I struggled for a long time to find a doctor who specialized in EDS and could help diagnose me. Finally, I found one in Arizona who was able to help. As I approached my appointment, I noticed I was getting more and more dizzy when I stood up. After seeing the neurologist, we tried different medications to help with autonomic dysfunction and POTS, but they either didn't work or made things worse. For the autonomic dysfunction, the doctor usually prescribes meds that decrease norepinephrine production, like guafacine and clonidine, but these made me really tired, so I stopped taking them.
Pain from EDS is different for everyone. Some don't experience much pain, while others experience a lot. I lived mostly with muscle pain from constantly contracting to hold my joints together. Muscle spasms were excruciating, and I tried everything from hot baths to TENS machines, but nothing seemed to work. The best I could do was manage day to day with a pain score of about 3-5. Some days were especially bad, but I had to push through and try to maintain a normal life. I got a medical marijuana card, which helped distract me from the pain and made it easier to sleep. My primary care doctor was okay with me using marijuana and opioids to manage my pain, but finding a pain doctor who would allow both was difficult. Finally, I found a doctor who worked with me to try non-opioid treatments, but they didn't work for me. We tried gabapentin, pregabalin, and an antidepressant, but I experienced extreme rage and depression as side effects.
Opioids were the only option left. Norco was the starting point, but I eventually had to increase to oxycodone. We tried other opioids, like oxymorphone and morphine, but only oxycodone really worked for me. I had to go up to a 50 mcg fentanyl patch, but the pain was still there. The new opioid restrictions further complicated things, and many doctors were too scared to prescribe higher doses. I eventually came off the fentanyl and was off opioids for a month before trying naltrexone, which didn't work. Then, we went back to oxycodone but added a microdose of naltrexone, which seemed to help me stay on the same dose of opioids for longer periods of time.
Over the past few years, I've mostly been on oxycodone with the microdose of naltrexone. Finding a pain doctor who would consider both marijuana and opioids was like finding a needle in a haystack, and I now pay out-of-pocket because my provider doesn't take insurance. Recently, I even tried dilauded and morphine to reset my opioid receptors for a month, but my state regulates prescriptions for opioids above 90 MME, and this has made it even more difficult. It's frustrating that the one medication that helps me manage my pain and gives me energy is so restricted and demonized.
I'm also on other medications, like nasal ketamine, which I'll discuss in another post. Until next time!
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