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.
Things are utterly miserable.
Yesterday’s toe thing escalated to a full flare of the tendon going to the big toe on the right foot.
I could barely move it for the second half of the day, could barely walk, and spent the day icing and elevating it. It’s not really swollen, only slightly discoloured.
I woke up at about 3 am this morning, because of the tendon pain - it was so bad, I felt like I was going to throw up.
After a few hours of icing it, the pain was tolerable.
I can move the toe a little now, no idea if I should or not.
Left a voicemail for the physiotherapist to ask what she wants me to do.
Until then, it’ll be a lot of rest, elevation, and ice.
I AM SO DISCOURAGED RIGHT NOW.
I think I’m going to have to give up on physiotherapy.
My therapist is constantly gaslighting me, and I just can’t deal with it.
Last night, she wanted me to consider the possibility that this isn’t cipro related, it’s “an old skating injury”.
You know, one that happened to start up hours after taking cipro, randomly attacks tendons across both feet (despite not javing injured the left one) AND my hands, caused random neuorpathy for months after cipro - and then disappeared - etc.
So much of what she tells me is some variation on “in my head”.
Like when I mentioned “tendon attacks”, she went of on some schpiel about how my use of the word “attacks” is training my brain to cause physical pain.
You know. Straight up blaming me for being in pain. FUN.
In other news, the pain was bad enough last night, that I took my last T3 before bed.
I think it worked, as I woke up a lot more comfortable than I had been.
Once I got up, my foot swelled up like a balloon. There’s discolouration across the top of the foot, I’m unable to get a shoe on.
I talked to my family doctor about getting some more T3, and thankfully he went along with that.
Wasn’t sure he would, where he just prescribed me a round of dilaudid.
I wanted to try t3 again before going to that, though, as it’s been a while since the last time I had T3.
I was able to hobble around today, and was able to move my toes a little - better than yesterday, for sure.
In the late afternoon and evening, my foot was VERY discoloured.
Tonight and last night I was unable to walk up the stairs, had to crawl.
Porter finished the light array yesterday, so I’ll be doing nightly blasts of that, going forward.
Slept well last night, did NOT take any drugs yesterday.
The foot is much less swollen, the colour has calmed down a lot, and I’m not really in much pain unless I try to move it - huge improvement!
I did start my period today, which has me questioning what role my periods may play in the whole thing.
Last month I had a flare that followed my period, the month before I had a flare around the time I probably had a period (though I wasn’t tracking it).
I’m going to need to be better about writing EVERYTHING down.
Today I haven’t needed constant ice like I have the past few days, and I can move my toes a lot more than yesterday.
Was able to walk up the front steps today.
So sick of my physiotherapist’s bullshit.
I have no idea why she’s so fixated on this being anything BUT tendons, but she really seems to have made it her mission to “disprove” this being cipro related.
She spends a good ⅔-3/4 of every session just arguing with and gaslighting me, I can’t handle it any more.
Last week, she randomly called me to say that she’d contacted “one of the top achilles experts in the world” about me, and apparently that person told her that tendon problems do happen with cipro, but that they’re “quick and short lasting”.
She told me that once the drug is out of my system (a few days) that anything that happens after that isn’t attributed to the cipro causing it.
That’s... not how it works?
I sent her a fairly snotty email with links to peer reviewed studies and suggested that she and her “expert” may like to read them, and was pretty sure she’d fire me, but she did not.
Then I went to see her today, and just... augh.
Before going in, friends were taking bets on how long I’d get into the session before just walking out on her.
That’s how bad it’s gotten.
I almost walked a few times, but managed to stick it out the full 50 minutes.
Today, it was “Central nervous sensitivity”, telling me that my pain threshold is just super sensitive, and made an analogy about how most people can cut their finger and it's no big deal, but then others with this sensitivity will be in excruciating pain from the same thing.
... Ok, but my pain threshold hasn't changed?
Literally anyone is going to be in a ton of pain if the tendons in the top of their foot freaks out and literally pull their middle toes back and upright?
She kept framing things as "when I'm ready/ willing to work on progressing", in response to anything to do with "give this flare a couple more days to level out and see where it goes".
She danced awfully close to the "in my head" thing a few times, almost walked once, and then she tried to tie this in to my no-longer-existent fibro DX, even though I told her that had been a misdiagnosis of a BCAA deficiency that got figured out.
So yeah, I haven't been symptomatic for fibro since literally minutes after my first dose of BCAA supplement back in 2018, but now that's causing this.
ALSO she made some snotty comments about how I "seem to like to Google" (???), which I'm guessing is over the email with the links to studies.
It was super condescending and kind of framed like a Dr would talk to a hypochondriac.
She goes back and forth between treating me like I’m not doing anything (“When you’re ready to actually PROGRESS” / “If you don’t load it, it won’t ____”), and coming down on me for doing too much, and telling me that I need to feel safe, I shouldn’t do anything that doesn’t feel safe, that she won’t come down on me for not doing something that feels unsafe, etc.
You know, minutes after she does exactly that.
Pick a side, am I lazy and non compliant, or am I wreckless and pushing too hard?
I told her at the beginning that I can’t do anything that puts pressure on the top or front of my foot. She says she’s fine with that.... then she immediately suggests excercises that do exactly that!
I mean literally wrapping ankle weights across the top of my foot, literally a minute after I pointed to that area specifically.
She knew I was wearing wedge heels because those are my only shoes that have a lift and *do not press on that spot*.
