Over the past year I have been been prescribed a wealth of pain medications, each causing different side affects that were fare worse than the pain. It started with Gabapentin. Days after taking it, I felt like an alien was about to burst out of my stomach late at night.
Because the pain is so intense at times, it makes it very difficult for me to sleep. Trazadone was then prescribed. It would help me fall asleep, but not stay asleep. I would toss and turn every night trying to find a comfortable position to sleep in.
In April of 2026 I met with a pain management doctor and explained that I have pain in my left hip that is so bad that wearing pants is unbearable. The pain in my lower left back makes it difficult to sit comfortable. In the middle of the night, I have muscle spams in my right calf in the middle of the night that it wakes me and continues often for an hour at a time. She prescribes Tizanidine for the muscle spasms and Meloxicam for the pain. She made it very clear that while taking these meds, I cannot drink alcohol while taking the Meloxicam. My husband & I enjoy breweries, bourbon and he home brews beer. I made the decision to stop drinking in hopes that the pain and spasms would decrease. Unfortunately, the spasms got worse and there was no change in pain. Less than one week after taking it, I struggled with headaches and dizzy spells that left me questioning if I should drive. After a very frustrating and painful day, I wanted a beer. After one beer, the pain decreased quite a bit.
In May, the pain management doctor completed the first round of diagnostic x-ray guided injections in my back. That provided 50% relief for a short period of time. This doctor also referred me to a rheumatologist for an Ehlers Danlos eval and to check my electrolyte levels for the spasms.
Fast forward to July, I had 8 more diagnostic injections in my spine that provided no relief with the plan of 8 more two weeks later if the previous round was successful. I returned to my spine doctor, she advised that I not return for the last round of injections given that they did not provide any relief and prescribes Methocarbamol and Celebrex for pain and muscle spasms. There was still no change to the pain.
The beginning of August, feeling hopeless that the pain would not go away, I decided to try a chiropractor, thankfully we have one in the family. He recommends that I go off of all pain medications and we agree on limited bedrest. It’s kind of hard to be a realtor and be on bedrest. Going off of the pain meds allows me to understand what movements cause cause the pain and to learn to avoid those movements. Being on bedrest would allow my body the chance to heal. I have bursitis and a torn ligament in my left hip, bulging discs in my back, and pain in my left foot. Every step I take is painful, often debilitating. One of the first questions the chiropractor asked me on the phone was if I am able to walk and drive. I am able to do both.
A few weeks late I had my appointment with the Rheumatologist. After a thorough appointment, he explained that there could be an issue with the pain receptors in my brain. We discussed possibly doing an MRI to determine this. He prescribed Trazadone for the pain. I have been on a gradually increased dose with little change in pain.
At the end of August I had a follow up with the spine doctor who then prescribed Cymbalta for the pain. The day after taking it, I felt terrible on the minimum dose. I decided it wasn’t for me and discontinued it the next day.
In September I met with a new pain doctor. My chiropractor sent me to see him for a consultation on Prolo-Therapy. He takes a much different approach to managing pain and understanding the patient. The appointment with him was an hour and a half. I FELT HEARD. He believes there’s another ligament in my hip that is contributing to my pain. At the time, he decided to help relax my very tight muscles and did six lidocaine injections, two in my right hip, two in my back, the remaining in my left hip. He explained it could take up to a week for it to kick in. While it did provide some relief, it wasn’t enough that would allow me to comfortably walk my dogs, spend time in a store or be on my feet for long.
Beer, beer takes away the pain. The Ethanol in beer interacts with the receptors in the brain. Beer is also an inflammatory so for once, something that would typically increase pain, actually helps me for a short period of time. This weekend was a very physical weekend. I woke up this morning with back and hip pain off the charts, the slightest touch to my hip causing pain over a level 10. I took my Trazadone, not a single bit of relief. At dinner, I opted to have two beers. That gave me about two hours of relief.
I have tried 5mg gummies, the ones that are supposed to make me feel relaxed on the couch, knock me out. I’ve also tried a bit of medicinal marijuana, and have not had the best reaction. I have had one cortisone injection in my hip that provided 30 days of 80% relief. Because of my weakened ligaments, I cannot consider another injection because it makes the ligaments frail and can break. I long for a day that I can wake up, jump out of bed, and go about my day, and a night where I can sleep without pain.
Disclaimer: I am sharing my personal journey with Ehlers-Danlos Syndrome for community and educational purposes. I am not a medical professional, and this content should not be taken as medical advice. Always consult your healthcare team regarding your own health.
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