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.
So my cat has an ear infection. That's actually kind of good news, because we were worried it was something worse.
... But they're putting her on a fluoroquinolone.
I heard the "-quin" and just froze.
Asked the vet if that was a fluoroquinolone, she confirmed it was, and I just lost it. Couldn't even talk, my husband had to take over.
Pretty sure the vet thinks I'm crazy.
She said all the "right" things...
.."Side effects are usually X,Y,Z" (Yeah, that's what they told me, too.)
... "I've never seen weird side effects any time I've prescribed it" (yeah, neither have any of my doctors).
I really don't want to give her that antibiotic, but it sounds like it's really the only thing that's going to get at it, and her eye is all fucked up from the ear infection, so I really don't want it to get worse.
I like to think I got through this mentally intact, but that was definitely a PTSD episode.
I don't know why I'm posting this, I'm kind of distraught.
Off to do some reading though.
Check out it - I bought winter boots for the first time in 3 years.
Actually, clearance, off-the-shelf boots from a mainstream shop.
They're not orthotic. They don't advertise as being arch support, or good for people with foot problems, or whatever.
It's a pretty stark contrast to having to wear oversized men's sandals - the kind with velcro adjustable toe / able straps - to accommodate swelling.
Or, you know, wearing the boot.
Anyway, I put them on, walked up and down my front steps unassisted, and thought of you guys.
It's wild to me that even with all of the physical gains I've seen since May, little things like this still make me take pause.
This whole ordeal sure taught me not to take shit for granted anymore.
Have been having a flare lately. Not super crippling - right arm is bad, toes a bit swollen - still able to walk.
My sleep, though? Right out the window.
Woke up at 2, gave up at 2:30, and now I'm working on developing keto / protein gingerbread cookies at 3:00 am.
Stay away from fluoroquinolones, friends.
Seriously, if I came down with anthrax or the plague right now, and cipro was my only option?
I'd see what my immune system was capable of on its own.
Almost 3 years of this shit.
The cookie dough tastes really good, though. High hopes.
I'm having a hard time with the coverage of Grant Wahl's death.
It's been revealed that he died of an aortic aneurysm.
It happened a week after he was treated with antibiotics for a suspected bronchitis, and he has reported that his body "finally broke down on me".
I know you're all sick of hearing about Cipro / fluoroquinolone antibiotics in general, but that wording - his body breaking down - was a huge red flag to the floxed community.
Bronchitis doesn't make you feel like that, and neither do most antibiotics.
Fluoroquinolones do, however - and aortic aneurysms / ruptures are a couple other of the many LOVELY side effects that destroy the lives (literally!) of people who take them.
I was lucky that it was only my tendons that got destroyed.
I don't know the guy, I never heard of him before he died... But if FQ antibiotics were what did it, I hope this is investigated and possibly leads to tightening restrictions on their use.
It blows my mind that pain meds are restricted to the point where most people who need them can't even access them, but this horrible class of drugs gets handed out like candy, usually with no warning.
If he was given one of these antibiotics, I would bet my house that they didn't warn him that his aorta could potentially explode.
They sure as shit managed to miss THAT nugget when I asked about side effects.
Elro has decided that he wants to be involved in afternoon stretch sessions as well.
In other news, I can now do the front splits (left front), both turned out AND quad-down, laid almost flat on my left leg.
So, I've now started using a strap to work towards a Biellmann.
I only got my hands to about a foot and a half away from my foot, but... I got into that position and held it, unaided.
... It's been less than a year since I was considering being able to balance on one foot for 5-10 seconds (in physio) a victory, so... I'll take it as a win.
Gotta be careful, because the shoulder MOST involved with that is also the one most fucked up from cipro at the moment.
I dunno if Biellmanns are a wise idea at 43, but literally only one person has ever accused me of being wise, so... YOLO?
Having some freaky body weirdness this morning, wondering if anyone's experienced this or has any insight.
First off: there is absolutely nothing to explain this. I didn't sleep weird, or have a heavy workout, or fall, or anything.
When that's the case, I have to suspect Cipro/tendon bullshit.
The thing is, I've never experienced anything like this before, so I have no idea.
When I woke up, I stretched my legs out, and felt a weird sensation behind my left knee (ie: my GOOD knee!). Slightly above the hinge of the knee, not directly behind the patella.
At first I thought it was the base of my hamstring. I guess it could be, but anything Cipro tends to be tendon.
