Let’s talk about pain: post #3

This post is dedicate to everybody who helped me survive this pain, I love you all!

Most people don't talk about pain. Its seen as weakness, or a personal fault. When you have a chronic illness pain is normal, and we talk about extreme symptoms with a very casual tone. Able-bodied people don't always know how to respond, and that makes it more difficult to talk about. As difficult as it was to write this (mentally or physically), I'm doing this to spread awareness of just how hard a life with chronic pain can be.

I’ve had chronic illness symptoms as early as middle school. By the time I was in high school, I had daily symptoms than only got worse as I grew older. The chronic nausea, headaches, aches, nerve pain, and unrelenting fatigue were all normal, so I never mentioned it. In middle and high school I seemed to injure easily. I sprained my ankle multiple times in middle school, had issues with ribs coming out of place, and broke my foot in 3 places in high school just from walking a lot. Over the counter painkillers were never effective on me. When I moved to LA, I discovered one of the best medicines- medical marijuana. It helped with my pain, headaches, severe insomnia, anxiety, nausea, and appetite. I’ve relied on indica for medical reasons for around 2 years now. At first it was recreational, but I quickly realized it was a very helpful tool in fighting my chronic illness.


In 2018, at age 19, I started having a fibromyalgia flare so bad that school was very difficult. That year was the first time I realized I needed help from a medical professional because my symptoms were interfering with my life. I saw a Primary care physician through my parent’s insurance. He was very unhelpful and all of the specialists had a 6 month waitlist. This was from Oregon and I had trouble finding providers that were close to me. I decided to enroll in a better insurance through my school. I had used the student health center before, but had never seen a doctor from USC Keck school of medicine. My new insurance let me easily see this highly rated medical institution. I had my doctor from the student health center write me some referrals for keck medicine.


The first Keck medicine doctor I saw was a rheumatologist. I had a huge list of symptoms and explained how difficult my life had become due to my unmanageable health. He diagnosed me with fibromyalgia and told me to come back and see him in a month. The entire appointment he ignored or interrupted me while I was speaking to him. He also told me that he would probably forget my gender/ pronouns because it doesn’t matter. The entire thing left me with a bad feeling. While I waited a month to see him again (I wanted another chance because the people that worked there all loved him), my psychiatrist was the one who tried to help me manage pain. She started me on gabapentin and duloxetine, and told me that magnesium helps with migraines. Magnesium was able to decrease the frequency of my migraines, but the meds did not work. In fact, gabapentin gave me bad brain fog as a side effect. The next time my rheumatologist saw me he did a lidocaine trigger point injection procedure. It was over 20 shots, and it gave me less than a day of relief. In fall semester as well as going to doctors and specialists, I did occupational therapy. The basis of that is that you can change your lifestyle to ease your symptoms and have your needs met easier.


Fall semester I caught a cold and was coughing a lot. My rib slipped out of place and took a day to return to its place. However, it left me in a horrible amount of pain. I saw my old primary care doctor from providence and he gave me meloxicam, a painkiller in the same class as Tylenol. It did nothing for the pain that was seriously interfering with my schoolwork and home life. I went to the USC student health clinic and begged for better pain meds. It had been more than a week of 8.5/10 pain, and they called me drug seeking. When I insisted on seeing the director of the clinic I was denied meds, but I got some referrals for Keck pain, since they said my pain may be due to another condition. After 3 weeks of unrelenting pain, I went to a walk-in clinic in Hollywood out of desperation. The doctor listened to my lungs and noticed I couldn’t take a full breathe because of my pain and gave me codeine and a device to breathe in to that would strengthen my lungs. I was so relieved, I started crying in his office. Later, I would learn, just how hard it is to get decent pain management.


I followed up on the referral and saw Keck Pain in late November. By then, I’d become alarmed at the progression of my joint and mobility issues. I ordered my first cane that month. I saw multiple doctors my only appointment at Keck pain. I explained my issues, and they actually listened to me. We talked about treatments, and they advised me against another lidocaine trigger point procedure. I realized how bad all my doctors in LA had been when I finally met good doctors. They asked more about my “natural flexibility” and by the end of my session I got some big news: my symptoms match that of Ehlers-Danlos Syndrome. It was a terrifying moment realizing I have more than one painful condition with no cure. Even worse, EDS is progressive and has no cure. They started me on 2 new meds, ketamine pills and low dose naltrexone, and I was hopeful but afraid as the appointment ended. Keck pain told me I had to go back to my rheumatologist and did not listen to my opinion on him. When I went back to Rheumatology right before the semester ended and I began my medical leave, he did not even talk to me about EDS, and wrote me a referral without even thinking about my case. I was so angry. I was on medical leave and lost my insurance and sense of direction. The new meds were too expensive and also ineffective, and I was unable to answer my burning question- do I have EDS?


