasound, when it showed my ovary just doing its same normal healthy thing.

So, that is where I’m at right now.

I still hope to have kids someday, and as far as I know, there is no real reason why I won’t be able to.

Now that I write this, I can’t believe how sane and calm I sound.

Believe me, it wasn’t always this way.  I was the same as those of you who end up sending me ten panicked emails (it’s okay, I say this affectionately).  Really, I was.   But I had no one to email.  And now, for me, things are okay.  And there is every reason to think that, eventually, they will be for you too.

My two previous posts on my surgery:

So… I lost an ovary

Beware the Red Herring (follow-up post)

Sacroiliac Joint, Women's Health

Powerful female hormones, injuries, and pain

Something I’ve really come to notice during my time with SI joint issues is the effect of my hormonal cycle on my ligaments.

I saw a female pain specialist once who put it very plainly:

I have extremely healthy women come into my office– women who are runners, women who are training for marathons– and sometimes it seems like, during their period, all they have to do is bend over and tie their shoe, and they can throw their back out.

Why does this happen?

Basically, one of the hormones a woman’s body releases in the days leading up to her period is a hormone called relaxin.

As the names suggests, relaxin acts as a chemical messenger that tells our muscles and ligaments to relax.  Its main effect during childbirth is to cause the joints of the pelvis to become looser, meaning there is more room for the baby to pass through.

However, relaxin is also released during our menstrual cycle, beginning around day 14, so our bodies are prepared in the event that we do become pregnant.

And with more relaxin circulating in our bodies, our muscles and especially our ligaments are going to be a little more slack, meaning there is more risk for injury.

This article from BBC News outlines a few studies that have shown women are more likely to experience injuries in the second half of their menstrual cycles, due to higher relaxin concentrations.

***

I have definitely noticed this going on in my own body.  For me, it begins 3-4 days before I get my period, right when I get my other PMS symptoms.  All of a sudden, I’ll feel my SI joints start to move around a lot, because my ligaments are not holding them in place as tightly.

There were times when I’d have to promise myself, in those days leading up to and during my period, that I wouldn’t judge my overall progress by the way things were at that moment in time.  (I’m sure my plummeting mood didn’t help with my gloomy outlook, either).

I’d really have to talk myself through, and say, I know things really seem that bad right now, but your joints ARE doing better.  Just wait a few days and see.

And then, sure thing, once my period had passed, things would go back to normal (or at least, back to baseline anyway).

***

Since my SI joints are doing better now, I don’t notice quite the same extreme fluctuations in my level of function.  I have more muscle strength to hold things in place, and my ligaments have had more of chance to heal after my original injury.

However, every month, I can still feel things become a little looser, and my SI joints seem to have a wider range of motion (and not in a good way).

I also notice my hormonal fluctuations impacting other joints in my body as well.  I particularly notice it in my knees and in the joints of my fingers.  (That sounds totally random, but interestingly enough, finger joints were one of the joints that doctors studied, according to that BBC News article).

***

So, for my female readers, this is something to be aware of.

If you are struggling with chronic pain, it might be worthwhile for you to track how your menstrual cycle impacts your pain.

I honestly was totally unaware of the connection, until that doctor suggested I start paying attention.

Once I knew, it did make things a little easier.  I learned not to freak out if things felt worse during a certain time of month, and instead knew to wait, and that it would probably pass (which it did every time).

**

For more, check out this really informative article from Lindsay Matthews at Breaking Muscle on Relaxin: Facts Female Athletes Need to Know.

The BBC News article

I also just started using the Clue period tracker app.  It seems pretty easy to use so far.

Central Sensitization, Chronic Pain, Pain Science, Quotes, Resources

Christopher deCharms: A look inside the brain in real time

I’ve been writing about some heavy stuff recently, so I thought it would be a good time to share something that makes me feel really hopeful:

Christopher deCharms is a neuroscientist and entrepreneur who, along with other prominent researchers such as Dr. Sean Mackey, is paving the way towards using brain imaging to study and treat chronic pain.

deCharms founded a company, Omneuron, which has developed something called rtfMRI, or “real-time functional MRI.” 

In studies of chronic pain patients, this new technology allows researchers to see exactly which area’s of a patient’s brain are the most active, and how this activity can change from moment to moment, depending on what the patient is instructed to do.

