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.
Woke up with the left ankle feeling badly sprained, and the right foot flaring.
Not sure if the “sprain” feeling is an actual flare, or just from taking the brunt of everything.
The right foot was swollen in the front - especially around the second toe - and I’ve lost most of the range of motion in the toes.
The right achilles also feels flared up, and I could barely walk. I’m going to take another couch day and see how it goes.
The frustrating thing is that I don’t know what caused this.
Working at the desk? It WAS feeling crappier after a few hours at the desk.
My supplements? The cyclobenzaprine?
I stopped taking the supplements again, just in case.
I’m going to start icing it again today, but the foot is back to feeling so flared up that the pressure of the ice hurts it.
Things are slowly getting better, I think. VERY slowly.
I had a few days where the toes were painful AND I felt like there was a marble under the ball of my right foot, that feeling eased up yesterday.
For the most part yesterday, it was only the tendon to the big toe that was painful, and it was a tolerable level of pain.
This morning I woke up with the second and third toes swollen and sore again, and the right ankle feeling broken again.
I was hoping to maybe go for a walk today.
Yesterday was pretty miserable.
The top of the right foot felt fine, but underneath the ball of the foot was swollen (inside, not visibly??) and it was painful to put any weight on it at all.
Ice was helping, but I was pretty useless in general.
It definitely feels like the way I was hobbling (toes up, leaning towards the outside of the foot) is going to screw up my foot/ankle/leg, so I’m trying to just stay off it till the swelling goes down.
Still only getting about 4 hours of sleep a night, and my heartrate is really high when I wake up - mid 90s the past few days. UGH.
I have some more magnesium coming in today, I’m hoping that helps the sleep issues.
I know Magnesium doesn’t set off my flares, so that one should be safe to take on its own.
In better news, when I woke up, I could move my toes fairly normally.
I thought maybe the swelling had gone down in the ball of my foot, but when I stood up, I found that to be wrong.
Even after walking downstairs and to the couch, I’m still able to move my toes fairly normally - a bit of stiffness and light pain at both extremes, but it’s far better than yesterday.
Woke up at 2:30, after less than 4 hours sleep.
This SUCKS. Gave up at 5 am.
The night before last, I actually got almost a full night of sleep.
I took magnesium that day (first time in a while), and also tried activity before bed.
We weren’t sure what got me to sleep mostly through the night, so I skipped the magnesium yesterday, and tried activity before bed again. Guess it was the magnesium.
I’m never in the mood when I’m in a flare, so I guess that’s for the best?
The right foot is still very, VERY slowly getting a bit better.
It still feels swollen in the ball of the foot, but I can put a little bit more weight on it than before.
I’m still limping, but it’s less like just straight up dragging a dead foot now.
Can still move my toes pretty well, it’s been a few days of that.
There’s a weird feeling like some of them are physically bound to each other, but it’s annoying rather than actually painful. Sensory shit.
Today's big victory:
First time being able to scrunch my toes up to grip something (blanket, carpet) in... I don't even know how long.
One of the really shitty things about having your feet destroyed by a fucking antibiotic and the looooooong, drawn out recovery bullshit from that, is all of the peripheral bullshit.
A foot gets fucked, so I can't walk for several weeks/months.
So then both feet lose strength.
Then the arches suffer as a result.
The calves get tight, which causes their own bullshit, up AND down.
That much time on the couch? Fucking hip bursitis.
It's just constantly putting out all kinds of OTHER fires that pop up alongside the main one.
So sick of this shit.
The swelling has gone WAY down in my right foot - tonight I was shocked at how “skinny” it looked!
I was walking almost normally today, as long as I’m wearing the arch support sandals.
Toward the end of the evening I was back to hobbling, but I was also barefoot.
SO frustrated with the heart rate/sleep issue.
Woke up this morning with a little bit of swelling feeling in the front of the left foot - hoping that’s nothing, because I’ve been working on the assumption that foot *healed* from the cipro shit.
I was walking a fair amount yesterday, so I’m hoping it was just an overuse thing, after months on the couch.
I do still have a really good range of motion with all toes on both feet, and can “make fists” with them.
Regarding the sleep issue, I decided to start back on CoQ10 today, so I read back to see what earlier entries had said about it. (It’s all good, restarted it today)
The December 1 entry mentions having started a round of supplements 3 weeks before - including glucosamine - AND STARTING A FLARE 3 WEEKS AGO.
I’m taking that as confirmation that it was the glucosamine screwing me up.
Glad I’ve been keeping this diary!
My heart rate was a little better last night, both as I was going to bed, and when I woke up at 2:30 and 5:30. (I woke up a few more times, but didn’t take heart rate).
Unsure if it would be the coq10 yet.
The night before last, we started a new bedtime routine of 1 hour of reading a book in bed, no screens.
Hoping that helps with the sleep issues.
Things have mostly been ok today, I’m still walking almost normally, as long as I have the arch support shoes on.
Then around 5pm, I was getting up from the toilet (so flexed over on my toes), and it felt like something under the ball of my right foot tore.
I doubt it did, it was just a really sharp pain at the time. It felt better pretty quickly.
Unfortunately, that’s the same way it went when I ripped my achilles, so who knows?
I can’t wait to get that MRI.
I had been hoping to go on the Gazelle after using the washroom, but decided that icing is a better idea.
I still have almost full range of motion in the toes (the big one feels stiff), so I’m assuming that it wasn’t anything catastrophic.
I think I’ll go on the Wobble Board instead.
It’s been too long, and I’m sick of flares making me feel like I’m losing all the progress I gain between them.