In December I got my first wheelchair. It was a rental, for a trip I took with my partner (at the time). I knew we would be active and was unsure of how my body would react to all the exertion. We decided to have a beautiful snowy hike. As we got up higher, my backpack seemed to weigh a ton and I needed to rely on my canes more and more (by then I had 2 canes and needed both for the trip). My legs were shaking horribly and my chest was on fire. I was so determined to finish the hike. Carrisa had to stop as we had reached an icy, slippery area and they did not have the right shoes. I really wanted to finish the hike, so I took off and started climbing through the snow towards the peak. I fell so many times, but I had my heart set on reaching the top. I was so weak and shaky I couldn’t stand so I was crawling up the mountain. I was probably 150 feet from the top, but I was too spent. I couldn’t even walk down the mountain; I had to sit down and push myself down the slope. By the time we reached the car I felt so defeated. I wanted to be that inspirational story- the disabled person who can beat all the odds. But I wasn’t an inspiration, just a normal guy who can’t climb a mountain. I used a wheelchair the rest of that day, and the next day I was so sore I could hardly walk but managed to have a nice day.


While I was on my medical leave, I tried as many natural methods of pain relief as I could think of. I had a daily yoga practice, but my weakness and joint instability continued to the point I could no longer do a yoga practice. I tried daily stretching, but if you are already hypermobile (which is often extreme in EDS cases) it can be unsafe and painful, so I stopped stretching too. I enrolled in an online self-help course for people with fibromyalgia and chronic fatigue syndrome to learn some ways to better manage my diagnosed condition. I got an acupressure mat, in the hopes it could help me as it claimed to. I tried topical lidocaine and lidocaine patches. Hot and cold therapy were tried on so many occasions. I also started collecting braces- I have an upper back brace, low back self-heating brace, 2 soft knee braces, 2 (newly acquired) hinged-knee braces, elbow brace, shoulder brace, and compression gloves and socks. I also started doing meditations for [chronic] pain but I never noticed a difference. During this time I relied heavily on weed to eat and sleep. It used to be the best way to treat my pain, but it stopped being able to help with moderate to severe pain. A friend recommended Kratom, a plant from asia that works on the brain like an opiate, but is not made from opium so its much safer. It gave me the level of relief I needed.It was a great relief from severe pain, insomnia, and anxiety.


The entire medical leave I was also collecting data, rating and tracking symptoms, in the hopes a doctor would find all of this helpful. The whole time I focused on my health, pacing myself, taking note of my symptoms, and Carrisa did most of the housework typically. Despite all of my efforts, not much impacted my pain levels positively. Figuring out insurance plans and how it all works took several months due to my brain fog and cognitive issues. In the end, I decided I wanted medi-cal and Carrisa had to do my application form. The first PCP I was able to see was in July, and he knew EDS but said he could do nothing except give me referrals. My joint pain and instability progressed, becoming more severe and widespread. By mid August, I had a new problem: agonizing back pain. Sitting up and any activities caused a pain flare. I’m used to this; every hobby and small task typically causes so much pain I need to rest often. However, this was a new level of pain- so bad I had severe insomnia, issues with nausea and appetite, I started having suicidal thoughts, and it even made my eyesight worse. My quality of life was finally gone. I had to readjust to a whole new level of extreme limitations. I was hanging on to a tiny sliver of hope as I waited for my pain management appointment. Sadly, I was wrong to have hope. The doctor listened to me speak for 5 minutes. He proudly says he hasn’t prescribed opiates for 3 years. I was crushed as I listened to the familiar talk about getting me a referral. This doctor even admitted I should be on opiates for my pain, but he wouldn’t give them to me.


