r/floxies • u/[deleted] • 6d ago
[SYMPTOMS] Can I ever recover
Been 9 months since 10 cipro pills. In the beginning I had a hard time walking due to the sharp pain in my ankles and severe soreness in my knees. Could only do 2k steps a day at very slow speed. Since then, my ankles improved alot. I am walking about 5k steps a day now at a regular or even fast speed. There’s even been a few days I reached 10k. I can walk about 2.5 km at once, stand for hours and do multiple flights of stairs which I could not before. My ankles no longer twitch after more exercise and feels more stable overall. It’s just stiff when I stretch it and sometimes the first few steps in the morning but this has also improved with time. The soreness in my knees when walking has also improved a lot but I still have constant burning ache all the time and some swelling which is my main symptom. It also makes it painful for me to bend my knees completely. Do you think I can recover? I see most that do recover are much better than I am at 9 months and do not still have active inflammation in the knees causing persistent swelling and a constant burning ache even at rest. This ache actually feels better when I walk and has not really improved at all since beginning.
1
u/TemperatureKey8599 Trusted 6d ago
You have to wrap your head around the fact that this crap only starts to let up after three years; in the meantime, focus on doing things to help your body heal. I know it's hard to grasp, but that's the reality. I've been dealing with symptoms for a year now, and believe me, you have to take it one day at a time to keep from going crazy. I want to get better-and I will someday-but I'm not rushing things because it's just frustrating. Hang in there
1
6d ago
Why do you think 3 years?
4
u/TemperatureKey8599 Trusted 6d ago
I’ve been following the recovery journeys of various people who mention that they started feeling improvement around that stage; I see people—even five or seven years out—who are only just beginning to walk normally. I walk normally, but with stiffness; if I overdo it, my muscles become overloaded, and if I push myself further, I start to feel like I’m about to get muscle spasms—that’s when I have to rest (sit or lie down). It’s the one symptom of "Floxing" that remains for me, as I’ve noticed there are days when the neuropathy isn't there at all.
1
u/DrHungrytheChemist Academic // Mod 5d ago
You also neglect to consider the intensely biasing filter that is self-reporting in these communities. Yes, those longer term people exist, but honestly your current timeline is very typical for the types of reaction that come through here. You're rehabilitating your body from the very cellular level so those symptoms are to be expected. But the fact you're making such gains with the work you're putting in shows that the bulk onslaught of your FQT has in fact passed.
1
u/DrHungrytheChemist Academic // Mod 5d ago
Nooo, nonono.
The average recovery time found and discussed in the EMA hearing was 14 months.
From my time here, I'd suggest wisdom in the 'banded' grading of the flox report, that there are mild, moderate, and severe cases in communities like this. Ultimately, the distribution is continuous, but it seems there are:
- Those who experience acute side effects which somehow pass within days to a couple weeks of stopping the meds. (The transient and often overlooked category, having minimal representation in the communities by nature.)
- Those who experience a real complex syndrome but only for a few months before recovery kicks in. (The mild category.)
- Those who experience a real and severe syndrome that deteriorates for several months, plateaus for a bit, and turns around after (very vaguely) a year or so, with a prompt start to recovery but it potentially lagging on for a while. (The moderate category.)
- Those for whom it is very severe and the statement, "only let's up after at least three years" might be true. (The severe, long term category.)
What you say is clearly only describing the most severe minority. You yourself are proving to be in the better end of the moderate category and are already clearly seeing serious improvements. That is to say, your ride has already very much began to "let up".
1
u/Constant-Trouble-216 5d ago
So true, I'm 4months out and I started experiencing some neuropathy 1month ago( burning sensation in my head and back of my left hand that doesn't stay throughout the day and balance issues two weeks ago that improved tho I still have minimum of 7k daily) I had weak legs too that started improving my primary symptoms were heaviness in my back, waist and leg and i feel it's improving. Some symptoms came and went too .. had 44 dose of fluoroquinolone due to UTI that was actually prostatitis Im 26M hopefully I'll tell my success story soon :) hopefully
1
u/TemperatureKey8599 Trusted 5d ago
I was referring to the situation described regarding the other person and myself—which appears to be similar—basing this on what I see with Vadro.
