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.
That wild uptick in mobility got weird, and I had to dial it back a bit.
I was walking 5+ km a day, and the hikes were getting pretty intense. I started putting on a ton of weight for no reason, and "inflammation" seems to be the reason.
Also I ended up with a badly ingrown/infected toe, need surgery on that on Tuesday.
So a couple weeks ago I decided to stop the walking. Now I have full days of mobility at home, rather than a morning of mobility on a walk, then fucked up for the test of the day.
After the surgery heals, in going to go back to weights and/or lower impact cardio to see if that stops the inflammation from running wild.
So, I've spent the last 13 days focusing in another direction - getting my flexibility back.
I'd been stretching like a normal person for MONTHS and not getting anywhere. It really seemed like Cipro fucked up my ability to limber up?
Anyway, a couple weeks ago I decided to start stretching hardcore - a few times a day and/or looooong sessios, long hold, and just .. stretching like a figure skater again.
It's still taken longer than it did pre-cipro, but I am finally seeing some progress.
Was able to do the splits the first time I tried it again, albeit for 1-2 seconds, only one direction, and holding myself up.
Within days, that was 9+ seconds and laying down on the front leg.
Just now, I stood with my feet 1.25 meters apart, bent over all the way and rested the top of my head on the ground. So, you now, stupid party tricks are coming back? Lol.
Anyway, figured I'd write up a quick check in while holding a stretch, lol.
The muscles aren't as limber as they used to be, but it's actually starting to feel like it'll all come back eventually.
I think I need someone to talk me down about the surgery tomorrow, really starting to freak out about possibly starting another major Cipro flare.
The past couple days - and especially today - have all been about "in case I lose my mobility tomorrow".
Tomorrow I'm having minor surgery on the toe that was MOST fucked by cipro.
I'm terrified that the numbing shots into the toe will trigger another really bad flare.
After a couple months of mobility, I'm freaked out at the possibility of having to repeat like... The two months of hell after I took a glucosamine pill a year or so ago.
I’m trying to distract myself from the anxiety and SHEER TERROR I'm going through over the partial nail avulsion this afternoon.
I've had this procedure done before, it was a total non-issue.
If it wasn't for the random drugs, supplements, and injuries (like spraining a toe) causing MASSIVE, crippling flares, this would be no more stressful than going for a haircut.
One hour till the procedure, just stuck a lidocaine patch on my toe, as directed.
Made the mistake of checking the flox group and learning that lidocaine has caused flares in a bunch of people at dentist appointments.
So now that I'm out of the woods for the potential flare from toe surgery, I have to start a prescription today.
... One that has only been mentioned in the flox group ONCE.
Google turns up nothing about it + Cipro.
Love having to do something with absolutely no data about the risk for flares. Fuck.
Tots and pears for my feet!
I CANNOT catch a fucking break with my feet.
Feb 2020: mild stress fracture or neuroma (never got a solid DX, doctors were disagreeing with each other), left foot.
March 2020: Cipro, all the tendons in both feet pretty much destroyed over the following two years, including an Achilles tear.
??? 2021: Right big toenail just pops off after a bad tendon flare. Grows in weird.
Spring 2022: Finally get use of my feet back to being able to mostly function ... Immediately get a badly ingrown right big toenail.
2 weeks ago: Partial nail avulsion to fix that. Miraculously doesn't trigger a tendon flare. Actually starts healing pretty well.
Today: the band aid and sock I have to wear when I have full shoes on (to protect the surgery site) work together to give the second toe on my right foot* the MOTHER OF ALL blisters, inside/under it.
*The one WORST affected by cipro, through all the flares, the one that only JUST started being able to bend again, and only JUST started relaxing down like it should, instead of standing up like it's giving me the finger. (Giving me the toe).
Seriously, what the absolute fuck.
Ater that binge of long walks a couple months ago, my calf raises/toe walking never really came back.
NO FUCKING CLUE how walking killed my strength?
Now I've got to re-learn/re train it all.
Yesterday I could finally walk on my toes a little bit - just a few steps, and it was awkward.
A far cry from that one physio session a couple months ago where I was walking back and forth across the gym multiple times, with no problem.
I did try to do calf raises on the stairs just now, was surprised I could actually do it. (First time I've tried full range since cipro)
15, full range.
Tots and pears for my bullshit feet!
Sorry for the depressing post. I really thought I was on the way out, when I could do all those 5km walks.
On the upside, aside from the odd ache or spasm, my feet have been pretty functional.
I don't know that I'd be up for plyometrics or anything, but I can cook for hours on end, do chores, etc. If I need something on a high shelf, I can generally go up on my toes to get it.
One big thing that I'm trying not to take for granted is just not worrying about accessibility.
Up until very recently, if we were going anywhere we weren't familiar with, it would be a whole production around finding close parking, having my husband go suss out the stairs/elevation/etc situation.
If there were stairs, too long of a walk, really uneven ground or whatever, I'd generally have to nope out.
