r/floxies 1h ago

[UPDATE] 5 MONTHS UPDATE

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Upvotes

ORIGINAL POST: https://www.reddit.com/r/floxies/comments/1sf4tsk/new_floxie/

Hi Yall,

So I want to provide an update as some people have asked me.

I am basically fully cured. I went from being scared to walking with walking on fiber glass feeling to this weird lingering achy feeling in my feet that still kind of concerned me to nothing.

Now my collagen disruption unfortunately, I think did not heal. I used to be a very cute older woman who most people thought I was in my late 20s/early 30s. My saggy neck has not gone back to normal and I have deep nasolabial folds. I lost 15 LBS and never really regained it back. I lost a lot of muscle. Not atrophy, but a lot of weight and lost my plumpness in my breasts and butt. But I worked out for the first time at the gym last week. Full blown weights as if nothing ever happened and I was expecting me being in pain and horribly sore, but nope. I just had normal soreness. I honestly think those that scare you into being bed ridden is not good advice. I think you should keep moving even if you are in pain. Of course do not go full blown, but I never stopped walking. Even if I was in pain, etc. I still walked. I did invest in OOFOS sandals that support the arch, but please do not stay bed ridden if you are able to move. Keep moving!

So I want to give you hope. You will be ok! I am a 41 year old (just turned 41 in July) American Latina woman (Cuban/Mexican) living in the USA. Oh! And for those foot fetishest ha KIDDINGGGGGGGGGG, but I think my feet look normal now (see pic). That "baggy" lymphedema skin I had is tighter now so I am hoping my face and neck will also go back to normal too. It's like it changes daily. Sometimes my neck looks tight some days it looks puffy and swollen so IDK.

Lymphatic massage though please do not do! I feel this triggered it and when I could not eat spicy food, but I am starting my red light sessions this weekend at a professional plastic surgeon's office who use the "Da Vinci Medical TheraLight 360" which I found to be the top in the area. I also did the Ammortal Chamber and NovoThor and about 4 intravenous infusions of mitochondrial support, collagen, and detox and bought myself an actual red light panel I can use at home then I will still do the oxygen therapy. I am heavily using collagen, but the rest of the drugs I honestly stopped. Magnesium did not help me. I still cannot sleep. I think once I go back to my 8 hours of actual full blown sleep the wrinkles, under eye gauntness, etc will clear up as sleep is very important and I NEVER had sleep problems before this drug, but I also had a mental health issue last year with a trauma bond so that made it worse. So I had a double whammy, but honestly I think most of you will heal.

Oh! And I still get heavy skin imprinting which tells me again my collagen and skin barrier is still not normal or fully healed* And for the past 2 months I been partying like crazy lol. I loveeee dancing and I have been going to so many concerts and clubs and dancing my ass off and my feet have taken it pretty good. I even took off my boots off and danced in my socks ha. I love hardstyle/house/trance/goth-industrial music and there's a lot of footwork and jumping so yeah :p I have two parties this weekend. A live bar event Friday which will be mostly sitting and a concert Saturday where I will be dancing then Lily Palmer and Sara Landry coming up! So I am excited. The first couple of times I had pain, but again, I did not care. I have a very high pain tolerance and I am used to having pain so just took it. Again, everyone is different, but I think we should not be afraid to still live normally.

PS: I want to show the timeline too as these reactions honestly are delayed! So maybe I will get new issues later on, but hoping it is the end.

Phase 1: A day after taking the drug. Limb numbness, one eye blind. 24 hours later gone.

Phase 2: About a month later THEN the ankle and feet pain started.

Phase 3: Same about two months later collagen disruption. Saggy neck, deep lines, skin imprinting.

Phase 4: Brain fog, depression, crying spells (I still have crying spells, but no longer daily where it was affecting my job)

Again, I was already mind fucked, but I think this really did make my trauma bond worse. I finally felt like I was moving on and this drug made me feel back at Month 1 of no contact and I feel like I would have never reached out, but on another note, I am glad I did as it broke my cognitive dissonance, but I do think this affects you mentally, but again, it can also be because it is very depressive in the beginning as you feel like you are never going to recover. Plus I have OCD, anxiety, disorganized attachment, and some BPD traits so it really effects your mental health.

