Who’s Got Your Back?


I originally wrote the following text as a response to a blog someone posted on Twitter. Her account of the instant, crippling and confusing nature of back pain, and the ineffective treatment we get from doctors as a result, touched my heart in a big way because I have been where she is many, many, many times. She had an episode of raging, crippling, debilitating pain and landed in a crowded ER. After 12 hours she was given a cursory examination and some pain pills. No answers to why she had this sudden, intense pain, just some pills (including Valium) most likely to move her through the endlessly revolving door of ER.

I could, in fact, write a book on the subject… and ended up doing just that in the comment section. It didn’t post because it was too long, however I thought the information was worth posting to my own blog because this is an important issue.

Some stats:

80% of Americans suffer from back pain at some point in their lives

More than 100 million suffer with chronic pain, more than diabetes, heart disease and cancer COMBINED.

In 2005, when my back first “went out,” Americans spent more than $89.5 million dollars trying to find relief from back/neck pain.

Low back pain isn’t just a minor annoyance. It is the leading cause of disability for people over the age of 45.

Despite these staggering statistics, most of us who suffer from back pain are treated dismissively in the medical establishment. Because THEY can’t nail down a black and white diagnosis or treatment, we are treated with skepticism and disregard.

We need heavy medication so therefore we must WANT heavy medication. We can’t do excessive physical activity, but we get derided for carrying all the extra weight we can’t ditch. Weight loss gets seriously sidelined with back pain. When an episode of acute pain hits we are crippled for six weeks at a stretch.

Everyone has a suggestion, no one has a cure. No one knows, not even some doctors. And this is the carousel millions of Americans find themselves on year after year.

Therefore I have decided to share my own personal journey to enlighten others on this issue by posting the following message as a public blog. Most of you who have been around may know much of it already, but I think there’s a huge difference between ‘knowing’ and ‘understanding’.

More information, more sharing, is always better in the long run.

**

My heart goes out to you because I have been in an ongoing saga with my own back health since 2005, when it went out on me the first time. I’ve always had random spasms but it had never gone “out” before, crippling me to where I couldn’t even move. I bent down to clean the lower shelves in my kitchen and it felt almost as though something snapped. I liken it to a bolt of lightning. It was instantaneous and literally took my breath away. I could not stand back up if my life depended on it. I had to hobble, bent like the letter L, toward my bedroom so I could fall sideways – breathless and unable to speak or even cry – onto the bed to suffer through the worst muscle spasm of my life.

There were no spasms. With one wrong move I was locked up, unable to function. Life ground to a halt. There was no doing anything other than lie bent like a pretzel and wait for the pain to end.

At that point I didn’t have insurance so I just gritted through the pain and depended on whatever laymen cures I could, using anti-inflammatory medication and ice to get over the initial episode. If my memory serves I was bedridden for days, depending on my husband to walk me to and from the bathroom, and my whole family to tend to my needs.

In 2006 I would get a job with full benefits (for an insurance company, ironically) so when the next episode happened (that year) I was able to go see a whole litany of doctors to “get it fixed.”

A naive notion, now that I think about it.

This second major episode happened months after I started the job, which I very nearly lost due to all the time I was unable to work trying to fix the issue. Ironic, isn’t it? You have insurance as a benefit of the work, but God forbid you actually get sick. Then you lose the insurance because you can’t work, and ultimately can’t really ever “get well.”

That pattern has repeated each year that has followed. I’ve had the X-Rays and MRIs (which is a nightmare given my claustrophobia,) taken all sorts of pills and have been to see all sorts of doctors, chiropractors and physical therapists. Regardless my back goes out at the very *least* twice a year. And when I say “out” I mean not able to function. It doesn’t just “hurt,” it cripples. When and how these episodes occur are the only variables. I have turned just an inch toward the left, which is the pain predominant side, and had my back seize up so badly I could barely breathe, much less move.

I’ve lost jobs due to being unable to show up for work for weeks at a time. I’ve been on so many drugs it would make a normal person’s head spin, which means I likewise have felt like trying to get relief from ER and Urgent Care doctors is like trying to pull teeth. They think anyone claims our level of pain must be shopping for heavy narcotics.

I guess I kind of am, but it’s not because I want the drug to get high. There is no “high,” there’s just hopefully some sort of relief. See, I am in the unenviable position of needing it to do what it was created to do: manage severe pain. Hydrocodone has been my constant companion not because I like it but because it’s one of the few pills that actually gives me a smidgen of relief. Muscle relaxers? Eh. Tramadol? Maybe. But when you can’t even move, breath or barely even CRY that higher level of relief is a godsend.

That was kinda why it was created.

Do I like being unconscious 12 to 16 hours a day? No, but what are the choices?

I don’t even take the pills as directed because if I did I’d never be able to get anything done. In the last 7 years I’ve managed to work almost consistently full time, raise kids, have a marriage, manage a home and write nine books and three scripts. This didn’t happen taking these meds “as prescribed.”

(At the recommendation of my mother-in-law I’m trying to do that now to see if I can “bounce back” a little quicker than normal. I’ve gotten down to a more manageable, and intermittent, 3-5… so I guess it was worth the week I’ve been unconscious.)

