I Know How the Horta Felt—PAIN!

Posted: 06/12/2014 in Uncategorized

I’m into an almost-three week cycle of escalating upper back pain, which reached an all-new level of agony about five days ago. I woke up around 3 AM with some of the nastiest pain I’d felt in my life, centered around two points. These roughly correlated, from what I see, with C7-T1 and down through T7. (I have a known bulging disk at C4-5, plus degeneration at C5-6-7 and T6-7-8). What set things off, I don’t know, but I’m going to chalk it up to being sedentary for a couple of weeks, prolonged driving, and sleeping in a different bed over the holidays.

Everyone wants to know…”What are you doing to help this? Did you know stretching/yoga/incense/tai chi/medication/walking/heat/ice/meditation/yak milk from Uruguay can help?”

Yes. People with back problems know chronic pain and what helps their particular pain. My pain is nociceptive, not neuropathic, a result of spondylosis (arthritic changes in the spine) and degenerative disk disease. It’s due to structural changes in my spine and muscles that result in inflammation. In 2008, I got significant relief from epidural steroid injections until I could no longer put off an anterior cervical diskectomy and fusion in 2009 for two herniated disks. It did wonders for me (C5-6-7 were fused with cadaver bone and covered with a plate), and I had no symptoms of problems again until early in 2014. A new round of doctor visits (initial with a new PCP, first ortho, second opinion ortho, and follow-up with PCP—so, about four  months of appointments) and fighting with insurance to get an MRI (after spondylitic changes showed up on x-ray). It showed the new C4-5 disk bulge, acquired cervical spinal stenosis, and degenerative disk disease in the upper thoracic spine. Luckily, my lumbar spine seems fine. I say that because most people do have lumbar troubles, and they are hard to fix.

What does the pain feel like? First of all, let me list some terms. Acute pain is the type of pain that is short-lived. For example, the pain you have after surgery or while passing a kidney stone is acute. It may last a few weeks to a few months and fade away. If it lingers for three-six months or longer, though, it could become chronic pain. I am in no way diminishing acute pain. It can be horrible; most people have either had a kidney stone or know someone who has, and many describe it as the worst pain of their lives. Labor pains can be similar. This is a good review of pain: http://www.merckmanuals.com/home/brain_spinal_cord_and_nerve_disorders/pain/types_of_pain.html and http://www.spine-health.com/conditions/chronic-pain/types-back-pain-acute-pain-chronic-pain-and-neuropathic-pain

Chronic pain is, frankly, misunderstood by many. Thankfully, fewer people today than 10 years ago consider it purely in one’s mind. It may come and go without warning. It may “flare up” and be a problem for several days or weeks, then wane, but it never leaves for good. My chronic pain on good days is around a 1-2 on a 10 point scale (the universal pain scale, which is most commonly used, calls this “Hurts a little bit”). It’s never completely gone, but I would say 60 days out of 100, it’s bearable, and I can walk, swim, write, knit, and cook without too many problems. I even jogged a bit this fall.

Of the remaining 40 days, about 20 are at a 4-5, or “Hurts little more/hurts a lot more”. Those are the days I take over-the-counter mid-day pain meds, instead of just AM and PM, and have a hard time getting things accomplished at home and work, but I do get them done. As I write, this is a 4-5 day, by the way. In fact, it’s taken me two days to complete my post, since I’ve been trying to stretch and be good to my back every half hour, attend two meetings, and deal with increasing pain.

Twenty horrible days out of a 100, or about 5 days every month, I have what some call “breakthrough” pain. This is pain that’s 6-7 or maybe an 8. I’ll tell you that for me personally, labor pain without medication was an 8; a kidney stone was a 9, and the worst pain ever, a 10, as in “I’m truly going to die” was about 12 hours post-op from a total abdominal hysterectomy. I was receiving acetaminophen and ibuprofen for pain, which was brutally insufficient. I told my family I loved them, I’d see them in the afterlife, and I was dying because no human being could survive that kind of pain, ever…except I couldn’t choke out the words. It was more an “Ughrwaghhh ahhohhhh eehs” than anything coherent. A good friend who is a nurse got the point across, and finally, I received something more appropriate for post-op pain following abdominal surgery.

