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.
Well it’s been 2 weeks since I got the imaging results on my right foot, and we’re two days away from going in to have imaging done on the left foot.
I probably should have been keeping up with the updates, but honestly... going day after day with “Nothing to report, no improvement” would have been more than I could bear.
It’s been 8.5 months since this happened, I had really hoped it would be over by now, not getting WORSE.
The left foot seems more or less fine, aside from some mild stiffness in the tendons on either side of the heel/ankle, which comes and goes.
I’ve got full range of motion, no problems. (Knock on wood!)
The right foot... seriously, what the fuck?
I would have assumed the right one would have healed much faster than the left, as it wasn’t even all that affected at first - this definitely attacked the left when I first took the Cipro.
I remember mild achilles issues in the right, but the whole foot is affected now.
I don’t understand why this is happening, I’ve been avoiding the things I know to cause flares - NSAIDS and steroids - I’ve been treating it gingerly, taking care of it, etc.
I would have hoped that whatever was causing the damage would have burned itself out by now? Is it still ongoing?
The flare that started in the beginning of October started to improve a bit about 3 weeks ago, then started back sliding.
I don’t know if this would be a flare that just didn’t get better, or if it’s a separate flare, at this point.
It’s definitely the longest and worst one, if it’s just one.
The past few days, the right foot has been acting like it’s badly sprained, which is different than how the flare was acting in early October. I haven’t done anything to the foot, have been resting it for weeks.
Most of the pain / dysfunction has been in the tendons on either side of the heel/ankle, and in front of th e ankle, towards the inside of the foot.
There is some pain in the top of the foot, the toe next to the big toe is pulled back slightly, but it’s not as noticeable / grotesque as it got on the left foot.
I can mostly point the foot ok (effort), but flexing it is extremely painful.
The achilles has been doing the kicking/spasms thing HARD - it wakes me up, keeps me up, too. It hurts to stretch / spread my toes AT ALL.
The right foot feels like it’s twisting itself around, and it seems to be involving the shin - referred pain? I don’t know.
Yesterday both sides of my shin were very tight though - the outside more so than the inside.
About 3 weeks ago, I added some supplements based on what other floxxed people recommended.
Before then, I was taking probiotics, magnesium, and coq10. I added vitamin e, glucosamine/chondroitin, and an antioxidant multi.
My sleep had been getting a lot better by that point (I think it’s the coq10), but took a nosedive after I changed up the supplements, back to about 3.5 hours per night.
I gave it a couple weeks, then went off them for a week - sleep improved, I’m back up to 6-6.5 hours a night.
I really miss the solid 8 hours I got nightly before the floxing. UGH. Will never take that for granted again, if it ever returns on a regular. permanent basis.
The antioxidant pill has NAC in it, which I know gave me a high heart rate when I tried it on its own last year (for nasal issues).
I am removing that one, re-adding the coq10 in its place, starting today.
The red light doesn’t seem to be doing much at this point, so I don’t know if the first few zaps kind of did what it was going to do and then plateaued?
There seems to be enough science - and anecdotal “evidence” - from other people who have been floxxed that we’re going to keep up with it.
Porter is working on an array so I can get much better coverage in one go. It’s particularly difficult to get the achilles done, with the single light setup.
One weird thing to note is that my heart rate definitely goes up during a flare, but the intensity of it doesn’t seem to match up to the intensity of the foot pain at any point.
While the heart rate went up when the flare started, it took longer to come down, than the foot took to get better.
The heart rate continues to improve, even though I’ve hit a second wave of this flare - it didn’t speed back up when the pain intensified recently.
The eye floaters have mostly resolved.
I can’t remember if I’ve mentioned the shoulder / wrist issues, but honestly... they’re so minor compared to the feet, especially as I don’t need them for walking.
Both wrists have been very stiff for months, a bit of pain in the forearms.
The front of my shoulders - basically from the my shoulder across to the bicep - both have a thin line of pain, and it’s been hard to lift my arms above shoulder height. Tendon?
Living on the couch at this point, it doesn’t really impact anything I can do, but I’m guessing that’ll need to be addressed as I (HOPEFULLY) get better, get more mobile, and get my life back.
