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.
I guess I got a bit behind on updating this.
Things got better within a couple days of the last update- I needed the boot for two days.
It was REALLY good for a day, then went crappy again.
The ankle still feels pretty weak, but for the last few days, most of the problem has been swelling in the front of the foot.
There’s no pain in the toes, and I have full range of motion for curling them, and maybe 70% for flexing them back.
Even when as flex far back as I can, it doesn’t feel like a problem with the toes, it feels like something going on in the ball of my foot (under side) is preventing me from flexing them further.
The current issues don’t really feel like a tendon flare, though. I think it may be some combination of overuse (I did a few days of sewing, a lot o walking, etc when I “got my freedom back”), and weakness in the heel/arch.
Most of the pain yesterday was across the top of the foot, the “smashed with a hammer” kind,w hich I know can be arch related.
We found a local haggis supplier yesterday, I had haggis and some steak and kidney pie.
I’ve been feeling sick lately, some roasted chicken skin perked me up, so we assumed it’s a meat issue again.
Weirdly, the haggis did not perk me up this time, it gave me “sushi coma” and I almost napped on the couch.
A cat screaming prevented me from actually falling asleep.
I slept 8 hours, only waking up at 5am for a bit because a cat was playing with a plastic bag.
So... I’m a week behind. Whoops.
Today is Saturday.
About a week ago, I decided to try a small 2oz serving of haggis every day, to see how that helps.
Also trying to boost protein consumption in general, both from meat and supplements.
ALSO: Trying to be more on the ball with my BCAAs.
I think it’s going pretty well.
On Thursday I had a bit of a setback - my right ankle was mangled, wouldn’t sit right (it was twisting grotesquely - the bottom of my foot twisting towards my other foot - but Friday I was walking better than I have in a long time.
Thursday I needed a boot just to get to the vaccine appointment, and could barely walk even with it on.
The foot did NOT want to orient the right way.
I’ve been exhausted the past few days - Thursday was the day we had our first round of vaccine - and I’ve been surprised that the two times I felt the need to nap - Thursday and today - I passed right out, mid afternoon.
I don’t think I’ve been able to get even a single nap to work since this happened, cancer surgery aside.
Today I’ve been walking pretty good, but that second toe on my right foot is feeling pretty flared up.
Also, that reminds me: The day of the shot, my LEFT toes started acting like they were going into a flare.
The pain is gone - it only lasted the day - but I still can’t flex the smaller toes back very far.
The big toe has full range of motion, though, it’s very weird.
Today is probably more likely to be day one of the cycle, yesterday was very light. So, day 27?
One frustrating thing about the cipro bullshit is not knowing what I can, should, and shouldn't do.... Especially with the moving target.
The tendons that flare up change often, so there's a lot of guesswork and trial to see what I can do that won't fuck something else up.
A couple weeks ago, I bought a used "bun and thigh rocker", thinking it would help for the times where I can't use the Gazelle (like the last few months)... Then I promptly hit another flare in my ankle, and couldn't do shit.
So now that part has cleared up, and I'm currently crippled by the front of the foot again. So I decided to try it - things went well!
If I situate my feet so the fronts are hanging off the top edge of the platform - and I'm pushing off just from the heels - it actually goes really well!
I haven't done anything remotely weight/strength since this happened last March, so I was expecting the worst. 14.5 months on the couch doesn't do good things for the muscles, right?
I didn't really feel any resistance, my legs weren't at all shaky, no pain, no weird noises from the Achilles, nothing.
I only did it for a few minutes, because that's how any new thing had to go - small amount, then wait and see if there's any weird fallout - but I'm really thinking there won't be any.
I'll probably work up the resistance slowly just to be safe, but *without* resistance, it's the first cardio option I've figured out for when I can't put any weight on the front of my foot.
Today my ankle was terrible, from very early on.
Mid morning, I stepped on my right foot - as I was coming up the front steps - well, not really weird, but it didn’t like it. I’m sure all the neighbours heard me scream - it felt like someone took an axe to the top of my right foot. Terrible.
I decided to start wearing the brace, and that seemed to help me walk better through the day.
The 2nd toe on the right foot is terrible, and I still feel swollen under the ball of the foot, even when not applying weight.
I slept 8 hours last night! From 10 to about 3, was up maybe 30 minutes or so, then passed out and slept HARD til after 7!
Felt hungover when I woke up - I’m guessing it was dehydration, as I haven’t been drinking alcohol at all. I haven’t done well on water consumption the past 2 days though.
I slept with the brace on overnight, and the foot felt pretty good before I got out of bed -deceptively so.
