Have you ever fractured a bone? If you have, you recognize the deep pain that radiates under the surface of the skin and muscle. It doesn’t go away so you can sleep. It doesn’t go away so you can get in a quick workout or play with your children. This deep bone aching pain is always with me. I spend my life managing the pain. The rest of my plans always hinge on whether I’ll be mobile that day, or whether I’ve recently had a steroid injection. My pain rules my life, and often, my family’s lives.
The cause of my chronic pain is disc degeneration in five discs in my back – particularly the L5, where the pain presents similar to a fracture – but for the purposes of this essay it really doesn’t matter where the pain comes from. There are several other problems with my spine, as such, it is not a simple fix. Sometimes I want to conquer the mountain of trouble I face like a brave matador jumping into the ring to face a raging bull. Other times, I lay in bed and cry until the hormones that arrive with the tears do their job and calm me down or put me to sleep. The pain follows me everywhere I go, no matter what I do. It follows me into my dreams, where I battle against it in many different scenarios, and wake up sad and feeling defeated – and still, relentlessly, in pain.
In a world where doctors can not treat chronic acute pain with opiates, my doctors continue to warn me to stop taking so much Ibuprofen. At the rate I was – and am still- taking them, it is not a matter of if but of when my kidneys will cease to function properly. I was switched to a different NSAID, Naproxen, for a while, but I spent all day even more miserable than usual. I just went back to taking Ibuprofen. It is the only thing that really reduces the pain significantly. The other medications and therapies I use reduce the pain, but not significantly. I would love to cure the pain enough in order to no longer need the Ibuprofen. I’ve been going to doctors and surgeons and therapists for over five years trying to reach that goal. I’ll continue to see as many doctors as it takes to someday reach a solution.
The first step in reducing the amount of Ibuprofen is a referral to a pain management clinic. My doctor directed me to a reputable clinic that is not a pill mill. My first visit was full of optimism. I was going to be able to stop taking so much Ibuprofen, my pain would be under control, and I’d get my life back. Once upon a time, I spent four days a week at Group Exercise classes at the gym – the classes were fun and they left me feeling powerful and strong. Leaving them has been a major downgrade in my self-care and I would go back tomorrow and start all over again if I could. All of these things were possible!
The first option I was presented with was a pain medication patch, billed as an excellent pain reliever without side effects and with low rates of dependence. We began with a muscle relaxer as well. I also decided to have a steroid injection into the lumbar (lower) spine to relieve inflammation. My hope was that the combination of these three things would relieve my pain enough to get me back into the gym. I could not have been more wrong.
The initial dose of the patch did not help much, and we have since increased it three times. There is only one higher dosage left, and once I’ve reached that, there are no further options. It does reduce my pain – I lost one, and due to the nature of how controlled they are by the government I just didn’t request a replacement and wore another one longer until my next refill. True to form, I did not experience withdrawal symptoms but my pain did increase the week I had on the old patch. So the patches do reduce my pain, just not enough to discontinue the over the counter anti-inflammatories that will eventually destroy my kidneys (if they haven’t already).
A few nights after my first appointment, I was having severe pain. I took the muscle relaxer as it was prescribed to try to relax a little bit. I had trouble speaking, like my jaw couldn’t follow the commands my brain was sending. I could probably deal with that side effect, as long as I just took the medicine before bed, but when I closed my eyes, I saw a bright red neon-like crab flitting along underneath my eyelids. Let me tell you something, if you’ve never hallucinated before, it is terrifying. I had a full on panic attack. I threw those muscle relaxers away and never used them again.
Next came the epidural steroids. That’s fancy talk for “sticking a needle into your spinal column and targeting inflammation with potent steroids.” This helps. Each time I get an epidural steroid injection my pain goes from unbearable to … less unbearable. I am not trying to be negative here, it’s simply the truth. The shots make it possible for me to more easily perform tasks like laundry, or stand in the kitchen for a long time preparing a special meal – something else I love that I can no longer do regularly.
Still, the shots do not help enough to stop taking ibuprofen. Without the ibuprofen, the pain resumes as if the shot had never happened.
Ok, so we still have the patch. And Ibuprofen. And every three months, the shots. That’s on the high side of being recommended but currently, pain management medicine wants patients to push these limits rather than be prescribed strong opioids. Whether or not it’s worse long term is debatable- steroid injections carry serious risks. The priority right now is reducing the amount of opiates on the street, so patients will bear that burden with less pain relief and more risky procedures. And yes, I go and ask for these shots every time the pain becomes unbearable because I can not bear this pain.
