It's my hope that publishing my notes from my time recovering from Cipro Toxicity may help others who have been floxed, or medical professionals learning about it.
These are my experiences, which I wrote - offline - as they happened. Everyone's experiences are different though.
10/22/2020
Well, it’s been about 3 weeks since this flare started... and more than two since I updated. Yikes.
This morning is the first time that I’ve been able to walk even somewhat normally since this flare started.
I’m not limping, but it feels like if I step on it the wrong way, I’ll be right back to square one.
It’s a very tentative feeling “better”.
I did step down on it bad about 2 hours before writing this, stepping down from the front door.
It was shooting pain, I had to limp to the car, but the pain went away pretty quickly and hasn’t returned.
Today is Thursday, Sunday we went to Niagara Falls.
For the first stop, I used the knee scooter, which was incredibly difficult - it’s really hard on my “good” hip.
So when we went to Dufferin islands, I put the boot on and walked around for a good while.
It hurt, but not horribly so. My foot did NOT swell when I took it out of the boot.
I was worried I’d be worse off the next day, but there wasn’t much fallout from it. I couldn’t really WALK, but I could still get by with a limp.
It’s been about a week since I started being able to walk at all (hobble with a really bad limp).
Sometimes during that week, I couldn’t, and would need the knee scooter... but it definitely feels like it’s slowly improving.
Things to note:
During the beginning week or week and a half of this flare, wearing the boot - not even necessarily walking on it - would make the flare SO much worse. Just having it on seemed to cause even more swelling. That’s gone away.
A few times in the past week, I’d stand to make dinner - it would mostly go ok, as long as I wasn’t trying to move / turn on it too often.
Each time, I REALLY needed to get off my foot, and it would definitely regress a bit,
The achilles really didn’t seem too affected by the flare, weirdly enough.
It’s still popping, and there were a couple times where it was spasming, but nothing unbearable.
The pain/problem has mostly been in the inside front of my foot, about halfway between the ankle bone and the center front of my foot.(right at the crease/bend of my ankle)
There’s been pain and dysfunction on the outside of my foot - around the ankle bone and down the side of my foot- but that’s definitely been secondary to the main problem.
Sleep has been fine. I took a cyclobenzaprine last night and slept 9 hours!
10/23/2020
Today wasn’t so bad on the pain, which is an improvement.
The problem definitely seems to be morphing.
The past few days, the thing that’s caused the MOST pain has been just stretching.
Not in a gym sense, but in a “yawn and stretch” sense.
I guess however I flex my feet/toes when stretching is a problem?
It makes it feel like all of the bones across the top of my foot are breaking. Obviously they’re *not*, but the sensation is definitely disconcerting.
Most of the pain/discomfort is now around the outside of my ankle bone.
Still having a really difficult time flexing my foot, but it only hurts when I try - the foot isn’t hurting much when at rest.
The whole foot / ankle is completely stiff and locked up, though
10/26/2020
The past few days have been pretty crappy for pain / leg being locked up.
Today I used the Mustard Salt Scrub on my bad leg, and I felt better afterwards.
10/27/2020
I tried the Peppermint Eucalyptus Salt Scrub on it today.
It felt good while doing it and for a little afterwards, but didn’t have a lasting effect.
Probably just coincidence with the Mustard Salt Scrub, but I’ll try again at some point.
It was a pretty good day for walking, up til early afternoon. I even managed grocery shopping - in a boot, no cane!
The foot REALLY hurts when I step down on it while going down from the front door, though.
I’m so fed up with everything.
Tonight I started looking into a supplement regimen, and Porter will be doing some reading on red light therapy.
This CANNOT be the rest of my life.
10/28/2020
The foot was doing really well when I woke up, so I drove to the grocery store by myself - first time driving in a month.
It.. Was premature.
I did it, but it hurt afterwards. Wore the boot in the store.
Did a bunch of cooking this morning with the boot on.
It feels like it’s going to be completely fucked up when I take it off, but I need to get some stuff done so things will be easier if I’m laid up another few days.
11/9/2020
I haven’t done the best on keeping up on updating this, I hope that doesn’t come back to bite me in the ass when I have my next flare. (If I have one, anyway... hoping this was the last!)
The past few days, I’m been walking almost normally.
There’s a fair amount of pain and stiffness in both feet now - the “hammer across the top of the foot” feeling, stiffness in the ankles - but nothing like it had been.
I haven’t been using a cane or boot to get around, even in the grocery store.
I’m hoping to start using the gazelle soon. I miss working out, I’m so sick of being stuck on the couch.
Porter built a NIR light for me a week or so ago, and that seems to have made a huge difference.
We’re both super skeptical, but I definitely seem to do better the day after using it.
It’s been about 6 weeks since this flare started, and I still have no idea what caused it, or why it’s lasting so much longer than the last one.
It’s incredibly frustrating.
10/8/2020
Imaging came back for the right foot:
Achilles - partial thickness tear and tendinopathy insertion point at heel
4th toe - the tendon that controls ability to bend toes up - thickened. Tenosynovitis - inflammation of tendon sheath.
1.5 cm tear.
Sounds like this happened back in September when I stepped up on the massage table.
UGH.
What next??
My Floxed Timeline
For the first year and a half or so, I kept a regular diary of symptoms and improvements. Here are the links to those posts:
The First 24 Hours
The First Month
The Second Month
Month 3
Month 5 Check-in
Month 7
Month 9
Month 10
Month 11
Month 12
Month 13
Month 14
Month 15
Month 16
Month 17
Months 18-20
Months 28-32
Months 33-38
...After the 20th month, things started to turn a corner. I stopped writing in my Cipro diary, and started blogging about my recovery - and I DO seem to be in actual recovery, now. (After month 28, I started compiling Facebook posts into timeline updates, here.)
You can see more recent updates under my Cipro category, and under my Walking, Hiking, & Scenery category.
A lot of my "therapy" after the 20th month has been just walking and hiking, and I've been making HUGE progress!
I've also written a post on what helped me heal from fluoroquinolone toxicity, in the hopes that it'll help others.
Also, you can see how I'm doing in general by seeing the All Blog Posts category.
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