On these breakthrough pain days, I sometimes have to miss work. I can’t drive. I take whatever over-the-counter and prescription medication I can, strictly according to the doctor’s instructions, but more often than not, I just have to lay flat on my back and wait for it to pass. Heat packs and hot showers help, but they are usually not sufficient to stop the pain once it starts. I worry about what people might think of me, just lying there, when there is “stuff to do be done” at the house, at my office, and for the holidays.

What does the pain feel like? Imagine someone takes a red-hot stiletto or sharp, thin knife, and then, the person slowly pushes that knife through your upper back, just above the bra strap or slightly higher. The pain explodes in a starburst pattern outward from the initial knife entry point, up to your skull, wrapping around your ribcage, and into your shoulders. The pain doesn’t stop; the knife keeps constantly stabbing you. The pain is intense enough to take your breath away. The muscles across your upper back yank themselves around in an effort to realign and help the pain, but of course, this only makes things worse. Your whole back dissolves into muscle spasms. The pain then starts extending into the lower back, which hadn’t been hurting before. No matter what you do, the pain…won’t…stop.

Now…during a flare-up, imagine this pain going on for days. You can’t sleep (and this perpetuates the vicious cycle because your body needs deep sleep to recover). You can’t use your arms because it hurts your back (for cooking, daily chores, driving, pain-distracting crafts, and so on). You can hardly communicate. It’s difficult to use the computer. You desperately want to do things, but you can’t—the pain is so intense, you can’t concentrate. You get snappish and irritable when your family can’t read your mind (yes, I know that is a totally unrealistic expectation, so take this with some gentle sarcasm). People’s feelings get hurt, and you try to explain your pain to them and apologize for being miserable and angry and depressed about feeling useless and why your house is a wreck, but you just dissolve into tears because not only can you not think straight, you can barely talk. This round, I’ve had so much pain, I’ve felt nauseated, which hasn’t happened in a while. (No, it’s not my meds causing this—it’s the pain. The nausea was there well before I even saw the doctor, and it has a very different “feel” than the nausea you have from a stomach virus).

I know pain is bad for everyone. I do not want to say men’s pain is easier than women’s. It’s not. It’s pain, and it’s horrible. However, for good or ill, in many homes (NOT all—I am simply making a generalization based on the several dozen families I know personally), the women hold the glue together, and they make the choice to try to keep on doing through pain crises. They sign the school notes, plan the day-to-day activities, and organize the chaos. They may have careers of their own, and yet they still pull a “second shift,” as Arlie Hochschild describes it, while also dealing with pain (http://sociology.berkeley.edu/professor-emeritus/arlie-r-hochschild).

If that works for your family, it’s great; I am not criticizing. All I am saying is that among my circle of friends, most women I know put their health concerns last (whether they are single or in a relationship doesn’t seem to affect this). They continue to work while sick, they shuttle their kids and their kids’ friends while hacking up a lung, and often, they have to do the stuff on their lists that needs doing, or else it won’t get done. Mind you, I’m not talking about frilly holiday decorations; I’m talking about paying bills so the lights don’t go off. They take care of their animals, their job obligations, and anything else that may come along, putting themselves and their well-being low in the priority list. I don’t know if this is an American phenomenon or not, but it seems omnipresent.