We know that the brains and nervous systems of chronic pain sufferers function differently from people who aren’t in pain– now this technology allows us to see how.

deCharms explains,

There have (historically) been three ways to try to impact the brain: the therapist’s couch, pills and the knife. This is a fourth alternative that you are soon going to have.

We all know that as we form thoughts, they form deep channels in our minds and in our brains. Chronic pain is an example. If you burn yourself, you pull your hand away. But if you’re still in pain in six months’ or six years’ time, it’s because these circuits are producing pain that’s no longer helping you.

If we can look at the activation in the brain that’s producing the pain, we can form 3D models and watch in real time the brain process information, and then we can select the areas that produce the pain.

Just as there are parts of the brain which can produce the experience of pain, there are also parts of the brain which can “turn down the volume” on pain, so to speak.

There are a few mechanisms by which the brain can inhibit pain signals.  One powerful way is through the production of our own endogenous opiates– chemicals which our own brain produces to block pain.  (These chemicals are what opiate medications such as Percoset and Oxycontin are trying to mimic).

Omneuron is researching ways which patients can learn to “turn up the volume” on the parts of their brain which inhibit the sending of pain signals.

As deCharms explains in this additional interview:

There is a built-in dial in the brain, that, when you turn it up… pain goes away.  So we hope that when we can teach people to control these systems, to control this dial in the brain, they can make the brain go down.

He explains that many of his patients report feeling empowered simply by seeing images of the pain activity in their brains on the screen.  For so long, they had felt as though the people in their lives didn’t believe them about how much pain they were in, and there, on the screen, was proof.

***

I really find this topic to be so fascinating, not to mention inspiring.

If you’d like to know more, I actually have a whole section within my “Resources” page on how fMRI is being used to study and treat chronic pain.  (I have links to a bunch more articles, as well as some interesting talks by other prominent researchers).

Hope you’ll check it out!

Central Sensitization, Chronic Pain, Fibromyalgia, Nervous System, Pain Science

Central Sensitivity Syndromes

A really important concept for anyone struggling with chronic pain, fibromyalgia, or other chronic health conditions is the idea of “central sensitivity syndromes” (CSS for short).

The term refers to any kind of condition that can be caused by a change in the way the nervous system processes pain (a process known as central sensitization).

I have described central sensitization in more detail in other posts.  (Here, I will just say that sometimes, the nervous system can begin to function differently after physical injury or trauma.  Basically, the more chances our nervous system has to “practice” sending pain signals, the better it gets at it).

Central sensitization is why you can still have pain after an injury is healed.  Your tissues are no longer damaged, but your nervous system has not forgotten the “memory” of the pain.

So… how does this happen?  What kinds of injuries or traumas are necessary to cause it?  And what symptoms can it cause?

The answer to is: central sensitization can happen in many different ways, and sometimes the things that trigger it don’t have to be very “severe.”  And there can be a wide range of symptoms, in different parts of the body.   It can be different for each individual person, depending on genetic makeup, co-existing health conditions, psychology, and, of course, the event that triggered it.

This is why the term “central sensitivity syndromes” is so helpful– there are so many health conditions, which on the surface might seem very different, yet all have central sensitization as their root cause.

***

To my knowledge, the term was first coined by physician and researcher Muhummad Yunus, who, along with his colleagues, conducted an important 1981 study linking fibromyalgia to other health conditions caused by nervous system sensitization.

Since then. Dr. Yunus has contributed to a really impressive list of studies establishing central sensitization as the likely cause of a wide range of conditions, including:

  • fibromyalgia
  • irritable bowel syndrome
  • temporomandibular disorder (TMJ)
  • restless legs syndrome
  • chronic fatigue syndrome
  • complex regional pain syndrome (CRPS)
  • chronic pelvic pain
  • migraine

Central sensitization can create different types of symptoms, from one person to another, in different parts of the body.   This one common cause can have many different manifestations.