It kind of felt like I'd straightened my leg over a pile of pins, and got poked by a bunch of them.
It's not "pins and needles", though... Like it's not a numb feeling, it's like getting stabbed by a ton of small, sharp points.
So it's "stabbing pain" in that sense, but not in the normal sense of the word, if that makes sense?
It lasts just a second, no residual anything.
I can walk without feeling it, but if I straighten that leg out all the way - sitting or walking - that weird sensation hits again.
It's like I have a small handful of pins and just sort of poke the leg?
I can't tell if it's just the surface, or below the surface/internal. It's WEIRD.
There's no swelling, discoloration, or anything. It feels 100% normal, UNLESS I fully straighten the leg.
Aside from the pin prick stabs, everything is working fine. There's no numbness in the leg, I can move my toes and ankle with no problem, etc.
... What the absolute fuck?
Paranoia has me worried that I'm ripping my hamstring off, one fiber at a time... But I was able to walk up the stairs fine, without any of that sensation?
This is horseshit. I'm so sick of all this random body bullshit.
Ok, just had my first physio in like ... A year?
My knee got so bad recently, that I figured it was about time to go on, get that actually diagnosed (I was pretty sure what the problem was though), and get him to test the feet and check out the hip and shoulder/arm bullshit.
WOW that was a wild hour. Don't even know what to start with, but wanted to get it written down here for when I need to look up info later, lol.
I guess first off, he congratulated me on correctly diagnosing my knee issue - patellofemoral syndrome. It's in my landing knee, and it was a problem I had when I was about 16.
Unfortunately, knee braces aren't as much of an option now, as they just fall down.
He was pretty excited to have a super traditional injury that is presenting exactly as it should, after all the cipro bullshit learning experience we both went through, though.
As far as the feet go, he re-did some testing quickly.
I know the tests he’ll do next week, I won't do so well on (balance and 1 foot calf raises) as I have done towards the end of our last sessions for that, but in terms of *strength*, he's thrilled. Sounds like my foot strength is at least on par with the norm, if not stronger.
As for range of motion, he did the "knee to the wall" thing and freaked right out. Towards to end of our last round of in person sessions, I was up to 12/13 cm, which was apparently above average. Today it was 14/15, and he said he hasn't even seen that before.
I was fully expecting him to tell me that an insurance between quad strength/hamstrings were causing my knee (and maybe even the hip/ problems.
...I was UTTERLY unprepared for him to tell me that I was right about the imbalance, but wrong about the muscles. I was right about the quads, those are still freakishly strong desire not having done any quad strength anything in years.
His words on my quads were "yeah, you could put me through that wall if you wanted".
No, APPARENTLY my hamstrings are strong (since the fuck WHEN?? I guess those straight legs deadlifts work?)... But my GLUTES are weak?
I've never had weak glutes? I mean I haven't been working them at all, but I figured they were like my quads in that I literally don't have to do anything for them??
The testing all lined up perfectly, though, so it was nice to not hear "well THAT'S weird", or try to figure out results that completely contradicted each other (cipro is bullshit!).
I'm assuming the glutes are at least going to be similar to my quads in that it probably won't take much effort to bulk them up, so that's good news.
Sounds like the glutes issue might help both the knee and the hip numbness though, so it's good to hear that might be an easy fix.
Moving right along...
Yup, the hand, elbow, and (part of the) shoulder bullshit is tendon. The biggest issue is a biceps tendon at the shoulder.
... But there's also a rotator cuff injury.
I'd kind of forgotten about it, through cancer, Cipro, and a pandemic, but I'm like 90% sure that's the side I had a suspected tear on, a few years ago (from how I sleep, LoL).
We tried to get an MRI on it at the time - in Minneapolis - but they'd packed it in such a way that it caused a big meltdown, and I hadn't gotten any imaging on it since.
The good news THERE is that that part doesn't look to be cipro related, and it's 100% acting like he would expect that *known and common* injury to behave.
He was really excited at another traditional, "earned" injury..I STG I thought he was going to high five me over it, LOL.
So, I'm going to have to wait for more details on the elbow and hand tendon bullshit, but he's pretty sure that's going to be ok, given the current state of my feet. (And the tendon damage in the feet was WAAAAAAAAY beyond what's going on in the hand/elbow/shoulder).
He gave me a couple exercises to start with on the shoulder, though.
Also told me to lay off on shoulder press/lateral shoulder raise/skull crushers for a while. Whatever, I hate the first two, and I can do a different tricep thing.
