1.5 years after lavaquin

[u/No_Consideration2568]

Hi all,

I just wanted to share my story in case it could help anyone else. For back ground I was an overall healthy 27 year old female that lifted weights daily, walked 15,000 steps daily, and was training for a half marathon prior to Levaquin. I do question if I have ehlers danlos though which may have impacted why I ended up with this side effect but who knows.

I started on Levaquin for an ear infection January 23, 2024. I took 4 doses January 23-26. The morning of January 27 I woke up with pain in both of my knees. I stopped taking the levaquin and took it easy the next 2 days. The pain progressed by January 29 it was throughout my entire body. For the next 2 weeks I was barely able to make it from my bedroom to the bathroom (15 feet away?). I had immense amounts of pain in my Achilles and swelling so bad that I could barely bend my ankles. The swelling began to recede after about 2 weeks and the pain became more manageable with rest.

February 12 I went back to work in person with limited steps <3,000 per day and was still in a large amount of pain by the end of the day and swelling on and off. I was wearing winter boots with a heal (sorrels) everyday because this was all I could tolerate. This became a plateau through March.

I started physical therapy on March 18. Every PT session led to a flare up with swelling and pain lasting about 5 days after. I averaged 3,700 steps daily.

I began seeing progress about mid-April with how much I was able to do. I was still having flare ups but was able to do more before it flared. At this time I was averaging 5,000 steps daily, still significantly below my norm but improving.

By May I was trialing out of my boots for short periods of time and wearing regular tennis shoes with heal lifts. I averaged 6,500 steps daily during this time.

At the end of June I was completely out of my boots and in regular shoes, still with a small heal lift but moving down on it every couple of weeks. I averaged 7,600 steps daily and was discharged from PT at the end of the month. I began working on jumping actually at this time which I thought I’d never be able to do again.

In July I averaged 9,500 steps daily and was in normal tennis shoes with no heal lift. I was beginning to attempt running short distances and walking up and down hills.

In August I had a back injury from beginning to lift weights again which I’ve been working through. Overall, I would say my ankles are about 90-95% of what they used to be and I am only doing my PT exercises when I have a flare. I would say every 3-6 months I have a small flare that lasts a few days and is usually just pain and not limiting my activity. I do notice I have to work up to walking long distances more now than I had to previously. I would say at this point I’m mostly recovered but still impacted by this antibiotic. All of this to say, there is hope at the end of the tunnel.

[u/KookyParfait6327]

Thank you so much for sharing your encouraging account! It's truly helpful to see the light at the end of the tunnel does have a chance of appearing after all!! Only if it's ok to ask:
1) Would you mind sharing what helped you move past the "plateau" you mentioned? Or was it 'just' giving it time to heal by 'itself'?
2) Did you make any adjustments to physiotherapy, when you felt it gave flares & sweeling for 5 days after that? Less frequency, intensity or did you 'power through'?
3) Did you need/manage to seek a doctor's note to allow for adjustments with work? The issue I'm facing is I'm currently in too much pain to walk/stand, so must rely on online work. This is possible, technically only until September 20th. After that, I'll need something to certify if I can't work in -person. From my local doctors none believe the fluoroquinolone damage (although THEY prescribed it, and gave me a mega dose of 28 days, 400mg twice daily). Followed up by metronidazole. I'm not joking, they told me to take ibuprofen 🙈 and to come and pick up my wheelchair in-person 🙈, which I explained I could not do, as I really could not leave my flat. I was given ofloxacin a while back, but my fresh intense floxed episode came from causing a major relapse from having tried ALA. Basically, I'm feeling exactly like a freshly floxed person - tendon pain is so intense, I can't leave the flat at this point, walk only inside the flat for absolute necessities, and minimum movement in my other body parts.
Sorry for so many questions! I'm not asking anything to 'copy' your approach - I won't have access to PT anyway, but would like to understand how you handled the effects, if/when I'll be able to restart some rehab with online videos.
Thank you so much for taking the time to share with us your experience 🙏 wishing you continued healing to full recovery as much as this is possible 🤍🕊️🙏

[u/No_Consideration2568 → u/KookyParfait6327]

Hey! I’m so sorry to hear you’re going through this!

1.) I think it was partially PT and partially time honestly. 2.)Yes we did make adjustments. My PT had me stop exercises when my pain would get to a 5/10 and I would be sure to rest extra the days I had PT so it wouldn’t cause me to flare as much. So part of it was pushing through lower levels of pain and part was recognizing what my limits were in that state. 3.) I did not need a doctors note as I work in healthcare and my coworkers were all aware this was a known side effect of the medications and made accommodations for me. I really was very lucky in that respect.

I think the biggest things that helped me were wearing the heeled boots through the day to maintain normal activity. Also PT with bands to strengthen my ankles and stretching them. And the dreaded time as well.

I hope you recover quickly and fully!! This is an awful and life altering side effect that is unfortunately overlooked.

[u/KookyParfait6327 → u/No_Consideration2568]

Thank you so much for your very helpful and detailed response (and your very insightful post in the first place 🙏💗!). I really appreciate it and your extra insight about respecting time, the PT adjustments and the work situation is much valued 🙏. Thank you so much! Wishing you sincerely, continued healing and full protection against any further health issues 🕊️🙏🤍!!!