I came across this post on Reddit while searching for fibromyalgia help, and it’s absolutely horrifying. The original post was by a 17 year old who was diagnosed with fibromyalgia 6 months prior. They were asking if they should go to the emergency room for a fibromyalgia flare up. Here is the original post on Reddit. I recommend reading through the comments to get an idea of what chronic pain/fibromyalgia patients have to deal with. It’s so very tragic.
Let me first explain how an emergency room visit plays out for a chronic pain patient: Emergency room doctors treat the emergent problem, which in this case, is pain. They might do an x-ray or CT scan to see if something has recently happened to cause the pain. They will then give you an injection of morphine to treat the pain. Once the pain is under control, they will tell you to follow up with pain management, and in my case, spine surgery. Then, after keeping you for an exhausting 6-8 hours, they will discharge you.
Now let’s move on to what happens the very next day: Same pain, same ER visit. The doctors will be very angry with you for returning to the ER and not going to pain management. They might treat you a second time. Mostly likely you will now be on their “Frequent Flier” list, which is a list of known drug seekers. By the third time you show up in the ER, you are for sure a known drug seeker now, and you will never get decent treatment at that facility ever again – no matter what you go to the ER for – chronic pain related or not.
This happened to me in Oakland, CA, at Kaiser Permanente. I didn’t know I had been flagged as a drug seeker in their system. I had a visit with a psychiatrist, and the very first thing she said was, “So I understand you have a problem with opioids.” I hadn’t taken opioid medication in nearly 10 years at that point and was doing fairly well pain-wise. I didn’t have any issues quitting the opioids and I never took those medications again. My only problem with opioids was that I hated them and never wanted them in my body ever again. Fast forward about 8 years when I had my last spine surgery at Kaiser. When I was recovering overnight in the hospital, all they offered me was a single 5mg norco pill. That was it. They discharged me with prescription ibuprofen. If that sounds horrifying, I can assure you it was. Spine surgery is incredibly difficult to recover from. The recovery is actually slowed if pain isn’t treated properly, so at that point, they are causing harm.
The Reddit post is about fibromyalgia specifically, and that brings its own set of difficulties. There are many doctors who don’t believe it’s even a real disease, and won’t do anything to treat it. The user in this post has decided not to tell any doctors they have fibromyalgia:
Imagine not even telling your primary doctor about a life-controlling disease out of fear of not receiving proper health care when you need it. Also, if they see fibromyalgia in your health history, they instantly think you’re a drug seeker and give you the runaround:
I had a problem with one of my surgeries at Kaiser. It was a spinal cord stimulator trial implant. The lead wires had migrated severely and were pressing on nerve roots in my spine, and it was incredibly painful. The pain management doctor advised me to go to the ER. They kept me there for 8 hours, did a CT scan and saw how badly migrated the leads were, and all they did was give me a prednisone pill. They didn’t even check the implant for infection. All they needed to do was remove the wires, but they treated me like an addict instead. A man was put next to me in the ER with chest pains. He said his pain was a 5/10. They gave him 2 morphine injections. I was at a 10 and they did nothing. If I stayed home instead of going to the ER, I would have been able to deal with it much better:
And much like my experience with the spinal cord stimulator, doctors can get so focused on pain patients being drug seekers that they completely miss the actual problem. This next response is completely horrifying:
It’s already incredibly dangerous that doctors are simply not treating pain patients anymore. Since the opioid crisis, most pain patients have been left out in the cold. Anyone claiming to have chronic pain is treated as a drug seeker. Even people like me with over 20 years of medical history. Neither my current pain management doctor nor rheumatologist are willing to prescribe any medication at all. We are clearly shut out of the emergency room, and we are also often shut out of treatment by the very specialists who are supposed to be treating us. Where does the help come from? Where are we supposed to go? How are we ever supposed to get better and become a contributing member of our communities?
With the system in its current state, there are unfortunately no answers to those questions. It doesn’t stop with a lack of access to medication either. There is also a lack of access to other treatments and procedures that can help. I have resorted to herbal supplements and whatever snake-oil cures I can find. 99% of these things don’t work, but I have to keep trying. Usually all I can do is just curl up into a ball and count the seconds until the day is over and I can try to go to sleep. This Reddit post is the exact reason I started this website. I want everyone to see how pain patients are treated and how we have no options. To say we are “stuck between a rock and a hard place” is putting it mildly. We need better options for pain patients. Even pets get better treatment at the veterinarian. We need compassion for pain patients and we need treatment options.