What I Wish My Doctor Understood About Pain Meds and Ehlers-Danlos Syndrome

My primary CNP retired recently. She recommended a co-worker to me. I listened to her and scheduled with him. I know his other two Ehlers-Danlos patients and we talk, whether he knows it or not, whether he likes it or not. I misunderstood her regarding my pain medications. She gave me paper copies for August and September, but I was supposed to call in my refill for July. I completely misunderstood that, and I ran out.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

I knew what would happen when I ran out. I tried not to panic. I made sure to e-mail my new provider about it and ask him if he could please refill my medications (as was his responsibility as my new provider). I apologized for the mistake I’d made as well. However, as of this writing, he hasn’t gotten back to me about this or my other medications. I do know I’m currently fighting a sinus infection that he knows about and was supposed to call an antibiotic in for on Friday. I also know I’m getting fairly regular fevers now and my fatigue is much worse than normal.

I don’t know if he’ll allow me to use electronic filing for my non-opiate medications, but I know now that he will not electronically fill my opiate pain medications. Why? Honestly, I don’t know. I just know he refuses. I discovered this after I finally got home from my excursion, in a full pain flare, trying to get my medication refilled from my new provider who doesn’t seem to understand the reality of my life and the lives of many Ehlers-Danlos patients.

4:30 a.m. I just woke up.

5:17 a.m. I postponed taking my last dose of pain medication until now. I’m starting to feel my pain stronger than normal.

6:08 a.m. I’m exhausted already, contemplating going back to bed, still worried my new CNP won’t write my script.

6:26 a.m. I’m realizing how terrified I am of the high possibility of my pain causing tension and injury as a result. I’m fighting off encroaching tears because they will definitely make me tense.

7:33 a.m. Talking to husband on his drive to work, I realized I can’t handle his exaggerations today as they’re making me worry unnecessarily. Worrying is going to add to further tension in my shoulders and neck and risk a severe torticollis episode. I told him I can’t today.

7:59 a.m. My lumbar has been popping in and out all morning. Today is not going to be a “normal” pain day. It’s not going to be an OK day either. It’s going to be a bad pain day. I’m terrified and trying not to focus on the pain that’s already cutting through my last dose.

8:05 a.m. I’m on the phone with my provider’s clinic. The wait time is over 10 minutes because it’s Monday morning. I called over the weekend and was told by the automated system that they had an on-call, then was hung up on. There is no on-call for after hours or weekends. We’re on our own. Right now, I feel like I’m starting to drown.

8:11 a.m. I just got off the phone with the clinic. I let them know what happened and that it is almost guaranteed this was my fault and I forgot. I let them know my pain is getting worse by the minute and I am almost guaranteed to go to the emergency room if I don’t have a refill today. The receptionist was understanding of the urgency, but warned me that it may take up to three days. I don’t have three days, so I’m still quite terrified.

8:17 a.m. I just got a message from my former CNP’s PA letting me know she received my e-mail and sent my script request to my new CNP. I’m still praying and hoping it doesn’t take him three days.

8:42 a.m. No other news yet. I’m starting to hurt worse as 9 o’clock approaches. I’m going to go lay down. I took 4 mg of my valium to keep my muscles relaxed. I’m hoping sleep will stave off the initial smash of intense pain I will be feeling around 9:30 a.m. from being 30 minutes late taking my dose. God, I hope they call it in soon. The panic is making my pain hit early. This is not good.

11:40 a.m. I slept. This whole time, I slept. Waking up was horrific. I feel like I’m being stabbed in random places around my body. Every joint is on fire. My new CNP has not called in my prescription yet. Why? I have no clue. Maybe he doesn’t understand how serious my pain is? Maybe he doesn’t understand that after a while, I’m going to start subluxing and dislocating joints because of the muscle tension on them? Maybe he doesn’t know that him leaving me sitting here wondering is adding to the tension because I know what’s coming? Does he care?

11:56 a.m. I just got off the phone with the receptionist again. A different one this time. They “rerouted it” to be more urgent because the first receptionist lied to me about doing that. As for my prescription, they had it set to “paper” prescription instead of just sending it in. I subluxed two ribs while I was on the phone with them. I’m going to have to go pick it up.

2:26 p.m. I’ve just gotten home from having to take a Lyft to the pharmacy. My CNP will not electronically prescribe opioid medications. Why? I have no clue. It’s not that he can’t. He won’t. I had to spend close to $50 to get there. I subluxed three joints on the way up there and was working on my fourth by the time I got home. Walking up the stairs to my apartment, my knee began to feel pressure like it was going to completely dislocate to the right. Usually, it’s to the left. Speaking of the left, my left ankle is threatening to roll. I finally just took my pain medication and now have to wait for it to do anything to this pain.

I have the complete urge to scream at my CNP. I feel like he doesn’t get it. I feel like he isn’t listening to us, his three EDS patients. He could have helped me prevent these subluxations. Yes, it was my fault that my medications ran out (I’m usually very meticulous). But the moment he found out, he could have done something.

When I got home, almost subluxing my right knee on the way up the stairs and my left ankle on my way in the door, I hobbled into my bedroom and angrily yelled. I wished he could see me right then. I wished he could have seen me on an x-ray right then. I know the rule: If you can’t pop it back in, get to the ER. I know that rule. Luckily, I was able to put things back today. My wrist is still subluxing randomly, but I have a hard brace thankfully.

I’m going to write a letter to him or sit down face-to-face with him to explain what this kind of pain does. If he is going to willingly treat EDS patients, he is going to need to do a better job of listening, and understand that he needs to treat us differently than he treats other patients. I cannot comprehend any provider refusing to act quickly to prevent pain, even if it means prescribing electronically. I can’t comprehend a provider thinking physical therapy is going to somehow cure body-wide pain caused by a genetic connective tissue disease. It is not. I can’t comprehend a provider saying they understand how complex and different EDS patients are, but then leaving them hanging when they need to communicate.

Ehlers-Danlos patients know this. Our providers need to as well.

Update: As of the date of publication, I have discovered that my new CNP will not, under any circumstance, allow for any electronic prescribing of anything considered to be a “controlled substance.” He has made sure I will now have to spend money or make monthly arrangements to pick up my medications, including the only medication that breaks up torticollis: valium.