In September of 2018, I had pneumonia. Doc gave me a zpack but it didn’t work, so they gave me Levaquin 500mg in late October 2018. Four pills in, I felt… actually it’s hard to describe. I felt – like acid was coursing through my veins. My limbs and face went numb and late into the night I couldn’t feel or move my right arm. I immediately went to the ER. They actually thought Levaquin-induced neuropathy right away. They had me follow-up to make sure it wasn’t RA, or fibromyalgia, or MS, etc…but eventually I was lucky enough to receive a diagnosis of small fiber neuropathy secondary to Levaquin. I did not take another pill (my pneumonia finally cleared up though!!).
Relieved they knew what it was, I assumed I could now move on and they’d help me. I was mistaken. Just because we knew what happened did NOT mean there was anything that could be done. They told me physical therapy and gabapentin would help and I’d be fine in a few months.
December 2018: After my lungs had recovered from the pneumonia, I tried to go out dancing – my favorite hobby. My Achilles and my shoulders were on FIRE! I now recognize this sensation all too well as tendonitis. The next day I could barely walk. I saw a foot & ankle specialist who told me to just continue physical therapy and have them work on my Achilles and shoulders.
I struggled just to walk for quite a few weeks. I limited my step count to minimize the pain. If I took more than 1,000 steps a day, I was toast. Meanwhile, there had been no change in the neuropathy. Constant pins & needles, muscle twitches, pain all over my body. Palms and feet were the worst, but it was even in my head and face at times.
February 2019 – I had been increasing my step count and was finally feeling “normal.” I couldn’t jog or jump, but I was back to walking, thinking “at least I am independent again and the tendons are healing even though the nerves haven’t.” Since my orthopedist said that ice skating is less strenuous than jogging, I tried ice skating – for maybe a half hour at most. After skating, I went to dinner. When I was done eating, I tried to get up from the table, and my legs and ankles failed me. I actually fell. Terrified, I hobbled to my car (I managed to “walk” not crawl, but it was a struggle), and made another doctor’s appointment. They told me to go non-weight-bearing…that’s right – they recommended a wheel chair – until I didn’t have pain. They had no idea what was happening, because in their opinion “tendonitis from Levaquin goes away after a few months.” THEY WERE WRONG.
I needed that wheelchair for about 3 months. I could still walk at times, but if I tried to walk too often, the Achilles tendon pain was unbearable, along with sharp pain behind my knees and horrible plantar fasciitis. Gradually I started increasing my step count and adjusting to a new normal.
July 2019 – I was finally out of the wheelchair. I used a cane and a walker when needed and was up to ~3,000 steps a day or so. I kept going to physical therapy, but I’m not sure if it helped, or my body was just improving gradually on its own.
August 2019 – I could walk a normal day. I didn’t need a cane. I couldn’t do big outings like go to baseball games or big conference centers, but I could walk from my car to the door and up to my office. I didn’t need a wheelchair to use the bathroom and that was a huge relief.
I started the Wahl’s protocol because I’d heard good reviews in the floxie groups online, and it seemed legit. I truly believe this was the major game-changer for me. About 6 weeks into the protocol, I could walk as much as I wanted. I started dancing a bit, but not to hard and not all night long like I used to. I was also sure to sit down frequently.
December 2019 – I went dancing every night for an entire week! I didn’t rupture anything, but it DID hurt. A lot. Like I probably should not have done that. I had to take a break to re-heal again, but the “healing” went much quicker.
February 2020 – I went for a jog!! The was the first real breakthrough in over a year. I only did ~10 minutes, and it was excruciating! But the pain did not last for weeks – only a day or so. I started jogging ~15 minutes every other day and doing heel lifts. This was huge!!!
March 2020 – the COVID19 pandemic (as awful as this is) means I can exercise much more frequently and am able to walk around my “office” (home) as often as I want. This has been a big deal for my recovery. I jog every other day now. For 30 minutes. It hurts. Every time. It might even be dangerous, but since no one knows, I’m doing it anyway. So far nothing bad has happened other than extra painful nights on the days I go jogging.
It’s not exactly what I’d call “full recovery.” But I CAN RUN. I can dance. I can perform activities of daily living and live alone. I don’t even take my gabapentin anymore unless it hurts a LOT.
I know how to live with this new body now and how to make it work and when to “listen to the pain” and when to push through because the pain will always be there. I have stuck with the Wahl’s protocol for the most part, except on occasion I have a beer or cocktail – because you gotta have a drink sometimes 😉 . I have a chronic illness though, and I truly believe the physicians have absolutely no idea that this is permanent and not just “runner’s tendonitis.”
I hope this gives hope to you new floxies. I truly have no idea how predict which people will improve and to what extent. You just have to keep going.
**a note about the groups online – there is some good information there and god bless the compassion. I believe in the goodness of people. BUT. There is a lot of toxic positivity out there. You are still you. You do not need the groups. You can heal without them. They do not control your journey, nor does everybody have good advice. Don’t let anyone make this harder for you – including other floxies.
The story above is truthful, accurate and told to the best of the ability of the writer. It is not intended as medical advice. No person who submits his or her story, nor the people associated with Floxie Hope, diagnoses or treats any illness. The story above should not be substituted for professionally provided medical advice. Please consult your doctor before trying anything that has been mentioned in this story, or in any other story on this site. Please also note that people have varying responses to the treatments mentioned in each story. What helps one person may not help, and may even hurt, another person. It is important that you understand that supplements, IVs, essential oils, and all other treatments, affect people differently depending on the millions of variables that make each of us unique. Please use appropriate caution and prudence, and get professional medical advice.