These days, I just walk wherever I need to, and don't really need to think about it. I can even CARRY SHIT as I walk - even on uneven terrain.
So that's pretty cool, I think. Small victories?
Today I learned that not only can I do a plank - FLAT, and up on my toes (not my knees), I can also do several rounds of the mountain climber (?) shit while doing that plank.
I never thought I'd see the day where my toes would be able to support me like that again.
I am NOT a small woman, either... So I guess I'm getting stronger!
There is nothing like reading "There is Cipro in the monkeypox vaccine" to bring my work day to a quick, very distressed halt.
So I haven't mentioned it here because I wanted to see how things went, but I've been weight training for the past few weeks.
Started things out and was shocked and disturbed at how weak I was. Literally struggling with 5 lb weights.
I've been pushing to failure, aiming for 3 sets/10 reps for everything, 4x week (chest/back/legs and arms/shoulders/abs, 2 each every week).
I'm up to 20 lb dumbbells now, no problem.
(Context: you know the "guys skip leg day" thing? I'm basically the complete opposite of that, and always have been. Never ever worked upper body, always legs - since I was a kid... So this is new)
I did 100 crunches the other day, something I've literally never even attempted in my life before.
Today, I did my first time ever of actually doing all 10 reps on each of the three BENCH PRESS sets (WHAAAAAT?)!!!
The first few workouts had some soreness for a day or two, no flares.
Since then, I've been adding weight each set, day over day, pushing to failure, no fallout at all.
Like I said, it's been a few weeks now, so figured I'm solid enough to check in with the good news.
Also: I added deadlifts today. My hamstrings hate me already, but I walked down the stairs right after, so I think it's fine.
All around, good news!
Hey all. It's been a minute since I posted an update, so figure I should.
Things are still going well. Had a bit of a concern over possibly having another (very small) tear on the Achilles, but looks like it's nothing. It wasn't really bad enough to worry about, didn't impact me much, beyond spooking me a bit.
So. Dumb update time.
Didn't feel like working this morning, so the husband and I fucked off to a corn maze for a bit.
I suggested going for this walk, on what I knew damn well would be uneven terrain.
I didn't bother obsessively Googling for every bit of information I could find about the venue. Before getting better, even like... The parking situation... Was a huge deal.
It's the biggest corn maze in Canada, and even THAT didn't make me Google for info on how big/how long of a walk/blah blah.
I'm sure non floxies wouldn't see this as a big deal, but like... Just getting confident that it's a ~walk~ and not feeling like I needed to plan... Feels like a big deal to me now.
As it turns out, I probably should have looked up that info, as it's WAY bigger than I've ever heard of a corn maze being, and there was a whole scavenger hunt thing involved.
Fine for me, still... But hubby had a meeting this afternoon that we had to be back for.
Yup, the paths were super uneven, my arches ache now, etc.
I have no idea how much walking we actually did, Pokemon Go registered 3 km though. (A lot of short turns and stuff just get counted as a diagonal across whatever space you cover in a certain amount of time, though).
I lived, it's all good.
Today's fun realization:
Grand total cost of pancreatic cancer for me - including imaging, a massive surgery and the recovery: $38.
The cost of taking 4 Cipro pills?
Thousands of dollars in actual expenses, 2 years + of lost wages, and my mobility for 2 years.
Cool cool cool.
Currently on high alert for tendon flares.
One of the worst / most ridiculous things about what Cipro does to some people, is make the most benign medications, supplements, and foods a LANDMINE of
... And they're all over the place.
Even the most common triggers don't affect everyone with this issue, so you'll have some people take something and be fine, and it'll absolutely cripple others.
Half the time, it feels totally nonsensical.
NSAIDs and steroids are the most common and worst triggers. You know, exactly the kind of things you're supposed to take for tendon pain!
I took glucosamine specifically because it's supposed to help TENDONS.
... And that's what blew my foot up like a balloon and caused my last podiatrist to just nope the fuck out on the first look.
I took glucosamine before Cipro without any issues at all, can you fucking imagine? Ugh.
Anyway, today it's iron.
I'm low on both that and b Vitamins, both of which are common triggers to people who got floxed.
Some people heal entirely and never have a problem with anything again, many "heal" but will get set back years later when they take a triggering substance.
I ... Don't know what category I'm in.
For all I know, I could down a few Ibuprofen and be fine. Maybe I'm far enough out that the systemic shit is actually done?
But for all I know, my first two doses of iron (yesterday and today) are setting me up to lose my mobility again.
I hate that taking something that's supposed to help me... Feels like playing Russian roulette.
The further I get from my last bout of being crippled, the more invested I am in not losing this mobility again.
It sucks that I can't just take iron and a b complex and be done.
No, I have to pick one and take it for a while, then stop that and take the other on its own, and only then - if BOTH go fine - can I start taking them together.
Fuck cipro, and fuck Dr Fawad Khan.
Dumb Physical Victory of the day: It's been over 2.5 years since I've even thought to try, but I can pick my husband up again!
