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.
Might be some VERY mild neuropathy over the last couple of days, but nothing really worth commenting on.
Haven’t worn the braces since day 32, have been taking it relatively easy.
Not walking perfectly, but not really super hobbling, either.
Subtle tinnitus in the left year yesterday (I wasn’t sure?) that’ss more obvious today, but not the end of the world. Very light mosquito buzz.
The “Scoop” came in today, I did a couple minutes of exercise on it.
My left ankle (peroneal tendon) was a bit flared up before starting, was not doing so well with it.
The “Deep Cold on the inside of my left elbow” feeling came back shortly after working out, I have no idea if that’s related?
Fuck. I thought the neuropathy shit was over.
Also had the cold water feeling on the left foot, shortly thereafter.
At writing, the elbow neuropathy has lasted more than an hour.
I am feeling really hopeless at this point. Going almost 2 weeks with no (?) Neuropathy (VERY slight neuropathy, at worst) really had me thinking that maybe I dodged the bullet, that this wouldn’t be long term, and that it was going to be getting better.
It starting up again over 2 minutes of extremely low impact activity is incredibly discouraging.
Nothing big to report.
The past few days have seen probably no neuropathy, aside from maybe a very mild sensation a couple of times - not sure if I was imagining it.
I’ve been taking it easy since the re-emergence of neuropathy on day 35.
It only lasted that evening.
The weird thing is, that night was the first night I got 8 hours of sleep in a LONG time. I slept 8 hours the following night, as well, and have been averaging about 7 ever since.
My biggest complaint at the moment is that my left ankle has felt locked since yesterday, and it is worse today, than it was yesterday.
It just doesn’t want to bend at all. Aside from that, the two toes closest to my left big toe still feel half dead and sluggish - they don’t move in time with the rest of the toes on that foot, and are lacking a bit of sensation.
Also, I am still unable to raise up on the ball of that foot by itself, but can go up on both balls of the feet - a little - if done together.
I’ve had to stop taking my BCAAs due to having surgery on the horizon, and my muscles have been aching - I’ve only been off them for 2 days, so I shouldn’t be in pain by now. I hope this isn’t going symptomatic for fibro, as many floxxies end up.
Things have been going pretty well, today has been the first day I’ve been able to walk a bit, with mostly no limp.
Went for a walk to a park a block or two away, and back.
Was limping again by the time we got back, but it was good before that.
Have had tinnitis for a few weeks, fairly mild - I think I forgot to mention that, as I’ve been way more focused on mobility.
The shoulder has also been slowly coming along.
It’s functional, but really sore and feels like lifting something too heavy would rip it right off.
Walking without a limp today!
I have a fair amount of mobility in my foot when my weight is on it, but I can’t raise up on the ball of the foot at ALL.
It’s not a pain issue, it just feels like the mechaniacs... aren’t there? If that makes sense.
No fallout from yesterday’s walk.
I did try the Scoop again today, but wasn’t able to - had a shooting pain in the outside of my left ankle immediately.
It’s the same pain I had earlier when testing range of motion, when turning my foot outward. I stopped immediately.
No fallout from the pain incident last night.
The tinnitis is doing ok.
One thing I want to mention is that my heart rate has been quite high ever since the Cipro.
I had a few days in the middle where it almost went normal for most of the day.
I’m wondering if it’s a Magnesium issue. I’ve ordered a different kind of Magnesium, as they stuff I had (Magnesium Oxide) is supposed to be the worst.
Treating myself for possible lack of electrolytes (I’ve been really good about drinking a lot of water lately) yielded no results on the heart rate, which is up in the mid-high 90s for the most part, now.
High 70s-80 is my norm.
I was on my feet for a fair amount today, no problems so far.
Also: Today I stretched for the first time since Cipro crippled me - went to touch my toes, was able to touch the ground.
Tried about 5 times, was able to get my entire fingers down, just not the palms. Pleasant surprise, after the better part of 2 months!
Did 15 minutes of the Scoop at lunchtime, and tried for another 15 around 5 pm, but only made it to about 6.
Everything mostly held up well the first time, my legs were a little wobbly afterwards tho.
The second time really felt like the outside of my left ankle was just not going to hold up, so I quit early.
Heart rate is still a little high, but seems to be coming down slowly.
First day of switching over to Magnesium citrate.
It’s supposed to be a lot better than magnesium oxide, just hoping it doesn’t give me the shits.
Anyway, woke up with a lot of pain in my left arch - inside of the foot, and kind of up - not actually under the foot.
Felt like a really bad cramp when I woke up, but it’s persisted all day. The “marble” feeling is far less noticable today, though.
I MAY have had some neuropathy on the top of my right foot for a few seconds this evening - felt hot.
Overall, stairs have been a lot easier lately. Walking up the indoor stairs, I can do one foot per step.
Walking down the same stairs is USUALLY one foot per step, but today it was both feet on each step, this morning.
The outdoor steps still need both feet on each step.
Still, I’ve come a long way from the early days of CRAWLING up, and having a difficult time with that!
The “Marble in the ball of my foot” feeling was gone today, but my two middle toes were pulled back and it was difficult to walk today.
Pain extended up from the arch alone, to be along the top of my foot, near the inside.
Shoulder was also bad - not sure if this is random, or because of the change in magnesium yesterday?
It’s acting the same as things went after the ibuprofen, so now I’m second guessing whether that was random also, or if it really was the ibuprofen.
Basically the same as yesterday, but now with a slightly higher heart rate.
I had a lot of pain in my left leg and hips.