He was thrilled with my grip strength, too. I think he said he'd be happy with 18, and I got 32 on that first hand (my left).
He got new to do the right hand, telling me that it was ok of I couldn't - it's still bandaged from slicing my palm open yesterday morning.
He wouldn't tell me what I got, right away, along be what I think I did. I thought it felt pretty ok, maybe slightly less than left (though I'm right handed), so I guessed 28. It was 31 and a bit!
Oh, say one point he did a couple tests for EDS, because of one particular flavor of weirdness that my knee was doing - and that I fall into a couple high risk groups for EDS (autistic woman, floxxie).
I told him I was 100% confident that I don't have it, and he confirmed. I mean I KNEW, but it's still good to hear.
He also said that if I'm not presenting with EDS by now, I'm not likely going to in the future. That's FANTASTIC!
Like I said, I know I'm not... But that bit of knee weirdness (like my lower leg disconnecting from the rest of my leg from time time l to time) always spooks me a little on that front, you know?
So yeah. TL;DR: I'm strong enough all over (aside from my ass), freakishly strong in some areas, fanatic range of motion, and most of the ways I'm fucked up at the moment are textbook and easy to deal with.
1/26/2023 - My Vaccine Experiences
I'll keep this short and sweet:
Pfizer (My first 3 shots):
Caused a minor - super minor - flare each time. A couple of my small toes swelled a bit, minor pain in those toes, I think maybe slight sleep disturbance.
The big thing for me was the WILD change in periods. I'm already anemic, the gorefest that happened for a couple months after each Pfizer shot wore me right out.
Verdict: If I were a guy, I would have no problem with this one. As a woman... uh, I could have done without the bloodbath. The actual flox flare shit was easily tolerable.
A couple days after this one, I had a VIOLENT flox flare in my feet tendons. Was back to crawling to get anywhere, like in the first several months of my cipro nightmare.
... the 18 hours later, it was gone. Like it never happened.
Verdict: Between these first two shots, it's a tossup. The period shit wasn't painful or AS debilitating, but it also went longer, and over multiple months. If I was a dude, it would be Pfizer over Moderna, 100%.
Novavax (my most recent booster):
I was a bit tired for a couple of days, and my arm was sore. As far as the tired goes, I also had my flu shot at the same time (the other arm), so it could have been the flu shot or the combo - it was minor enough that I don't honestly care much, TBH.
Verdict: I will absolutely stick with Novavax as much as possible, going forward. The efficacy looks a bit better than the others anyway, and not having a flare was lovely.
I took them in the order listed here. The Pfizers were earliest in my floxing (which happened in March 2020), and the Moderna and Novavax happened after my big turnaround last May.
For all I know, the flox flare aspect of the Pfizer shots I had may have been smaller / null, had I taken that shot this late in the game.
The Moderna, though... that was scary. That was after I had pretty much all of my freedoms returned to me, and I thought I had lost it all again.
Anyway, hope this helps someone.
Just have a minute, but have a couple updates to share:
1. Had a bad day for floaters the other day ...
... Until I realized that this "bad" was nowhere near as bad as what used to constitute a GOOD day.
So I guess I've slowly been improving and just not noticing. This "bad" day was only noticable in the washroom (all white walls).
So I guess it can get better!
2. I went skating on actual proper ice for the first time in over a year.
Last time was an absolute shit show, I managed to sprain my ankle just from standing on my skates, as my ankles were so weak.
Well, I could hold deep edges on one foot this time, and managed to do a spin fast enough / with enough rotations to make me dizzy on the first try.
So, things are still coming along well.
Maybe next week I'll do up one of my "bring you along" videos for a spin 🙂
Anyway, just wanted to pop in with a reminder that this bullshit does eventually get better.
I'm coming up on my 3rd floxiversary next month, and I'm relatively functional.
Just 1 year ago - as Facebook reminded me yesterday - I was celebrating being able to STAND UNAIDED for a few seconds.
What a difference a year can make
Hang in there, everyone!
2/18/2023 -Bawling in my car
So I was waiting in the car while my husband was dealing with a curbside pickup, and a friend sent me the following message.
It kinda fucked me up a little, figured I'd share 🙂
Just wanted to say thank you for all the awareness you've put out about cipro, I work at urgent care and in the ER and I've been telling doctors and providers about the damage it can do, and there are several people who will not prescribe it anymore.
They are teaching it in PA school now, not to use it unless it's literally life or death, I've met several young PAs who are aware of it now.
