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.
Sitting here recovering from my morning workout (started using weights today!), Looking for the next piece of equipment I'm going to need...
... And the radio played both of my pattern dance songs, back to back.
I don't know if those will be the two songs I use when I finally get back to competing - they change the required dances each year - but still, it kinda felt like encouragement!
... And I kind of need it.
I knew the cipro had affected my arms/shoulders as well, but that was always easier to work around, than the feet.
Well, today I learned that 5 lb weights are the most I can handle for anything upper body. I did 3x10 on everything, but damn, that's ... Bad.
Hopefully it won't take too long to work back up, because it wasn't hit as bad as the feet.
Still cautiously optimistic that I'm out of the woods for the active damage happening. I don't even limp, most days!
Well, this morning was my last physio appointment for the next couple/few months.
Not liking the Covid trend, so we're hunkering down and avoiding anything not 100% necessary.
So, he set me up with some info from home, did the electric acupuncture in the right leg, did the percussive wave therapy on the left heel, hooked me up to the ice machine for one last time, then passed me off to the massage therapist.
Spent an hour getting the shit beaten out of me while chatting about Nazis and plague rats with the massage therapist, who had FEELINGS to get out there, LOL.
Sounds like a lot of his industry is overrun with them, he's frustrated.
Then I picked up 3 months of allergy prescriptions for Porter, and popped into a health store to buy a pack of a fake milk we want to try... Before buying it online (only by the case).
We're pretty much set up for the gym and therapy stuff, will be going back to only deliveries and curbside for anything else we need... I think we're set.
Well, I’m a bit behind in updating.
Overall, things are pretty good.
I recently had a reassessment for physio, it sounds like EVERYTHING is good, except my ability to do a calf raise on the right foot.
I barely budged it off the floor - like you could probably slip a sheet of paper under it - but that was it, and THAT was an improvement.
Last Monday-ish (around the 5th?) I woke up with a lot of sharp heel pain on the left side.
It went away after a few minutes of walking on it, and hasn’t happened since.
I was worried about going symptomatic for plantar fasciitis - it’s something that never happened to me before - but the physiotherapist didn’t seem too worried.
Hrmm.. Well this I went skating for the first time in a month.
Rain, ankle stiffness, humidity ... things had gotten in the way of skating for several weeks.
It went well. I didn’t bother counting laps, but everything was strong and smooth from the get go.
No real foot pain, the ankles and hamstrings held up well. My lower back hurt, that was all.
My last period started 8/22. I’d had the bit of weirdness I described on 8/20 leading up to it, but during the actual period, there was no flare at all. I’m taking this as a good sign.
This past week was my last physio appointment for a while. I’m not liking the covid situation in Ontario, so we’re hunkering down for a bit.
Over the past 2 months, we’ve built up a hell of a home gym, and now I have everything I could possibly need to rehab and rebuild - and the physiotherapist agrees.
So, he wants me to call in a month or two and go in for a reassessment, and we’ll go from there.
My sleep has been getting better - I’ve been averaging 7 hours for the past week.
The heart rate hasn’t been so good - my resting heart rate has been on a steady climb for the past week.
I’d levelled out to 88 (still high for me, but at least acceptable) for a few days, but then it’s been speeding up by 1 bpm/day since. Today it’s saying 94.
The facial flushing has been pretty bad during that time, it could be connected.
I did have gluten in that time frame, which seems the most likely cause - it’s just not something that had ever happened before cipro/the vaccination. Really annoying.
I need to shame Michael Porter .
I mentioned that my cipro-fucked tendon in the front of my shoulder was really bad tonight, and that the delt exercises might not be a great idea.
So he said something about doing "Canadian exercises".
I was confused, so he clarified:
"Because you'll be sore-y"
Not a ton to report.
Started my period on 9/19, had a very minor flare a couple days earlier that cleared up as the period started.
The last few days - since 9/18, I’ve had a weird feeling in the pad of my right foot, in front of the two smallest toes.
It feels like I’m walking on a pebble, but there’s nothing there.
I DID have a pebble in my shoe that morning, at the farmer’s market. I was wearing my flip flops, so it was easy to kick it out after just a couple steps, so...?
Not sure if it’s related or not.
I don’t think it’s purely a weird neuropathy, because there was a bit of actual swelling.
It’s been gradually getting better, though.
Today, the second toe on my right foot is flared and raised, and the front of the top of that foot is slightly swollen - the veins disappeared.
Brains are weird.