Yesterday was absolutely miserable.
My foot feels completely mangled, and the pain progressed to the point where I’m back to not being able to put any weight on it at all.
Moving my toes or flexing/pointing my foot at all causes *screaming* pain, and just holding it in a neutral position (raised on a cushion on the couch) is almost completely unbearable as it is.
Yesterday was bad enough that I took a T3 in the afternoon, AND another in the evening.
The afternoon dose took the edge off the pain a little, the evening one did nothing.
I woke up at 3am just now, searing pain. I can’t even hobble around the bed, I had to roll over the other side of the bed, scoot down the cat steps, crawl to the stairs, and scoot down on my butt to the knee scooter waiting for me at the bottom.
I spoke to the physiotherapist about the achilles yesterday, she says I should see an orthopedic dr and do a couple/few weeks in a non weight bearing boot - around the clock.
Sounds terrible - especially with the way the top of that foot has been acting the past few days - but I’m going to make some calls today.
I can’t live like this.
I’m really upset that this second wave of a flare / the entire flare since October seems to have no actual inciting cause.
I did everything right. I thought I was almost healed. This is absolutely ridiculous.
Today has been WILD.
It’s been the worst day for pain/mobility I’ve had in a long time. Excruciating and I’m exhausted. I’m so sick of being crippled.
I spoke with the physiotherapist, who is AMAZING and actually looked into this whole thing, spoke to a pharmacist, worked to get me in to see a sports medicine dr, and basically listened and put up with my million questions.
None of what’s going on makes any sense to me and I swear I sound like I’m making things up, so it was really amazing to be listened to and believed.
I called the office she referred me to, and the guy doing scheduling sounds super on the ball. I already like him.
Then I talked to my podiatrist, to see if I need to cancel my ingrown toenail procedure yesterday.
Yes, I do - he says if he does this while I”m in a flare, I’m at risk of rupturing a tendon. He knew EXACTLY what’s going on AND HAS DEALT WITH IT BEFORE.
He says yes, people make full recoveries in his experience, but that it does take time, and that mine will take longer because of the cancer surgery.
He suggested putting a heel lift in my boot to take the pressure off the achilles, and to call about the toenail surgery when I’m not in a flare.
He also said I can come in and just have it trimmed back in the meantime, as needed.
I was SO relieved to hear he’d dealt with this before.
I got off the phone and bawled. Between the physiotherapist and this, it feels like I’m finally getting somewhere.
Which, you know, is wild when I’m comparing it to the actual state my foot is in at the moment - completely mangled.
So the plan is to wait to hear back from the sports medicine dr, see him, probably immobilize it our a couple/few weeks, and then physio.
The physiotherapist wants me to check in throughout so she can be sure that I’m taking care of my knees, etc while booted.
Woke up in a ton of pain, but it’s a bit different than before. I wonder if this is the tenosynovitis?
Everything in the sides /front of the ankle and top of the foot still hurt, but the area in front of the smaller toes (It seems to stop short of the big toe, or at least is much less there?) is on FIRE.
It’s a different kind of pain from gout - and I can touch it - but I’d put it on par with it... just across a much bigger area.
Still can’t walk, so I guess it’s day 3 of needing the knee scooter for everything / not being able to leave the house.
Things got better towards the end of the day - I was able to hobble in my boot.
Not great, but the pain had mostly migrated to being just in / in front of the toes. Clearing up from the ankle area made it easier to walk.
I”m seeing what the physiotherapist means about the boot.
It feels like I’m walking on my heel, and my achilles is unhappy about it.
I’ve got a wedge insert on order, it won’t be in until 3 days from now, so Porter is going to make me a wooden one to get by until then.
Slept 6 hours last night, the pain was manageable this morning.
I wonder if the flare could be tied to my period - this flare started with my period, the worst of the pain was during the worst of the period, and as that started to subside, so did the foot pain. I wish I’d tracked my periods til now, to see if there’s a pattern.
If we do start noticing a pattern there, I have no idea what the mechanism would be. General inflammation? Hormonal? A sudden drop in iron?
