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 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:

Out with the old: Saying goodbye to 90’s nutrition advice

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In the spirit of New Year’s resolutions and goals, I thought I’d share this really great article I found recently on nutrition “myths.”  

Fitness Magazine interviewed registered dietitians on how their perspectives on healthy eating have changed over time.  These RD’s talk about some of the conventional wisdom regarding nutrition coming out of recent decades, how it influenced them, and how a lot of it turned out to be wrong.

***

As a teenager struggling with body image issues in the late 90’s and early 2000’s, I encountered much of these same nutrition trends myself from magazines and books, as well as from the nutritionist I saw for help with my eating disorder.

I remember– I was terrified of fat.  When I went out to eat, I insisted that I found mayonnaise and salad dressing “gross,” because I had read that cutting those things out was the best way to cut calories.

Each day, I only ate a certain number of calories at set times, and carefully adjusting the amount depending on the number of calories I had burned through exercise.  My treat at the end of the day would be some kind of “low-fat” dessert or “snack pack” of cookies.  Most of the food I ate was low fat– Healthy Choice ham for my sandwich at lunch, with low fat cheese.  Lean Cuisines for dinner.

It is so strange, now, to realize that so many of the “rules” I based my life around were, in fact, actually all wrong.

One of the quotes I related to the most in the article came from Lauren Harris-Pincus, M.S., R.D.N., owner of Nutrition Starring You.  She says:

“When I became a dietitian in the mid 1990s, we were in the middle of the fat-free craze. Bagels, fat-free frozen yogurt, and Snackwell cookies were all the rage. Our hospital diet materials recommended limiting nuts because of their fat content and limiting shellfish because of their cholesterol. Now, we know much more about the health benefits of fats derived from nuts and seeds, and we’ve also learned that high-sugar, fat-free foods are not nutritious choices. Unfortunately, people have long memories and to this day, so many of my patients are afraid to eat shrimp if they have elevated cholesterol. It’s exciting to work in a field with ever-evolving research.”

Yes– it absolutely was a fat-free craze.  Fat-free dressing, fat-free cheese.  Sometimes I’d even come across bread that was labeled fat free.  I always thought I was doing something great for myself when I reached for that label, not understanding that my body actually needed fat in order to function.  

I also really related to this quote from Emily Cope, M.S., R.D.N., Owner & Consulting Dietitian at Emily Kyle Nutrition:

“When I was in college, I remember being obsessed with those ‘100-calorie packs’ of cookies and crackers. I thought they were a great option—less than 100 calories for all of those tiny wafers!! Little did I know those calories were being replaced with chemicals and unnatural ingredients. These days, now that I am older and wiser, I am less concerned with calories and more concerned with the quality of my food—whole fruit and nuts are my current go-to snacks!”

Yes.  Unfortunately, that was so me as well.  I felt comfortable with pre-packaged, processed foods because they were marketed for weight-loss, and it was easy to know how many calories were in them.

***

These days, I have come so far in terms of my outlook to food that sometimes I almost forget that I ever had a problem.  (After all, I’ve had to deal with so much else with my body over the intervening years!).

I will talk more about how I overcame my eating and body image issues in future posts.  But for now, let me say that these days I think I live and eat pretty holistically.  I don’t get caught up on the idea of depriving myself of something if I really want it; I don’t count calories.  

And the funny thing is, now that I allow myself to eat whatever I want, I find that most of the time, I generally tend to crave pretty healthy choices.  Now that I’m actually well-nourished, I find myself more in touch with how my body responds to different foods, and I tend to gravitate towards the foods that make me feel best.

I’m sharing this with you for a few reasons:  

A) There’s some really good advice contained in this article, and

B) It serves as a reminder to me– and maybe to you– that things can get better.  Even if you have a problem that goes on for years; if you feel trapped and you truly seem stuck, things can change when you don’t expect it.

I truly hope this post was helpful to you.  Happy New Year!

An elderly woman died in a nursing home because staff refused to perform CPR

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Just heard about this horrible story tonight.  An 87-year-old woman died of a heart attack after she passed out in an assisted living facility in Bakersfield, CA.  The nurse who was on duty called 911 but refused to perform CPR, because it was the facility’s policy.

