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When the system fails you: living (or is it just existing) with chronic pain

“The death toll from overdoses of prescription painkillers has more than tripled in the past decade…Overdoses involving prescription painkillers are at epidemic levels and now kill more Americans than heroin and cocaine combined.”

Centers for Disease Control Director Thomas Frieden, M.D., M.P.H, referring to the 2011 CDC Vital Signs report on the epidemic.

Chronic pain affects an estimated 116 million American adults—more than the total affected by heart disease, cancer, and diabetes combined. Pain also costs the nation up to $635 billion each year in medical treatment and lost productivity.

— From the Institute of Medicine of the National Academies 2011 report, “Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research.”

I am one of those 116 millions Americans living with chronic, sometimes debilitating pain — a member of that statistic since about 2008, when I was first diagnosed with fibromyalgia by a rheumatologist. It’s one of those diseases that is poorly understood — your brain is sending pain signal perception, over sensitized reactions from places in your body where there is no injury present. So, as you can imagine, the health care system is rife with medical professionals that still think it’s “all in your head,” leaving many to suffer unnecessarily when there are treatments available.

This has been a difficult piece to write — one I would start and stop over the last six months or so because I have been on a journey to find out what is wrong with me, as my pain levels escalated and started occurring in a wide range of my joints, that felt different than say, osteoarthritis, which is wear-and-tear based, and as I’m 48, not uncommon.

From the time of my fibro diagnosis, I’ve been on various medications, working with to try to control the aches, pains, cognitive problems and such that comes with fibro. I finally hit on the combination and dosage of Lyrica and amitriptyline that seemed to keep the flare-ups fairly minimal until about 6 months ago. I was never pain-free, but it was tolerable.

When I mean tolerable, I think of the common pain scale that doctors use, with zero being no pain, and 10 being the worst pain you’ve ever experienced. My 10 is having kidney stones. I have a high pain tolerance, and have driven myself to the ER (twice!) while having a kidney stone attack, so for me a tolerable amount of daily pain is a 3-4.

Of course anyone with a constant 3-4 level pain is compromised — sleep can be poor (4-5 hours a night, often interrupted), and that only makes matters worse.

But when the new pains started causing me to have more absences from work at incredibly bad random times, I decided to go for a battery of tests. I knew something was wrong, but couldn’t attribute it to any of the conditions I already have.

June 2011

The primary care physician (PCP). I only see this doctor intermittently; I usually see my endocrinologist 3-4 times a year (I have insulin-dependent diabetes and PCOS), so she has a better handle on my labs and condition than the PCP. But for getting these labs done, the PCP is more than adequate at handling this. Lotsa blood drawn, CT, MRI, etc.

Nothing threw up a red flag until these numbers hit:

Rheumatoid Factor: +41 (normal is 0-15)
Sedimentation Rate: +46 repeated for confirmation; normal is <20.

He noted:

This is a positive test for rheumatoid arthritis. I am not sure if this explains all of your symptoms, but you need to see a rheumatologist to sort this out. So you will receive this appt in the mail.

Well, you’d think that this would necessitate scheduling something ASAP, since 1) I’m in pain and having horrible, debilitating flares, and 2) getting RA treated quickly is indicated since it’s an auto-immune disease that attacks and deforms joints, it’s incurable, and it requires aggressive treatment.

My appointment with a rheumatologist at Duke was slated for February, 2012. I thought it was a typo when I saw it. I called and asked if I could be seen sooner, and the nurse said I could be put on a wait list. Feeling defeated and tired after the rounds of tests, I just decided to wait, and lo and behold, in July I found out that I would have an appointment… on December 6.

So from the initial tests indicating the possibility of RA in June, I had to spin my wheels until December with my various health care professionals, vascillating from my general 3-4 level pain and increasing numbers of flares that would last 2-3 days that rendered me almost unable to walk, and clearly too sick to work from home.