I do not want to dismiss what partners and friends do for those in a pain crisis, either. My spouse was so desperate to do something, he drove 90 miles to get my ortho records for my PCP when a fax would have sufficed. He did this, I think, because he a) wanted to help so badly and b) couldn’t bear to see me writhing in pain while we waited to go to my PCP (and he drove me another 70 miles there and back; did I mention rural health care options are challenging?) So, kudos to wonderful, helpful partners and friends—but ladies, really, it’s okay to give yourself a break. Feel guilty if you must (I did), but do take a day or two to recuperate if you can (and by that, I mean if you have sick leave. I spit on the corporations who make employees work while sick). I took two days of sick leave this week, but I kept my phone on, and I checked email from home. Thankfully, everyone is so focused on finals, I was able to rest most of the time. But I was angry I couldn’t work on holiday gifts or email my students or reorganize the bathroom, like I wanted.

Of course, the best thing to do is stop the pain before it escalates, if possible. Here is a list of things I do routinely/daily to manage pain. I want to make the point that I really have tried all the things I can:

  1. Stretching and not sitting too long. I try to get up and do basic stretches every 30 minutes. It sounds like a nutcracker is in the room.
  2. Heat packs and hot showers, a couple times a day. I always have an extra heat pack on hand, ready to go.
  3. Monthly massage. Massage therapy isn’t all pretty spas and woowoo music. My massages hurt, but then they heal, and I made sure my massage therapist and my orthopedist have seen each other’s notes.
  4. Take my medications regularly. I take 2000 mg of Tylenol, divided into two doses (AM and PM), 50 mg of Tramadol (one in the AM, and one in the PM), and 1000 mg of Naproxen divided into two doses (AM and PM). I also take calcium, a multivitamin with extra vitamin E/D/calcium, flax oil, fish oil, red rice yeast, and niacin. I keep both my PCP and my ortho up to date on all the things I take, including supplements.
  5. For this particular flare-up, I’ve also been given 5% lidocaine patches (great, but cost a lot), Robaxin (it’s okay—I’d call it “better than nothing”), a steroid dose pack (6 days of a tapering dose), and 50 mg amitriptyline (PM only, for sleep). These are just temporary measures. I am fortunate in the only side effect I have from prednisone is some insomnia, so I take it early in the day. I got Toradol and Decadron at my PCP’s office (wonderful stuff, but Toradol has the potential for kidney and gastrointestinal side effects, so its use is short-term only), which did help break the cycle for a few hours.
  6. Deep breathing and meditation a few times a week. I have a yoga program for my Wii, but many of the positions are, in fact, painful. I do some basics when I stretch.
  7. I just got a gel mat for the kitchen, and it has been helpful for times when I stand and cook.
  8. Voltaren gel: While only available with a prescription in the US, you can buy this on the shelf in Canada for about $8 a tube. I’ve found it’s good at bedtime, especially for aching joints.

Here are things I’ve tried that either did not help or did more harm than good (and remember, I am just a sample size of one):

  1. Ice: I know it helps some people, and that’s great. Heat/warmth is the better option for me.
  2. Neurontin (Gabapentin) and its cousin, Lyrica (Pregabalin): These are anti-seizure medications, used for treating nerve pain, post-shingles pain, and diabetic neuropathy. For some people, they work miracles, and I am glad we have them. I tried Lyrica in 2008 for a month; I was dizzy and gained some weight, but it did nothing for pain. I took Neurontin (300 mg, twice a day) for six days this past November, and I was a crazy person. I had hallucinations, I thought worms were crawling out my nose and ears, and I could hardly stand up. I cried, I laughed, and by day 6, we were all scared to death of how I was behaving. Our pharmacist helped me cut back the dose and stop it over a 48 hour period. Some researchers at the University of British Columbia published this article several years ago (http://www.ti.ubc.ca/letter75). Use of Neurontin and Lyrica for nociceptive pain (like my spondylosis) is still not well understood, I think. While I noticed slightly less pain on the Neurontin (possibly 20% less), I noticed a marked increase in pain when I stopped taking it. That was, in fact, about the time the current pain cycle started, but I can’t prove causation—there are too many variables, like holiday travel.
  3. Curcumin: I was so hoping this would help. I tried it for two months, and I noticed no changes at all. Again, it does seem to work for some people, and I have had good luck with supplements like fish oil and slo-niacin (e.g., I am open to trying supplements).
  4. Glucosamine chondroitin: Ditto, same as the curcumin. I tried it for almost six months and noticed no difference.
  5. Chiropractic: I used a chiropractor for hip pain after pregnancy, and I do believe it helped realign things. However, two years-worth of treatments (and a lot of out of pocket money) did not improve my upper back pain with lasting effect. My orthopedist actually said it was counter-indicated for cervical problems like mine, though he routinely suggests it to his patients for whom it might be appropriate.

