*The following is an individual’s story of surviving fluoroquinolone toxicity. It is not medical advice. Please see the disclaimer at the bottom of the story. Thank you, and please be cautious with all treatments.
Being “floxed” was a huge and totally unexpected blow to my life but I’m recovering well.
In 2009 I was a very active woman in my 40s. I took no meds regularly and avoided taking any sort of drug unless absolutely necessary. I walked for exercise, often three miles a day. I was strong and healthy.
Part of my healthy lifestyle included a huge spinach salad every day, as well as wheat germ in my yogurt every morning. I found out the hard way that eating large amounts of those healthy substances can cause kidney stones in some people – I ended up in the urgent care clinic in significant pain from a kidney stone, which was a big, unpleasant surprise, but one easily remedied…or so I thought.
Though I had no infection, the doctor gave me one week of Cipro “just in case” I got a kidney or bladder infection from this random kidney stone (I had never had a kidney stone before and haven’t had one since and hadn’t had a bladder infection in probably 25 years). When I picked up the prescription, the pharmacist called me to the counter and read the “black box warning” to me, but honestly, I thought he was just doing this as a courtesy. Since I’ve never had any tendon issues, and since I’m not overly sensitive to drugs, I just figured, “OK, if I develop any side effects of this stuff, I’ll just stop using it and call my doctor.”
I took the Cipro as prescribed, and had no side effects during the week of meds. In fact, the whole little scenario was so drama free that I completely forgot I ever took Cipro – till much later.
Fast forward a few weeks. I noticed that my left ankle seemed a little stiff. Within a few months, I noticed a lump developing, and more pain. Eventually the pain was radiating up the back of my leg, so I went to the doctor, who told me I had tendonitis and put me in an orthopedic boot with instructions to wear it whenever I was walking, and to return in a month.
I went back…no better. The lump was bigger. The doctor prescribed a lift in the boot and another month. This went on for three months – three months of clomping around in a huge orthopedic boot while my calf muscle atrophied and shrunk to next to nothing. In frustration and pain, I switched doctors. My new doctor immediately ordered an MRI which showed that my Achilles tendon was torn – but not in the “usual” way. Nope – it was actually disintegrating. He immediately scheduled surgery to removed the damaged tissue and to rebuild my Achilles tendon. He and I were both perplexed as to why this happened, but we chalked it up to, oh, who knows. I had stepped backwards off a ladder several months before but at the time, I didn’t feel any pain in my ankle, but that was the only incident I could come up with so my doctor shrugged his shoulders and said, “Who knows – maybe that was what started all this.”
The surgery, in 2010, was successful for the most part. Though my left Achilles tendon is permanently swollen and much stiffer, it’s functional and I have nearly full range of motion. However, nothing can replace your “original” Achilles tendon! Five years later and I’m still dealing with a foot that swells at the end of the day, some pain and stiffness, and I will never wear stilettos again!
Besides that, the physical therapy and recovery from this surgery takes MONTHS. MONTHS, often up to a year – and much of it is painful. I gained 15 pounds during that year. It took me another year to lose that weight.
Fast forward to 2013 or so. I began having pain in my right Achilles tendon. A hauntingly familiar sort of pain, But I had had absolutely zero injuries or falls or anything like that. I chalked it up to overuse due to the weakness of my left leg (my calf was still significantly smaller on my left leg even though I was working it out). But over the next few months, I was horrified to see that same sort of telltale lump appear on the right Achilles tendon. I went back to my doctor, who immediately ordered an MRI and who immediately then scheduled surgery to repair my right Achilles tendon which was doing exactly what the left one had done – disintegrating.
At this point, my orthopedic surgeon began looking in earnest for a reason for this to happen to me. I did not have any sort of arthritis. I did not have any sort of injury. I did not have any sort of tendon or joint pain. No family history of this sort of thing either. It was a mystery.
Then he asked me to look back over my history and tell him if I had ever taken any fluoroquinolones. BINGO. That one round of Cipro was my ONLY risk factor and the only logical answer as to why both my Achilles tendons had fallen apart.
More research is showing that the long term effects of these drugs can cause damage long after the dosage has been discontinued. This is where my anger comes in. When I took Cipro, there was nothing in the warnings to tell me that I might have damage and not even know it while I was taking the drug – that by the time I realized what it had done to my body, it would be too late to reverse the damage. I had no idea that the tendon damage could take weeks, months, YEARS to manifest – but that’s how it affected me.
The really scary thing is that now I am experiencing significant pain in my hands and thumbs. My orthopedic surgeon has warned me that I am at much higher risk for future tendon damage, and I believe it.
If there is any good news to this, it’s that the surgery did apparently fix my Achilles tendons for the most part. I was disabled for a total of nearly two years. Both my Achilles tendons are permanently scarred and swollen. Both my feet swell and hurt after walking more than 7000 steps per day (I wear a pedometer to “warn” myself of when I’m reaching my “foot limit” because stamina wise I could walk for probably ten miles a day – but my feet can’t take it). And I am worried about my hands.
The surgery gave me back my range of motion (nearly 100 percent on one ankle and fully 100 percent on the other – woohoo!). It was very successful. But it wasn’t just the surgery – Physical therapy is CRITICAL and each ankle required PT at least twice a week for several months. I also had the Graston technique done on both scars to minimize scar tissue. This is painful but very effective and I highly recommend getting physical therapy from a facility with therapists who specialize in this treatment.
I also used vitamin E oil on both scars and that helped them heal as well.
There are some excellent online videos that show yoga for people wearing casts or orthopedic boots. I LOVED doing yoga every evening in a darkened room – it kept me active and limber. I also did some floor calisthenics and upper body workouts. But my most healing treatment after surgery was my two DOGS. Every night when I would get on the floor to do yoga, they would come running in and begin impeding me GREATLY. I mean, they were all in my way, but they were giving me love. They seemed to know that I was down on that floor trying to heal myself and they were there for one reason – to shower me with healing love. They would often lay against me and it almost felt like they were pushing their love into me! I used to call it Doga instead of Yoga because both my 75 pound dogs insisted on being right there with me on that floor.
My orthopedic surgeon told me that I am at a higher risk for future tendon issues, and I do worry about my hands and especially my thumbs sometimes – they seem to hurt a lot more than is probably normal, but so far no swelling so I haven’t gone back to the doctor about it. Hopefully it’s nothing related to the medications.
But at least I don’t have the ongoing nervous system involvement and excruciating pain that so many “floxies” suffer. So in a way, I consider myself one of the luckier ones.
** The story above is truthful, accurate and told to the best of the ability of the writer. It is not intended as medical advice. No person who submits his or her story, nor the people associated with Floxie Hope, diagnoses or treats any illness. The story above should not be substituted for professionally provided medical advice. Please consult your doctor before trying anything that has been mentioned in this story, or in any other story on this site. Please also note that people have varying responses to the treatments mentioned in each story. What helps one person may not help, and may even hurt, another person. It is important that you understand that supplements, IVs, essential oils, and all other treatments, effect people differently depending on the millions of variables that make each of us unique. Please use appropriate caution and prudence, and get professional medical advice.