As a teenager with a chronic disease called Juvenile Dermatomyositis and Juvenile Arthritis, I have chronic pain. Daily pain. I am always in pain at some level.
Chronic Pain Management
I have learned to manage pain pretty well for the most part. First, I try non-medication things like rest, relaxing, stretching, and sometimes just waiting. If that doesn’t work or the pain is more severe, I start with Tylenol or Advil, and I might take something stronger like Tylenol #3 occasionally. I am pretty reluctant to take anything stronger than Tylenol or Advil because a lot of times that can make me drowsy.
During the last five years since my diagnosis, I have had periods of pain that were very severe and affected my quality of life.
Doctor’s Response to Chronic Pain Management
At times, it seemed like the doctors were hesitant to do much to help. Often, the doctor would rearrange my arthritis meds or add an anti-inflammatory and add the wonderful prescription of the “Let’s see how this helps at the next visit” statement. I went through this for month after month without much relief. I felt like I was stuck in a never-ending cycle of waiting without much change.
One day, I started crying at my visit because I was so frustrated by the process. I was tired of having severe pain every day, understandably. Suddenly, after seeing my tears my doctor sprang to action. He ordered an MRI, and he gave me a stronger pain medicine if needed. He also adjusted my arthritis meds again to see if that would help. Then, he surprised me and said that he wanted me to see a back specialist because they might have answers that he didn’t consider. I was so happy to feel heard, but it seemed as if my words didn’t mean very much until he saw physical signs of my pain.
The back specialist did some tests, tried some new meds, and prescribed physical therapy. I am not sure if that will help yet, but I am always happy to try something different if there is a possibility of relief. He did say that there were other options we could try if these original ideas didn’t work.
Pain Spike Events
Unfortunately, I have been to a whopping total of two physical therapy sessions because right after I started, I developed meningitis as a side effect of my IVIG treatment. As if I needed another problem. This was very frustrating because it was my third time experiencing the excruciating pain that comes along with meningitis. It had been 15 months since my last time, and I was starting to hope that we had found a brand that didn’t cause meningitis for me. The first two times I was in the hospital for the meningitis, the doctors managed my pain well, so I was expecting the same this time.
For those of you who don’t know, there isn’t a lot that can be done for aseptic meningitis other than treating the symptoms and waiting. The first time had me in the hospital for 8 days. The second time, I was in the hospital 6 days. I received anti-nausea meds, fluids, anti-inflammatory meds, steroids, and IV pain meds.
This time was a very different experience. The first two days, my pain was managed well. However, once the weekday shift of hospitalists came on Monday, everything changed. I was very nauseated and my pain was not under control at all. I was very frustrated because I kept telling everyone that would listen that I was having severe pain. Also, they were seeing me nauseated, but they were giving me oral pain meds that took too long to work and made my nausea worse.
My Worst Nightmare: A Helpless Victim
One night, a resident came into my room at 3am which was three hours after my nurse called him after I was unable to sleep because of the pain. Finally after hours in pain, I had just fallen asleep when he walked in the room and flipped on all the overhead lights. He then proceeded to shake me awake just to tell me that he couldn’t do anything to help me. As if that wasn’t bad enough, he then made it worse by saying that from what he could see and apparently feel, I didn’t have pain that needed more pain medicine. He then insulted me further by saying that teenagers like to get the high from pain meds and that he didn’t think I needed anything stronger. I tried to explain that the IV meds were what helped last time and that my pain was not controlled like it was the previous two times. He said he couldn’t help.
I felt like such a helpless victim. I couldn’t to anything about it. I couldn’t say what I wanted to say because I was afraid they might treat me differently for standing up for myself. The doctor had complete control over my care and I couldn’t do a single thing about it.
Thankfully, I had a fantastic nurse (Thanks Megan!) who called the charge nurse who contacted the head doctor. That doctor ordered IV meds that helped me relax and get rest and relief that I desperately needed. Not only did he help at that moment, but he also called in the Pain Team.
The pain team is in charge of figuring out how to manage pain and how to find options that you can go home on. Immediately, they put me on a scheduled pain med that was the oral form of what worked for me before, and they also ordered IV dosage in case I needed it in between the oral doses. They ordered a different nausea med that really made a huge difference. Most importantly, they worked with me and came up with a plan to help me feel better. I felt like I could be honest with them and tell them how my pain was doing and what things were working. It was a nice change from being afraid.
Chronic Pain and Pain Med Abuse
I know that pain medicine is a big problem in this country, and I know that many teenagers do take advantage of medications for a high. However, there are many people like me with chronic pain, who would rather nothing more than to never take another medication of any type for the rest of my life. I don’t like the way pain meds make me feel, and I certainly don’t want to take them for “fun.” I don’t understand why they would treat me so badly when I have been a patient there for almost five years, and I have never had IV pain meds except when I had meningitis and maybe one other time when I had something severe when I was newly diagnosed. You would think that they would read my record and see that I am not taking many pain meds. You would think that even if that resident thought that I wanted a high that he would have the courtesy to try to listen in case he was wrong. However, hardly anything follows common sense in the healthcare world.
I have learned a lot from my ongoing back pain and from this hospital stay. You will be happy to know that I was able to be discharged a few days after this incident, and I found it completely easy to return to life without being on IV pain meds. I have learned that I need to try to be as descriptive as I can with the pain and to try to explain how it impacts my life.
Chronic Pain Assessment
I think doctors and nurses can understand better by asking questions that center around how the pain affects your life rather than asking so many pain scale and “describe your pain” questions. Those are very difficult to answer. Almost every time they ask me these questions they go “I know these are hard to answer but try to come up with something.”
I know doctors try to use the pain scale because it’s uniform. 1 through 10 is objective — except when it comes to pain, which is why they always apologize before starting. Instead, doctors could do a much better job of quantifying pain by getting to know the patient and asking personalized questions. Here are some questions they could ask me to determine how much pain I was in:
- Could you ride your horse with this much pain?
- Could you walk up a flight of stairs?
- Could you walk down the hall?
- Could you sit at a desk and type on a computer for 30 minutes?
- Could you sit at a table and eat a meal with other people?
- Is there any position where you can get comfortable for 5 minutes?
- Could you sit comfortably long enough to watch a 30 minute TV program?
- Do you put off eating a meal or taking medication because the thought of going to get it is too painful?
- Does the pain cause you to miss activities or turn down invitations for social events?
- Could you play a game for 20 minutes?
- If you were exhausted, could you sleep?
What Does Chronic Pain Mean for My Life?
Even though I now feel that I can do a better job of describing how my pain is affecting me in my life, I am afraid of what will happen later in my life if I need pain management. Will it be common to be treated like this? Will I have doctors who listen and that I can trust? Will I find a doctor who I can communicate and collaborate with instead of fear for my care? Do other kids and teens face these same problems?
Please share your pain experience in the Comments below. I’d love to know I’m not alone.