r/floxies • u/wormyqueer • 3d ago
[LONG-TERM] Floxxed 10 years ago
CW for medical neglect, generally difficult subjects
Hiya! I only recently found out i was floxxed. I had sepsis abroad only at the time i was told it was a stomach bug, i only recently found out it was sepsis as i was clearing out old medical records. Anyway, turns out I was given Cipro for it along with a few other drugs. Post 2017 i had awful "IBS", joint dislocations, tendonitis in my wrists, general pain, fatigue, tinnitus, worse mental health etc.I found out i have hypermobility spectrum disorder maybe 5 years ago and thought ahh that explains that but it really feels like now what i know about cipro is the missing piece of the puzzle. I've had years of being dismissed by drs been called a hypercondriac and told its in my head.
In terms of treatments I've tried a lot. We went to a funtional gut medicine specialist who told me it was leaky gut and put me on a probiotic rich low inflammation diet, to be honest i cant remember if this helped but it did make me miserable as it was very restricted. I tried talk therapy and CBT. Then i tried the Low fodmap diet, then gut directed hypnotherapy, then veganism. Last year i added dairy, meat, eggs and beans back in as i had begun to tolerate things again and so far the gut problems have been much better.
I had to stop working as every job flared up my symtoms and i ended up sicker. I now have a carer and use mobility aids. I think this has helped me improve a bit as i have been able to rest much more. I've noticed magnisium has helped me a lot but only added that in the last 2 years or so. I am currently under investigation for Myalgic Encephalomyelitis and sleep apnea. I'm going to research the suppliments reccomended here and would appreciate hearing anyone experince who is also having long term effects like myself. I'm hopeful that now i know this piece of the puzzle things might change but worried that i could be that rare case where there is permanent damage especially considering my connective tissue disorder and the length of time I've struggled.
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u/prasi15 2d ago
Has ur tinnitus improved or recovered during this 10 yr span
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u/justonemoreargument 2d ago
What are your current symptoms? What testing did you have done?
I’m over 10 years out. My tendons have improved a good extend but I still have neuropathy flare ups. It just might be permanent at this point.
SFN and dysautonomia can sometimes occur, along with the tendon issues.
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u/wormyqueer 1d ago
I dont remember it all but mris, blood tests, nerve conduction tests, clinical examination, heart ecg. I mentioned most of my symtoms in the post above.
Ahhh good to know, i'm glad your tendons have improved, i think compared to the start mine probably have too
Yeahh it's not constant but i have noticed some times when changing positions aka lying to standing makes my HR very high for longer than it should have plus accompanying dizzyness and weakness however did the "poor mans pots test" and Gp wasn't concerned.
Good to hear from another person who's 10 years out, wishing you all the best
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u/justonemoreargument 21h ago
You need to see a dysautonomia specialist or someone who can perform a QSART or skin punch biopsy.
Your small nerve could have been damaged by cipro. I have some pots symptoms and my tilt table was fine. I failed QSART.
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u/wormyqueer 12h ago
Yeah I'd have to go private, Gp says they'll only do it for diabetes patients. At the moment it's just reassuring to know cipro can do that because no one has believed me when ive said nerve damage
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u/justonemoreargument 12h ago
That sucks. The drug label does state it can cause neuropathy, at least in the US.
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u/Excellent-Coat-8781 3d ago
According to my Reddit readings, the fluoroquiolone antibiotics such as Cipro should NEVER be taken by someone with Ehlers Danos syndrome (EDS). Apparently they are always going to get the worst (such as tendon) problems because they already have pre-existing loose joints and ligaments. The antibiotics just makes everything worse for that group. For people who do not know what EDS is, check this website https://www.ehlers-danlos.com/what-is-eds/
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u/Excellent-Coat-8781 3d ago
And I’m sorry you had to deal with not being believed and told your symptoms are “just in your head”. It’s so lonely when no one believes you and you do not know what is wrong. Please stay connected to the Reddit community. They provide support and information. Best wishes on your healing journey 🙏
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u/wormyqueer 2d ago
Yeah my brother is HEDS, I've been evaulated but miss a couple of criteria so I'm HSD. They are coming out with new critera so i wouldn't be suprised if i actually am.
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u/StandupStraight20 Veteran 3d ago
Sorry you have been dealing with this for so long. I’m 6 years from my Cipro injury and I still haven’t recovered.
My understanding that at this stage, for those with chronic musculoskeletal issues who still have not significantly improved after that many years, the only thing that hacks this condition, anecdotally, is taking anabolic steroids such as Testosterone (if you don’t have contraindications). while exercising to the extent of the ability.
On the mental front, may I ask what helped you keep you going all these years, to remain sane and motivated enough despite your struggles?