Cheryl's Experience with Long Covid and Managing Symptoms

Today, Cheryl from Australia, shares her story of LDN for long Covid that resulted in fibromyalgia and chronic fatigue syndrome.

I got COVID in August 2021, which resulted in a severe infection with double pneumonia and landed me in the hospital for a month. When I arrived home from the hospital a month later, that was exactly when long Covid began. However, back then, it was still relatively new, and nobody knew much about it. It is actually very common for long Covid to set in a month after having Covid. As you mentioned, I've since been diagnosed with chronic fatigue syndrome (CFS) and fibromyalgia, which are my worst symptoms.

Would you like me to go through the treatment options?

Yes, I would. I'd like to know when you were diagnosed, what treatment options you were given, and what has happened from then until now.

I had to seek help from a long Covid clinic because no treatment options were offered, as the doctors simply didn't know what to do with my symptoms. I experienced severe pain throughout my upper body and in all of my joints, which I rated at 9 to 10 out of 10. They put me on a high dose of Gabapentin (2400 milligrams) as a treatment option, which helped alleviate the pain, but also caused drowsiness and fatigue. I eventually started researching and found out about low-dose naltrexone (LDN), which my doctor was willing to prescribe. As I gradually increased the LDN dosage, I was able to decrease the Gabapentin slowly as well. Over the years, my pain has decreased from 9-10 out of 10 to 1-2 out of 10, which has significantly improved my quality of life.

I experienced a lot of drowsiness, which wasn't great since I was already dealing with fatigue. Those were my main side effects, although I also experienced extra fatigue. I always took it at night. I was on it for at least a year. When I was on Gabapentin, my pain levels were still at least 8 out of 10. They didn't reduce much, but they took the edge off the pain. The pain was very severe, and I had to take a high dose just to cope with it. It got me to a level where I could manage, but I couldn't do much. My fatigue was so bad that I could only go out once a week to shop for 18 months. The post-exertional malaise was so bad that for 48 hours after going out, I would sleep for 24 hours straight. I had to set an alarm to wake up and eat before going back to sleep.

I have been taking Low Dose Naltrexone (LDN) for the past 18 months, and it has significantly reduced my fatigue. It took some time, but now I can actually get up and function. Before taking LDN, I was practically nonfunctional. Taking it when I wake up works best for me, giving me a bit of energy to cope with the day. It wasn't just about the duration of taking LDN, but also finding the right dosage for me. It's been a combination of factors that has allowed me to really improve. Between 8 and 12 months, I didn't experience much improvement, and I could only shower once a week. However, now I can go out every day, and my post-exertional malaise is almost non-existent. I always advise people to see LDN as a long-term solution and not to expect instant results. It took a while for me, but it has definitely been worth it. Some people may notice amazing results in the first month, but for others, like me, it takes time and patience. It's not easy to be patient when you're not feeling well, but sticking with it is well worth it. LDN has also significantly reduced my severe shortness of breath and swallowing issues. I used to struggle to swallow medications, but that hasn't happened in quite a few months. My nighttime throat spasms have also reduced in severity and frequency. Despite being diagnosed with paralyzed vocal cords and vocal cord dysfunction, a combination of LDN and exercises taught by a speech pathologist has helped me greatly. Additionally, the headaches with concurrent eye pain have stopped, which I am thankful for. I've been lucky to have only experienced fairly mild brain fog compared to others with severe long Covid.

Cheryl hopes her story will give hope to others struggling with Long Covid.