Category Archives for Pain Management

Futile Emergency Room Resistance

For the first time since having surgery last August, I landed in the hospital emergency room on Sunday. I was struggling with a pain flare up all day and finally had to surrender to the fact that my pain medications were not doing all they could for me in the pain management department. After trying to be still, crying, talking myself into a space of calm, and trying desperately – but failing miserably – to sleep through the pain, I gave in. When you’re barely moving and still have intense pain in your feet, ankles, thighs, hips, pelvis; and lower back pain that feels like it has tentacles spreading up your back, it’s hard to keep assuring yourself for hours on end that the increasing waves of pain will pass. On Sunday, there was no ebb to the painful tension enveloping my body, so the dreaded emergency room became my last resort.

Before making the decision to go I contacted some of my friends who usually make themselves available to keep me company while I sit through the hours of IV medications slowly dripping into my veins. Unfortunately, on Sunday afternoon, as one would expect, most of them were locked into plans. The ER is uncomfortable enough, but having to face going in on my own always makes it worse. It’s also partly why I held off from going in for so long. Later in the afternoon when I could bear it no longer, I accepted the offer of a neighbour who had come by to drop off some items from the farmers’ market to go with me and keep me company until someone closer to me could come be with me. I’m certain I would have waited hours longer before going if he hadn’t stopped by.

Emergency rooms, especially on a weekend, tend to be populated with interesting characters. When we arrived at my local ER on Sunday, there were people from all walks of life waiting for triage to the right level of care. One woman suffering from obvious mental health issues was shouting incoherently at the top of her lungs what must have been a badly patched together montage of events from what sounded like a tragic life. As she became more animated and the flow of expletives in her ranting increased, the hospital security guards and police were called to subdue her. When I finally made it into the ER treatment area I could still hear her shouting from a distant corner, and I overheard the nursing staff assuring security they could leave because she was securely restrained. It hurt my heart to picture that woman strapped to a hospital bed against her will.

Thankfully, I didn’t need that kind of intervention. However, once the nurse recorded my vitals I knew that my body was in crisis. My blood pressure was 162/82. That’s not the highest it has ever been but it was high enough to confirm for the nurse completing my intake, that my pain was real and I wasn’t in the ER seeking drugs when I said my pain was an 11 or 12 on the pain scale. After a 90-minute wait, I was finally seen by a doctor who had me list the cocktail of pain medications I take daily so she could understand what I was coping with and what she might be able to do to help me. I could tell from how little she said that she was trying to wrap her head around someone with a body as small as mine taking such high doses of pain medications yet still feeling so much pain. I tried to get her mind moving by telling her what treatment(s) I had received in the ER for past pain flair ups, and that seemed to jumpstart things.

My friend J arrived a short while before my discussion with the doctor started. It was good to have her there because she has been through this scenario with me many times before and is sometimes faster at responding to questions about my condition than I am when I’m in that state. J’s arrival also gave my very kind neighbour a chance to slip away and head home. He had sat with me for a few hours then hung around chatting with J and me, for longer than he needed to, to make sure I got some treatment before he went home. His presence reminded me how blessed I am to have so many people in my life who care about me, even when they have no vested interest to do so.

After consulting with the ER Attending Physician on shift, the doctor returned and told me they were going to start by giving me a shot of my old faithful injectable Toradol, and that I should take the scheduled dose of my pain medications, which at this point were about 90 minutes overdue. Unfortunately, I wasn’t paying close enough attention when she said I would receive an intramuscular shot of Toradol instead of an IV drip. For anyone who’s never had a needle plunged into a muscle, unless you have masochistic tendencies, give it a pass. The pain in my arm after that shot rivaled what I was already feeling in the rest of my body. The nurse instructed me to rotate my arm to get the medication flowing through me. I flapped my arm around like a bird with a broken wing for about ten minutes. For all the good that it did because my pain was unaffected.

When the doctor returned to check on my progress, my blood pressure reading had dropped to 160/82. For the first time, the Toradol wasn’t working. She went off to get more advice. What she tried next was an IV with an added milligram of Dilaudid, which is part of my regular pain medication regimen, and Lidocaine. Lidocaine is a local anesthetic that prevents pain by blocking the signals to nerve endings in your skin. It’s usually used to numb skin before painful procedures: think about the shot to your gums before your dentist starts drilling. Within 30 minutes, after the drip was opened, I started to feel some relief, and the sure sign that things were moving in the right direction was my blood pressure began to fall.