The link: http://www.latimes.com/news/local/la-me-0304-senior-dispatcher-20130304,0,43655.story

This story made me angry in so many ways.  I actually used to work in a group home for people with mental illness.  While there were a million things wrong with the way my agency was run (boy, do I have stories), even we would have performed CPR in this instance. I was a 25-year-old with a Bachelor’s Degree in liberal arts, and I knew that if one of the residents stopped breathing, I had to dial 911, get a face mask, and get on the ground.

That’s why it boggles my mind that this so-called “assisted living facility” would make it a policy for employees not to perform CPR.  Not only is it irresponsible, but it seems almost fraudulent.  People move in to an assisted living facility in part so they can receive medical assistance.  Part of what draws them in is the idea of having nurses there 24 hours a day.   Little do they know these nurses aren’t actually going to do anything.

It’s simply a case of liability.  These assisted living places want to be able to advertise 24-hour medical care– and charge people for it– without accepting any of the liability that comes with treating the elderly and the very frail.

My ex-boyfriend’s father is a firefighter, and he told me that it is common practice for assisted living facilities to simply call 911 anytime anything goes wrong.  For example, if a resident trips and falls, the staff calls 911 instead of picking the patient up and evaluating him or her.  I could understand this if the staff didn’t have medical training– when elderly people fall, it is a big deal, you don’t necessarily want to pick them up and move them right away.  But a staff with nursing certifications? They have more medical training than firefighters.  The idea that they should sit back in an emergency situation is simply ludicrous.

Who is really paying for the medical care of people who live in these places?  Well, it’s the patients themselves who pay the ambulance and hospital bills, and it’s the local taxpayers who fund the police and firefighters who rush to the scene.  It seems like the assisted living facility doesn’t have to do very much besides provide a place for people to sleep, and charge them rent money.   (I mean yes, maybe they give out medications, but I did that too; you don’t have to be a nurse).

*****

And beyond that, let’s take a look at that horrible nurse who made the call but refused to actually do anything.  I mean, what the fuck?  How could you just stand there holding the phone knowing someone was running out of air?

According to the article I read, 911 dispatchers commonly instruct passers-by with no medical training at all in CPR.  Apparently, CPR something performed by someone untrained is better than nothing.

I just couldn’t believe that story.  How could you be more afraid of losing your job than you are of letting someone die in front of you?

Now, I understand what it’s like to be afraid of violating agency policy.  During my time at the group home, I was always confused about what the “rules” were and what were expected of me.  I was confused about whether or not I would get into trouble if I screwed up someone’s medication (luckily, that never happened).  I never knew whether or not there was a minimum number of staff members that had to be on-site at a time (sometimes we took clients out to run errands or to go to appointments, and scheduling wasn’t easy).  And no one ever told me what to do if a resident ever physically attacked me.

It seemed that all I ever had to go on was hearsay.  I worked a 3-11 shift and barely had any overlap with my boss, who worked 9-5.  Most of what I believed about company policy I had picked up through conversations with my coworkers.  Even at times when I did manage to ask my boss some of my questions, instead of admitting that she didn’t know the answer, she would say “Don’t worry about it,” or “We’ll answer that when the time comes.”  I never knew what would happen if I screwed up– would I be in trouble with my agency, or with the state (who gave the agency most of its funding)?  Luckily, I was an awesome employee and never had to find out.

With all that being said, I’d like to think that if someone’s life had ever been in danger, I would have stopped thinking of company policy and just done what was right.  Besides, what are the chances that someone would be fired for trying to save someone’s life?  My guess is that, had this nurse actually performed CPR, he or she would not have faced any actual consequences.  Her supervisors probably would have taken a more human view and commended her, overlooking the fact that she “violated” policy.

*****

I have to admit, I don’t have all the facts in this case.  But I am just warning you all… be very, very careful of entrusting the care of your loved ones to strangers.  I have so many horror stories from the group home I worked at.  Some of the employees in these types of places just don’t care about other people at all.  If one of my family members or close friends ever ended up in these places, you can bet I would be there, sticking my oar in and asking questions, pretty much every day.  You just never know.

**Thanks to IanTurton on Flickr for making the above photo available.**