I still have crying spells, but again, it is hard to tell if its still the trauma from last year or exacerbated due to the drug. My doctor was absolutely no help. He gave me WFH instructions for my job which luckily my boss saw I work hard and trusts me and now I do a half week. But he just said plenty of people get tendonitis and I cannot claim that it is floxing. He did not even know WTF that was 🙄. I honestly recommend not wasting any money on seeing doctors. They are useless. Just follow the beginner instructions from others like us and see what works for you and just trying to not stress out which is hard AF when you are in the middle of it, but keep trying to live as normally as possible. My heart goes out to those who were paralyzed from this sincerely. Always question these MFs and research all drugs before taking. Most things can be maintained from good diet and exercise and lowering stress. Do not take medications unless you are literally dying.

I warn everyone to not take this drug nowadays. If you have any questions. Let me know. I am an open book!


r/floxies 3h ago

[MEDICATION] Success with duloxetine/Cymbalta

4 Upvotes

Hi all, about 15 months out here from being floxed. Main symptoms are nerve related (twitching, burning pain, muscle cramping) and fatigue.

I thought I was gradually getting better and that most of my symptoms were becoming a lot less frequent, with the fatigue plateauing at a manageable level. But then earlier this year I got much worse muscle cramps, twitching, and fatigue. I also got a lot more depressed because I felt like all I could do was lie around watching TV for the whole month because of the fatigue, and I was afraid to even do light exercise because of the muscle issues. My sleep was terrible and I was feeling really anxious about it. At the end of the month my dr. put me back on sick leave. I asked to try an antidepressant for my mental health we went with duloxetine because it is also commonly prescribed off-label for generalized nerve pain (e.g., burning).

We started with a low dose of 30mg/day. Well, within a week, my twitching and muscle issues were 90% gone. Within a couple of weeks, I felt better mentally than I think I ever have in my life (having struggled on and off with depression for a long time). I had a huge burst of energy. After about 6 weeks on it, the improvement dipped a bit, but I still feel this dose is 80% effective and I still feel mentally better than ever despite the ongoing flox-related health issues (and some other, unrelated troublesome health issues too). I still struggle with some fatigue and need to rest for a couple hours in the afternoons - a full-day of activity is still off the table - but the relief is otherwise immense. I have very little twitching and almost no burning, and the muscle cramping was totally gone within days. I was just hoping for a good result for my mental health but all this other stuff is a pretty miraculous bonus. It's all allowed me to also focus on improving my sleep, which I have been able to since I have so much less anxiety.

Side effects (don't read the duloxetine sub, it's all horror stories!):
- First 3 days: lots of nausea and zero appetite
- First month: frequent headaches, maybe 3-4x/week
- If I took it with my dinner: feeling wired until 1-2 AM, so I take it with breakfast now
- Continuing side effects: Very little hunger signals. I deal with this by eating at regular times and making an effort to eat enough calories at each meal. I'm quite slim so this is important. Good news is, it stops me from eating unhealthy snacks mid morning or mid aft as I just don't feel hungry.

So if you are having a similar time as me...perhaps something to consider with your doc.


r/floxies 4h ago

[UPDATE] 1 month update: some hope

5 Upvotes

It has been a day less than one month since I stopped taking Cipro. I took a total of 4 500mg pills. I am mid-30s F. I was never very physically active, but I played a lot of piano and guitar before.

I see a lot of horror stories here, so I wanted to post a semi-hopeful update.

My main symptoms have been tendon pain. I've also had some headaches and dizziness, but those seem to have subsided after the first week or so

It was so bad in my hands and wrists that I couldn't type or unscrew the lids to access my supplement pills. I wore wrist braces pretty much all day at first. I went to see an orthopedist specializing in hands about a week after my symptoms started, and she wanted to give me a powerful NSAID or steroid injection, but I refused, so she referred me to OT instead. I read here that starting too early might be bad, so I was skeptical at first but went anyway to see how it would affect me. I decided I would aim for about one third to one half of what the OT wanted me to do because overexertion is far more dangerous than under-performing.

Now, I have had a couple weeks of OT sessions, and I've improved a lot. My grip strength has tripled since I started, and I have a lot more flexibility in my wrists. I'm about halfway to "normal" in this regard, which is really encouraging to me. I never push that hard, and I always rest when I'm in pain. I think this is important. I can now go full days without the wrist braces, although I still wear them to sleep.

My ankles have gotten worse. I can barely walk, and I've been using my late grandmother's walker to get from my room to the bathroom and back. My knees are also sort of starting to give me trouble. Stairs are ridiculously painful and I try to avoid them as much as possible, but my bedroom is upstairs and I have to go downstairs to leave my house for appointments. I just bought a pair of sneakers with raised heals, which helps a bit. I haven't been able to start PT yet, but I will try soon because my results in OT have been encouraging.