I quickly ran out of all of my paid time off because of the increasing frequency of searing, red hot flares, and I started going in the hole, my paycheck getting docked. I am fortunate that 1) I have a job and health insurance, and 2) I have a supportive supervisor and work environment. It’s one less stressor when you’re already dealing with chronic pain.

The professional pain clinic merry-go-round

I was referred by my wonderful endo family nurse practitioner to the Duke Pain Clinic, where there are specialists who deal with chronic pain patients all the time (there’s a problem with this; more later). It’s divided into the physicians on one side, and medical psychologists on the other.

It’s actually a good model in theory — chronic pain can be managed (but usually not eliminated) by alternative approaches that reduces the need for pain medication. I was seen by one of the doctors there and referred to the other side to try biofeedback.

Biofeedback is the process of becoming aware of various physiological functions using instruments that provide information on the activity of those same systems, with a goal of being able to manipulate them at will. Processes that can be controlled include brainwaves, muscle tone, skin conductance, heart rate and pain perception.

For instance, the med psych side also deals with patients with phantom limb syndrome, which is, again, your brain misfiring signals so a person perceives pain in a limb that no longer exists — the pain is real; biofeedback has been shown to help reduce the pain and rewire the brain’s misguided functioning over time. Guided relaxation and meditation skills are also taught in this area of the pain clinic. Acupuncture is also an alternative treatment that has brought relief to many people.

What can I say about my experience at this clinic? On the clinical side, it was a horrible experience. The doctor I had (and he’ll remain nameless), as I’m sure many of the doctors there, clearly sees a lot of patients who are malingering in order to obtain opiod prescription meds because they are addicts. His level of skepticism manifested itself in an aloof and unsympathetic interaction as I described how often I was in debilitating pain. In fact, when I first went to the clinic, there were signs on the door that said “there is no guarantee that a patient will receive pain medications.” I didn’t give it much thought when I went in, but it became all too clear why the sign was up after a few visits.

Anyway, the visit with this doctor was brief – less than 15 minutes – and since all of my med records are already in the Duke system and digitized, he had access to everything prior to my visit, though he seemed, unsurprisingly, not well informed about my medical history. After years of going to doctors, I know to come prepared with a list of questions, surgery and lab history, etc. because of the limited time I have with them. My endo and FNP know me so well that I trust they will know my file, but anyone else, I’m prepared to go through my whole health history (again).

So during my short session with this doctor, I informed him that the only thing at this point that helped at all during an acute flare was taking some of the pain killers I had been prescribed at the ER for a kidney stone attack in May. At that time I received 30 hydrocodones, of which I took about 4, and put the rest in the fridge. Opiods are effective, but I can’t take them for more than a day or two during a flare; and they make me too loopy to function at work or drive, thus the supply I had lasted several months; I even took to cutting them in half, just to take on the nights when the pain was so great I couldn’t even have the sheet touch my feet.

It was apparent that this pain clinic doctor heard this and his “drug seeker” alarm went off, and there was no discussion of prescribing anything, since opiods are not indicated for the treatment of fibromyalgia, the only confirmed diagnosis that brought me to the clinic in the first place. I told him that I had no idea why the pain killer brought me some relief, since it was not indicated for my condition, but nothing else had helped. I was, however, interested in his referral to try the biofeedback and other pain management techniques on the other side of the clinic – anything that would help I was willing to try. So I set off for six weeks of visits to see how well I could reduce the pain.

Yes, I’m an optimist.

Anyway, on the med psych side, they do a great job of sussing out the drug seekers, evaluating the mental state/health of patients to customize a program, giving new patients a series of interviews and written assessments. I don’t have a family history of alcohol or drug abuse (lord, I’m so square that I’ve never taken illegal drugs, drink rarely, and have never smoked anything). That’s probably a good thing considering how many chronic illnesses I do have.

What I learned from biofeedback and guided meditation:

  • I can control my day-to-day 3-4 level pain to an extent. I was successful even in my first session after I was hooked up to the machine.
  • Guided meditation works well to lower my stress, but doesn’t really help pain.
  • Neither of these help the acute debilitating flares. I cannot break through it.