I have two treatments that I use (or have used) which sometimes help and sometimes hurt or have no effect. These are:

  1. A TENS Unit: A TENS (transcutaneous electrical nerve stimulation) unit sends mild currents through electrodes that supposedly erode the transmission of pain from the nerves. It sort of redirects and rechannels the pain, or otherwise “tricks” the nerves into “distraction.” On certain days, it has been helpful. For this current flare-up, it made the pain worse, so I stopped using it after one 10-minute session.
  2. Epidural steroid injections: I’ve had three, total, over a 1.5 year period. It’s been almost five years since my last one. The first two helped tremendously. The last one didn’t really do anything.

Are any readers wondering why drugs like Vicodin or something similar are not listed here? Major law changes in 2014 restricted how opioid drugs are prescribed. Moreover, the DEA has dealt harshly with doctors who prescribe these medications and pharmacies that fill them. Rightly or wrongly, they created a lot of fear among doctors, pharmacists, and patients, even those who were judicious and used them for appropriate reasons.

I guess I don’t need to say that I am filled with loathing for people who abuse these drugs (both those who steal and sell them, as well as those who improperly prescribe them), and the media that makes them more frightening than they need to be (i.e. the “don’t ever take these because you’ll absolutely become an addict!” sort of panic). I do not want my pharmacist or physician being targeted in any way, but I can’t help but wonder if I’d gotten something in this class of drugs for a short period (twice a day for a couple of days), would I be feeling better now? As an informed consumer, I simply don’t know what to think. I found opioid pain relievers worked very well after my back surgery, and I only took them for about two weeks as my doctor instructed (i.e. one tablet every 4-6 hours for the first five days; then, cut that dose by half; then, lengthen the time between doses; and finally, at the end of the second week, take half a dose at bedtime if needed). I had no addiction or withdrawal symptoms, following those instrctons. TIME has this to say: http://time.com/3445728/painkillers-opioids-dangerous/ while Johns Hopkins says this: http://www.hopkinsarthritis.org/patient-corner/disease-management/benefits-and-risks-of-opioids-for-chronic-pain-management/, which is more pros/cons than scare tactics.

This leads me to things I’m either trying or want to try:

  1. More green tea. I drink a cup full daily at the present time and enjoy it.
  2. I’m looking into acupuncture, but I want to make sure I have a qualified practitioner—and we live in an isolated, rural area where I only found a couple of names within a 60-mile drive. I don’t want to end up in Smith’s Acupuncture, Fresh Vegetable, and Coffee Shop, if you see what I mean.
  3. Gin-soaked golden raisins. I know, isn’t that crazy?! But people swear by it. If you are in enough pain, you’ll try nearly anything. The People’s Pharmacy has a good article about this here: http://www.peoplespharmacy.com/2013/10/17/gin-soaked-raisins-for-fibromyalgiareally/

I normally write about 1000 words an hour, and I’ve been working on this off and on for about two days. It’s been hard to focus. As I close the first draft, I’m glad the day is almost done, and I’m going to see my massage therapist, hoping she can help (well, not as much as I’d hoped, turns out).

Does the internet hive mind have any further, reasonable suggestions, backed by studies and data and/or reliable sources? Andromache wants to know. But now, she’s going to do some more stretching.

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