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.
Still experiencing the worst flare I’ve had in at least 2-3 months.
Yesterday was slightly better than the couple days before it, which were terrible.
The pain has stayed localized to those 3-4 toes + the big toe joint in the foot, and hasn’t traveled into the foot at all, which I still find very weird.
There’s a lot of pain on the outside of that shin and hip, but that’s been common any time I’m having a hard time walking / walking weird.
I stopped gluten (last I had was the day before yesterday), in case that was contributing to the severity of this flare.
This morning, it’s significantly better.
The 2-3 little toes that had been affected are more of an ache than a pain, and the big one is far less painful than it was.
The second toe is still pulled back - it looks like my foot giving me the finger.
I’m going to take it easy, rest/elevate/ice it more today and hope I’m back to functioning tomorrow.
It may be the worst I’ve seen in months, but if this is ending already, it’s significantly better than previous bad flares.
It looked like I may be heading to needing the knee scooter again, but so far I’ve been able to get around on my own this whole time.
The recent flare is getting better, slowly.
It has stayed localized to the toes, for the most part. There’s some aching and stiffness in the ankle, but not really *painful*
My sleep was definitely affected for the first several days, but that seems to be improving in the past few days... slowly.
Last night I woke up a few times because the pain in the two (??) Toes closest to the right big toe were in horrible pain, though.
Yesterday was the first day of the flare where I could bend my toes somewhat normally, and I was walking a bit better yesterday.
SO far, I’ve only had to take a painkiller for it once, and have mostly just been icing and resting it.
So the flare has stayed to the toes, but has been either the same or slightly worse.
Yesterday was awful, as was waking up this morning. I haven’t been able to put weight on the toes at all, and walking weird as a result is screwing up my shin and knee, so that’s fun.
I’ve been icing it a lot yesterday and this morning (so far), but it seems to just sort of keep the pain manageable, rather than actually reduce the swelling or anything.
I can’t remember if I’ve mentioned it or not, but the second toe of my right foot has been badly swollen for at least a week at this point.
I’m really annoyed that this whole thing has made it impossible to take NSAIDS.
If it weren’t for the fact that taking them would make this WORSE, I feel like popping a couple ibuprofen would have helped something like this.
Speaking of not having mentioned it, I’m pretty sure I haven’t mentioned a couple things.
Whenever they hit, it’s midday, I’m nowhere near a computer, and my mental note to write it down later gets forgotten.
- The past few weeks, I’ve been having some neuropathy in the right leg.
It hits on the outside of the leg (mostly the shin) and feels like a sudden warmth.
Almost like I leaned up against a heating pad or something similar. Lasts a few minutes each time and goes away.
- I’m pretty sure I’d mentioned that my shoulders were affected at some point, but I doubt I’ve mentioned that the left one is bad enough that I haven’t been able to sleep on it at all in months.
The big U shaped pregnancy pillow I bought helps that - keeping me on the right side - but this sucks.
- The tendons in my wrists and tops of my fingers (mostly between the hand and the first knuckle in the fingers) have definitely been impacted. I haven’t been able to open jars this whole time.
My husband is always around because of covid, but some day this will be a big problem, if it doesn’t go away.
Also, I have no idea how I’ll be able to go back to sewing, if I can’t even open a jar.
Finally, I had an EMG earlier this week, over the lack of reflex response in the achilles.
They ruled out nerve damage, pinched nerve, and sciatica, and have no idea why my achilles is screwed up.
Uh, the floxxing?
Wish there was more to report.
The past few days I’ve been mostly unable to walk.
The left foot was mostly better, the right foot is terrible.
Now the left foot is getting cranky for picking up the slack for the right foot.
The past few days, my right calf learned a new trick: It’s been doing this super fast spasm thing, where it feels like it’s trying to bang out morse code.
Very weird, very disconcerting.
I can bend the toes on my right foot a little bit today, but only from the foot itself - the knuckles in the toes aren’t bending at all, aside from the big one (and just a little bit.).
Also, the second toe is having problems even bending from the foot, so it lags behind and looks like it’s giving the finger.
I took some video today, it’s ridiculous.
Getting about 6.5-7 hours sleep a night the last couple nights, so that’s decent.
I’ve been on the new round of supplements for 3 days now.
Also, I restarted the red light therapy yesterday. Not sure if either are contributing to the slight improvement today.
Things are going downhill.
The front of my foot was bad enough to wake me up at 4am this morning, and I can’t put any weight on it at all.
Rexall doesn’t have any knee scooters available for rent, so I’ve been wildly looking for options.