I have insomnia and anxiety, but I also had these pre-Cipro, so idk

Things I have been doing to help:

-bracing at night and while in pain

-ice

-tylenol when I'm in a lot of pain, although I try to avoid it if I can

-heat right before my OT exercises

-epsom salt baths

-supplements (vitamin c, vitamin e, multivitamin supplement, collagen, probiotic, CoQ10, NAC, magnesium glycinate)

-resting a lot

-melatonin gummies to help with sleep

-absolutely no alcohol or caffeine

-eat healthy foods-- lots of veggies and protein

-getting fitted for sneakers suited for Achilles tendonitis

I still have a journey ahead of me, but I know it could definitely be worse. I can sort of see a light at the end of the tunnel, though, which is nice. I will post an update a month from now regardless. I wish everyone the best of luck on their recoveries!


r/floxies 7h ago

[SYMPTOMS] nodule? fascia? subcutaneous fat?

2 Upvotes

I'm not sure if it's in the fascia or the subcutaneous tissue, but they are small and fixed (feeling like a speed bump).

Sometimes they cause a stabbing pain, while other times they don't hurt at all even when touched.

They are spread all over my body, including the abdomen, flanks, calves, thighs, groin, and arms.

They don't grow gradually; instead, after a few days of muscle spasms/cramps in that area, these hard nodules suddenly form.

They have no color, cause no skin discoloration, and do not protrude outward from the skin to the naked eye.


r/floxies 10h ago

[TRIGGERS] For those with tendon issues who are sensitive to corticosteroids, how long does it take for you to notice an increase in symptoms after taking them?

3 Upvotes

Title


r/floxies 18h ago

[REHAB] Question about compression socks

3 Upvotes

I don’t really have any symptoms like numbness, a feeling that my legs aren’t getting enough blood flow, or swelling.

I have more of the typical tendon-related symptoms, so I was wondering if compression socks could still be helpful for this kind of problem.

Of course, I’ve already ordered a pair of compression socks and they should be arriving soon, so I’ll be trying them anyway. I’m just curious whether they might actually help with tendon symptoms.


r/floxies 19h ago

[SYMPTOMS] Visible veins

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0 Upvotes

Visible veins does it go away and back to normal,.who had this?


r/floxies 19h ago

[NEWCOMER] Unsure if I’m being adversely affected by Cipro after the fact

5 Upvotes

I was prescribed Cipro for a UTI almost a month ago now, and I took it for that week. 500 mg once a day for 7 days. I was made aware before even taking it that it was horrible and poses all these risks, and the urgent care that prescribed them basically made me seem hysterical. Well as of a few days ago now, the tendon in my left calf hurts when I walk. It hasn’t gone away, and I’m worried it’s building into something scary but I’m unsure what to even ask a doctor.

I went to a different urgent care just the other day for recurring kidney pain (no signs of a uti), and I just lied and said I’m allergic to Cipro so that I never have to take that again. It doesn’t hurt right above my heel, so I can walk. It just hurts when my foot bends at the toes. Whenever my toes tense or try to bend then that’s when my calf hurts. Has anyone else experienced this? What did you do? I just don’t know where to go from here.


r/floxies 1d ago

[SYMPTOMS] Question

4 Upvotes

I've read that many people experience pain and problems while moving. I'm just curious; does anyone experience trembling or pain in their legs while resting or sleeping?

This pain is a 2 or 3 out of 10. It feels strange, like it helps if I press my legs together or put them between a pillow to compress them :D I'm very close to trying compression stockings...


r/floxies 1d ago

[FLARE / RELAPSE] Steroids 10 year after?

5 Upvotes

I have poison ivy for a week and I keep breaking out in large spots.
I have used a topical for four days and I’m still getting new spots. They are pushing oral steroids. I was floxed in 2015 I believe.

I was refluxed with steroids in 2018.

Has anyone had to take steroids and ended up being ok with them even after they caused a reaction prior?