The doctors on that side — psychologists — were extremely thoughtful, supportive and engaged in active listening in every way that the pain clinic doctor was not. The disparity was really disturbing. While these med psych doctors saw the same drug seekers and rejected them from the program, they were still able to give their attention to true chronic pain sufferers and want to help them.

Feeling alone

During those six weeks of sessions, there’s time during each to do a little talk therapy about living with chronic pain, which is always helpful. What I learned from the doctors there is that I was somewhat of an anomaly — I am still working full time — most of the pain clinic patients they see are already on disability.

That kind of shocked me  — the bar to get disability is very high — you have to be able to prove that you can no longer work because of an ADA approved illness. As in a year of being unable to work. And your claim can still be rejected.

Clearly even though my pain is debilitating, like most Americans living with sometimes disabling pain, you just have to suck it up.

I have a hard time visualizing not being able to work anyway — that allows you to focus on your pain all the time, which is not my idea of a good time.

So who are the people out there who are living with chronic pain and seeking out help (or not able to)? How are they coping? How do they deal with disabling days of flares? I obviously wasn’t going to find them in this clinic. Depressing.

Pain meds — the conspiracy to deny

During this frustrating period as my rationed old meds were whittling down, each medical professional in my life refused to prescribe opiods to help me through flares, PRN use. I didn’t have to ask why — not appropriate for my diagnosis, addictive, long-term use can cause problems (even though I was clear that use for 2-3 days and then off for weeks at a time was how I was using them), use can increase tolerance, blah, blah, blah. As if I didn’t know this already. They were in self-protective professional mode. They certainly didn’t want to be the doctor to inappropriately prescribe. Big government is watching (for good reason):

“Almost 5,500 people start to misuse prescription painkillers every day, ” said Substance Abuse and Mental Health Services Administration Administrator Pamela S. Hyde. “Just like other public health epidemics, community–based prevention can be a proven, life–saving and cost–effective key to breaking the trend and restoring health and well–being. ”

The prescription painkiller death rates among non–Hispanic whites and American Indians/Alaska Natives were three times those of blacks and Hispanic whites. In addition, the death rate was highest among persons aged 35–54 years. Overdose resulted in 830,652 years of potential life lost before age 65 years, a number comparable to the years of potential life lost from motor vehicle crashes and much higher than the years of potential life lost due to homicide.

While national strategies are being strengthened, states, as regulators of health care practice and large public insurers, can take the following steps to help prevent overdoses from prescription painkillers and reduce this public health burden:

  • Start or improve prescription drug monitoring programs, which are electronic databases that track all prescriptions for painkillers in the state.
  • Use prescription drug monitoring programs, public insurance programs, and workers’ compensation data to identify improper prescribing of painkillers.
  • Set up programs for public insurance programs, workers’ compensation programs, and state–run health plans that identify and address improper patient use of painkillers.
  • Pass, enforce and evaluate pill mill, doctor shopping and other state laws to reduce prescription painkiller abuse.
  • Encourage professional state licensing boards to take action against inappropriate prescribing.
  • Increase access to substance abuse treatment.

Rush Limbaugh and the rest of you oxy junkies, you’re to blame for this.

CDC Director Thomas Frieden, M.D., M.P.H.: “States, health insurers, health care providers and individuals have critical roles to play in the national effort to stop this epidemic of overdoses while we protect patients who need prescriptions to control pain. ”

Chronic pain patients who need opiods for effective, responsible treatment are now being treated like criminals — or not treated at all. There has to be a better balance than what we have here.

I see both sides of the issue, and the epidemic of addiction has distorted the doctor-patient relationship, as has our health care/insurance system that has shortened doctor visits to 10 or 15 minute slots. There’s no way to develop a relationship with your primary doctor that can help them be better active listeners and judge each patient on their health history and as an individual.

