Chronic Pain vs. Narcotics vs. My Parents

I understand that the US is in the middle of an opioid epidemic but why do we keep shaming people that need to use them to manage their pain. I do not use any narcotic medications on a regular basis only as needed and I reserve it for really bad pain days where I am in so much pain I can’t move. For the past 6 months I have been having severe pain in my right leg and more recently pain in my entire spine. I have instability in my cervical spine (neck) and my lumbar spine (low back). The vertebrae in my neck and back show degeneration and possible osteoarthritis. I also have some mildly bulging discs in my lumbar spine and a mild posterior displacement of my L5 vertebrae over my Sacrum. I have very limited motion in my thoracic spine due to very tight spinal muscles and this causes pain in my shoulder blades, ribs, and back. I also have a connective tissue disease that causes joint dislocations and a host of other problems. I am constantly in pain. I am really lucky to have friends that don’t make me feel bad for needing to take a narcotic medication and often will encourage me to do so when they see I am in a lot of pain. But the problem comes with my parents. When I had surgery in 2016 my mom didn’t get my Tylenol #3 prescription filled because she felt I didn’t need to take it. Luckily I was fine and was not in a lot of pain (as I had lost feeling in and around the surgical site due to most likely a nerve being removed or damaged during surgery). My port surgery was brutal and my mom had my Tylenol #3 prescription filled but kept pushing me to get off it as soon as possible. The last surgery I had was in 2018 and I woke up in so much pain from that surgery I was hyperventilating and couldn’t speak or open my eyes and I was sobbing. They prescribed me Hydrocodone which my parents filled but my mom told me multiple times that I needed to get off it as soon as possible. I understand and am completely aware that many people get addicted to pain medications after a surgery, but it’s not helpful when you need to take narcotic pain medications to have people who are taking care of you openly express their discontent with you taking the medication. I used to have really bad period cramps to the point I was missing school, puking, and crying on the floor I was in so much pain (we found out I had ovarian cysts and in 2018 found out I have endometriosis which why I was in so much pain). I had 3 ER trips due to period pain and each time was prescribed Tramadol to take home.  I used to take a lot of tylenol and motrin. For tylenol to even touch the pain I had to take 2,000-2,500mg and for motrin, I had to take 1,000 mg and I would have to cycle between those every 2 to 3 hours. That much medication is not healthy for your liver or kidneys. Naproxen worked for a little while but for me to even be able to go about my daily life on my period (because my parents were against birth control when I was under 18) Tramadol worked best. My dad will make comments about my medication use and state that he “doesn’t have to take all these medications even when he’s injured.” If I mention being in pain to either of my parents I always get the response “what do you want me to do about it?” It’s never: “have you taken anything for it?” “Do you want ice or heat?” “How bad is your pain?” or even “Do you want a hug?”

I saw my neurologist and he basically gave me the options of seeing a spinal surgeon, a pain management physician for steroid injections, or continuing with PT. I told my mom this and as soon as she heard pain management she immediately says “No, you don’t need any narcotics.” I literally said nothing about narcotics and that it would be for steroid injections around the irritated nerve in my back, but what she assumed was narcotics. I know not to even ask my dad about narcotics because he is just going to tell me all about how I just need to eat better and exercise and that he doesn’t need any medications.

It takes a lot for me to say that I am in a lot of pain. I was in excruciating pain, almost in tears, and instead of helping my body by taking a Tylenol #3, I instead waited 2 hours to see if the pain would get better on its own, I stretched, ate breakfast, attempted some homework, and then asked my friend what I should do when the pain got worse. Of course he told me to take the Tylenol #3, but I should not feel that insecure and guilty about treating my pain. Because of all of the restrictions the US has put into place around narcotic medications I have a very limited supply and access. I have had my doctors and nurses tell me it’s ok to ask if I need pain meds, especially during a flare, but I don’t because if my parents find out, I am shamed for using them.

