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.
Went for a walk this morning, at the lakefront - left foot booted.
Had an easier time today, though I can still feel issues in the left ball of foot and across the front of that ankle.
At noon I tried the Wobble Mat for about 5 minutes, could have done more but decided to see how it went.
Within 5 minutes of stopping, it started some weird spasms. Not painful, but pretty strong.
Not sure what’s up with that.
I have almost full range of motion with my toes today, though there’s some weirdness above my big toe on the left foot - it’s not the gout area, it’s higher than that.
Also, my urate levels are the lowest they’ve been in 2 years.
As of 1pm, heart rate has been great today, which is weird because I’ve been really active.
Even with 2 hours of food processing and cooking, it was averaging high 70s / low 80s this morning, I’m feeling more positive about things overall, today.
I’ve gone for walks 4 or 5 times this week, which is a FAR cry from once every few weeks.
Sleep hasn’t been great lately though - 6 hours last night, no more than 7 most nights.
Started work on the Wobble Board.
I’m unable to put all my weight on my left foot at all, but I can do both feet, or just my right foot.
I think this will be a big help for rehabbing my leg tendons - and the muscles, which haven’t been getting much use, as a result of the cipro damages.
The tendon damage seems a LOT better lately, but the neuroma seems to be kicking up.
I’m thankful for the tendons to be calming down, but it sucks to not be able to put any weight on the front of my left foot.
It makes me walk in a weird, twisted up way... and I worry that it’s going to damage things as a result.
Walking that way did put a strain on my knee, ankle, and hip throughout the day, and I was in a fair amount of pain by the evening.
The front of my foot was in pain, the left leg - especially the foot - was twisting grotesquely to the inside - like bowing.
My left hip flexor was also tweaked.
It was terrible.
Considered taking a pain pill, but ultimately decided not to.
Today was bad.
The last couple of days have seen a flare of my original injury (suspected Joplin Neuroma), though my tendons have mostly been ok, aside from those in my right shoulder - until last night.
Last night I was wide awake after only 3 hours of sleep. I may have fallen asleep for another hour or so, but it was a pretty miserable night overall.
Aside from the left foot neuroma issue, things got a fair amount better over the course of the day, though.
I’m assuming it’s the neuroma, though those two toes on the left foot (next to the big toe) were pulled back a little yesterday.
The last few days, my heart rate has gone back to being really high - high 90s, tipping over 100.
I don’t know if this is directly correlated to flare ups (That when a flare happens, the heart rate goes up), or if it’s an indirect result (ie that flare causes pain, pain causes heart rate to rise).
On the upside, the heart rate is a lot more solid.
It’ll stay within 2-3 bpm now, rather than wander up and down by 10+.
Not happy that it’s high, but I’m wondering if the wildly swinging BPM was more concerning. I feel like high but stable is probably healthier than the swinging BPM.
Also, I still don’t seem to be having blood pressure issues at all, just speed.
Thankfully. It sounds like most other floxies get both..
With surgery coming up and COVID being worse for people with hypertension... I’m glad to at least have normal BP!
Have done pretty good progress to report on the cipro poisoning rehab.
The tendon problems in both of my Achilles seen to be a whole lot better.
Walking isn't as scary, I'm thinking I might be out of the woods in terms of worrying about them rupturing. They're not "catching" and making loud, scary noises anymore.
The front of my left foot is still fucked up.
Not sure how much is original injury, and how much is Cipro.
Cipro brought on it's own shit in the area, which seems mostly better (aside from the big toe and arch) but then it also either flared the original injury, or was behaving in a similar way, which is still garbage.
I can't roll off the front of my foot properly, but I'm mostly walking without a limp, the last few days.
I've started using my Wobble Board more often.
I haven't been able to use it on the left foot alone, but I can do it with both feet (right taking the brunt of it), and on the right alone.
Both is easy, right has come along a LOT in a couple days. I went from "Holy shit look I can do it *step out*", to bring able to hold it.
Not only that, I can hold it while moving my free leg in and out, up and down. PROGRESS.
And in possibly bigger news, I used the Aerobic Stepper today for real for the first time. I'd stepped up and down off it a few times, but not as a legit thing, no cardio.
Today, I slapped a set of lifts on it (first time) and did the first 6 minutes of cardio that I've done since early March. Holy shit!!
Still worried about the front of my left foot, but at least I seem to be working out of being *systemically* fucked up.
Have been sleeping pretty well the past week, usually about 6.5-7 hours. Would love to get back to my normal of 8.
At least this is better than the 3-3.5 I was getting in the beginning of this cipro nightmare.
Heart rate is still high, but at least it’s mostly been in the high 80s, the past few days.
Have been walking pretty well the past few days.
UP until yesterday, for the past week most of the tendon issues seemed to have resolved, and I thought I was left with just the neuroma.
Yesterday and today, my right achilles has been back to clicking loudly.
I haven’t been as fastidious about taking my magnesium lately, not sure if that’s what is going on with the achilles. I was hoping that better = no need for supplements.
The calves have been really tight lately, last night both arches hurt. They hurt when I woke up, also - was surprised by that.
Today I was able to support myself on my left foot on the Wobble Board, for the first time!
The shoulder also seems mostly better. There’s a bit of ache and soreness at times, but not really “injury” feeling.
The past week or so has seen huge improvement in my left foot, and overall - aside from the heart rate, which has been mostly in the 90s.
Today was the 5th day in a row where I could put on running shoes and walk around outside.
Before that, my left foot has not been in a running shoe since this happened.
Also, I’ve been running errands on my own, and driving. Driving was really hard on the right achilles before, but seems to be mostly doing OK now.
Yesterday we took a long walk at the botanical gardens.
The first garden went well - it was paved - but the second didn’t have a paved path, and the uneven ground made my foot kick up a fuss.
It swelled pretty bad in my shoe - I had to take it off when we got to the car - but it was fine before we got home, with no real lasting issues.
Even when I do something that would FOR SURE have set me back badly even a few weeks ago, it’s not seeming to be anywhere near as much of a problem now.
A few days ago, I was walking down the front steps and rolled up off the front of my left foot in a way that would have left me unable to bear weight on it the next day... but no problem, after a few hours of touchiness.
Additionally, I’m now able to stand on the wobble board on my left foot, AND press forward on it - that’s new as of 2 days ago.
A few days ago, I had to take a t3 because of a bad period + overdoing it. I couldn’t handle the back pain.
That night, I only got 3.5 hours sleep. I wonder if I can’t handle t3 anymore?
The last time I woke up at 2am and couldn’t get back to sleep, I think it was the last time I took a t3.
In other news, When I was out painting the planter the other day, I could go into a full squat, hold it, and get back up with no hands!
Tomorrow is my pancreatectomy, and I’m scared that the experience may set me back on cipro healing.
After what the ibuprofen did that one time... I don’t know what the surgical meds will do.
Also I have no idea how the systemic nonsense causing my heart rate to be super high will impact things.
Additional note: The “marble” feeling has been gone for a few days now.
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.