Just got the results back from my ultrasound - no tears in the left foot! There’s some fluid on a joint, but it sounds pretty mild!
I was terrified that they’d find something awful and that I’d have to try and do 2 non-weight bearing boots at once.
Given how awful the left foot started out.. OMG I have some hope!
This whole thing started in the left foot and was nastiest there, though subsequent flare ups have mostly been in the right. I know that tendon stuff doesn’t always show up (unless there’s a tear), but that foot was SO much worse than the right. If it looks ok right now, I’ve got to think there’s a chance it’s actually healed.
... and if it can heal from how fucking mangled it was (seriously, it was gross - toes pulled back 90 degrees and all), I’ve got to think my right one will eventually be ok.
Which is good, because it’s really awful at the moment. I finally caved yesterday and asked my Dr for heavier pain killers, as T3s aren’t even dulling it.
I won’t take them unless I’m basically ready to die, but even asking him about them ... shows how bad it’s been, the past few days.
In other news, Porter built a custom heel lift for my walking boot, so on the days when I can actually put weight on my foot, I can do so without worrying about tearing what’s left of my achilles.
He’s still working on a wild custom IR light array thing for my leg, but he’s also in finals right now.
The last few days have been slow improvement.
Nothing dramatic either way. I can bear a bit of weight on the right foot if I’m wearing the boot with the wedge in it, but it also puts a ton of pressure on the front of my foot, which is still recovering.
My achilles hasn’t been spasming anywhere near as violently or often as before, so that’s good.
The other night, I had 8 hours sleep, unaided!
The past two mornings have seen far less sleep, but still around 6 hours so, not terrible,
Today is the first day that the foot hasn’t been discoloured at all.
It was really purple at the beginning of this nasty flare (the last week or so), and has slowly been regaining its normal appearance.
So, guess I’ve got a few days worth of updating.
I saw the sports medicine doctor a few days ago, and it did not go well.
He was rude, knew nothing about the antibiotic reaction situation, basically gas lit me whole time, got mad at me repeatedly for things like telling him that I can’t take NSAIDs or cortisone shots.
He also kept carrying on about “IF” I have a tear, while treating me like I’m making the whole thing up. Very frustrating.
I guess it didn’t help that the flare up was definitely settling down before I got in to see him, but you’d think the imagining results would say enough.
Anyway, the day before I saw him (Wednesday or so?), my right foot was getting to the point were it could bear weight and be walked on to a degree, but I held off on actually walking without the boot until I saw him.
He wanted me to “wean off” the boot (I don’t think he realized that I only had it on when I needed to walk), so I’m mostly just going without it now.
Yesterday, it felt very weak, sore, and like it was going to just go out from me at any minute. Today it’s feeling a bit stronger and a bit less stiff.
Curling my toes this morning, I seem to have full range, it just hurts (in the pad) when I crunch them all the way in.
Flexing my toes is a lot better than it has been, but the range is definitely limited in that direction.
Things are coming along slowly. I’ve got a lot more range of motion in the toes, but the whole heel area feels incredibly weak and ridiculous.
Yesterday I got a call from another physiotherapist at Mac2Hope, looks like I’ll be doing an in-person assessment with her in January, as the one I’m working with isn’t able to see people in person.
I asked if this meant that I wouldn’t be doing any physio until then.
Apparently the first physiotherapist will be doing a phone consult with me soon.
She also told me I’m not allowed to walk around barefoot at ALL - only running shoes with a heel lift.
She wants me to walk for a few minutes a day and gradually increase it. I’ll be using the treadmill for it.
I’m really frustrated by things. I feel like I”m getting bounced around, passed back and forth, and not really getting anywhere.
This is literally the first time anyone mentioned a footwear requirement for when I’m “weaning off the boot”, and she acted like it was a given.
Also, there was a whole lot of repeating herself, and not a whole lot of listening.
I was explaining the weird way I end up walking (lifting the foot directly up with each step, no roll through), and no matter how I explained it, she very curtly told me she had no idea what I was talking about.
It was all very condescending and disheartening.
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.