The left leg: My calf was seized up, the knee felt like it was out of place, with the lower leg knocked out to the outside of the leg a bit (???), my hamstring was super tight, and my quad was unhappy.
Had to crawl up the stairs tonight 🙁
Pain in my foot woke me up at 4:30.
Have been waking up at 4:30 the last few mornings - guessing it’s a flare thing?
Unbelievable amount of pain today, almost completely unable to walk.
Had to use the boot to get to my MRI, but even that was incredibly painful.
Had a high heart rate all day - by feel - measured around 3pm and it was 110. I was just chilling on the couch.
It came down to mostly under 100 within an hour.
Not sure if from the flare up or from the stress this morning - I haven’t felt stressed since about 10am though, so even if it was the stress, it should have come down by now.
I hate this.
My heart rate was SO good before floxing.
One thing to note: It’s only the heart rate - blood pressure has been consistently normal. (Both for me, and in general). Right now it’s 131/87, which is the highest I’ve seen it through this. Usually it’s 117/73 - 120/80
6pm tonight I took my first dose of CoQ10, really hoping this helps the heart rate.
Really concerned at the colour of my left foot - it was pretty reddish/purple tonight.
It’s done this before - since being floxxed - and eventually came back to normal, though.
Took a cyclobenzaprine last night, it didn’t help.
Only got 5.5 hours of sleep last night.
Woke up with a ton of inner foot pain - at least as much as yesterday - but I can move my toes a little bit this morning.
Got incredibly sick today. Had horrible diarrhea all day, then horrible gut cramping and nausea in the evening right before bed, and for an hour or so after going to bed.
Not sure if it’s the CoQ10 (took my second dose today), or bad sushi yesterday?
Little bit of improvement.
The arch is still really awful, but the marble feeling hasn’t been present, and I can move my toes a lot more than I could the past few days since this flare up started.
My left foot isn’t as red/purple and the swelling has come down a bit.
I was able to hobble out to the back yard today and spend some time planting herbs - first activity I’ve been able to do in days.
Still had the runs all day (Magnesium Citrate?), but the cramps and nausea didn’t return.
My heart rate was a little better today - slightly lower averages, and the swinging up and down hasn’t been over as wild of a range.
Porter started a new technique on rubbing the top of my foot by the toes, this morning and evening.
It felt bad/good, like it’s probably necessary. Hope it’ll help!
Heart rate is a little better this morning, and I got about 7.5 hours of sleep last night!
First heart reading (over about 2 minutes) was 81-87. For the most part it stayed 83-84, only hit 87 once, for about a second.
That’s a better range, and a tighter range, than it has been in a while, but it only happened in the morning, got worse through the day.
Arch still hurts a lot, but I can still move my toes pretty well (not as well as right foot) and can’t even feel the “marble” when I press on the bottom of my foot.
Still can’t put weight on the front of my foot very well, but mostly because of that inside/arch issue.
With the boot, I was able to take a short 5 minute walk at Bayfront park today.
The only real issue was pain across the front of my ankle, right at the joint. It may have been from where the middle boot strap was located?
Porter did the painful rub on my foot twice today, morning and before bed. It’s SUPER painful, but seems to be helping.
Got 7 hours of sleep last night.
Increased progress on my foot.
Went for a short walk at Gage park today. I felt like it was going to be fine, but we walked on uneven ground and the tilting from side to side REALLY set my foot off and I had to stop.
Heart rate seemed to be slightly better today.
Got the good news from the cancer doctor today, wondering if it’ll positively affect heart rate and sleep, going forward.
I’ve been calm this whole time, no anxiety, but I have to wonder if it’s affecting me below the surface, somehow? Porter did the rub twice today, still seems to be helping.
Only got 5.5 hours of sleep last night, not sure if I can blame the floxing - the cats woke Porter up, he woke me up, I was unable to get back to sleep.
Tried to get my shoe on this morning to go out, as the foot was feeling pretty good.
Thought I’d be able to skip using a boot outside, but NOPE - runners were a terrible idea.
Searing pain immediately - all across the top of my foot, felt smashed, not like the tendon issue - had to wear slippers instead, and walk with a cane.
Today my heart rate took a nosedive for some reason - was 96ish this morning, but by late morning it was in the low 70s, dropped to high 60s when I laid down on the couch.
I put the monitor back on, and it’s been an average of 84 all day, getting up to 99 twice - when I was doing chores.
It’s been as low as 73 for a half hour average twice, with 2 hours worth of average in the early evening (it’s almost 7pm, as I write this) in the 70s.
It was still averaging high 80s-mid.high 90s yesterday, so that’s a bizarre drop off.
I took a Tylenol 3 for severe back and period pain just after lunch (first time in 20 years), and I had a shot of maple cream liqueur at about 6pm tonight (first alcohol in about a year). I”m curious to see if it will prompt a bad reaction of some kind, as many who have been floxed have noted.
45 minutes later, I have had some very mild POTENTIAL neuropathy in the toes of my left foot - feels dipped in cold water.
Overall I was pretty active and on my feet today, did a lot of chores in the kitchen.
There was little to no arch pain this morning, and it’s gone now in the evening - might be from the painkiller, though.
Bought a Wobble Mat to start working on balance issues. It’s SURPRISINGLY difficult.
Tonight, we looked up how to actually do massage for achille’s tendonitis, as my right achilles has been acting weird the past few days - loudly popping, stiffness, etc.
Heart rate was really shit today - 90s from noon onward.
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:
...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.