Additionally, as Dr. Yunus writes, central sensitization can occur when someone has another health condition which creates pain and stresses their nervous system.  Central sensitization can be a resulting secondary factor in conditions such as:

  • rheumatoid arthritis
  • systemic lupus
  • ankylosing spondylitis
  • osteoarthritis
  • diabetes mellitus
  • inflammatory bowel disease

Basically, anything that stresses your nervous system out and gives it a chance to practice sending those pain signals can cause it to become better at sending those pain signals.  So even if central sensitization isn’t the primary cause of your illness, over time it can become a secondary factor.

***

The good news, however, is that the effects of central sensitization don’t have to be permanent.  It can also get better.

That’s what my blog is all about– helping people find out about the ways I, personally, have managed to reduce the effect central sensitization has upon my life, as well as raising awareness about new avenues of research.

What helped me the most is an approach to physical therapy known as pain neurophysiology education.  However, there are other forms of treatment out there, including medications some people have found to be effective for the effects of central sensitization.

***

I’m going to write more on central sensitization and its treatment, as well as the work of Dr. Muhammad Yunus, in the future.

I hope this post was helpful for you, and that you stay tuned!

Creative Writing, My Story, Treatment Approaches

The piece that didn’t fit

When I was young, all I wanted was to fit in, to be perfect.  To do what adults expected of me.  I never had a single cavity, I never missed the school bus.   I was always teacher’s pet.

Then, when I hit adolescence, the reverse.  My depression; my eating disorder; I couldn’t function, couldn’t fit in to any kind of mold.  I missed school; my grades suffered.   A few teachers saw who I really was, but in general, I don’t think anyone would have considered me teacher’s pet.

I (mostly) came to terms with these issues…. right around the time my health issues began.  So, really, I have always had trouble fitting in to some kind of external mold; to meeting the expectations of those who’ve never known what it’s like to physically suffer.

Even as a patient, I have come up against the feeling that somehow, I am not meeting someone else’s expectations.  My once-favorite doctor once grew frustrated with me for still saying I was in so much pain, and told me she had patients with much worse problems than me, and basically told me not to come back to her office.

(I have been meaning to write more about this doctor, because it’s from reading copies of her office visit notes that I first came across the term “central sensitization.”  Yet she never actually said the phrase to me– instead, she was one of the people who told me there were psychological explanations for my pain, and kept telling me to go see a therapist.  It’s so strange–she knew the term, but didn’t seem to fully understand what it meant).

I had a similar experience when I was “lucky” enough to become a patient at a well-respected pain management clinic run by a major Boston hospital.  I ran into conflict, right off the bat, with the physical therapist who ran the exercise sessions, because she didn’t agree with my rational for wanting to do a warm-up before exercising.

This is something my high school running coaches– in fact, even my gym teachers, all through school– had always drilled into my head.  Do a warm-up, or you’re much more likely to get injured.  Yet here I was, at a place for the already-injured, having someone tell me that I was “causing problems,” simply for wanting to take care of my body.  (There wasn’t enough time for me to do a warm-up and get through all of my exercises… which I later came to understand that she probably needed me to do, in order to get reimbursed by my insurance company).

So basically, from the age of 14 on, I have been familiar with the feeling of not meeting other people’s expectations… of not even fitting into any kind of mold they can understand.

But you know what?  I’m okay with it.  Because it’s this constant feeling of not fitting in, of being forced to look outside of what’s conventional, that has driven me to discover new things.

How long would it have taken me to discover the term “central sensitization” on my own, if I hadn’t decided to take matters into my own hands and request copies of my records?  I have no idea.  I do know it never came up in any of my science classes, except for about a 5-second mention in one of my neuroscience lectures.  (And if I wasn’t already familiar with the term, I might have missed it).

I do believe that I will have the power to help people someday as a physical therapist, and I think my specialty, if you can call it that, will be to help the “hard cases.”  The people who couldn’t be easily helped, and who, like me, didn’t fit easily into some kind of mold.

And it’s my experiences of not fitting in, of being forced to look “outside of the box” for answers, that will allow me to empathize and help them the most.

…my seeming failures were really just weird-ass portals to something beautiful… all I had to do was give voice to the story.

I am including this amazing talk by the writer Lidia Yuknavitch above, because ever since I discovered it the other night, I haven’t been able to stop listening to it, and she really inspired me to get my thoughts down into this post.