I just was able to catch and diagnose a person with a tendon issue yesterday from cipro.
Just wanted to say thank you for the education!"
I've been salty about having a minor flare lately, this made my day.
Feels like maybe I've been able to prevent at least one person from going through this, even if at arms length.
Ok, quick update.
Found a rink that is empty enough to be able to skate with pretty much zero Covid risk, so we've gone 3 times now. (Fully masked, obviously).
The first two were just kind of getting my feet under me - first with my recreational/outdoor skates, then the last time I used my actual skates.
Had a bunch of arch issues that were completely unrelated to my floxxing, just the nature of going back to proper skates as an adult.
Went today, was feeling a bit more brave, and tried a few things that I haven't even attempted since getting floxed almost 3 years ago.
Back spin - half decent for the circumstances, got complelimented on it by another skater (!!!)
Forward spin - DEFINITELY fairly decent, considering. Weirdly better than back spin, not normal for me. I guess it might be because my back spin foot was the one more severely affected? Was able to spin fast enough to get "drunk off my ass-dizzy"
Back camel - UGLY, and like a rotation and a half... But hey, I tried.
Flying camel - lol more like stepped camel. I did leave the ice though.
JUMPS!!!! - Feels dumb to get excited about a Waltz jump, but I did a couple with no problem. Two footed a salchow, DOA'ed a couple attempts at a toe loop.
That probably means nothing to anyone reading, and it was definitely humbling to me as someone who was doing a LOT better 3 years ago.
It was better than I was doing ~4 years ago, when I first came back to skating as an adult.
Like everything was shaky and ugly and uncertain, but I don't think anyone that had only been back for a year, then took 3 years off would be any different - even without all the cipro bullshit that happened.
Like this feels like just garden variety starting over.
My back is definitely feeling those jump attempts, but I'm not having and tendon issues at all. Really wish I could take ibuprofen!
I'll tell you this much though... Feeling "wind" in my hair like that was fucking medicinal.
So I was sore yesterday, didn't think anything of it.
Today went from walking up and immediately needing an ankle brace to be able to hobble around, to needing the boot for the first time in about a year, to crawling.
I just crawled up to the bedroom early, because after using the washroom, I wasn't convinced I could get back to the couch, and the stairs were right there.
I'm hoping the tendon (right peroneal) is just pissed off from skating the other day - it IS my landing foot, and it's also the one that was the most destroyed by the cipro (Achilles tear, etc).
If it's just pissed off from something I actually did, it should clear up in a few days, maybe a week - if it sticks to the pattern it's established.
Far more concerning is the possibility that It's chemical - whenever I've had a flare from a drug or supplement, it's been well over a month, and it some cases 2+ of not being able to walk.
I had to take a Tylenol 3 a couple days ago, and Tylenol both yesterday and today.
Also took DMAE yesterday and today... Which I guess would be my main suspect, though it's been fine the couple times I've taken it before.
... Though I have gone back on protein powder the last few days, so I suppose there could be something in that?
This fucking sucks.
If it turns out it's a legit thing and not more Cipro chemical flare bullshit, I'm probably going to avoid any kind of jumping till I lose some more weight.
DMAE and Sleep
I don't know if this is much use to anyone - and I'm checking in with a VERY limited data set - but figured I'd put it out there.
Recently started taking DMAE.
At the same time, I started REALLY sleeping through the night - and then some.
Cipro really fucked my ability to sleep, and - even with as far as I've come in the last three years - I was fairly habitually walking up at 3 am and not being able to get back to sleep. 5-6 hours a night, on average.
Now, I want to be clear that I'm talking about literally like 3 days here - and it COULD be a wild coincidence - but the last 3 days (3 days I've taken the DMAE), I've gotten 8-9.5 hours of sleep every night.
I wake up later than the cats want me to, and definitely feel like I would have slept even longer, if not for them screaming at me.
Nothing else has changed. This is a HUGE improvement for me, and the timing seems way too suspect to not be the DMAE.
Caveat: I have all kinds of weird and random responses to drugs and supplements, and a lot of things do the exact opposite to me, than what they're supposed to.
Chamomile and melatonin give me wicked anxiety and insomnia, for instance.
So, your mileage may vary.
Still, thought I'd put it out there as something to consider.
I'm using the Revolution Nutrition brand, 250 mg per capsule. It recommends 3x daily, I've been doing 1 a day, to make sure it was safe and didn't trigger a flare.