(Note: I didn’t end up doing the wobble board)
I’m definitely starting to think the coq10 is important.
It’s only been 2 days, but my sleep has been improving by leaps and bounds.
Before starting back on it, my heart rate was mid-high 90s when going to bed, and when waking up.
Yesterday, it was low 90s for both, and last night / when waking up at 4am and 6 am today, it was mid (this morning) to high (last night) 80s.
I think I only woke up at 4am, which is later than usual for waking up during the night (while I’m in or recovering from a flare), and I didn’t seem to be up very long before falling asleep again.
I remember laying awake for a few minutes, trying to fight the sleep enough to check the time and my pulse, and having a hard time.
I woke up at 6, feeling drugged.
I had a hard time getting out of bed, and I feel like I could go back to sleep.
How is it that I wake up FULLY awake after like 3-4 hours sleep, stay awake for the full day without problems... but then when I get 6+ hours of sleep (as a new thing, after a flare), I can’t even function?
In other news, walking up the stairs last night was a fair amount easier, and so was walking down them this morning. 1 foot per step!
The swelling feeling in the left foot is gone. I have a tight ball of muscle in my right calf, but aside from that everything is feeling pretty decent today.
Started my period today, on day 25.
I think I slept a lot better last night again.
I know I woke up at 3 or 3:30, and I was up for a little bit, but then it was 5:30. SO, obviously I fell asleep again.
The heart rate is still coming down, slowly now.
I’m pretty convinced that clearing up the heart rate issue is what’s going to fix the sleep issue, and the coq10 really seems to be helping on that front.
Today I went up the stairs without hauling myself up by - or even using - the hand rail, which is the first time in over a year. I’m still wobbly, but I can do it.
Had a bit of a rough time with my feet today.
I think the left was just tired, but my right ankle was pretty unhappy.
I think it may have also just been tired, etc - I HAVE been walking a lot more lately, now that I can actually do so.
I was on my feet yesterday with cooking, made jelly this morning, and had to walk a TON at the hospital today.
I went for my MRI, as a last minute cancellation thing.
It was originally supposed to be two different appointments - foot and ankle - but they were able to do it all at once.
I was worried we’d have to redo a couple of the images, as my foot started spasming, when I was supposed to keep it completely still.
Bit of good news ..
When the technician called the radiologist about the two appointments and mentioned “antibiotics”, the radiologist apparently said “Cipro? Ok, don’t do (original plan), for that you have to do (achilles protocol?)”.
He’d seen this before and knew exactly what needed to be done.
I’m back to hobbling though, so stayed off my foot the rest of the day.
Yesterday I tried to go on the gazelle, but had to quit at 2 minutes - my right ankle started feeling broken.
So, I did a bit of work on the Wobble Board.
Oof, it did not go well!
Anyway, once I was up, things were good.
I went for my first walk in MONTHS, at Gage park. I only made it about 1, maybe slightly more than 1 km, but things mostly held up.
My achilles was being loud and obnoxious, but I was walking better and faster at the end of the walk, than when I started.
I meant to ice my feet when I got home, figuring there would be hell to pay later... but I forgot.
My feet didn’t even swelll!
At 9pm, things are mostly ok.
I do have a bit of aching in the front of my LEFT foot / toes.
A little concerning due to the history, but not actually painful.
The right foot feels mostly ok, though I’ve mostly stayed off my feet today, since coming home.
In other news, my sleeping still seems to be trending better. I woke up around 2:15 again, but I don’t think I was awake very long. Got out of bed at 6:30ish.
Got the MRI results back - no more achilles tear!!
They did find “a bit of mild, degenerative arthritis” in two of the toes on the right foot, but that was it.
No visual issues with the tendons, despite the fact that I was still coming off a flare when I got the MRI, and was in kind of rough shape that day.
My family doctor said that he didn’t believe the foot issue to be Cipro anymore, so that pissed me off.
Mammogram and chest xray were clear though, so between that and the healed achilles, overall good!
I decided I’d celebrate by going roller skating tomorrow.
The recreational inline figure skates seemed like the best idea, as they have more room and shouldn’t piss off the tendons in the top of my foot.
I got them all set up with wheels and bearings, they were comfortable to wear... but as soon as I stood up, my right ankle was in screaming pain.
It felt broken - I’m guessing it’s just way too weak to skate on yet?
Maybe the proper figure boots would work, but I don’t want to take the chance on them screwing up the tendons on the top of the foot - they’re still cranky.
So... I guess I’ll focus on physio and try again in a week?
I woke up still pissed off about “I don’t believe it’s Cipro still affecting you at this point”, so I wrote a bit letter to my family doctor first thing when I got out of bed this morning, and fired it off.
7 hours of sleep last night, btw!
He called me this afternoon to discuss the email, and he sounded a little hurt by it.
Sounds like he didn’t realize how strong the “I don’t believe it’s the Cipro at this point” would hit me, and didn’t mean it like that.
The right ankle has been bothering me all day, and it was super bad in the evening. I can’t believe how accurately it feels like a broken ankle.
6 hours of sleep last night!
The ankle was so bad this morning, that I went back in the boot, which seems to be helping.
We took the wedge out, now that we don’t have to worry about my achilles.
This is a weird one though... it doesn’t hurt unless I move it or stand on it.
It feels a bit different than when the tendons freak out - I have to wonder if this is just weakness?
Like trying to walk on a foot after it’s been casted for a couple months?
I don’t know, it’s just a different kind of pain than the tendon flares have been, even the ones in the ankle itself.
I’m going to talk to the chiropractor and see if he’ll look at it. Maybe it’s just locked 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.