In her talk, Lidia describes how the many “failures” in her life were actually just the beginning of something new… it just took her time to begin to see them that way.  And, she says, if she had given herself permission to “belong,” to believe in herself sooner, she might have been able to recognize them for what they were sooner.

She has so many great quotes– you really have to watch it for yourself– but here, I want to make sure I record:

There’s a myth in most cultures about following your dreams. It’s called the hero’s journey. But I prefer a different myth, that’s slightly to the side of that or underneath it. It’s called the misfit’s myth. And it goes like this: even at the moment of your failure, right then, you are beautiful. You don’t know it yet, but you have the ability to reinvent yourself endlessly. That’s your beauty.

If I could, I’d go back and I’d coach myself. I’d be exactly like those over-50-year-old women who helped me. I’d teach myself how to want things, how to stand up, how to ask for them. I’d say, “You! Yeah, you! You belong in the room, too.” The radiance falls on all of us, and we are nothing without each other.

That’s it, right there:

The radiance falls on all of us, and we are nothing without each other.

My Story

Things you can ask me about

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Something you might not know is that I spend a lot of time answering emails from readers looking for advice on their own health issues.  I do my best to offer advice and get people pointed in the right direction.  It means a lot to me to feel as though my experience has served a purpose, and that some good can come out of what I’ve been through.

I’ve been meaning to write some more personal posts telling about my stories with various running injuries, compartment syndrome, etc.

However, in the meantime, I thought I would just offer this general list of health conditions I feel I can offer some advice on.

I want to be clear about the fact that I do not currently possess any medical certifications.  But I can offer you advice as a fellow chronic pain sufferer and as a friend.  (And my physical therapy prerequisites mean I have a better understanding of medical terminology than the average person).

Basically, what I can do is relay lessons from my own experience to help try to get you pointed in the right direction, and help you try to find the right people who do have the necessary certifications to help you.

Some of the conditions I’ve listed below are actually not things I’ve experienced personally– they are either topics I’ve become knowledgeable about through the course of my own research, or health conditions experienced by my own family members/friends.  (I enjoy helping people, so I tend to naturally fall into the role of “coach”).

So, with that being said, here is a general list, with links to my writing or further resources when relevant:

Chronic pain/central sensitization

Fibromyalgia (physical & mental symptoms)

Sacroiliac joint dysfunction

CRPS

Biomechanics (how to set up your life better to reduce pain)

Running injuries (muscle strains, shin splints, etc.)

Compartment syndrome

Chondromalacia patella

Ovarian cysts/ovarian torsion/abdominal surgery

Pelvic pain/pelvic floor disorders

Digestive problems (irritable bowel syndrome, fibromyalgia-related, various tests you can ask your doctor for)

Aquatic therapy

***

Because I am not a medical professional, there is a limit to the extent I will be able to provide support.  I will let you know when there is a question I do not feel qualified to answer.  Really, my goal here is to help you determine your next step, and help you get moving on your way again.  And it means a lot to me to be able to do so.

You can email me at sunlightinwinter12@hotmail.com, or check out the rest of my contact info.

Hope to hear from you!

Chronic Pain, Creative Writing, eating disorders, Favorites, My Story, psychology

Fighting a health issue without judgement, for the first time

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They say one of the worst things a blogger can do is to begin all your posts with an explanation of why it’s been so long since your last post.

Normally I’m able to stop myself from doing this, but I’m going to let myself do it this time, since it’s actually relevant to what I want to say.

The reason I haven’t been on here in so long is I had a crazy past few months dealing with the most insane dust and mold allergies.

I had been living in a super old 1700’s farmhouse that had not been well-maintained.  A good friend had been living there for years and needed a roommate, and the rent was super low.  So I moved in with him, following my return from California.

I had never really had significant allergies before, beyond suffering from pollen one or two weeks out of the year.

But this winter, it came out of nowhere.  I thought I was sick at first, and had to take antibiotics for a sinus infection, but even once that was treated, some of my symptoms never went away.

Thankfully, my primary care physician referred me to an allergist (even though I was convinced I wasn’t the kind of person who had allergies) and sure enough, I tested positive for dust and mold allergies.