No skating this week.
I'm able to hobble around a bit - it's a bit of effort and a fair amount of pain, but at least I *can* do it now. A couple days ago, I couldn't put any weight on it at all.
Still haven't figured out if it's a chemical flare or a physical one.
It's acting like a chemical one, in that it's moving around (started in the peroneal tendon, moved over to Achilles as well, now it's mostly the insertion point of the Achilles), but I don't have any of the other issues that come with a chemical flare - ie massive sleep disturbances.
I'm working with really dirty data this time, so I'm unlikely to find out what caused this.
This is the nastiest flare I've had in a long time - it had been around a year since the last time I had to use a boot or the knee scooter, before now.
Because of some fun timing, DMAE is both the number 1 suspect if it IS a chemically induced flare *and* potentially causing the doubt that it could be.
I started taking it right before the flare, but I've also slept better every night that I've taken it, than I have this entire time since cipro completely fucked me up.
I'm not sure of the odds of something both inducing a flare *and* doing away with one of the most common parts of a chemical flare though, so ???
I've continued taking it, because holy fuck, 8-9 hours of sleep every night is WILD.
I've been making mild improvement day by day, so I'm leaning towards it not being a chemical flare. If the DMAE was causing it, I'd be getting worse, not better.
It's also really the only thing that could have caused it, nothing else has changed.
If it's a physically induced flare, unfortunately, it was the skating that did it.
So when this clears up, I'm going to take the arch supports out of the boots (they were bothering me on Friday), and stop any attempts at jumps or flying spins, for now.
Anyway, that's where I'm at. Fuck Cipro.
Kinda looks like the Achilles (landing foot) might have partially torn again.
I guess that "try something dumb on the ice" was dumber than intended.
Woke up at 3:30 because my landing foot decided to swell up like a balloon and cause EXCRUCIATING pain.
My ankle feels like everything in it had been shattered, and it's nausea inducing levels of pain.
I'm coming up on my third anniversary of this bullshit.
(On the upside - and I'm really trying to convince myself this is a good thing - this shit points more to a tendon flare, than the partially torn Achilles I was suspecting.
Not to say it can't be both, but the burning in the Achilles has been subsiding over the last few days. That + this makes me think flare.)
So, quick foot update.
Took a robaxacet and had Porter rub my shin before bed last night. Slept well, foot was a fair amount better when I woke up this morning.
Started the day out in a walking boot - was sore to stand in it, but I *could* stand in it, so that was already a big improvement from yesterday.
As the day progressed, the foot kept improving. I can walk on it without any aid now (Brace/boot/cane), and hobbled up the stairs to bed, rather than crawled.
... So that's a BIG improvement.
Still not 100% sure what caused this flare, but I'm hoping:
1. That I'm through the worst of it
2. That the fact it ended up being a flare means that there was NO partial tear, and it was just a weird start to a flare.
Just took another robaxacet and Porter rubbed my shin again, we both figure that one or both things helped this along.
Going to bed, hoping for even better mobility tomorrow.
So my foot got mostly better JUST in time to have to gut half my kitchen (pantry, most cooking equipment, etc), while Porter was off on a run.
Got most of it done before it was just too much. Probably shouldn't have been hauling big ~80+ lb bins across the house.. But hey, I COULD!
Everything hurts. My hand tendons still can't handle twisting the lids off water bottles, and I'm doing this shit, LOL.
So I sit on the couch and try to chill for a few minutes...
... And my fucking freeskate music comes on the radio, wrecks me.
I picked this music several months before I was Ciproed, my first competition was supposed to happen about 3 weeks after cipro destroyed my feet.
I still have no idea if it was a really GOOD song choice, or a terrible one.
That timing though. Damn.
So the other day, I had a reminder of the first time I'd been able to walk on my toes since cipro destroyed my feet.
It made me kind of sad, because I haven't been able to do that in MONTHS, despite everything else being decent to good (this recent flare excepted, of course). I could do weighted calf raises, but couldn't walk on my toes.
So it's been, what, less than a week since I couldn't put any weight on my foot at all, had to crawl up and down the stairs, etc?
A few days since I was using a cane and a boot?
Yeah. Today I walked across the room on my toes. *
What the absolute fuck?
*Could only do it across the room twice and then they were *done*, but still - very out of the blue!
In other news, Today is the third anniversary of the day l got the diverticulitis that both saved my life (they found the pancreatic cancer by accident), and ruined it (cipro).
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.