The swelling has definitely gone down for the ball of the foot, though that second (and maybe third?) toe has been really miserable today.
I can definitely feel the swelling/pain in the bottom of the foot when I try to flex my toes back, it’s just not as miserable when resting now.
The tendons on the top of my 2-4th toes on the left foot are unhappy, though nowhere near as painful. Kind of a hot (but not temperature wise, if that makes sense?) feeling across the top, today.
I really thought that foot was completely healed, so this is very upsetting.
I can curl them all the way with only a little bit of discomfort, but I can’t flex them back much at all. No problem in the big toe, it has full range of motion.
I’m really wondering if this is somehow a result of the vaccine.
About half of the people in the flox group had some degree of flare after their shot, I’m just surprised to see a problem in the left foot after so long. Not even the gluosamine set that one off, so...?
Anyway, my period has been miserable today and yesterday, so I’m curious to see how this goes.
In past periods, my flare seemed to track the path of how bad my period is.
Where it showed up pretty much on time, I’m hoping I’m not going to have one of the weird ones that a lot of friends experienced after their shots.
I’ll sleep with the brace on tonight, too. I had it on all day, up until supper.
Then I took it off and iced my foot for a while.
The brace definitely seems to help the ankle pain - it doesn’t feel as “broken ankle” today.
The ankle is definitely doing a lot better with the brace on, the left toes are feeling better also.
Still can’t flex them all the way, but they’re moving better and the weird sensation isn’t there today.
The 2-¾ toes on the right side are still bad, especially that second one, which is obviously swollen.
At noonish, the underside of my foot - kind of between the arch and the ball - started lightly and quickly spasming.
It’s been doing it for about 10 minutes - kind of like a heartbeat, but not as consistent.
It’ll be bursts of 2-5 spasms, then a second pause, then more bursts.
It’s not painful, just annoying.
Porter was able to feel it when I had him touch the bottom of my foot.
(Just pasting my FB update out of laziness)
At the orthopedic surgeon appointment.
This one has apparently dealt with Cipro bullshit.
Fingers crossed that we'll get some answers and progress WITHOUT GASLIGHTING.
Started off POORLY (half hour late, then it turned out he HASN'T dealt with it before - and had no idea why the other Dr said he had - and then he said something about how it's not the cipro, I have something systemic...), But then got way better.
He listened to me, said he didn't know anything about it, but that he believes me and is going to research it, make some calls, etc.
He thinks I'm handling it right (keeping track of what flares it up, resting it, only doing therapy when not in a flare, etc... And basically planning to wait it out), agrees that part of the issue now is the weakness.
So he prescribed physio there, he talked to the physiotherapist, he can keep tabs on it, etc.
Also: he's telling the physio to take it very easy, very careful, no pushing through flares, etc.
For someone who doesn't know about it, he's treating it the way those who have seen it have recommended, the way that people have a hard time getting doctors and physiotherapists to listen to.
So they booked me in for the one hour initial consult. I braced myself, because physio isn't covered here... And their facility is *nice*.
... $90 for the first, $70 for normal sessions. That's full retail price. LMFAO.
Oh, I do not miss the USA.
So I saw the physiotherapist yesterday afternoon, same day appointment.
OMG I LIKE HIM!
He listened, he was engaged with all the info, he's going to do some reading, and he *believed me*.
Sounds like I've basically been in the right path, but he thinks he can help me get better - and he seems excited to do so!
His testing showed that my right foot is *demonstrably* fucked up (he had actual clinical terms for what was going on, LOL), but it's something he can work with.
In other news, this flare has definitely been following the course of this period. It was at its worst at the height of it, and tapered off as the period did.
For yesterday’s appointments, there was some swelling feeling under the ball of the foot, the top was slightly swollen, and the second toe was the biggest problem.
Had my second physio appointment this morning. The foot and toe were still a bit swollen, but not as bad as the last session, 2 days ago.
He rubbed the top of my foot a bit, heat treated it, had me pick up marbles with my toes, and put me on a FABULOUS machine that basically gave my foot a circulated ice water massage.
He said it was moving better than a couple days before.
I didn’t notice any problems later in the day.
I had thought there was a chance that the marble exercise might have pissed it off, even though I had a pretty easy time with it.
Woke up with my foot feeling better than it did the morning before, so that’s good.
Today we did Porter’s grad photos throughout the day. I was on my feet most of the day - just in shoes, no brace or boot.
We started off at the lake for sunrise. I had a bit of trouble walking and standing on the sand.
Then we went out to the Dundas Conservation Area, where I had to walk over .2 km to get to the location (uneven path), walk up a long, STEEP hill to get to the spot we wanted to do photos, walk on rocks for the length of a short train, then back down that steep hill, and back the .2 km (and it felt a lot longer than .2) back to the car.