By then, things had gotten so bad that I could barely sleep– I was so congested it was hard to breathe.  I’d wake up feeling like I couldn’t get enough air.  My sleep schedule got all messed up, and I started relying on things like Benadryl and Nyquil, which of course left me exhausted the next day.  And during the day, dealing with my symptoms felt like a full-time job.

In the midst of all this, I realized I had to find a new place to live– a pretty intense and financially-involved decision to make when you know you’re not in your right mind.

Somehow it worked out.  It took another month, but I finally ended up moving, and am gradually doing better (my allergy doctor said it might take a few weeks).

I’m a little upset at how much time I lost on this problem– really, I wasn’t able to be productive for much of the winter, until things finally came to a head in March.

However, if I look back, I can see that some good came out of this, in a way.

This was really the first time I experienced a health issue and pursued treatment on it without stopping to judge myself, or the way I was handling it.

***

I mentioned in a previous post that, in the past few years, I came to realize that many of the same issues that contributed to my eating disorder were also affecting the way I handled my health issues.

Specifically, in an unconscious way, I was afraid to devote too much time or effort to “fixing” something with my body, because I was afraid it would trigger the same obsession that caused me to starve myself while running 40+ miles a week, until I eventually developed compartment syndrome.

With issues such as my chronic pain, and then my SI joint issues, I only tried to fix the problem to a certain extent.  I’d go see a specialist, I’d go to PT, I’d do my exercises.  But then I wanted to stop, be a normal girl, focus on other things.

I finally identified this pattern 5 years into my SI joint problem.  I realized, you know what, this problem has completely taken over my life anyway.  It doesn’t really make sense to try to “limit” the time I spend trying to fix it, because things are so limited for me right now anyway.

So I gave myself permission to do whatever it took, and started my SI joint blog as a way to keep track of the things I researched.  And it was during my research for this blog that I first came across another patient saying constant chiropractor adjustments made her worse.  That planted the seed in my mind, and I ultimately came to realize that the same was true for me as well.

With my allergy stuff… I got right to it.  I scheduled an allergy test, and when the first office of the sprawling medical practice couldn’t fit me in for over 6 weeks, I called around until I found an opening in 2 weeks.  I made all the lifestyle changes my doctor recommended, and then some.  And then I moved.

Of course, it was a little easier to proceed without judgement from others in the context of allergies.  After all, we don’t suspect people of “making up” allergies for some kind of gain. You can’t get workers comp for it, and there aren’t any super fun drugs.

But even so, I felt that the biggest difference this time around was in my mind.

I had it in my head that I was a “normal” person, experiencing a problem, and I did what it took to get better.  I didn’t waste time on “whys” or “what ifs.”  I didn’t ask if I deserved to get better, or worry about what the doctors might think of me.  I simply had a problem, and I did what it took to find a solution.

When I first started having chronic pain at nineteen, I thought I deserved it…  I’d starved and abused my body, even though I should have known better, and that the pain and the compartment syndrome and maybe even my SI joint problems were the price I had to pay.

Now, at age 32, I never felt that way about my allergies on any level… I just saw them as a crazy fluke of biology, a random stroke of unfortunate genetic luck that was completely not my fault.

So… it’s interesting to feel this way.

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Does anyone out there know what I mean?

Have you ever come to realize that your own negative beliefs and fears about yourself were affecting the way you pursued treatment?

Don’t let them.  Believe in yourself– believe that you are normal, and that answers are out there.  Because they are.

Creative Writing, My Story, Quotes

The things I don’t have easy answers for

My friend C. once wrote that vulnerability does not always have to mean a state of weakness:

In order to function in my everyday life, I have to be vulnerable and explain why my body “doesn’t show up” when it needs to and that sometimes exposes me to feelings of powerlessness. At the same time, it exposes me to my own courage, resiliency, and even to these words.

Think about that. Isn’t that something radical and beautiful? Being vulnerable is a state that I am placed into because of my body but it is also a position of boldness.  It is the same condition that allows you to love, explore and seek out meaning in your life, and relate to each other’s humanity. That’s not weakness; rather, that’s power.

Can being forced to rely on others actually be a good thing– something that forces you to connect?

This question struck a chord within me, after a lot of the things that have happened in the past few years.

***

You may have noticed that I say much more about science than personal stuff on this blog.  Partly, of course, that’s because it’s public, and to say too much about my life would be terrifying.

