Readers. I have so much to say about chronic pain and the difficulties and frustrations and trauma of trying to manage it. I will do my best to condense it for you.
First, let me try to put into words what it’s like living at high pain levels all the time. It’s indescribable really. But again, I’ll do my best. Right now I’m sitting in my wheelchair at my kitchen table writing this blog as I’m literally shaking from my current pain levels. They are so high at times like this, it leaves me breathless. I can’t stand in one place for too long because my knees, feet, back, hips, and butt ache too much. I can’t sit for too long in the same place either because the pain becomes unbearable. But obviously constantly moving is not really an option either. My wheelchair has been such a gift to me, but even that hurts my shoulders and neck from pushing the wheels. And don’t get me started on how expensive an electric wheelchair would be for me (I’ll devote a whole blog post to that dilemma.). The only time I’m able to almost completely block out my pain is when I’m meeting with and helping my clients and their families. Because I can solely focus on them and their needs. My own move to the background. And play therapy allows me to move around just the right amount. My job is my lifeline. I love it sooo much.
I have and am trying many things to relieve my pain. Steroid injections, high doses of prednisone (I’m still recovering from those side effects.), NSAIDs, nerve ablations, acupuncture, massage therapy, physical therapy, diet changes (I’m still working on getting better with that.), and my only source of significant help – biologics and other immune suppressants. On good days, those life-saving meds take me from a 10 to a 6 on the pain scale. My body hates me and is constantly attacking.
When received regularly massage therapy really helps. But it’s not covered by insurance, so I can’t afford to go any more than once a month. And even that hasn’t happened during the pandemic. Physical therapy on an ongoing consistent basis is also really helpful. But again, insurance. I’ve been discharged for lack of progress. Insurance companies don’t like for physical therapy to be a maintenance strategy. In the past NSAIDs were also marginally helpful, but I can no longer take them because of my ulcerative colitis. Everything else provided such temporary relief that it wasn’t worth the time or money. Well except for steroids, but with the side effects, I hope I never have to be on them again.
Soooo… I say all that to say that opioids have most definitely been a last resort. And as it is, I’m on such low doses (50 mg. tablet of Tramadol twice a day), that it really only makes my pain manageable enough for me to somewhat function and sleep (mostly) and still work full-time.
The opioid crisis is legitimately a crisis. As a psychotherapist, I have seen the devastating effects on those addicted to pain medications and their friends and family. In no way is this post meant to minimize the crisis and the mismanagement of opioids by the medical community that greatly contributed to it.
But we’ve swung way too far the other way. And I am shamed on a regular basis for needing Tramadol to function. And sometimes denied the pain meds I need. Often this is unintentional – it’s very much a systemic issue. And medical professionals in my life are usually just following the laws and regulations. Well except for the pharmacy that deleted my prescription from their system – that’s a whole other thing. Medical negligence and trauma for sure.
During my first really severe ulcerative colitis flare, I legitimately thought I might die. And I was in so. much. pain. Eventually and reluctantly I went to the ER. I chose Johns Hopkins because I thought for sure being one of the most renowned hospitals in the world, they could help me. I arrived at the ER to see signs posted everywhere that they don’t give out pain meds to chronic pain patients. What was I offered as an ulcerative colitis patient after waiting a really long time? A high dose of ibuprofen. Ummm. Ok. First I could have just taken that at home. Second as a UC patient, I can’t take NSAIDs. I was eventually sent home with no help. Probably more on that horrendous visit in a later post about medical trauma.
After having to already jump through numerous hoops and protocols to simply be offered even minimal opioid meds from my pain management physician, I have also had much difficulty getting my prescription filled almost every single month. First no refills are provided, so every month I have to schedule another appointment with my pain management physician in order for him to send another 30-day supply to the pharmacy. This part (other than the time and effort involved) I don’t mind so much because I have a highly skilled and compassionate pain physician. And I enjoy my visits with him.
Every month that he sends my prescription to the pharmacy, I get a text telling me I have to wait for my prescription to be filled because of state regulations. Often I have gotten an additional text from the pharmacy after waiting patiently for the day to come when they will fill it, saying that my prescription isn’t in stock and I need to transfer it to another pharmacy. However, the other pharmacy won’t allow me to transfer it (even within the same company – CVS for example) because it violates state regulations. If this happens on a Saturday, I have to wait until Monday to call my physician’s office and hope that he will send another prescription in for me to the other pharmacy. He always does because again he is kind and compassionate. Then I have to hope that the new pharmacy has Tramadol in stock to avoid repeating those steps. I then have to check back numerous times to ensure that the prescription is filled so that I can go to the pharmacy and pick it up. Regulations and laws prevent pain meds from being shipped to my home (even during a pandemic). Sometimes I skip taking my needed pain meds so that I have a few extra available for these circumstances. I just plan on not being able to sleep those nights.
In addition to these hurdles, my pain management physician’s office is required to subject me to random urine tests. During these tests I’m not even allowed to flush the toilet or wash my hands until my urine is handed over to the staff waiting right outside the door.
Again, I totally get it. There is a real crisis. But, there has to be a better way of treating chronic pain patients. Because all of this is not only shaming, but it keeps me from getting the treatments I need to function. I suffer needlessly on a regular basis. The pendulum needs to swing back more to the center.
So, please stop shaming chronic pain patients. I am not addicted to my pain medication, other than simply needing it to function and continue helping my clients and my own family. Not everyone becomes addicted. I am under the care of a very careful and compassionate physician who regularly monitors me.
And for those chronic pain patients like me needing opioid meds to function: I see you and I hear you. Taking your meds is not shameful. You are not an addict. You are not a drug seeker. You are a warrior.