This stigma and shame surrounding using narcotic medications for pain management is shameful and I honestly believe it does more harm than good. For people who have diagnosed chronic or acute conditions that cause severe pain, they should be able to take the medication that helps them best to continue on with their daily life. I should not feel guilty or have to hide from my parents when I need to take a narcotic medication. You can’t compare your pain to other people’s pain. It’s not healthy to be in high amounts of pain for days at a time. I shouldn’t have to refuse pain medications to satisfy my parents. Chronic Illness sucks as is and it sucks even more when you have parents and/or other people in your life that make you feel like shit for something that is out of your control. My dad likes to tell my mom and I that I am only in pain because I stay in bed so much (because he assumes that if I am in my room I am in my bed. more times than not I am laying or sitting on my floor). He never thinks, maybe she’s in bed because she doesn’t feel well or she is in a lot of pain. According to him my pain and illnesses arise because I am in bed and don’t exercise enough.

The worst part of all of this, is that I cannot voice any of this to my parents because it will be met with resentment and fall on deaf ears. Instead of listening they attack, and in this situation I am the one who suffers and they don’t care enough to realize that.

Pain Unsolved

Today, at the recommendation of a nurse, I was told that I needed to get the pain in my lower legs evaluated ASAP. So my mom took me to Emergency where I spent a total of 5 hours today. My oncologist wanted to be kept in the loop of what was going on so after the doctor came in and evaluated me (and made the decision that an X-Ray was unneeded and it was just a side effect from the chemotherapy) she called my oncologist to see what he wanted her to do. He wanted to rule out a DVT (Deep Vein Thrombosis *blood clot*) so they had me get an ultrasound of both of my legs. The doctor came back and just said that this is Neuropathy and that there’s nothing she could do.

Once she heard that I had cancer, that’s all she focused on. When I tried to tell her that something is wrong because I’m here in Emergency for pain! I have only gone to Emergency one other time in the past 9 years for pain. I am not one to cry when I am in pain unless it is really bad. My pain tolerance has increased over my life because I am in constant pain and for the most part the pain that I experience daily I have just gotten used to. So for me to go to Emergency for pain (also refusing to get narcotics while was there) says something. If she would have bothered to ask normal triage questions such as “When was your last menstrual cycle?” She would’ve known that I have not had my period for the past 3 months. One thing that often happens with Amenorrhea (the absence of menstruation) is a depletion of calcium in the bones making them weaker. There is a possibility that I have stress fractures in my tibia and fibula. But she was too focused on the side effects of the chemotherapy that could directly cause pain and over looked Amenorrhea.

My mom kept telling me to stop diagnosing myself, but the only reason I do that is because I know too much about different diseases and side effects of medications because I like to learn new things and challenge myself. I don’t want to be a doctor just because they get to wear a lab coat and scrubs, I want to be a doctor because I like medicine and I like problem solving. So of course I am going to try to figure out what is wrong with me because I am sick of doctors overlooking things because they zone in on what they want it to be and will only do things that prove what they want to prove. For her to walk in, not even bother doing a full exam or even talking to me, ruling needing an X-Ray within 2 minutes of meeting me, is not a good doctor. Now I have to wait 3 days to see my oncologist, only to have him most likely order more tests, and then wait for the results of those. But on the bright side he actually listens to me and my concerns and knows that I am not one to complain about pain. My mom called him and told him about what the doctor diagnosis was and he does feel that it is just Neuropathy. Also, I have to say that nurses are for sure my favorite people to interact with. The nurse that I had tonight stopped in and talked with me after the doctor left. I was really frustrated (when I get frustrated I cry) and she came in and listened to my concerns and told me that she doesn’t agree with the doctor’s diagnosis and felt that it was something else. She also explained that because they ruled out a DVT so I didn’t have anything life threatening, my insurance wouldn’t pay for any other procedures through Emergency. If the doctor would have said that there was a possibility that the pain is not caused by neuropathy and that she was not going to run anymore test because my insurance wouldn’t pay for it, then I know that I would not have been as upset. Yeah that would’ve sucked to hear, but not as much as a doctor not even considering any other options and essentially just not caring, really sucks.

So a big thank you to nurses who clean up doctor’s messes, put up with the anger from patients and their families, doing the “dirty” work, and working long hours even when instead of thank you they get an ‘f-you.’ Also a big thank you to the doctors that listen to their patients concerns and treat their patients the way that they would want a doctor to treat the person they care about most. To the doctors that dismiss or don’t care about patient care, thank you for teaching me to get a second opinion and not to stop looking for a doctor that is going to care and try their best to figure out what’s wrong with me.

*Sorry to my therapist for the mini heart attack that she is going to have when she gets to work tomorrow and sees that I was in ER…oops*