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’ve been neglecting this diary, but to be honest... there’s not a ton to report.
Both feet were seeming pretty normal (aside from the right achilles) for about a week, then things went sideways again a few days ago.
This time, the left middle toes were pulling back, the right toe almost felt gouty (but not), and there was a lot of pain in both sides of the right ankle.
Most of that calmed down a couple days ago, but the sides of the ankle still feel terrible.
Also, the achilles feels weird- hot, but more like a chemical burn hot, and inside - not the skin.
Not sure if that’s a return of the neuropathy, or something wrong with the tendon. FUN.
Due to the way work is going, I tried sewing this week, and it went poorly.
I feel like I probably don’t discuss the upper body problems, because I’m so focused on the feet. I wish I’d documented this crap better.
It’s been months since I could open a jar.
I have no grip strength, and trying to twist anything open feels like it’s doing serious damage to my wrists.
My wrists/forearms are frequently swollen, mostly to the inside of each wrist.
My shoulders are really bad, from a line going along the collar bone, across to my bicep.
Sewing really messed me up for the day.
Business won’t reopen til Covid is behind us, but I’m really starting to worry that I won’t be able to return to sewing.
It took me a week and a half to do a project that should have taken me 1 work day, and I *paid* for it for several days after finishing.
This morning I had to bend/crouch down to pick something up, and I felt a pop and pain in my left achilles.
It immediately did the "cold water running down the inside of my leg" feeling, something I'm pretty sure that one hadn't done that before.
I iced it and kept it up a bit, put the boot on to get around, and figured I'd see how it was after a couple hours.
After lunch, I took the boot off. As I stepped into it, it felt fine.
As I turned slightly to the side, there was as ton of pain, and a burning sensation.
It continued that way the rest of the day - standing directly over the foot was fine, twisting it either way, even slightly, was not.
Went for an in person physiotherapy appointment, was really long - 2 hours.
Lots of questioning, some reflex testing, some exercise demonstrations.
Apparently I have no reflex reaction in the right achilles. (She tested both, as well as my knees, hamstrings, etc.)
She was wondering if I have a bulging disk in my back, says that sciatica can cause the lack of reflex response.
You’d think that, I don’t know, the *injury* would be the first consideration.
She said I’m pretty flexible (I don’t feel it!), seemed pretty happy with how things are going, and expects me to recover.
She wants me to walk daily, gave me a few exercises to do. She booked me for a few other appointments.
The left achilles isn’t acting up today, so hopefully that was nothing. Talked to my family doctor about it today, he’s saying to just keep an eye on it.
Just talked to my family doctor, and I am PISSED now.
He questioned me about the bulging disk thing, and generally disagrees with her idea that I have a bulging disk (duh), but then started trying to pin the lack of reflex on my HYPOTHYROIDISM.
Never mind that my t3 and t4 are fine, and that I’m completely asymptomatic.
Never mind that it is *this specific area* out of ALL on my body... that’s currently all kinds of screwed up from the cipro.
Let’s try and pin it on my thyroid.
What the actual fuck?
Never mind that it would have to be a hell of a coincidence for my thyroid to target that very small, very specific area...
I’ve literally never heard of this being something hypothyroid people experience, even though I’ve had it for 22 years at this point.
Also, let’s just completely ignore the fact that that side of my body went numb after the cancer surgery in June and has been slowly thawing out since.
If “sciatica” can cause the lack of reflex, why aren’t they thinking maybe this is part of the surgery thing, rather than “Ooh you might have a magic bulging disk and sciatica issue... that just doesn’t cause any pain”.
Whatever happened to “if you hear hooves, picture horses... not zebras”??
Anyway, he wants me to get an MRI and nerve conduction test.
Had a call from the physiotherapist.
Had to explain what “gaslighting” meant, after telling her that between the sports doctor, my family doctor, and this new focus on the nerve, I feel *incredibly* gaslit.
I’m so frustrated over the whole thing.
When I’m not being gaslit, I’m feeling victim blamed.
Things have been doing ok, for the most part.
Walking is making a spot just behind the ankle - both legs, both sides of the ankle (but worse on the inner right ankle) hurt, with a sharp pain.
It only does it on the treadmill, not sure if that’s because that’s the only time I’m wearing runners, or if it’s a speed / “walking with intention” thing, rather than just puttering around the house.
The toenail came off my big toe on the right foot tonight.
It had been looking weird for a while, turned out it was delaminating from my toe.
Just came clean off, no blood or anything.
The really weird thing is that there is no obvious reason for it - I hadn’t jammed it, dropped anything on it, etc.
I don’t think I mentioned the toenail looking weird here before, because I didn’t connect it to the Cipro.
When the toenail came off for no apparent reason tonight, I asked about it in a group for floxxies - sounds like randomly losing toenails isn’t uncommon for those dealing with cipro poisoning.
Saw the physiotherapist today, things went a LOT better. I’ve got more movement in my foot when it comes to the bend/point/flex stuff, and the calf raises were pretty easy.
Then she had me try to raise up on the one calf, and NOPE. It’s like something wasn’t even connected.
Also: really hurt my arches to try.
Then she tried having me raise up on 2, transfer to the right, and lower... which was marginally easier, but still incredibly difficult, and a big fail.
She told me not to do that much, going forward, but to try it ONCE a day.
She’s letting me use the Gazelle again.
I straight up cried when she told me.
It’s only 5 minutes at a time, slowly, and not much spread, but I’ll take it.
It would be nice to actually use it for cardio, but at least this is a step in that direction.
Also, I’m allowed to walk barefoot again!
Only a little, when puttering around the house. No “while I’m cooking”, specifically.
I asked her to check the nerve again, and she THOUGHT she felt something.
Then she had me hold my hands and pull (???) And tried again, and there was nothing.
My ass was slightly less numb, so I’d been hoping for some improvement.
Woke up with morning with a lot of pain high up in my right calf, and with the middle toes of the right foot having a mild fit.
Really hope this is just because she pushed me pretty hard yesterday, and not the start of a flare.
The pain in both sides of my ankle, both feet (just behind the ankle bone, a diagonal line of pain) persisted all day.
I did as the physiotherapist requested and pushed through to some degree, and finally did some Gazelle.
The gazelle didn’t make it any worse as I was doing it, so I did 15 minutes. FREEDOM!!
In the evening, my left middle toes joined the right ones in pulling up a bit and feeling like there’s a flare coming on.
Woke up to pain above my right toe, and my first thought was that it was a gout flare, on top of everything else.
Once I was awake enough to suss out the situation, I realized that it’s not gout.
It’s not red at all, and it’s not in the joint - it’s a bit higher up. It also doesn’t hurt to touch.
Last night when I was going to bed, I questioned whether the ankles + toes weren’t so much the warning of a flare, but maybe an actual flare.
Maybe I’m far enough out that flares will be more mild?
It’s annoying, but I CAN walk - unassisted. It’s nowhere near as bad as previous tendon flares, if that’s what this is.
I hate the random nature of the attacks, that it’ll go after SOME tendon(s) in the foot, but different ones. It makes no sense to me.
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.