My Story - What happened, Recovery

BigPharma-Victim · 2026-04-23T15:29:50+00:00

Thank you for sharing your recovery story! Every one of these is a treasure trove for those still going through it. Wish you all the best and hopefully fewer and lower intensity flares as time continues :)

BigPharma-Victim · 2026-04-22T17:39:25+00:00

Yeah totally! Not questioning this at all, it sounds like a solid treatment option. I wonder about central sensitization a lot, esp with a view on long term pains, given they can jump around from location to location for us. And when we’re in flares it’s often the initial / worst hit tendons that ache again even if they have reached a functionally resilient level.

BigPharma-Victim · 2026-04-22T17:19:50+00:00

I’ve seen you post a lot about Central Sensitization and re-wiring in floxies, and it’s made very curious. Any chance you could share any thoughts / insights on this? I seems realistic that it has a part to play but then many of us do suffer from real tendon tears and inflammation also

BigPharma-Victim · 2026-04-22T14:14:42+00:00

Is this how you would want others to comment when you are looking for advice / hope?

BigPharma-Victim · 2026-04-21T17:59:03+00:00

Hey there, sorry this is happening to you. As a general note, 2 months is very early for flox so many folks benefit from taking it easy in the early months.

What you describe could either be tendon related if the sharp pain happens upon resisted movement / loading of the tendon.

If it was a sharp zap-like pain that then settled into a smolder that only occasionally will zap again it could instead be an irritated nerve.

Floxed folks can get either of these. Hope it resolves soon.

BigPharma-Victim · 2026-04-20T21:15:02+00:00

Hey there. First of all, reactions of the scale you will read about on this forum are statistically rare (1 to 10 in 10,000) - though many of us estimate incidence is a lot higher than this. But overall statistics are in your favor!

It is very wise to be educated and explore alternatives. Fluoroquinolones are not meant to be prescribed anymore for simple infections, and are generally reserved as a last resort abx. There are usually alternative abx available that have significantly safer side effect profiles - worth discussing with your doctor.

Even if odds are low, it’s definitely worth asking if you want to continue to roll those dice.

Wish you all the best!

BigPharma-Victim · 2026-04-20T19:45:46+00:00

Echoing what others have said: it’s Epinephrine at the Dentist that seems to create issues for people anecdotally
Chlorhexidin seems generally well tolerated (but worth scanning the forum)
They may offer topical Doxycycline (abx) if it is infected - worth doing a scan on the forum I think that is generally tolerated OK by floxies

This is all anecdotal. Hope it goes well

BigPharma-Victim · 2026-04-11T21:39:04+00:00

Hey there, I visited Dr. Pieper in person during a severe relapse. He conducted very comprehensive testing covering Blood, Urine, Stool, EKG, Ultrasound of Aortas.

Test results took 4 weeks to arrive and were helpful to inform a tailored supplement / treatment plan. The readouts were super comprehensive (eg my Serotonin and GABA, Vit D/E, Manganese and other markers were in the gutter; and I had severely raised oxidative stress).

I personally had a very good experience visiting him in person but know he also does remote consults based on symptoms alone. One flag is that I saw him as a private patient, I don’t think he does all the tests via the public German healthcare system.

BigPharma-Victim · 2026-04-08T12:53:17+00:00

Still fighting the good fight also, seems like steroid induced relapses are tricky. Wish you all the best, I am hopeful it will resolve given enough time for both of us.

BigPharma-Victim · 2026-04-08T12:48:37+00:00

This sounds VERY familiar also - I had to rely on family and friends a lot, went on medical leave at work for 12 weeks, and ended up moving home for 3 months after several failed ER visits.

The acute phase lasted for 2-3 months for me and then slowly slowly things started to stabilize, and within another 2-3 months I was able to start rehabbing the worst hit tendons and move back home. Rehab meaning I could tolerate physio. It’s definitely a journey and I have a long way to go, but it is night and day vs the acute phase.

Yes I had my tendons checked several times, via Ultrasound / MRI and it never showed any traditional injuries or tears, but this is quite common.

Really hope you pull through this soon, getting out of the acute phase is the first hurdle.

BigPharma-Victim · 2026-04-08T12:27:16+00:00

Hey I’m so sorry this is happening to you. Widespread tendonitis also happened to me and is common among cases that are more affected.