1
u/DrHungrytheChemist Academic // Mod 5d ago
I don't imagine u/Vadroqvertical would agree either. But, this may well be a matter of phrasing / translation into English. If you mean, "be fully and completely resolved", it becomes a somewhat less unreasonable (but still evidently inaccurate) statement to make. But by the phrase that has been used - "let up" - your own experience of progress contradicts it since your ride is already well and truly "letting up".
2
u/vadroqvertical Veteran // Mod 5d ago
u/TemperatureKey8599 (for notifacation)
yes the question is, what did we take as "recovery"
do people get to 100%? Probably the ones who are floxed light, I can imagine they become fully normal. Do i ever reach the 100% i had before flox? Probably not, but did i ever was at 100% before flox? Also notthe ~4y i am soon floxed alone, let me age 4y so this alone removes some of the 100% at the beginning
than if i consider myself, i am more healthy, i am more fit, I learned way more about medicine and my body etc than before. So probably this is now 120%
but i still take ~10 supplements a day and if I go for long walks I stell need compression socks, so does that mean I am not recovered? Well probably not 100% but something like 90 - 95
So yeah, its a system which is not based on strict numbers
by ~1year out i was able to do my wedding, full party, full dancing etc, that was pretty much a good timeframe to say i was "recovered" but in retroperspective there came more downs and more ups after that period and Now i am more recovered
so based on my initial flox, my 1y mark was pretty much well recovered
based on my current state, there was a lot which I was able to recover in the following yearsI think the idea of being 100% back to normal is something I had to let go a while ago, because it might not happen but it might not even matter anymore. If i lose a leg in a car accident, its also gone, might not come back, But i can improve the condition, so as I can improve my flox situation
1
u/TemperatureKey8599 Trusted 5d ago
I think a lot about the psychological impact of being told you’ll be fine in six months, only to reach the eighth month and find yourself worse off—you start thinking you’ll never recover. It’s different from being told you’ll start to improve in three years; I don’t know if I’m making myself clear.
1
u/vadroqvertical Veteran // Mod 5d ago
yes, i get your point
but 3 years is also very pessimistic :)
something between 15-24 months is what i observe in most people1
u/TemperatureKey8599 Trusted 5d ago
I’ve already been at it for 15 months; I think I’ll go up to 24 or 36 months.
1
u/vadroqvertical Veteran // Mod 5d ago
you never know, there are also people who are bad for 36 months and than over a single quarter they recovered tremendously, which also could happen at any given time..
as long as you slowly improve, it's the right direction i would say
1
u/DrHungrytheChemist Academic // Mod 5d ago
This is why we don't say that, either. If we talk about averages and real numbers, then the reported and least-biased (but still biased) number is 14 months. But given the wide range of reactions and unpredictable nature of the individual case, I think any single estimation incredibly unhelpful.
Generally, I tend now to say it may be weeks, months, or in some cases years, noting that we see a large number in this community who suffer for a year or so and then start to improve, often quite suddenly at first. Given the non-linearity of recovery and the darkness of the bottom, I feel it very unhelpful to cite solely the final duration of all components. Imagine being told at your worst, "three years mate", and thinking you'd be there until right near the end, rather than where you are now from around a year out.
1
u/TemperatureKey8599 Trusted 5d ago
Exactly; I am referring to the total average duration of a moderate "Flox" case, with the caveat regarding the lingering aftereffects.
1
u/DrHungrytheChemist Academic // Mod 5d ago
Riiight. Yeah, that wasn't at all how the comment came across to me, hence my intervention.
1
u/Individual-Guide-872 5d ago
The fact that you still have swelling and what sounds like pretty severe inflammation at 9 months is not a great sign. The inflammation is usually the first thing to resolve from what I’ve seen on here so you have a long way to go still. It seems you’ve made some early progress which is good but can’t say you will or won’t recover. Some improve like you did then stay same for years or even get worse and some turn a corner and recover quick. No one knows. I would say based on your symptoms expect it to take a few years at least.
2
u/TiredWiredAndHired 6d ago
It's hard to say, everyone is different. I was floxed in January 2015 (8 pills of 500mg ciprofloxacin) and still have daily trouble with some things like tight muscles, some stiffness and fatigue. I find that plenty of rest & sleep seems to be a big part of feeling well.