As of last week, it's been 18 months since cipro destroyed all the tendons in both of my feet, I'm still learning how to walk up and down stairs properly.
A certain song comes in the radio, and I'm over here asking Porter if we're thinking a pairs skating program or solo for me.
Would it be weird to see if a city arena would let me in to just smell rink air for a few minutes?
I feel like it would do wonders for my mental health. (Starting a bullshit Cipro tendon flare again)
The last few days on my FB memories have had a lot about 2 years ago, when I was SO sick from being overmedicated on thyroid meds.
They had me on beta blockers to counteract what the thyroid meds were doing to my heart rate, and THOSE made me feel terrible from the side effects.
I was barely over all THAT shit, before Cipro fucked me up.
Now, I can't take NSAIDs, steroids, Glucosamine, and who knows what else, because they cause tendon flares from the cipro.
That might be for the rest of my life.
The vaccine caused a flare (minor though) both times.
I'm pretty sure I am a perfect storm of "this is how you make someone anti pharma".
... But I'm not an idiot.
You know what's awesome?
Waiting MONTHS for the surgical consult, after dealing with the fucking hernia for a YEAR, only to be told that they won't schedule it until I lose 100 lbs... And it'll be a year after THAT.
I am so sick of medical bullshit. I'm so sick of shit not working right in my body.
This was the ONE THING that seemed like a pretty easy fix, like I could take ONE pain away with what sounded like a pretty simple surgery, and it just got ripped away from me.
I had lost 60 lbs. Gained every last lb back since behing poisoned with Cipro.
.. and it is SO much more difficult to lose weight now, as a result
I'm really upset. In the parkade, bawling in my car.
If he asked me one more time if I wanted a referral to their bariatric clinic, I would have punched him right in the face.
How many times do I have to *VEHEMENTLY* say "no" for that to be respected??
This is such bullshit. I'm never going to have a functioning body again, at this rate.
Also- ALSO - he's going by BMI, which is EXTRA bullshit.
My baseline "this is what I would weigh with absolutely zero fat on me" is higher than what I'm "supposed" to weigh, per BMI.
When I was a scrawny kid with NO muscle, I weighed more than I was supposed to, and the Dr joked that my bones must be made of lead.
Then I put on a ton of muscle.
How the fuck am I supposed to get to his stupid BMI?
This is such unbelievable bullshit. BMI is bullshit.
I'm so sick of doctors and ALL the bullshit.
August 24, I shocked my physiotherapist with 30 calf raises.
A week or two ago, I beat that (at home) with 35.
Yesterday I did 40.
Today I did 55!
Not sure if it really counted because I had to stop 2 or 3 times to shake my calves out quickly, but still.
I never thought I'd see the day I'd be celebrating such a dumb "accomplishment", but here we are.
Update: just tried to do a 1 foot calf raise on the right side.
Previous record was "we can slip a piece of paper under the heel!", At the end of August. (And that was after months of physio).
Just got it sightly over an inch off the ground!
HOLY FUCKING SHIT.
I just leaned on the washroom counter to take a bit of weight off my foot, and tried one foot calf raises.
I GOT FULL HEIGHT ON EACH FOOT!!! *RIGHT* up on my toes!
.... That's the first time I've been able to do that!
Up until now, no matter how much weight I took off the right foot, I could barely budge the heel off the ground.
It felt like something just wasn't even connected.. Like something was supposed to be firing and just wasn't.
Was really starting to worry about permanent damage.
This? This means it's now *only* a strength issue.
Holy fucking shit!!! I might get back to normal at some point!!
Also, a big hallelujah for this meaning I won't need medical intervention for it.
The physiotherapist had mentioned a few months ago that if I'm not able to get that lifting, I'd have to make an appointment with the orthopedic surgeon to see what's up.
While he's perfectly nice, I'm not a fan of doctors at the moment and would really love to not have to do more testing.
I can deal with strength issues.
Started my period today. I’ve been in a minor flare - some aching on the sides of my ankles, the two small toes closest to the big toes - both sides - have been a bit swollen and raised.
No pain in the toes though, which is weird.
The period flare didn’t really develop into anything.
Painless swelling, raised toes. Sleep may have been affected a bit, but that’s it.
Today I mostly started low carb/ For the next week or two, I’ll be having an apple and peanut butter for breakfast, then low carbing the rest of the day.
Can’t miss out on mutsu season!
I’m a bit scared to lose weight, as there’s a possibility of stored cipro being released from fat cells and causing a flare.