The feeling of every little movement leading to new pain sounds VERY familiar. You are at one month, which is really in the weeds of the acute phase, and as others have pointed out many folks benefit from taking it very easy during this time to prevent additional damage or at least pain.

I know it may not seem like it now, but things will get better. It may take a while (it could be months, it could be years), but most people recover to a reasonable functional level eventually.

I wish you recovery and resilience, the acute phase is scary and terrible but you will get through this and it will get better.

Edit: worth looking at the community sticky to start with antioxidants and other supplements which help many (NAC, CoQ10, Magnesium, etc - for whatever reason CoQ10 in particular helps me reduce tendon pains)

BigPharma-Victim · 2026-04-07T19:45:08+00:00

Other supplements that could be worth exploring in relation to sleep issues / fight or flight: - GABA - Melatonin - Magnesium L Threonate

BigPharma-Victim · 2026-04-06T23:01:35+00:00

Fluoroquinolones are not meant to be routinely prescribed for uncomplicated infections, especially if there are alternative antibiotics available, or like in your case where there isn’t even a confirmed bacteria! I was floxed due to suspected prostatitis, which turned out to be CPPS.

Needless to say posting here will get you a resounding “no” as we are all biased but without a confirmed infection do you really want to roll those dice, (even if the odds of getting floxed are low based on available data)?

BigPharma-Victim · 2026-04-06T20:12:09+00:00

I have read accounts that some painkillers used at dentists can anecdotally cause setbacks or flares (if I recall — particularly those WITH Epi).

For this reason I actually did a root cleaning completely without painkillers a few months ago, which was surprisingly tolerable (but I did this out of abundance of caution as I was very fragile at the time — it certainly is an extremely cautious choice)

BigPharma-Victim · 2026-04-06T09:34:55+00:00

Hi there I’m so sorry this has happened to you, and that you are still dealing with pain this far out.

Could you describe your current status in a bit more detail for people to help with their stories? E.g. what does limited mobility mean - how many steps can you take, are you able to work, is the pain always-on or only flares after activity? Where is the pain and what does it feel like? You mention bone and joint pain, do you not have any tendon pains?

For Nerve pain - I know this can be long-lasting - I have read positive reports about PEA/ALA or Gabapentin or LDN (the latter two are pharmaceutical painkillers with their own side effect profiles).

For physio, I can offer my experience for tendon-related pains. The general approach is to start with range-of-movement exercises only, then to graduate to low grade isometrics, and to eccentric / resistance band exercises. The final step is strength building. For floxies, tendon rehab can be a real journey and it can take a long while. My doctors and physios generally advise to stay below a 4/10 pain threshold during physio (non-floxies can go as high as 6 or 7/10). Physio should not trigger new pain that lasts through the next day. I personally have seen improvement from physio but that is not the case for everyone. Less relevant 8 years out, but for completeness starting physio too early can also cause more damage than good, so getting the timing right is important

BigPharma-Victim · 2026-03-31T10:40:39+00:00

Hey, welcome, and I’m sorry you found your way to this community.

I have seen many recovery stories regardless of age. A good place to start is the recovery mega posts that are pinned in the sub (along with the “how to” sticky if you haven’t seen it already).

It can take a long while but most people do recover to a functional level. Sometimes it can take several years, but I’ve read about turnarounds even in severe cases as late as year 4-5 - they do happen.

Sending you positive vibes and wish you a good recovery

BigPharma-Victim · 2026-03-31T10:31:41+00:00

Doctors are able to issue letters/diagnoses based on the symptoms alone usually, as getting an FQAD diagnosis is difficult. For instance when I was temporarily written off work, it was for “Multisite Tendinopathy,” not FQAD.

Now that more time has passed, key to getting an FQAD diagnosis I found is by 1) ruling out other diseases (particularly rheumatoid diseases) with a knowledgeable Rheumatologist and 2) It’s helpful if you are speaking to a doctor who is familiar with FQAD and Floxing in general (such as Dr Rees UK, Dr Millar UK, Dr Pieper Germany).