With this positive result unfolding the Attending Physician came by my bed to talk to me. He was empathetic with my situation and concerned that I am living with this extreme pain. He wanted to know what treatment(s) aside from pain medications I have received and added a few suggestions for future treatment(s) to my list. He also made it clear that if the effects of the medications I received wore off I shouldn’t hesitate to return to the ER; and that if I did I should tell whoever treated me to try the Lidocaine, as unusual as it may sound. He even asked if I wanted to have an extra top-up of Dilaudid to make sure the positive effects I felt didn’t wear off too soon. However, because I still had a dose of Dilaudid left in my pillbox for the night, I opted instead for another dose of the Toradol.

Once the IV drip stopped and I got dressed, I became acutely aware of how hungry I was. The night’s ER adventure ended at 2:00 AM with J taking me to a nearby 24-hour diner to get a huge Chicken Parmesan sandwich with French fries, and a slice of cream cheese icing-covered carrot cake to go. More importantly, although I had resisted going, my visit to the ER gifted me with the knowledge of an alternative cocktail of medications to bring my pain back to a level where I can cope if I need extra support again in the future.

 

Chumbawamba – Tubthumping

 

When Hoofbeats Mean Zebras

For some time I’ve been having a recurring dream – actually, it’s now a live waking vision – that I make an appointment to see the doctor who started me on my journey into chronic pain. She no longer works at the hospital where I was first treated for, and ignored when I described, my severe pelvic pain so I would need to do some detective work to track her down. Why would I want to exert any effort to see her you might be wondering? Well, when someone irreversibly changes your life for the worst you get an overwhelming desire to confront them to see the look on their face when you recount for them the hours, days, and months of endless pain you now live with because of their avoidable mistakes.

I believe I deserve an opportunity to tell her how disappointing it was – and continues to be for me – that a female physician was so dismissive of me when I described my pelvic pain symptoms. During my hospitalization, I tried, unsuccessfully, to share my medical history, and family health history, with her on the off chance there might be a relevant connection to something from my past or genetic ancestry. I want her to understand that just because a patient presents some symptoms for a particular illness that they could still very well have something else, and that the old saying of “when you hear hoofbeats, think of horses not zebras“ isn’t always the right medical diagnostic rule to follow.

The results from the first abdominal scans I had were unusual and shocked the Emergency Room doctors, but a lack of expertise meant I had to receive treatment elsewhere. However, once they admitted me to the second hospital the attending doctors seemed to be on a mission to contain my illness to a textbook diagnosis that was more common, predictable, and manageable, which over time proved to be wrong. The diagnosis wasn’t right, yet this doctor continued to work from her flawed viewpoint, while my health deteriorated with each passing day. Oddly, even with my physical decline and increasing pain, she was certain I wouldn’t need to rest for longer than a week after my release from the hospital before returning to work. I want her to know how wrong she was about that too because it’s been almost three years and I’m not any closer to going back to work and no one can see if or when that might be possible for me.

I also I want her to know how wrong she was for under-prescribing pain medication for my pain management and telling me that if I had a pain flare up outside her hospital clinic hours to go the Emergency Room where I could receive additional support. The Emergency Room staff and doctors at that hospital were not supportive. At best, during each of my pain-filled late night visits they thought I was there seeking more opioid-based painkillers and did the bare minimum to treat my pain. Once they read my hospital clinic chart, they didn’t order any more tests or investigate alternative diagnoses; they simply hooked me up to an IV to boost the effects of the painkillers. They then wrote more prescriptions for the same dose of those ineffective pain medications; and told me to go back to the hospital clinic to see the same doctor who was failing to manage my pain because she didn’t believe what she had incorrectly diagnosed could cause so much pain. Poor pain management forced my nervous system into overdrive to respond to the onslaught of pain messages from my body. Now, even with the higher doses of pain medications I take, my nervous system can’t do enough to calm my body or ease the pain.

Because of all of this, in my recurring vision , I am angry. However, the doctor is unrepentant and she falls back on the cliché that medicine isn’t an exact science. I imagine standing in front of her, while trying to ignore my intense pain; bewildered that she refuses to accept any responsibility for the errors that brought such significant changes to my life. Thankfully, my anger is broken by a moment of clarity when I realize that there is nothing for me to gain from such a meeting. Nor do I believe that someone who carries herself through the world with an air of superiority would gain from it. As this vision fades, I see the next person in a line of this doctor’s past patients waiting to tell her similar things, but I know she won’t hear them either. I walk away thankful that I found doctors who are willing to listen to me and understand that sometimes when you hear hoofbeats they are zebras.