(I watched way too much figure skating yesterday. A lot of my friends are at a competition I was supposed to skate at, I watched the stream. 🙁 )
A year ago, I was still needing help getting into/out of the bathtub (couldn't stand sturdy enough to shower), etc.
I'm probably a few weeks away from the first anniversary of my last HUGE flare - the one that saw my foot swell up like a balloon so bad, my podiatrist took one look and noped the fuck out, told me to go to an ER.
A year ago, I could never have imagined walking anywhere other than to the washroom/bedroom/car.
Definitely couldn't picture going walking recreationally, and certainly couldn't half imagined walking on rough trails and wild stairs like I did here.
I don't want to come off as bragging, I just hope that the wild difference a year made for me, will give someone here some hope.
It was BAD a year ago. I'm still wonky, but way more functional.
It will get better. Trust me!
Woke up at 1:20 am with the outside of my right arch in EXCRUCIATING pain.
It didn't go away, I needed to crawl down the stairs on my ass for the first time in almost a year, crying the whole way.
I thought I was done with this shit.
All I can think is maybe it's another vaccine flare - got the bivalent on Wednesday - but it just doesn't fit the pattern from previous ones?
The flares would start the same or next day, were much more mild, and affected the top of my foot and toes.
This was several days later, and it's on the outside of my foot / outer arch.
Dr Google says peroneal tendonopathy.
WTAF? I didn't DO anything. I haven't had extra stress, haven't taken new supplements in several weeks (and just iron then), wasn't on it a ton yesterday, no injury, etc.
It was my first Moderna shot though? Would that make a difference in the type of flare and how long it took to set in? The first three reactions were very consistent.
I have been sleeping like absolute shit since Wednesday though, so maybe a flare started and just didn't hit the foot right away?
Fuck fuck fuck.
I haven't been in this much pain since like... January? Maybe longer?
I was really starting to think I was done with this bullshit. 🙁
Headed to bed, 9 pm.
The right foot feels almost back to baseline.
Left is a bit locked up, but that's kind of to be expected, given that it took all my weight for most of the time I was cooking today.
Really hoping that was*it*, and I'll wake up fine.
If that's the case, this will be the WEIRDEST cipro bullshit flare I've ever had.
HTF does it go from "about as bad as it's ever been" to "walking with only a barely perceptible limp, not really painful anymore" in the course of 18 hours?
Tendons are bullshit.
Seriously, I feel like my body is gaslighting me.
State of the tendons address:
I recently started Gua Sha muscle scraping again.
My legs have been all kinds of tight and sore lately - the ankle/foot flare recently had me walking weird that day, which the my knees and hips into tantrums afterwards (not flare, just... Physiology I guess?)
Anyway, I wouldn't necessarily recommend scraping a flaring area, but if you're at least on the road to recovery, I 100% recommend trying it.
This little scraper tool was like $20 CAD, IIRC?
As a bonus (that I unfortunately forgot up till the other day)... When I scrape before bed, I pass the fuck out and sleep through the night.
YMMV, of course... But I know what it's like to be ready to try anything. I did, and this one was a big winner for me.
You need to use a little oil for it - I've used magnesium oil, but sweet almond oil or just any body oil works great too.
Hope this helps someone.
Things have been going well. Aside from that freak 18 hours after the booster shot, I've been pretty mobile.
Going roller skating as often as possible, generally more dependent on the weather than anything. Have gone most days this week.
We've been doing treadmill walks every night, 30-60 minutes, watching House of Dragons.
Decided we should take advantage of the weather and do a beach walk instead, tonight.
Definitely loving the fact that I can drop everything and just bang out a 3 km walk on the sand without having to think about it, prepare, or worry about much in the way of fallout anymore.
Yesterday's skate was 42 minutes, last night's walk was 56 minutes. No fallout at all.
My knees have definitely seen better days, I'm going to have to talk to a friend about that. (Hubby lost his job last week, and with it our physio benefits).
I'm not sure if the knees are tendon damage directly from the cipro, just fucked up from 2 years of being crippled/inactive and going pretty full out, out of nowhere, and/or just unhappy from old skating injuries, age, and weight.
Stairs can be a bit rough at times, and I have to A-535 my knees before skating... But I can skate, do long walks, etc. I'm assuming strengthening the tendons will help eventually.
Anyway, that's about it, I think.
We just bought the stuff to build a small backyard ice rink this year.
I can't see any way it'll be safe to do indoor skating this season (Ontario is a Covid shit show), but if I don't get back to spinning soon, I'm going to lose my mind.
The backyard rink should be JUST big enough for flying camels, which will be medicinal.
Anyway, hope my rambling helps someone. I honestly wasn't sure I'd walk again, for a good part of the 2+ years I was fucked up from the cipro.
Definitely enjoying being on the other side of that shit now, and will be happy to see more of you join me on this end at some point. Don't give up!
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 5 Check-in
...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.)
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.