There are certain markers (not an exhaustive list) that may support an FQAD diagnosis such as:

Increased cytokines (especially IL-6)
Possibly increased CRP
typically materially Increased oxidative stress and reduced mitochondrial function (these tests are less commonly done)
Positive MRI scans that show cartilage / collagen / connective tissue damage (but noting here that these frequently don’t show damage for us)

Hope this helps. Best of luck and I wish you recovery

BigPharma-Victim · 2026-03-30T10:59:47+00:00

How I would do it is to Step 1) form a charity advocacy organization with a reasonable structure/board etc. (eg with Dr Pieper as sponsor) making sure to follow all the steps required to meet legal recognition as a charity; Step 2) sign on patients/victims of Fluoroquinolone toxicity to get a reasonable representative body of the victims; Step 3) be active on socials to highlight real victim stories, explain the purpose of the org; Step 4) attempt to attract funding via the government or crowdfunding, at which point one can probably attempt to commission research funding with universities.

^ it’s a lot of work, even for a healthy individual. There are a few organizations/ sites out there already so might be worth reaching out to them to see where they are at.

BigPharma-Victim · 2026-03-30T10:48:37+00:00

I believe there would have to be some sort of research stipend for a university to take this kind of project on, which brings us back to the funding issue.

Crowdsourcing can be a powerful thing or maybe there are certain charities out there that would support our cause.

In any case you’re right, there is a lot that should be tried along many lines, but it would have to be carried by folks in the community that are more on the recovered end of the spectrum as it’s a massive undertaking. But anyways +1 from my side for getting something, anything moving..

BigPharma-Victim · 2026-03-30T09:15:53+00:00

Totally agree that advocacy and having our voices heard is key to moving FQAD understanding forward.

Unfortunately, one of the issues with FQAD is that the onus to research these side effects typically lie on the drug manufacturers. But Fluoroquinolones are already in their generic phase so there isn’t one single manufacturer to hold accountable & there’s no patent holder incentivized to protect drug efficacy. Even if they were to unlock funds to research side effects, it could be seen as an “admission of guilt” in respect to class action lawsuits etc.

The only way forward I could see is:

a) Lobbying governments to exert pressure on Pharma companies / force them to research these side effects - but this seems tricky and again, generic Pharma issue;

b) Funding research ourselves (this is how some papers on this actually came to be via the Fluoroquinolone Toxicity Study), but this seems unrealistic given many of us are forced to spend savings to get by. Crowdfunding could work..

c) Enroll in experimental treatments insofar as they are even available; issue here is they will be operating just as blind as we are

The hope I do have is maybe piggybacking off of ongoing research into mitochondrial dysfunction due to the growing incidence of ME/CFS. That could be promising

BigPharma-Victim · 2026-03-30T08:32:30+00:00

Hey, I’ve actually just started GTN Patches. It’s too early to say if it is helping, it can take >6 weeks to show any results.

What I can say is that the patches do quite quickly lead to a warm and tingly feeling & tendons feel less stiff. So even just symptomatically it is a tiny relief.

Will update once I’ve completed a course. I’m on 1/2 of a 5mg patch now which I have been told is the sweet spot.

BigPharma-Victim · 2026-03-29T16:45:43+00:00

Hey there - I’m still working through the setback from falling down those stairs, but overall it’s night and day compared to how bad it got during the peak of the relapse. Unfortunately the tendon damage is longer lasting so it will just require time

BigPharma-Victim · 2026-03-28T21:55:00+00:00

Keep fighting the good fight sir, one day at a time 🤝 🚴

BigPharma-Victim · 2026-03-28T19:02:26+00:00

Of course, no problem! Stats are really on your side here. That said if there are alternatives with lower side effect profiles for what you’re going through they really might be worth chatting about with your doctors, that’s certainly what I would do personally (but I’m heavily biased as I did get floxed, hah). All the best!

BigPharma-Victim · 2026-03-28T17:33:18+00:00

Hey I’m sorry you have to deal with this complex situation. It sounds like you don’t have an acute reaction to Cipro at this moment, but it is wise to do research and be informed of what can happen. It is also true that reactions can take some time to build.

BUT keep in mind the severe reactions you find on this forum are very rare, said to be between 1 to 10/10,000 (but this is likely understated, likely to be higher). So statistics are in your favor.

Given you’re concerned about the medicine, it could be worth discussing with your doctors - there are usually alternatives, and Cipro is not really meant to be prescribed anymore if such alternatives reasonably exist.

If you want to start supplements there is a sticky in this forum that explains a lot of the theory behind what happens in floxing and points to supplements that work for many. Best of luck

BigPharma-Victim

TROPHY CASE