But people can kiss my butt if they think I’m shopping for drugs, or have a problem with narcotic addiction. It’s a miracle I *don’t* given that’s the go-to remedy when you tell a doctor you have excruciating back pain. Maybe if they didn’t dispense Vicodin like candy they wouldn’t have hundreds of pill-poppers flooding their ERs.

But sadly there is no cure for chronic pain. There is just management.

The worst part about it is that the pain has changed over the years. I’ve learned to compensate for the sciatica that originates more in my deep hip muscle, but inevitably that puts more strain on the upper muscles in the back. This last week I ended up in Urgent Care for a back sprain that attacked my middle to lower back on my left side. I couldn’t take a deep breath. I couldn’t rotate at all to my left. I couldn’t even find a position where the pain lessened. I was at a constant level 8 (level 10 for me = childbirth) that felt as though my muscle was a hot, sharp rock jabbing me right in my back no matter what position I was in. And turning on/toward my left? Fuggetaboutit. This episode was only second to my first in 2005.

I’ve spent so much time in doctors’ offices, clinics, ERs, etc. that I no longer run to the doc each time my back goes out. A.) I’d go broke and B.) I already know how they’re going to treat it, and unless I’m in excruciating pain it’s a complete waste of my time.

This last time proved no different. When I finally broke down and went to UC, I too was given two minute examination before I was handed scripts for heavy medication just to get me through the acute phase of the pain.

Then I get the directive I always get: lose weight. Yeah, yeah. I get it. I’m fat. But losing weight is really hard to do when any activity, like simply turning over in bed, can render me bedridden for days and weeks at a time. It’s not a matter of wanting to laze around in bed. I stay upright as long as I can, trust me. No one hates more than me that my life now has three cycles: Pre-Pain, Pain, Post-Pain.

This, in a word, sucks. You change everything about your life so that you don’t go from Pre-Pain to pain. You do what you can but you do so cautiously. You know at any minute pain could strike and your whole life will be thrown into chaos all over again. I went from walking 5-6 miles a day, four days a week, to being a huddled ball of pain that couldn’t turn to my left even if I was trying to get away from a rattlesnake.

It’s no big surprise I’ve battled depression from living with this constant pain and the limitations that come with it. I can’t live my life like I used to, when I’d tirelessly work 12 hours a day supporting myself and my family.  I’ve never been a dependent person, I financially even carried my current marriage until about 2007-2008. Though my husband would never deny me anything, I loved that I could make my own money and have a smidgen of security/independence that didn’t rely on the health/responsibility of another person.

Worse, I’ve had to make peace with allowing people to wait on me when I can’t do things for myself, which sometimes includes preparing my own meals or even walking from one room to the other (which drives me BANANAS.)

I’ve fought the “disability” stigma each step of the way. I refuse to go quietly despite what a frustrating, uphill battle it has been. People have suggested it, especially when I have gone through so many jobs, but I just can’t bring myself to concede. Accepting that fate means I have accepted I’ll never be well again. I’m not ready to commit to that idea; in fact I plan to fight it until the bitter end.

This is probably a good thing since no two doctors will agree with what’s wrong with me anyway, much less agree on how I should proceed with treatment/care.You think it’s tough getting a doctor to treat you when you need medication, try having anyone sign off on saying that you can’t work. I have had doctors threaten to refuse to even treat me because I dared to bring FMLA paperwork to a first visit. Asking for a signature felt more like asking for a kidney.

Ultimately they’re conservative, and I truly believe it’s because deep down they are clueless. They can’t say I’ll never get better because they don’t know.

 I’ve been playing back roulette for seven years now and I still can’t nail down a consistent diagnosis. One doc will say it’s a compressed nerve, another will call it a back sprain. My PT therapist said it was SI dysfunction. Back spurs, the beginnings of arthritis, you name it I’ve been diagnosed with it. The only “cure” is that I medicate through the acute phases, use therapy to get mobile again and try to lose 100+ pounds waiting for the next episode. Meanwhile I’m averaging at least three months out of each year incapacitated.

But until I lose 100+ pounds there WILL be another episode. See where this leaves me?

So I share your frustration with the system. Fortunately we’re insured. I know from experience not having insurance makes the process even that much more stressful. I have a good 10K in medical debt (at least) because of this 7 year journey and I know for sure I’m not alone when it comes to the financial burden of health cost in America. I hope you find some relief and some answers, and it won’t take you seven years – and 10K – to do it. 😦

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2 thoughts on “Who’s Got Your Back?

  1. I am Literally in the exact same situation!!!
    so frustrating. I can’t apply for jobs be ausr I am I bed at least once a week for no apparent reason, but the DR doesn’t think I am “disabled” so I take any little job that comes my way. One Dr thinks DDS, one says fused L5 , another says SI disorder, and so on.
    I’m beginning to become depressed as well, due to the fact that normally I am active with sports, kids, excercise and work, which I can’t effectively participate in.
    I continue to search and hope someone finds an answer!
    wish you well, and I totally empathize!!!

    • I’m so sorry to hear about your struggles with your back. It’s such a misunderstood condition, which is sadly compounded by the fact it is so widespread. I hope you find a compassionate provider who will stick with you until you can properly diagnose and treat your condition. **hugs**

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