By Jennifer Kain Kilgore, Guest Columnist
“You have exhausted all of your options.”
That is what I was told when I was denied as a new patient at Massachusetts General Hospital. Western medicine has officially given me the heave-ho.
Because I have a “long-standing relationship with another pain management clinic,” unless I am being referred for a specific procedure that my current doctors do not have, I am not allowed to become a patient elsewhere.
It’s so strange to reach the end of the road. It’s one thing to be told that the doctors are running out of ideas; it’s another thing entirely to have someone tell you that there is literally no other procedure in existence. All the treatments they are willing to try have been attempted. Science and research have not caught up yet. This is as good as it’s going to get.
What they’re willing to try. That’s the operative phrase here. Despite my decade of experience in the medical system, despite never exhibiting pill-seeking behavior, my pain management doctors refused to prescribe any kind of opioid safety net. If the pain gets really bad? “Go to the ER.”
Really? That’s the best you can offer? “Go to the ER”?
“I don’t think you understand,” I told my doctor. “I’ll have to quit my job. I can’t function like this.”
That’s the thing about pain management clinics. They do not cure. Most of the time they do not even have the power to manage. They try to dull the pain, to numb it, just long enough to get you out of their office. The problem is that pain is subjective. A finger slammed in a door can hurt worse than a fracture, and everyone thinks their pain is intolerable.
So if you keep coming back and complaining, then the problem must be in your head. Even though I told my pain doctor that I am already seeing a pain psychologist, she insisted that I meet with one in-house in order to come to terms with the “new” me. Like I’m not letting some kid sit at the lunch table with me. Play nice, you two!
I actually told her that when she said “you have to learn how to live with the ‘new you,'” not only did she make me want to murder everyone in my immediate vicinity, but she was also entirely patronizing. I’m sure I got some black mark in my medical file for that comment (“aggressive,” “argumentative,” “abusive,” etc.), but don’t tell me how to react to my issues when you have no experience dealing with them. I hope to God she never says those words to another patient.
Pain management doctors do not work well with patients who need more than the usual series of steroid injections. I’ve had the steroid injections, the ablations, the Botox in my muscles, the pills, the trigger point injections, the surgery, the infusion. There are no other procedures.
“We’ve done everything. So why are you still hurting? It must be in your head.”
Of course it’s in my head. That’s where pain is processed: IN YOUR BRAIN. My brain has learned these pain pathways, and my nervous system is constantly hyper-stimulated. It doesn’t take a Philadelphia lawyer to figure that one out.
“Give her antidepressants. Give her nerve meds. Just don’t give her opioids.” That’s the reasoning my pain doctor kept parroting: “It’s been clinically proven that opioid medication doesn’t help chronic pain.”
I know that it doesn’t — not in the long run. Not if you take it every day, multiple times a day. All I need is a safety net for the really bad days. I was prescribed 14 Vicodin in March. Guess what? Still one left. Whole bottle of Tramadol? Untouched. I take them when I need them.
Doctors are more interested in protecting their own medical licenses than handing out medication to those who need it — which I can understand. If it were between my law license and some person I only see once a month, I’d go for the law license. For years, however, doctors over-prescribed until the government cracked down; now they under-prescribe and hope that none of their patients will notice. The pendulum has swung so far in the other direction that it’s only a matter of time before something breaks.
Pain management doctors must be frustrated with patients like me. It’s not like they’re huddled in a conference room, rubbing their hands together and muttering under their collective breath the names of patients they’re going to disappoint. I hate when I fail at my job. I’m sure they feel the same. But they are the gatekeepers, and they are in my way.
Everything that has helped recently has been found by my father, by my husband, and by me. I exercise as much as I can when the pain allows. I use a BodyBlade in order to strengthen my core muscles. I practice mindfulness and meditation. I stretch and do yoga on a daily basis. I walk at lunch. I get pain relief massages. I go to the chiropractor. I found the Quell pain relief device, which I adore and wrote about on my blog.
These are alternative forms of care, and they have been all found — wait for it — by people other than my pain management team.
We chronic pain patients truly have to be our own advocates. It is our responsibility to find the interventions that will help us. These treatments might seem strange or like some sort of hippie nonsense, but I am done being told by doctors that the pain is all in my head and that they can do nothing to help me. I will help myself. This is not the best it is going to be.
J. W. Kain is an attorney in the Greater Boston area who also works as a writer and editor in her spare time. She has chronic back and neck pain after two car accidents.
The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.