Time for a deep breath. So now I’ve got the patch, the shots, and still, the Ibuprofen. It is hard to explain what happens if I stop taking the Ibuprofen. The pain becomes so bad that I can’t walk. I can’t do anything but cry. And sometimes throw up. The pain is so severe I start to panic and want to go to the ER, but any chronic pain sufferer will tell you that the ER is the LAST PLACE ON EARTH a chronic pain sufferer should go. The staff will treat you like a drug seeker. They will question you like a criminal, they will give you the cold shoulder, they will give you a tylenol and tell you they can not help you. In many cases the Doctors are angry that you’ve taken time away from patients with “real emergencies” and they will treat you with disdain and condescension. It is dehumanizing, humiliating, and it is soul-crushing. To ask for help is to expose one’s vulnerability. Vulnerability is like an exposed wound, and to be rejected at one’s most vulnerable is like pouring salt into that exposed wound. It is shocking and it is painful. Every time I’ve been to the ER the pain has been so overwhelming that I’m also crying- and then, to be treated with disdain and discourtesy is not something any chronic pain patient wants to go through. We struggle with our mental health on a good day. Sometimes, the medical staff that believes in us and our case and wants to help us are all the hope we have.
It can be extremely difficult to pass the “tests” an ER doctor runs through before they decide whether your pain is real. Very Well Mind offers a list of characteristics doctors may look for. I have not included the full list of criteria the doctor’s use, I’ve identified the red flags chronic pain patients check without having any history of abuse or intent to abuse. For the full list, click through to my source, here.
How a patient dresses – if you’re dressed shabby and dirty, or if you’re dressed really nice – either of these are considered a red flag. Ok, so lets just say I’ve got the perfect outfit on for this particular doctor’s standards. Perhaps that’s a clean track suit, or jeans and a t-shirt but the jeans aren’t ripped and the t-shirt isn’t wrinkled. I probably shouldn’t have nice shoes or show up with keys to a nice car either, for that matter. It is as if pain is related to socioeconomic status.
Patient has knowledge of extensive pain medications and controlled substances: Tell me one chronic pain patient who doesn’t know a lot about pain medication? Trust me, if we’re given it, we try it. We do know which medications make us vomit and which ones work well. But we can not give that information to doctors without them suspecting that we are going to abuse drugs. Then, if we withhold that information, that is also deemed as suspicious.
Exhibit unusual behavior in the waiting room: This I can not comment on because it is completely subjective. Just try not to look weird in the waiting room, ok?
Try to play on the doctor’s sympathies: If I’m at the ER my pain is such that I’m vomiting and sobbing and begging for help. In many doctor’s eyes, this means I’m being manipulative. One time, a doctor told me to go see a pain doctor, and as I silently sat in the room and cried, he put his hand on my leg and asked, “How can I help you?” I asked him if he could investigate the source of my pain and see if there was some way to treat it. He again said I’d need to go to a different doctor, that it was not an emergency, and sent me on my way. I walked out of the ER with tears running down my face. I drove myself home and stayed in bed for a long time. I needed help. I didn’t ask for an opiate. I’d have taken anything they gave me, but I guess the fact that I’d already taken Ibuprofen was a red flag, even though it would be drug seeking to go to the ER without taking ibuprofen.
Patient knows their medical history very well or not at all: A chronic pain patient has to visit a doctor at a bare minimum once a month, not including extra appointments for MRI’s, drug tests, steroid shots, nerve blocks, and physical therapy. Yet, if they can explain how hard they are working towards reducing their pain without medication, that makes the doctor suspicious.
Patient may pretend to be anxious or have depression or other psychological problems. I have both – depression that pre-dates the chronic pain. For this, I take Cymbalta, which also reduces my pain. As far as anxiety, yes, I do have anxiety whenever I am at the ER because I expect to be treated terribly but am so desperate I’ve made the decision to try to ask for help anyway and hope that if I bear the humiliation and disdain appropriately the doctor might decide to help me. Yet having this anxiety or depression might disqualify me from getting help.
Will complain that over the counter pain medications don’t work. I can’t speak for anyone else, but if I’m at the Emergency Room, I’ve already combined Ibuprofen and Tylenol and my pain patch and likely recently had a steroid injection. I will tell the doctors the truth: Ibuprofen works better than anything else on my pain, and I consider it a miracle drug. If I am at the ER, the Ibuprofen isn’t enough to control this pain.
It is extremely difficult for chronic pain patients in today’s regulatory environment. If you’re a chronic pain patient, hang in there. Reach out to me, to others, and seek support. If you are a physician, particularly in the emergency room, please just read with an open mind and heart. People with chronic pain live a life in the darkness, and the smallest acts of kindness can bring them some light.
I’ve written a short poem about my condition. I feel vulnerable sharing it.
Each day, I fight.
Each day, I rise.
Some days, I fall.
Some days, I fly.
Tomorrow might bring pain;
Tomorrow might bring joy.
So I go to sleep
And I hope
And I hope.