But at the same time– despite how complicated it is, and how many classes I had to take to get to this point– the science is actually much simpler to me, compared to trying to manage relationships when you have chronic pain.

During the five years that I struggled with sacroiliac joint dysfunction, I lost friends.

Looking back now, I realize that it probably wasn’t just because of my physical issues.  It probably would have happened anyway–my health problems were just the catalyst.

***

I was 25 when I first developed these problems.  I have written elsewhere about how terrified I was; how confused.  I had just gotten answers for my chronic pain problem, and now, all of a sudden, I had this pinching sensation in my low back and I could barely walk.

For a while, everything went out the window.  I couldn’t climb stairs; it hurt to climb into the shower.  At times, my physical appearance slipped.

I went to meet friends for coffee in sweatpants.  On Saturdays, I had to wait until the very end of the day to use my gym pool, because it was filled with swim lessons the whole rest of the day.  This meant I’d show up at social events late, sometimes with my hair wet.

I had to plan ahead. Sometimes it hurt so much to drive that I preferred to take public transportation.  I wasn’t always the easiest person to coordinate with; I admit it.

Some of my friends were happy to stand by me, and our relationships were unchanged.  Yet, with others, it seemed I could no longer keep up, and I stopped getting invited to things.

The most painful part of this that it wasn’t just my casual friendships that slipped away.

***

Instead, some of my most cherished friendships turned into a scenario where instead of a friend, I started to feel like an unpaid therapist.  I’d be available to listen for hours, when the other person needed someone to talk to about her problems on a Sunday afternoon, or a weekday evening.   On Friday or Saturday night, I wouldn’t actually be invited out.  But sooner or later, I knew that next phone call for help would be coming.

To an extent, I think it comes down to the amount of strength people have to offer.  As the saying goes, “People cannot give you something they don’t have themselves.”

I noticed it’s the people who were the most unhappy in their own lives, the ones who felt they were under the most pressure to conform and live up to superficial standards, that were the most likely to let our friendships be affected.

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found via The Mind Unleashed

Over time I came to realize it wasn’t a reflection on me.  Yes, maybe there were a few things I could have done differently to be easier to make plans with, but my real friends took it in stride.  They stood by me, and were still willing to be seen in public with me, even if (God forbid) I was wearing flats and I wasn’t wearing makeup.

Now I understand that these things just happen.  If a friendship couldn’t withstand my having physical limitations, it wasn’t meant to be.  What it really means is that person, at that moment in time, did not feel secure with her own life, and did not feel she was in a position to have anything to give.

As my friends and I hit our late 20’s, there was just something about the age of 30 approaching.  We all felt the pressure looming over us: the end of our free, hippiesh 20’s.  The growing pressure to find a career we were going to stick to for the rest of our lives.  Find a husband.  Settle down.  Have kids.

As one friend put it, it was almost as though 28 and 29 were the age we realized for the first time that, in fact, someday we were going to die.  We’d always known it in the abstract, but now we were beginning to understand that we weren’t special; we were just like everyone else.  (Looking back now, I know this sounds a little absurd.  But somehow it was a truth that hit us all, at the same time).

In the face of this growing pressure, people changed.  I think it’s worse for women.  In fact, I know it’s worse for women.

So I don’t take it as a rejection; I take it as a sign that my friends weren’t okay with where their own lives were at.  When you’re able to be there for someone else, and put your own needs aside, it means you’re strong.  And I am grateful that, despite everything– despite my ever having dared to create the spectacle of showing up in public without makeup– I am still the kind of person who has the strength and security to be there for other people.

uma thurman i-still-love-the-people-ive-loved-even-if-i-7746766

Ultimately, I am the one who chose to walk away from these relationships, although it’s not like I really felt I had much of a choice.

It just got to the point where the dissolution of the friendship seemed inevitable.  I saw the writing on the wall and decided to focus my efforts on the people who were there for me; the people who had something to give.

With my extra free time, I reached out to people I’d been meaning to get to know better, but had always been too busy.

I discovered that acquaintances I’d known for years were actually amazing people, and some of them became my new best friends.

once you realize your worth stop giving discounts

Honestly, I was sad for a long time, and it didn’t all come together overnight.