Looks like we’ll have to buy one. I am very upset.
I thought this was almost over. Porter is joking that buying one will guarantee that this flare will end soon and I’ll never have another, but he’s really not convincing even as a joke.
This is complete bullshit.
I honestly have to wonder what the healing time would look like if I just got it amputated.
Yesterday was absolute hell, and I woke up at 3:30 this morning from the pain in my foot. I’m back to crawling up the stairs, one-foot squats to sit on the toilet, etc.
SO glad we bought a knee scooter yesterday. We found a good deal.
In other news, I talked to a lawyer yesterday.
Sounds like I have a case, but it also sounds like it’ll require a TON of money upfront for dispersements. Ugh.
I’m supposed to see the podiatrist today, but I have no way to get there.
Porter has a meeting, and I absolutely cannot drive like this.
Today has been terrible.
The podiatrist was horrified by the condition of my foot, says it’s out of the scope of anything he can deal with, told me to go right to the ER, and that if it was his foot, he’d be going right to the ER himself.
I talked to a friend who’s a doctor, and decided to talk to the family doctor about getting an MRI and a referral to an orthopedic surgeon.
In other news, I discontinued supplements yesterday, in case one or more of them is exacerbating this flare.
Asking around, I think there’s a chance the glucosamine/chondroitin might be an issue. We’ll see.
Things have been BAD.
Yesterday got slightly better - I was able to sort of hobble up the stairs - but I’m mostly still unable to walk.
Last night was the first “walking” I’ve done in almost a week.
Today I started my period, on day 24. FUN.
Things have slowly been getting better over the last 3 days or so.
Yesterday I was able to put a shoe on my foot for the first time in a couple weeks (too swollen, even though these are loose fitting crocs!), today I have maybe 70-80% range of motion with bending and flexing the toes on the right side - wildly improved.
I’m still having a hard time getting that shoe on - I definitely have to work my foot in - and it’s still visibly swollen.
Walking is getting a little easier, though my ankles are unhappy, and the right calf/shin feels like it’s threatening a tantrum.
I don’t think the left one is actually flaring, so much as being tired of taking the brunt of everything for a month?
I talked to my family doctor yesterday.
He’s going to refer me for an MRI and to an orthopedic surgeon.
I did some calling around and found one who’s actually had experience with this shit, so ... good!
Things have slowly been getting better over the last few days, for the most part.
I can move the toes on my right foot, almost the range of motion I had before this flare.
It hurts a little at either extreme, but I do it.
The sides of the ankle and the achilles are both feeling really... “verge of a tantrum”, so I’m still trying to take it easy.
Also, my right calf is very, VERY tight and achy, so I’ve been working on that.
Yesterday was the first day I could fairly easily put my Crocs sandal on, so the swelling is down quite a bit.
Still not ready for normal shoes, but it’s better than having to drag my foot around in oversized house slippers.
I started doing some foot exercises the day before yesterday. The feet are weak, but seem to be holding up well.
The heart rate is still garbage.
It was in the mid 90s when I went to bed last night, and low 90s when I woke up AT 2 AM this morning. UGH.
I couldn’t get back to sleep, so I got out of bed around 4:30.
This is the third night in a row with ~4 hours sleep, it’s pissing me off. When I wake up, I’m WIDE awake.
Also, the eye floaters have been bad, and my left eye hurts when I rub it - almost like digging on a bruise.
I think that’s all I have to report for the past few days.
Things were really good this morning, I was walking ALMOST normally, almost full range of motion with the toes, just a bit of ache at the extremes.
I had Porter take the Gazelle out, thinking I would start slow on it. I started out the day working on the computer.
I had to go to the store first thing.
I couldn’t quite get my right foot into the new black shoes, so I used the sandals with the heel - first time in a month or so.
I had to brush the truck off, which took a long time and made my foot start to flare up.
I went anywhere - first time I’ve driven in over a month, and it was a bad idea.
Halfway out, I almost turned around. The gas pedal was ok, but trying to break was incredibly painful.
By the time I got home, my ankle felt broken, and I could barely walk.
I iced my toes and ankle, and things got quite a bit better within hours.
I did not end up using the Gazelle, and I worked on the couch the rest of the day.
I started back on my supplements, minus the glucosamine. I figured I was probably far enough along that maybe it would help.
Mid afternoon, I started feeling like there was a marble under the ball of my RIGHT foot. WTF?
Things go worse closer to bed time, with a fair amount of swelling especially around the second toe on the right foot.
I took a cyclobenzaprine to try and sleep, hopefully loosen the calf while I was at it.
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.