So you have too many doctors on either end of the spectrum — too eager to dole out pills (pain or otherwise, like, say antibiotics) to placate patients who want a quick fix, and doctors paranoid their licenses will get yanked for inappropriate prescribing. For a lot of conditions there is no quick fix. You need a relationship (and good record keeping) to work with your health care professionals and advocate both your needs, and to listen to their recommendations, based on their professional knowledge as well. There’s just not a lot of that going on.

Finally, the visit to the rheumatologist.

So more months go by; I’m still missing too much work and alternatively at work and in terrible flare pain. No relief, only some help on the days with no flares from my biofeedback sessions and guided meditations on my mp3 player. Down to two hydrocodones that I refuse to cut up and take, figuring I’ll need them for a even more heinous flare down the line. I alternatively tough out the flares or am in a fetal position in bed, barely able to make it to the bathroom. This is no way to live.

BTW, my blogging has suffered as well over the last six months; I used to produce 5-7 posts a day, but all my spare energy went to staying on my day job, and in the little remaining free time, amusing myself by hanging out on Facebook, Twitter and Google+, since it required less effort than composing (i.e. “thinking”) and concentrating on long-form essays.

So when I finally went to the rheumatologist, I had printouts of all of my June labs, medical history, surgery history, the whole shebang. What I figured would happen is that I would get the physical exam needed for diagnosis (lots of prodding on joints; that was unpleasant and revealed painful joints that I was unaware of), and more labs since the June labs were old.

I do have to say that she was very thorough, answered all my questions, and didn’t rush through things; she informed me after the physical exam and reviewing the June labs that I probably had an auto-immune disease of some type, likely Rheumatoid Arthritis (RA), and that after the new labs, she’d work out a treatment plan.

Lo and behold, when the labs came back a few days later, the RF was still high, as was the sed rate. Positive for the degenerative, incurable autoimmune disease RA.

More below the fold.

I received the call at work on a Friday. I’d like to say I was shocked, but no, it was more of a relief to finally know I WAS RIGHT. There was something terribly wrong with me that was causing escalating pain, and it was something more than what I was treating with my current med regimen. However, the diagnosis was nothing to celebrate:

Rheumatoid arthritis is a chronic inflammatory disease characterized by uncontrolled proliferation of synovial tissue and a wide array of multisystem comorbidities. Prevalence is estimated to be 0.8 percent worldwide, with women twice as likely to develop the disease as men. Untreated, 20 to 30 percent of persons with rheumatoid arthritis become permanently work-disabled within two to three years of diagnosis.

Features of Rheumatoid Arthritis

  • Tender, warm, swollen joints
  • Symmetrical pattern of affected joints
  • Joint inflammation often affecting the wrist and finger joints closest to the hand
  • Joint inflammation sometimes affecting other joints, including the neck, shoulders, elbows, hips, knees, ankles, and feet
  • Fatigue, occasional fevers, a general sense of not feeling well
  • Pain and stiffness lasting for more than 30 minutes in the morning or after a long rest
  • Symptoms that last for many years
  • Variability of symptoms among people with the disease


40% of patients with this disease become disabled after 10 years, but outcomes are highly variable. Some patients experience a relatively self-limited disease, and others have a chronic progressive illness…There is generally a much worse prognosis of RA among patients with positive RF results, but the absence of RF does not necessarily portend a good prognosis.


Despite recent improvements in treatment and disability outcomes, women with rheumatoid arthritis may have difficulty maintaining jobs, one NIAMS-supported study shows. Researchers who followed two groups of women with rheumatoid arthritis 11 years apart—the first group beginning in 1987, the second in 1998—found the rate at which women left the workforce did not fall significantly. They found that more than a quarter of the women in both groups stopped working within 4 years after being diagnosed with rheumatoid arthritis.

Oy. And the first-line medications are no party – unpleasant side effects are not uncommon, they all suppress your immune system, leaving you wide open for contracting infections healthy people easily fight off. It looks like the first crack at controlling this will be Plaquenil.

Oh, and finally it explains why the opiods were giving me some relief — they are indicated for RA. But I had to have the diagnosis before being taken seriously.