So then she asks me to do the “strand up straight and lean forward” thing, and gets frustrated when I pointed out that that puts pressure on the front of the foot, exactly where I told her I can’t right now. UGH.
I am incredibly frustated.
On the upside, she gave me some more foot exercises that I can probably do even when in a flare, AND told me that when I can do 30 calf raises in a minute - on the right side by itself - I’ll be ready to skate.
I can’t even do one, but at least now I have a very specific goal to work towards.
This have been coming along well. I’m thinking - CAUTIOUSLY - that I may be out of this flare already. I think this makes it the shortest flare, and it’s definitely the least vicious flare I’ve had.
Early on in this flare - 2 weeks ago - I had two nights where I had to crawl up the stairs, but that was as bad as it got, and it was only the two nights.
At no point have I not being able to bear weight at all. At worst I’ve hobbled / had a bad limp/drag. I haven’t needed a scooter at all this time.
I did over 20 minutes of gazelle today!
After the first 20 I took a break, and the sides of my ankle felt REALLY bad... but I took a soak and rubbed magnesium on it, and it felt fine within an hour or so.
I went back and did some more time on the gazelle a bit later in the afternoon. It’s Wednesday, afterall!
IN other news, I think my time with the physiotherapist is done.
The more I think about it, the more I just really don’t think she’s going to help.
If she can’t bring herself to acknowledge the problem as tendon, I don’t see how she can *address* the problems in the tendons.
Also, the stress of being constantly argued with and gaslit is just not something that’s healthy.
I’m going to work on the exercises I know now, specifically rebuild the strength in that foot/arch/ankle, listen to my body, and get through this myself. I’ve done it before (with my back), I’ll do it again.
I have full - or VERY close to full, anyway - range of motion in my toes and feet today. That’s huge!
Woke up with full range of motion in feet and toes again - a little stiffness in the top of the left big toe, but it’s not restricting movement.
I’m kind of surprised, I was expecting at least a little bit of fallout from my time on the Gazelle yesterday.
When I woke up, I realized that I probably hadn’t updated this journal with 2 bits of info:
1 - A couple weeks ago, Porter finally finished the light array, and I’ve been having nightly sessions on it throughout the flare. I’ll have to see if he can figure out the date that started, would be good info to have in this record.
2 - On January 25, I received a delivery of Magnesium spray that I ordered, and have been using that almost daily ever since.
I don’t know if either of these things contributed to how short and easy this flare was - especially with how badly it started - but ... interesting.
Still have full range of motion in both feet and all toes, still just a small amount of stiffness in the right big toe when flexing it back.
The right achilles has been doing a little bit of the spasming thing, but very lightly. It’s not a “kick” like before, more like a twinge. Just enough to remind me that it’s there?
I’m surprised that there’s been no fallout from the time I put in on the Gazelle in the past 2 days. I’m good to do more this morning!
Have had full range of motion in both feet continuously for 6 days in a row now, though my achilles and calf started acting up a little yesterday - aching and popping when I walk.
Today I started a bit of work on the Wobble Board.
I was shocked that I can do it with two feet NO problem (Much better than months ago when I first started!), but either foot on its own is a problem. I’ve done 4 short sessions.
Each has me tire out more quickly than the one before, BUT I’m also seeing progress with each session.
The 4th one saw me able to do one footed on both sides. It was difficult, but I COULD do it.
When I started out, I couldn’t get it to move at all, it was like things just weren’t even connected.
Related: If on two feet, I can go up on my toes. One foot is almost impossible on the left, and absoutely not happening, on the right foot.
I made an appointment with the podiatrist to deal with the toe nail issue, and also talk about foot exercises to get the strength back.
Today is day 7 of full range of motion in my feet.
My right ankle is a bit stiff in front of the leg, I’m assuming it’s from all of the wobble ball work yesterday.
Because it’s been a week of somewhat normal, I’ve decided to start working on flexibility and diet, with the goal of getting back to skating.
I’m starting to believe there will actually be an end to this at some point, so I’d like to be ready for that day!
So, I’ll be working on the foot strength and general flexibility hopefully daily.
I haven’t trained for flexibility in almost a year, so I took some “starting point” photos.
It was pretty bad, though I can still get my foot over my head for spirals on both feet. My better leg is probably a respectable height for an average adult skater.
I can touch the floor with fingers spread a bit, I can almost do the splits. I cannot grab my foot to even try a one handed Biellman.
Saw the podiatrist - today. . He's the one who's dealt with cipro bullshit before.
He says that it's A GREAT sign that he's seeing equal strength in both feet today!
He did say I’m not actually at full range of motion, but am VERY close.
Also: he got a reflex on the Achilles that the physio said did NOT have a reflex. He even tested a second time to be sure!
He says that I'm WAY better than the last time he saw me, that there's still a bit of swelling in the right foot, but that I'm well on my way to healing.(!!!)
He even said that although I’m not ready to skate yet, I’m getting close!
I was NOT expecting that!
He says I don't even need physio, based on what he's seeing, that I can easily just work on things myself. (I didn't even ask him, he just came out with that himself!).
He said gentle exercises to build the foot/calf/quad strength back up, and that all he would really be able to do beyond that is suggest an expensive arch support to help, but that he didn't think I needed that!
HOLY SHIT THERE REALLY IS A LIGHT AT THE END OF THIS BULLSHIT TUNNEL!!
I'm supposed to see him again in three months.
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.