I’m hoping weight loss will make recovery easier... and now skating is looking like an actual possibility again.
So, in a development that should probably surprise nobody at this point...
The hernia I have is a rare type that not even the private hernia center in Ontario will operate on (at all, not even about my weight.)
It's looking more and more like .. fuck...
Although moving home literally saved my life via: healthcare differences?
There's a really good chance I'm going to have to get the surgery done in Chicago.
I am really fucking sick of always being the rare case.
What absolute bullshit.
Had the flu shot today. Was ambushed into a checkup. The bit of regrowth on the toenail I lost to cipro is apparently fungal now.
The flu shot affected both of us. Porter got over it in a day or two, I’ve been feeling pretty gross for a few days now.
I walked like normal today, when wearing the yellow shoes.
I even went down the front steps like a normal person, no Frankenstein’s moneter!
That’s the first time in... I don’t even know how long.
In other news, my hernia hasn’t been bugging me as much since starting low carb. Nowhere near as much gas pain.
My heart rate has steadily been coming down in the last week, today I’m at a resting heart rate average of 85 - that’s the lowest it’s been since buying the fitbit in late July.
SO I tried ice skating tonight, first time since getting floxed. It... Didn't go so well.
I can only barely skate, have a hard time doing even small half circles of figure edges up the length of the rink, and didn't have the strength to even enter into one foot spins.
I could handle really ugly two foot spins, though. So much for my goal of back camels the first day back, LOL.
I didn't even know it was possible, but my skates totally felt like crappy Canadian Tire recreational boots.
I thought the stiffness would make up for foot weakness, but nope. It was WEIRD.
I could only handle about 2 minutes on, 5 minutes off for the session. The pain was pretty terrible - mostly in my left toe joint.
So it's looking like I have to learn to skate again. So much for thinking maybe I could compete in dance this year
No fallout from skating! I’m walking really normally today, no pain!
I started a flare today. I’m kind of concerned.
For one, it’s in my left foot. Until the covid shots, I thought the left foot was completely healed. So.. Disappointing.
Secondly, there were no obvious triggers. I haven’t started any new supplements, done anything dumb like take an NSAID, or anything else.
I did start back to morning cardio this week - 35 minutes this morning, 30 two days ago - but this doesn’t feel like overuse/workout.
It definitely feels like an actual flare. Also, exercise hasn’t caused a flare in me that I can remember.
Hopefully I’m wrong and it’s just from the exercise.
Going to have to skip skating tonight... that sucks!
NOPE it’s definitely a flare - the pain woke me up.
The whole top of my left foot is awful, I can barely put any weight on it at all, and can’t put my running shoe on that foot.
Weirdly, there’s no swelling or discolouration.
I feel like my body is gaslighting me. I have no idea how I can have SO much pain, and have it not be visible at all.
The pain in my left foot is so bad, I spent the day on the couch, icing and light therapy all day.
It’s on the top of the foot, close to the inside of the foot. Not sure if it’s referred pain from the arch, or what?
Putting on my arch support flip flops makes it a little easier to walk.
Without them, my foot/leg is rolling way to the outside of my foot when walking.
Trying to avoid that, as I don’t want to screw up my knee, hip, etc.
Woke up to the top/arch of my foot feeling fine, but the flare moved into the big toe joint, same foot.
While I’ve had no problem curling or flexing the toes on the foot until this morning, now I can curl them a bit, but barely flex at all - and flexing is horribly painful.
It doesn’t hurt much when I’m not walking or flexing the toes though, so I’ll take it. I was in constant pain yesterday.
The flare is slowly dying down. It’s still isolated to the big toe joint, hurts to flex... but I can flex it a bit more, and it’s not hurting aside from that.
Going to take it easy today, continue with red light and icing and hope for the best.
Still not sure about what caused this. I’m still a week away from my period, which is too early for a period flare AND this is far worse than period flares of late.
All I can think is that maybe the thing about stored cipro in fat cells releasing with weight loss has something to it.
I’ve been low carbbing for just over 2 weeks now.
As of this morning, I’ve lost 12 lbs. I’m guessing that falls under the “if you lose weight quickly, this can happen...”.
Not sure what that means, going forward.
I have to lose at least 100 lbs, relatively quickly.
I’m going to be going hard on the diet for the foreseeable future - I just got a diabetes dx last Monday (Nov 1)... and I’m anxious to nip this is the bud.
I just really hope that doesn’t mean constant tendon flares for the next year. AUGH.
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.