I take that back — when I told the med psych doctors at the biofeedback clinic they practically did a happy dance — not because of the horrid prospect of RA, but because they believed me the whole time, had cleared me as not a drug seeker or high risk for abuse. They simply couldn’t figure out what I had that was so resistant to their work with me to date. Mystery diagnosis solved.

But my story is not unique. I’m sure many of you out there, if you’re part of the tribe of chronic pain sufferers, have similar stories of false paths, useless doctors, tests after tests, and feeling like a guinea pig trying out one med after another, with varying amounts of success/failure. The system is still not handling chronic pain treatment well, and the epidemic of pain killer addiction is not helping.

“A third of the nation experiences chronic pain. … It’s more than we pay as a nation on cardiovascular disease and cancer,” said committee chair Dr. Philip A. Pizzo, dean of pediatrics and of microbiology and immunology at Stanford University School of Medicine.

He said the prevention and treatment of pain are too often “delayed, inaccessible, or inadequate,” especially among certain demographic groups; racial and ethnic minorities, women, children, those with lower levels of income and education, veterans, the elderly, cancer patients and those at the end of life.

As a society we can do better, but I don’t think we’ll see any radical change any time soon. The best option is to be a pro-active, informed patient that comes prepared to appointments to work with your doctor, to try to get matters under control — and to be willing to change doctors if you aren’t being heard.

What’s in the future?

Well, knowing that I could lose functionality in my hands is the first concern; hopefully treatment can slow that down, but there’s always Dragon Naturally Speaking. It’s hard to think about future disability when your primary concern is the here and now of pain management.

I mostly think about what it was like five years ago when I didn’t have chronic pain. Visiting NYC and walking across the Brooklyn Bridge was one of my favorite things to do while there. Now the thought of that trek is impossible when I’m in a lot of pain. That’s sad. If I could have just a few pain-free days to be able to appreciate past abilities more.

The other day I went with Kate to the mall just to walk/limp around for a couple of hours. Afterwards I was so wasted I came home and crashed for a two-hour nap. It was demoralizing. An activity that registered as mild activity was now exhausting. Not aerobically, but my joints and muscles just “cried uncle.”

I remember covering the Dem National Convention in Denver in 2008. There was a lot of walking, standing and the like, and while tiring from all of the hours of work, it was exciting and a great experience as a citizen journalist. Now I almost weep that in 2012, when the convention is going to be here in NC (Charlotte), I could be too disabled to do anything worthwhile. I’m hoping I’ll tolerate the meds and by then feel well enough to handle it in some way.

But not to make this a big sob story — I still do have good days/parts of days and make the most of them; bad weather and airplane flights are known triggers for a flare, though with RA they can come at any time. I just have to learn that the clock doesn’t wind back, the pain will never be a zero, and people live with physical challenges much more difficult than mine every day.

Invisible Illness

One frustration, however, is that my illness, which has not progressed to visible joint deformity, is “invisible.” People think (or even say) “you don’t look sick.” Well, no, but I sure as hell would trade my pain-laden body for yours any day. I guess, as visual creatures, if we don’t see something, it isn’t real.

All I can suggest to people is to read the “But You Don’t Look Sick” blog by Christine Miserandino, and other posts there:  “Handicap Parking and My Invisible Illness” and “Pay no attention to the girl behind the smile -what I wish people knew about me.”

I’ll be ok. I can adapt. I’m just not through grieving just yet.

UPDATE: Just for shiz and giggles, I took a photo of what I rifle through my nightstand each AM and PM — I pick a couple of these topicals to try to kill some of the pain, mostly my feet and knees, in order to try and get sleep or to get up and make it possible to hobble in to work. I learned that rheumatoid arthritis (I was recently diagnosed) also contributes to peripheral neuropathy, so yet another piece in the pain puzzle was solved (but not cured, of course).

60-Second Guide to Rheumatoid Arthritis
* Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research
* Policy Impact: Prescription Painkiller Overdoses
* Epidemic: Responding to America’s Prescription Drug Abuse Crisis

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Pam Spaulding

Pam Spaulding