I thought my foot was just going to completely give out, and the left ankle was NOT happy either. But.. I managed.
Then we went to a park, and I had to walk across patch of.. Playground material? Rough, but I managed.
Finally, we went back to the beach (another area), where I had to walk across uneven ground, then down an embankment, and across a fair amount of sand to get where we were going.
I iced my foot between each spot, and I was shocked at how well it bounced back.
None of them - even in combination - just took me out or anything!
That is the longest I’ve spent on my feet in many months (maybe even since being cipro poisoned?), and it was mostly in MUCH tougher situations than I’ve been in.
I’ve tried to keep all my walking on flat paths, etc.
So, that was really promising!!
Hope I don’t pay for it tomorrow. Yikes.
Woke up with my foot feeling better than it did when I woke up yesterday! Am walking a bit better, too.
My calves - especially the right one - are OBSCENELY tight, but that’s about it. I really thought there’d be more fallout from yesterday.
One thing I didn’t mention - overnight was the 3rd night in a row of waking up really early (each time between 3-4 am) and not being able to get back to sleep. Not super happy about it, but not sure what’s up with it.
Both ankles were really locked up both yesterday and today, and my shins HURT most of the afternoon today.
Still not getting any sleep after 3 am, either... though I don’t seem to be in a tendon flare?
Things were a bit better today for physio.
Overall, I’m “walking” a lot better. Faster, anyway - still sort of shuffling/dragging the right foot / limping, but it’s not as bad.
I did a bit of the wobble board again today at physio. Front/back is terrible, but side to side is ok.
Was on the bosu ball today, which didn’t go well.
In my flip flops, I can’t really grip the ball. Shoes off HURTS the top of my right foot - it’s an arch support issue.
The physiotherapist is happy with how things are coming along.
He says he was expecting we’d still be doing scrunching towels and marbles, didn’t expect we’d be doing weight bearing exercise yet.
Today he did “cupping” on my legs.
Said I could grab the toilet plunger from home and - I quote - “have some fun with myself”, LOL.
Poor guy seemed embarrassed when I laughed and repeated it back to him.
Still not sleeping through the night, but still also not in a tendon flare.
So weird! I think this might be the first time that’s happened?
I’m trying to be better about remembering to take the magnesium, I’ve been slacking on it lately.
I really hope I’m not going to be tethered to a supplement regime, long term.
In other news, I did 7:30 of gazelle today, in the wedge heels.
My quads were unhappy - and the reason I cut it short - but everything else seemed fine.
The physio said I could try 5-10 mins, so ... good enough.
He also said that if things stay where they are, I can try skating this weekend.
That’s going to depend heavily on if I can even put my skates on - wearing runners on Thursday morning didn’t go so well for me, and they’ve got more room than my skates do.
My right big toe is threatening a flare. I wasn’t sure if it was gout or tendon at first, but as the day went on, it’s obviously tendon.
It’s not HUGELY flared, it just feels unhappen when I bend or flex it.
I can press really hard on it without issue, though, which I think is the best “gout or tendon?” indicator I have.
Was walking pretty decently today.
The right big toe is still mildly acting up, but hasn’t gotten any worse since yesterday.
I slept a little better last night - kept waking up, but I think I managed to get back to sleep? Ended up giving up at 5am.
Tried to go roller skating today.
Was really excited, because things seemed good... only it went terribly.
I couldn’t support all my weight on the right foot by itself, so I only did one lap, on the left the whole time, kind of “skateboarding” by pushing with the right.
It was bad.
Then I went home, got mad, and tried to go up on my toes. It took a few attempts, but then I could do them. I did about 30 in the afternoon, 11 in one go, at one point.
The big toe on the right foot is still sore, and almost looks bruised... but it’s not causing any mobility issues.
My shins and calves are super tight today, probably from all the calf raises yesterday.
Right toe still sore and discoloured (kind of on top of the big joint), but I can push on it hard without any issue, so I’m not worried.
Did a few single calf raises today to see if I still could, but mostly took it easy. I want to be able to do them for physio tomorrow!
Physio went really well.
Was still able to do calf raises, did MUCH better on the balance board and bosu ball this time, though my right arch was really hurting on the Bosu ball.
He re-tested my knee-to-wall thing, and I went from 4.5 cm to 8 cm, he seemed really happy with that.
The left foot had measured at 11 as a “normal” for me, so I’m getting closer.
I switched back to the U pillow last night, slept really well. About 8 hours, woke up feeling drugged.
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.