 

Joni Mitchell – Both Sides, Now

Pain Clinic #9: Acupuncture Agony

I survived my first acupuncture treatment. I know that sounds dramatic, but I did have to sign a consent form and waive my right to sue the hospital and all staff if I had any negative reactions before my pain specialist started the treatment. Besides, once I outline what happened, that I characterize the outcome as survival might not sound far-fetched. After I signed the consent form, my pain specialist and the assisting nurse outlined all the possible known negative reactions I could experience during and after the treatment. The intention was to place ten acupuncture needles in my lower back close to my tailbone radiating outward to my hips, and more needles in other areas of my body. Because I can no longer lie comfortably on my stomach, we had to figure out the best position for me to lie down on the table to prevent me from moving during the treatment. The best position turned out to be lying on my left side with my right leg bent at the knee and supported by a pillow. I had another pillow placed under my head and both arms stretched in front of me – reading that back it sounds more complicated than it was. In anticipation of the bright lights of the treatment room, I brought a sleep mask with me that I put on to create a more relaxing mood.

With me lying steadily in place on the table, my pain specialist moved my clothes aside to get access to the bare skin of my lower back. She spoke to me as she started to insert the needles asking if they were causing too much pain as she placed them. Unfortunately, even though she didn’t insert them too deeply, the pain of each needle she put under the skin close to my tailbone was unbearable. After she inserted the fifth needle in the flesh close to my right hip, she decided not to put anymore into my back. I’m glad she stopped because I’m not sure I could have handled the pain of five more needles. My pain specialist placed the sixth and seventh needles on the backs of each of my hands in the soft pad between my thumbs and index fingers. The nurse set a timer for ten minutes, and then it was lights out.

During the first ten minutes, as I was lying on the table in the semi-darkness, I could feel an intense, tingling sensation radiating from each needle in my back and hands. It was uncomfortable and not at all like past soothing acupuncture treatments. When the timer went off the nurse came back to the treatment room to adjust, or as she said “twizzle” each needle. She set the timer for another ten minutes and left me alone in the dimmed room once more. The discomfort from the needles continued to grow. The familiar feeling I get at the beginning of a pain flare up started building in my legs, but there was still time left on the timer. While I waited for the time to run out, I hoped that the removal of the needles would ease the discomfort.

At the end of the twenty-minute treatment, my pain specialist returned to remove the needles. She delicately plucked each fine, silver sliver of metal from under my skin, and the nurse used cotton pads to dab blood away from some of the insertion points. My pain specialist told me to sit up slowly. As I sat up, a wave of nausea hit my stomach. I wanted to vomit. I sat still for a moment then tried to stand up. I felt dizzy. I had to sit back on the table. The nurse and my pain specialist were very concerned and made me lie back down for about 30 minutes. When I finally felt steady enough to stand up, the nurse said she could tell that I felt better because the colour had returned to my face. However, there was still concern that I might need more medical attention. She told me that if the nausea and dizziness continued or worsened that I should go to the emergency room.

As the day progressed, the nausea and dizziness started to fade slowly, but the pain flare up that followed was as unbelievable as it was unexpected. For the first week following that treatment, I had soreness in the areas where my doctor placed the needles; tingling in my hands and the soles of my feet; that tingling turned into fiery pain from the soles of both my feet all the way up to my pelvis and lower back, and I felt exhausted. I couldn’t sit comfortably and standing or moving around made the pain worse. I tried massaging the arches of my feet, my ankles and thighs but the added friction made the burning pain worse. Even my hands tingled, although I only had a single needle placed in each one. By the time I went back to the pain clinic for the second treatment a week later, I was so sore and stiff that my pain specialist decided against more acupuncture and had to increase the doses of my pain medications to help me cope with the pain. She also expressed surprise that I returned for another treatment and told me she hadn’t expected me to make it to the appointment because of the shape I was in after the first session, and how much pain I was still in while meeting with her. Even though I was still in so much pain, it never occurred to me to cancel the treatment.

It’s been a month since I had that acupuncture treatment and my pain is just getting back to a level where I can cope, even with the higher doses of pain medications. Because I had positive experiences with acupuncture in the past, this outcome came as a real shock to me. I knew that it was possible to feel some nausea and dizziness afterwards, but I wasn’t prepared for the intensity of what I experienced. Since going through this I found AcuTake, an online publication that provides information about acupuncture. According to an article on the site, “7 Acupuncture Side Effects That Are Normal”, one of the potential side effects is “worse symptoms” or what “is sometimes referred to as a healing crisis” because acupuncture “awakens your self-healing capabilities” and “can cause not only an exacerbation of current symptoms but also the recurrence of previous ailments that had been dormant.” The article further states, “The good news about this side effect is that it’s a sign that things are moving. In the case of acupuncture, this means that the primary objective is being met. That is, you are starting to transition on multiple levels from stuck to unstuck.”

I don’t know how true it is that I have to feel worse before I get better, but I have a follow-up appointment scheduled with my pain specialist in about two weeks and we’ll definitely have a conversation about whether the agony that comes with acupuncture will benefit me in the long run.

 

Stevie Wonder – Ordinary Pain