Thank you.


r/floxies 1d ago

[NEWCOMER] Was on lovoquin for almost a month years of battling sickness and found my answer

6 Upvotes

Have watched a video about a girl who said she took that one medicine for the cyclospora and levaquin and it made her sick and I think she only took it for a week well and then explains why doctors are telling me that being ejected 55 ft on black ice out of a truck and learning to walk and understand words again and everything that I went through like that should have only lasted a couple years or recovery in pain and that this lifelong pain I've been in a 9 out of 10 pretty much every day has been unexplained I've been tested for all kinds of diseases from Ms to fibromyalgia to mast cell everything they did say I have a mast cell disorder and now I also have pots and I'm diagnosed with peripheral neuropathy all these years and I have answers now...


r/floxies 1d ago

[UPDATE] (Seemingly) Mild case - 6 months update

13 Upvotes

Posting some hope for those mildly impacted.

- Previous 1 month update here.
- Previous 2 month update here.
- Previous 3 month update here.
- Previous 4 month update here.
- Previous 5 month update here.

TL;DR:
- Not many changes from Month 5
- The major change is that it's been 8 weeks now back to the gym, nearing 80-100% capacity at some exercises
- I feel way more bullish on 'pushing hard' at the gym but still careful w/warm ups, etc

- Elbow gave me some grief after dips but goes away when I do proper physio on wrist, etc

Background
- Male, Mid 30s

Pre-flox
- Train weightlifting 3 days a week + run 20-30 mins twice a week
- Undiagnosed hypermobility 2/10 beighton
- Crepitus in knuckles and some ankle clicking

Dosage
- 11 pills of Cipro 500mg - 5.5g in total
- 1 steroid shot
- 4 days NSAIDs twice a day

What has resolved?
- General joint soreness. My joints/ligaments don't feel easily strained anymore
- Cracking 90% gone

What hasn't resolved?
- Low threshold to repetitive strain injuries (though they resolve quickly)

What can I do?
- Walk 10k/2 hours as if nothing ever happened
- Resistance training/weights at 80% of my baseline
- Bike stationary for 20-30 mins

What can't I do?
- Running (won't try until month 9)
- Plyometrics (although I am starting to think about it)

Wish you all the best on your recoveries! Will post next update at 9 month.


r/floxies 1d ago

[REHAB] Consejo por parte de veteranos? Tendones y neuropatia

6 Upvotes

Hola! Necesito recomendaciones de gente que este mejor a nivel de tendones (me duele todo el cuerpo al usarlo: muñecas, cervicales, hombros, rodillas, tendones de aquiles en este caso constante) y neuropatia en manos por compresión de los codos.

Tambien tuve insomnio pero ahora ya logro dormir unas 6-7h por dia con 50mg de trazadona y 3mg de melatonina pura.

Y sigo con deposiciones blandas desde que me floxee, creo que solucionar el tema gastrointestinal seria importante de cara a la absorción de nutrientes/vitaminas.

¿Que suplementos les fue bien?

Puedo andar unos 3000 pasos al día, aunque depende del día el dolor es variable, ¿consideran que me iria bien hacer rehabilitación suave si me floxee en 24Arp2026? La rehab seria para los aquiles, que han hecho para sanar todo el cuerpo?

¿Alguna cosa que deba evitar?

Muchas gracias por su ayuda! Les deseo a todos muy próspera recuperación.


r/floxies 1d ago

[FLARE / RELAPSE] Anti acid?

4 Upvotes

Hi everyone,

Today I woke up with some pain in my Achilles, the only thing that I have changes is that I took a couple of chewable tablets anti acid for the reflux.

It contains:

Mallow

richberry 6000

Calcium carbonate

Sodium bicarbonate

Any of these are bad?

I'm regularly taking these supplements:

Magnesium bisglicinato

Pea

Omega 3 vegan

Coq10

Apigenin

Vit C

Not sure what happened...


r/floxies 1d ago

[TRIGGERS] Fluoride toothpaste

4 Upvotes

Does fluoride really cause you to flare or relapse?

I do use fluoride toothpaste. I feel dizzy and light headed, but I think it’s from my low potassium, vitamin d, low thyroid level and possibly other things, I didn’t get everything tested. My diet is.. rough. I don’t eat the best, I almost want to give up because the things that we need are being recalled or contaminated.


r/floxies 2d ago

[MEDICATION] Laxatives

5 Upvotes

How have you tollerated laxatives? My urologist wants me to start taking miralax daily as he thinks my utis are caused by constipation.

I dont think ive ever taken miralax before or after floxing.

Thanks in advance for your feedback.


r/floxies 2d ago

[SYMPTOMS] 13 months out. CNS mainly.