It took a while for my new friendships to solidify.  I had to wade through a period of loneliness first; it took time to reach out to new people and build new relationships.

And sometimes I wanted to run back.  But I didn’t.  There was no going back.

Over time things came together.  I can honestly say now that for everything and everyone that I’ve lost, I ultimately found something new, and something that fit me better for this stage of my life.

But It took time.

I still have the positive memories of my old friendships.  I’ll always be grateful.

Now, I understand that life isn’t perfect, and people will usually hurt you in an attempt to heal themselves.  It’s because they feel like something is missing, and they don’t know what to do to find that missing piece.  It isn’t personal.

But it is okay.

I will always have the good memories.  I can still love the people I loved, even if I had to walk away in order to make room for something new.

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Central Sensitization, Chronic Pain, Favorites, Fibromyalgia, Nervous System, Pain Neurophysiology Education, Pain Science

How Clifford Woolf discovered central sensitization (and why you shouldn’t blame yourself for chronic pain)

You’ve probably noticed that my blog is all about central sensitization— the process through which the central nervous system can change over time and become more sensitive to pain.

Personally, I find learning about central sensitization to be empowering.  I spent years trying to find an answer for the pain and other symptoms I felt, only to be told by various medical professionals that my problems were in my head, the possible result of depression or anxiety.

I knew, deep down, that this just wasn’t true.  It’s not that I was unwilling to believe that mental health factors could play a role.  But it just didn’t resonate. I didn’t feel anxious or depressed.  I felt like I was in pain, and wanted it to stop.

That’s why, when I first heard the phrase central sensitization and looked up what it meant, I was so struck.  Because there was a way to explain why my nervous system was acting funny, and causing me to feel things other people didn’t feel, that wasn’t based on my mental health.

So.  How do we know about central sensitization?

A neuroscientist named Clifford Woolf discovered the process of central sensitization back in the early 1980’s.  In 1983, he published a well-known and often-cited letter to the respected scientific journal Nature outlining his theory, entitled “Evidence for a central component of post-injury pain hypersensitivity.”

Although the scientific community didn’t quite accept Woolf’s ideas right away, ultimately he ended up sparking a new wave of research, and his theory of central sensitization is generally accepted today (although much more work still needs to be done).

Basically Woolf ended up discovering central sensitization more or less by accident, in the process of researching something else.

(Now, I’m not a huge fan of animal research, so I don’t love what I’m about to describe to you.  But I am grateful for the results, so for the sake of understanding, here we go).

Woolf was studying the “withdrawal reflex” that caused the rats to jerk their paws away from a painful stimulus.  He tested them over and over again, over the course of a day, and he noticed that he started to get different results at the end of the day.

After a long day of testing, the same rats were much jumpier.  It became much easier to trigger their withdrawal reflex.  They would jerk their paws away even at things that shouldn’t have been painful, or wouldn’t have caused them to react that way at the start of the day.

Woolf realized he was seeing completely different behavior in the same rats, and under the exact same conditions.  Only one thing had changed: their nervous systems had been “practicing” the withdrawal reflex all day long, and were now responding to stimuli differently.  He hypothesized that somehow, the central nervous system had changed to become more responsive to pain, after exposure to repeated stress.

Woolf’s theory was pretty revolutionary at the time. Generally speaking, the scientific community believed the central nervous system always processed pain the exact same way, like a simple machine performing the same task over and over.  Woolf’s discovery turned all of that on its head, by suggesting that actually, the central nervous system can be changed and shaped by its experiences.

His ideas were not widely accepted right away, but his work, along with that of others such as Muhammad Yunus, has now formed the basis for a wide body of research on central sensitization and chronic pain that’s going on today.

***

We do still have a long way to go.  Much more research is needed, not to mention new treatments to be based on that research.

However, the reason I wanted to go into detail and describe the rat experiment for you guys is this:

If you have chronic pain/fibromyalgia, people are going to tell you it’s in your head.  Unfortunately, even sometimes people who have a passing understanding of central sensitization will imply tell you it’s in your head.  In my experience, people can understand the concept of the nervous system working differently in principle, yet still think it must somehow be related to mental health.

So this is what I want you to know: central sensitization happens in rats.

