Hear Hear! A topic close to my heart. Lisa Klimas at Mast Attack published an open letter to healthcare practitioners on the topic of pain medications. I started to write her a message, and I realized that it could have a wider audience, so I put most of it here. The more voices there are, the better chance we will be heard.
Lisa, thank you for your post. As you know, my experience was shocking, stunning, horrendous and abusive, but I’ve heard the same story over and over from other patients. When you said that trouble with physicians is a symptom of MCAS I laughed loudly enough that Hubby came to check on me.
Few of us are able to tell narcotics stories publicly, free of judgement from friends, family and medical professionals. I can, so I thought I’d share my story in hopes that it will help others. In the spring of 2014, I was admitted to hospital. I was strongly encouraged (forced) to quitting opioids cold turkey I thin 24 hours of being admitted. They wanted me to switch to suboxone as a replacement, and you have to have the opioids out before you can do that. If I didn’t have the knowledge, confidence and self-awareness that I do, it easily could have killed me. I was taking about 70mg of hydromorphone IM/day (yes, you read that right- 1 mg conks most people out). Leading up to my admission to hospital, if I didn’t have pain meds, I didn’t eat. (I have awful upper right quadrant belly pain with my reactions). I finally went in when I had NO safe foods. I hadn’t eaten in 5 days, and not at all well before that. I was exhausted- to exhausted to o fight and say ‘Are you fucking kidding me!? I can’t eat, but your top priority is decreasing my pain meds??’. I tried to be a ‘good’ patient. The first 6 hours were unpleasant, well, horrid actually, but I knew what to expect. I got muscle cramps, as expected, then I started to get tonic spasms – I felt like a marionette on a string. It was the middle of the night, The on call internist couldn’t be convinced to break the withdrawl. The nurse finally got her to come and see me when they got strong enough that I threw myself out of bed. I’d be fine, then be hit with a wave of uncontrolled flailing. It was terrifying. She was unamused to come and see me, she gave me the ‘You’re crazy’ look when I tried to describe it. Then she saw an episode. She looked at me and simply said ‘We’re stopping the withdrawl”. I was told the next morning that it was impossible for withdrawl to cause that. Well, at least until they saw my blood tests. My potassium was 2.0. They had the labs, but nobody thought to look at them… [Note to my readers- that’s dangerously low. Potassium is an electrolyte- you need it to send electrical signals to your muscles. Even slightly low electrolytes can cause cardiac problems. Adding severe physical stress to that is a VERY poor plan].
I have a lot more knowledge about addiction than the average bear. My parents wrote the Ontario standards for addiction counselors. My father is a recovered alcoholic, and ran the Donwood, one of the few in-patient treatment centers in Canada. I knew I wasn’t addicted, only chemically dependent, but try convincing them. One of the cardinal rules of MCAS is make changes so sllloooooowwlllyy. My body doesn’t deal with change well. I was told that opioid withdrawl cannot be dangerous. I was told I’d have to just ‘deal’ with the pain. I was told that you ‘can’t’ taper off opioids. (MY 10/10 on the pain scale is abdominal pain from a mast cell reaction. Not take pain meds for that!? F.U.!). They were wrong on all counts. Now, as anyone who knows the Wood Sisters knows- telling us that we can’t do something something is a very good way to get us to do exactly that. I found other pain meds that worked, and tapered off. It took almost two years. Apparently another ‘impossible’ thing my body does.
My GP got in hot water with the college for continuing to prescribe opiods to me as I tapered down. Despite letters explaining, going to professional development and the fact that I’d gone from 90mg/day to about 10 by that point, she was called to a review. As soon as they actually listened to her, it was dismissed, but she went through two years of hell for me, based on the premise that it isn’t possible to taper off narcotics. Somehow we have governing bodies who are working against both doctors and patients when it comes to opioids. It is so illogical (I know, I know, I sound like Spock. Not such a bad thing in my books).
I live in Vancouver. The opioid crisis has been acute here, everybody’s lives are touched by it . There’s a stack of noloxzone kits in my physician’s waiting area. There are public awareness posters all over the place. I’ve heard stories of paramedics who attended multiple fentanyl overdose deaths in a row, and we personally know a few people that have died from it. Here, the three groups most affected are teens smoking questionable weed, psychiatric patients self medicating with street drugs, and chronic pain patients. Group number one- Canada is on track to legalize recreational pot, which should dramatically reduce deaths from contaminated cannabis. (I think they’ve done the right thing there- just as with prohibition, risky activities become riskier if they’re illegal- legality won’t stop those who want it.). Group number two? Street ‘medication’ users learn very quickly that if they ask for help, they can’t do anything until they they are off the street drugs. It’s like they are saying ‘Everything you need is here- don’t mind the the brick wall at the entrance.’. The number of heroin linked fentanyl OD deaths that are occurring has fallen here recently. Not because people are off the heroin, many because so many have died. For chronic pain patients- I think their actions are making it worse. Many hospitals here have doctors who do both pain management and addiction- I don’t think that has even the vaguest chance of working. They’ve completely forgotten that ‘addiction’ and ‘dependence’ are NOT the same. If you take someone with chronic pain and suddenly cut off their meds (which happens all the time), you know what you are likely to create? A street drug user. Great idea, idiots.
Lisa, I can only guess what precipitated your post- being that you are unexpectedly far from home. I hope you got what you needed, despite being treated inhumanely. I agree wholeheartedly, it won’t change until physicians see us as people rather than conditions.