(This post was initially written 3 weeks ago. I have posted an update at the end.)
I want desperately to be writing about my beautiful new wedding dress or the tasting appointment for our reception that we have booked with the caterers today. I want to be posting about my sweet kids or the ‘walking a dog without a cane’ experience I had this week- and I will. But first, I need to talk about something I’m doing right now. One of the hardest things I’ve ever done, it turns out.
In late 2013, before my MCTD diagnosis, my Crohn’s and gastro symptoms on top of my joint and mobility issues were debilitating. My pain was so bad that I was starting to lose my temper and lash out at myself and my loved ones. When my doctors acknowledged this I felt seen, and heard, and I welcomed the Dilaudid prescription that came into my life.
I didn’t anticipate the chronicity of my pain. I didn’t anticipate the gradual increase in my prescription from 1mg daily, to 3mg. Then the addition of 3mg extended release hydromorphone to that- the subsequent change up to 4mg. At one point, under my doctors’ supervision, I was taking 10-12mg of hydromorphone a day. We had additional supplements of Nabalone (a synthesized THC), and we tried countless NSAIDs to see if I could tolerate them despite my Crohn’s and potential gastro bleeding.
Was I ashamed? No. Did I wake up every morning? Yes. Get my kids to school? You bet. Hold down a job and social life? 100%. And I can’t stress this enough- the treatment of my pain and my ability to finally achieve the quality of life I desperately needed is what made me realize that I didn’t want to take all these meds any more. I started tapering off over 2 years ago.
Yes. I have been taking some form of hydromorphone every day for over 5 years.
Last year I had tapered down to 7mg daily. I had introduced basic mindfulness, made dietary changes, and focused on exercise to help me with those changes, but the mood swings, chills, nausea, and emotional confusion were still all there as I detoxed down to the smaller dose. The blessing of my stroke-like allergic reaction to a biologic last year at least meant that I felt no pain for a time- yay for paresthesia! I jumped at the chance to come off Dilaudid although we did introduce a medical marijuana prescription for breakthrough pain and flare ups.
Unfortunately the pain came back. And my reaction to the THC oil was different- I ‘felt’ high and that meant I didn’t take it until the evenings after the kids were down. I didn’t want them to see me with altered behaviour. That wasn’t exactly effective to help me through my day, so even with a mindfulness meditation program, breathing, and CBD oil (which has no psychotropic effects) we went back to 1-2 mg of Dilaudid per day.
Pain prescriptions are not necessarily the enemy. Was it strange that hydromorphone (stronger than Heroine, Morphine, Oxycodone etc) was easier to get a prescription for than marijuana- or even a solid diagnosis? Sure. Was it weirder still that I started getting judgement from the same medical community that issued and monitored my prescription? You bet. (And that’s a whole other article.) But I still kept trying to take less medication, rely on curcumin, magnesium, PharmaGABA and other supportive supplements that would benefit my body, rather than something that would change the way my brain worked over time, and hang out in my already sluggish and overwhelmed liver.
Last week my amazing GP and I talked about my neuro symptoms and the options we had to increase other medications I have been taking. We talked about how effective something like Dilaudid could be in an acute scenario, and how I will probably always have prescription access to it. We also discussed the importance of specialists understanding my baseline symptoms as we move closer to new diagnoses and/or treatment options, and how drugs like hydromorphone can be blamed for symptoms that might otherwise give clear answers. Gastro issues like colonic inertia can be attributed to opioid pain treatment, as can certain cognitive issues and body aches. To the patient who is struggling with those symptoms regardless of their hydromorphone prescription (like me) this can be extremely frustrating. So I decided to quit the last 1-2mg a day.
Having been through drastic tapering and it’s side effects, and feeling confident and supported by my doctor, my meditation practice, and my wonderful friends and family, I thought it would be easy.
Today is day 7 of no hydromorphone and I am still struggling with the physical symptoms it has left behind- as well as the angry resurgence of the creeping pain that has become my constant companion over the years. I was advised to rely on my medical THC/CBD oil and have slowly been feeling more comfortable with its effects and side effects. I am staying active, hydrating, eating healing foods, and practicing mindfulness multiple times daily. In the mean time the chills, nausea, irritability (that might be the kindest word I’ve used to describe my moods), exhaustion, lack of appetite, mouth and skin sores, and racing heart continue to take their toll.
“This is from an approved ‘pain treatment program’ drug, that I never abused. This is the side effect of something my doctors were prescribing and monitoring. This is the most prescribed drug class in North America- maybe even the world..”
Last night as I grappled with the change I was making, I couldn’t stop thinking about this. I couldn’t stop thinking about all those who feel trapped in their prescriptions, or in their pain, or in what I am now realizing is the stigma of pain management. Because the worst part of going through these changes (whether you are going up a dose, or trying to quit daily use), is the social connotation of perceived weakness and mistrust that often accompanies discussions of chronic pain, and the lack of support that can often enable disordered usage and addiction.
Make no mistake. It is terrifying to constantly be in pain. It is also terrifying to treat pain knowing that there is a chance you might have to be in even more pain while you give up something that worked to make it manageable.
If you know someone who is part of a pain treatment program, or who has been prescribed an opioid for short or long term use, check in with them. Let them know that there is nothing to be ashamed of- there is no judgement in the management of chronic pain, and with support there are multiple approaches to either replace or complement their doctor’s preferred treatment courses.
If you are concerned about your (or someone else’s) behavioural changes after continued prescription use, look for some of these common signs of reliance or disordered usage of Dilaudid or hydromorphone:
- Social isolation
- Stomach pain
Be sensitive to existing symptoms related to conditions that led to the prescription in the first place. And if you know that someone is going through withdrawal- yes, even if they have followed every word and instruction their doctors ever gave them- offer them support and above all- compassion.
Common withdrawal symptoms include:
- Drug cravings
- Muscle and bone pain
- High blood pressure
- Agitation or irritability
For an interesting read on the opioid crisis, check out this article from CNN.
It is now day 26 of being completely free of hydromorphone. I have noticed that I have more energy, and I’m far less irritable. During pain flares (especially at the end of my day when my pain is the worst) I still have to actively breathe into my discomfort and self talk to get through what seems like the simple fix of taking just one little pill. But I keep going, and I keep taking it one breath at a time.