Your thoughts, beliefs, and fears about pain, and your mood– those can all play a role in your experience of central sensitization/chronic pain.

But those things don’t cause central sensitization, any more than they did in the rats in Clifford Woolf’s lab.

Remember that the next time you feel someone isn’t taking you seriously.  You can’t create your whole experience of pain by “overthinking” any more than a rat can overthink something.

In some ways, your nervous system is its own being.  There are aspects of your nervous system which have way more in common with a rat nervous system than with your conscious, human mind.  (I know, think about that!  That’s evolution for ya).

So if you have chronic pain, don’t blame yourself.  Don’t scold yourself for overthinking; don’t wonder if you’re crazy.  Your body is just doing what it was always going to do, in response to whatever stress/pain/injury you experienced.

There are ways to move forward– promising ways, which I talk about on this blog.

But to me, the first step is to stop blaming yourself.   You are okay.  You didn’t cause your own central sensitization, any more than the rats caused what Clifford Woolf observed in the lab.

Neil Pearson, Nervous System, Pain Neurophysiology Education, Pain Science, physical therapy

A successful experiment with acute stress

In my last post I outlined some ideas from Neil Pearson on how to stress our bodies in positive ways, in the hopes of re-shaping the way we process pain.

I continued my experiment at the gym last night, and I think I stumbled upon the beginnings of what something like that would feel like.

Normally, when I go to the gym, I’m pretty much there to use the pool.  It’s the one form of exercise I never have to “pay for” in any way afterwards, in terms of pain or stressing out my SI joints.  I usually just do my warm-up and cool-down in the pool as well.

So usually, I don’t hang around–  I’m just in and out.  I head straight for the pool and then make an immediate beeline to shower and leave because, well, I’m freezing.  It’s fun, but it’s also kind of rushed.  Some days I feel like kind of a robot.

With the lessons from Neil Pearson’s post in mind, I decided to switch things up a little bit.

***

Last night, instead of heading straight to the pool, I first stopped by one of the empty dance studios. I had it all to myself– a big room with a smooth, polished wooden floor and one wall that was all one big mirror.

I had my headphones on, listening to a playlist of music I really liked.  And I picked up one of the yoga balls, and just started dribbling it back and forth, to the beat of the music, like it was a basketball.

Now, if you think about this in terms of exercise, it’s not particularly hard.  It doesn’t require a ton of strength, and I wouldn’t technically call it cardio.

But, if you think about it in terms of the nervous system, it actually was a bit challenging.

I don’t play basketball.  I don’t think I’ve tried to dribble a ball in years.  It’s awkward to try to dribble a giant yoga ball… but it’s kind of fun.

However, it does require quite a bit of coordination, especially as some of the songs on my playlist had pretty different beats from each other.  With each new song, I had to completely switch up my rhythm.

I ended up getting really into it, dribbling and jamming out to my tunes for about 45 minutes.  And I think I managed to reach exactly the kind of state of “acute stress” Neil was describing in his post.

It was a difficult new activity for me, but it was fun.  It was challenging, but in a controlled way.  I felt as though I was pushing the limits of my nervous system, in terms of coordinating movement patterns that were unfamiliar to me, while at the same time limiting the overall stress to my system.  (In fact, I think I probably was reducing my overall stress at that point– it was the end of a good day, I had all the time in the world, and I really love my music).

I think this is the kind of activity that, when performed regularly, could have a positive impact on reshaping the way the nervous system regulates pain signals.  It’s “distracting,” in a healthy and fun way.

Obviously these would be topics for further research, but I think two additional components of what I did, which add to its helpfulness, are

  1. That I found the activity enjoyable, and
  2. That I was listening to music, which on its own can also reduce our perception of pain

This is what I find so fascinating about Neil’s approach to chronic pain treatment— an activity can be therapeutic not just because it makes us stronger, or increases our endurance, but because of its impact on the nervous system.

It’s okay to treat pain and the nervous system as your top priority, not just as a side effect or the means to an end of another exercise program.

***

I find the concept of treating nervous system directly to be so fascinating, and I hope you do too!  If you want to know more, I would definitely suggest checking out more of Neil Pearson’s work.  And, as always, let me know if you have any questions or comments!