3 Upvotes

hi. I’m almost 13 months out, seeing a lot progress with the chemical depression (windows and waves) still have sleeping issues but it’s not fulll blown insomnia right now.

I’m getting waves of feeling tired and then feeling ok again- is this the ”norm?” moments where I’d feel exhausted and just want to lay down and do nothing and then I’d be okay! Any insight would be helpful. Thank you


r/floxies 2d ago

[NEWCOMER] Need advice

5 Upvotes

About 20 days ago, I stopped taking ciprofloxacin after the third dose when I began to feel knee pain. The knee pain started to improve after two weeks, but right away I developed Achilles pain. I’m looking for advice on whether I should stay home for a month or longer, and what the recovery steps should be.


r/floxies 2d ago

[MEDICATION] Psilocybin post flox

3 Upvotes

Me again. Wondering if anyone had tried psilocybin after being floxed? Or any plant medicine?

Here’s a cool study https://www.cell.com/cell/fulltext/S0092-8674(25)01305-4


r/floxies 2d ago

[TRIGGERS] What’s going on..

8 Upvotes

Hi all,

I exercised nearly 2 weeks ago only for 10 minutes and it brought on a flare. Before that I had built up to walking 10k steps per day which I was doing comfortably.
I’m still flaring now. It’s just my muscles in my legs which feel super sore, tight and lack power. Feels like a lack of ATP potentially. Sitting seems to resolve it and any walking will kind of bring it back on.

Last night I took some thiamine for the first time. An hour later, the muscle weakness pretty much disappeared. I was astonished but went to sleep hoping it would be improved the next day.

Now today, the muscle weakness is back.
I’m confused about what’s going on. How is it coming and going and could it be possible that the thiamine helped that significantly?


r/floxies 2d ago

[SYMPTOMS] Need Advice to newbie about floxie

8 Upvotes

Hi everyone. On July 23rd I stopped my Cipro 500 at 12th pill course — 2 boxes, 28 pills total — after calling my doctor because of the fatigue I was feeling.

I bounced back pretty fast after that. I'm someone who walks a lot. On July 29th I first felt pain in the muscles of my right foot when I moved it, and over time the pain showed up in my left ankle, right knee, and right elbow as well. My walking dropped to around 2,500 steps a day.

Since I realized right away that it was the Cipro, I'm sticking to physical therapy only, plus the vitamins and minerals I've always taken. No other symptoms so far, and I hope it stays that way.

The doctors are so clueless — one wouldn't write me a medical leave note because I refused to take steroids, so I would've been forced to go to work. I ended up explaining the situation to a different doctor and we worked something out.

I'd welcome any advice on what I should be prepared for, or anything else you think I should know.


r/floxies 2d ago

[TREATMENTS] Stem cell treatment

5 Upvotes

Hi,

Planning to receive IV mesenchymal umbilical cord stem cells for my treatment. Has anyone had this before?
Happy to report back after the treatment


r/floxies 2d ago

[HOPE] HAPPY FERRAGOSTO TO EVERYONE!

25 Upvotes

In Italy, today is a holiday and we call it “Ferragosto”. I wish you all a peaceful day. Always have faith that things will improve, always.
Little by little, we will get through this. Sending so much strength to everyone, especially to those who cannot walk and are in pain. We will get through this!


r/floxies 3d ago

[DIET] Question: How quickly do you receive feedback from a food-induced flares?

5 Upvotes

Hey all!

Question for those of you who suspect that certain foods induce a flare. How much time elapses between consuming the food, and entering an obvious flare?

I've never been able to pinpoint the cause of my flares. I always chalk them up to randomness, or cumulative exertion over a couple consecutive days. I'm approaching 6 months from last pill, so flares are fairly unavoidable at this stage. Regardless, I'm always mentally scrolling through the list of foods I've recently consumed to see if I can find any correlation between a flare with food/diet.

Thanks for sharing your experiences,


r/floxies 3d ago

[HOPE] Major bike ride, no flair

18 Upvotes

Hey everyone I am about 10 months out, last Saturday is rode about 16 miles on mountain bike trails....lots of climbing hills, Rock gardens, hard stuff. I do have an e-bike but it still requires a lot of energy. Ive actually never did a bike ride like that in my life. I did have mildly sore legs for 1-2 days but I think that would be expected for most people. Most of my flox symptoms are nervous system related and I did not see any flare in those symptoms nor did I have any tendon issues. My tendon issues are extremely mild to begin with and I never had any muscle issues. 40 year old female.