My health, and mood were very low and only continued to get worse as more time went by. I developed severe neurological issues, and all of my doctors were in no rush at all to help me. I needed my caretaker help me do literally everything for me. My parents had a proposal to make me-I move back in with them temporarily and get care at a big research hospital, OHSU. I dropped all my plans and flew out 2 days later. My mom had me see an herbalist for acupuncture and special herbal teas, but I did not notice any change in my pain levels. The first Monday I was there we went to our family’s medical clinic, the one that treated me when I was younger, that my parents still go to. The PCP said he knows nothing about my neuro issues or EDS. We got a pile of referrals to OHSU. I asked if he could do any tests and he ordered an X-ray, which did not show any issues. The one very helpful thing he said was that a psychiatric medication I took for a year is actually neurotoxic. I quit taking it and my neuro symptoms lessened within days.


While I waited to see my new doctor, my pain as so unbearable I had to go to the ER in a nearby hospital. They gave me Dilaudid and Ativan for pain and it lessened enough for me to stop crying. The doctor did a test to see if I was experiencing a spinal cord emergency, and the results were negative. In the morning I got an MRI, which also did not show anything. I left with an oxy prescription and more questions than answers. “What’s wrong with me?” was always in my mind.


We changed physicians and Dr. Erickson was actually interested in seeing all my notes and history. I saw the nurse practitioner before I saw my new PCP. It was a really hard morning and the 30 minute car ride was too much. I waited in the lobby, crying, shaking, and on the verge of vomiting because of how bad my pain was. She listened carefully to my story and had plans for med changes. I started Baclofen and replaced Duloxetine with Amitriptyline and she gave me a shot of Toradol for my back pain. It gave me 2 much needed days of partial relief. When I was more active, the pain would come back and I’d need kratom, but at least I was waking up with no pain. After my pain came back we called the medical clinic and got a prescription for meloxicam, which did not help. All the pills I was taking didn’t seem to impact my pain. At my next visit I gave that update, desperate for relief still. My dosage was increased, and I got another Toradol shot. This time, it did nothing. Around once a week I’d need to call the clinic asking if there was anything more I could have for pain. One time we called, they suggested my mental illness could be making it worse and told me to take ibuprofen and try hot and cold therapy. I had been clear things like this never had an affect on me. I tried it just in case it helped, but there was no change in my pain levels.


My PCP wanted me to quit kratom, as she believes I was experiencing side-effects from taking high doses for months. We made plans to do a medically assisted detox (as I was physically dependent on it) by replacing the Kratom with Suboxone. I was so excited to try it, as I heard that it can be incredibly helpful for people who suffer from chronic pain. October 1^st I had my first appointment and it went very well. I got my meds from the pharmacy and picked up my new meds; Suboxone with Naltrexone and I got Clonidine for pain as well from this doctor. A few hours after taking my Suboxone tabs I noticed some amazing changes. I wasn’t in any pain. It had been 8 years since I had symptoms of chronic illness, and finally, I was free! I didn’t know how to feel emotionally, I was in shock and didn’t know what to do with a pain-free body. That night, I slept very well.


Its been exactly a week since I started suboxone and so many things have changed. Having no pain has been so beneficial to my body. My eyesight is so much better now, to the point that I was able to drive (with dad in the car in case my symptoms came back). I had a day with a lot less fatigue, which was so amazing. I sleep very well since I started suboxone. I’m a lot stronger physically, and am able to do a lot in a day with less rest that I’ve needed all year. I started swimming in the last few weeks, and since I started suboxone I’ve had soreness of a more normal intensity and duration. When I do get increased pain levels, its bearable, and it responds to natural treatments. I’ve had 3 physical therapy appointments, and today (on my 3^rd session) my therapist mentioned how much better I look, and we were able to practice standing!


Overall, my 9/10 back pain lasted nearly 2 months. It’s been an insane journey, but I’ve noticed so many changes internally, so I’m not upset it happened. I’ve also really learned who cares about me, who is willing to do anything to help me, and who was here for me as I walked through hell.

Note about Kratom: my case is very different from most people who use kratom. It's not addictive, but I used so much for so long that if I stopped taking it, I would have symptoms of withdrawal. Using it to replace the medical care I should have gotten was my issue. I still believe Kratom is a wonderful plant and can help many patients who need opiates for pain.