*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.
I wanted to give an update here (10 1/2 weeks post Rx) to give other people hope – as I check in often to see if there have been any new stories posted.
To let you know where I was just weeks after my prescription: I had what I can only describe as peripheral neuropathy, pains in my arms and legs that would crop up and disappear many times throughout the days. I had pain in the tendons of both forearms, and in my pointer finger after “exerting” it. I had pain in the top of my foot when I walked and in my calf, as well as achilles. Even while sitting, I could feel the tendons in my thighs hurting. They would ache at times when I walked. Lots of anxiety, and I cried easily every single day and very foggy minded. The insomnia- I could only sleep about 4 hours a night (with night sweats and nightmares). There were two occasions where when doing simple movement of my legs, I felt something ‘pulling/tearing’ inside, a sensation I had never felt in my life. It was not painful, but the next day I would feel the pain or on and off for the next few weeks. One was the side of my knee, the other was the back of my thigh. One of my saggital bands (top of the knuckle where the finger meets the hand) suddenly started to slide off my knuckle and to the side. It was not painful. My appetite was gone, and I lost 13lbs in one months because I didn’t want to eat, and I didn’t have 13lbs to lose, so this was disconcerting.
I am a college student in my final year and had to dropped two courses due to the pain in my forearms and I did not want to make them worse. I’m a fine arts major, a lot of hands on work. Luckily, I’m still full-time and I will still graduate on time, though next semester will just be much more work than I anticipated.
The good news: I have not had any pulling or tearing sensations in any part of my body for over 8 weeks. It seems that my body, at least, was most frail in the following couple weeks after taking my Rx. The saggital band is still the same, but has not worsened nor do I feel pain here. The neuropathy has mostly subsided, with only occasional fleeting pain. This is usually when I am very, very tired. The insomnia has also subsided, with only one night in the past 4 weeks where I awoke and could not fall back asleep (and no more night sweats!). I no longer feel very anxious nor depressed, but I do have days where I have that fogginess. I hear this eventually passes, so looking forward to that! The pain in my calf and foot have subsided with hints of an ache on occasion. Some days the achilles acts up, but it is very manageable. No more tendon pain in my legs from just sitting. My forearms ache at times, but not near to the point they did initially. It is passing and very tolerable. I also have my appetite back! And the weight! I know that my body is healing, just comparing myself to where I was only 8 weeks ago.
When I was most desperate for sleep, I never took anything to help me fall back asleep. No anti-histamines, melatonin, prescriptions, etc. Nothing. I wanted my brain to eventually work it out on its own (though every site you may find will tell you insomnia doesn’t go away on its own, I refused to believe this). Instead, I walked some everyday (always outdoors) and made sure I was in bed at the same time every night. Eventually, it regulated.
I stretch every single day, every part of my body. It is worth the extra time it takes me every morning. It has been so helpful, even if I have pain in an area, I stretch it, though gently.
I don’t take anything for pain, not even tylenol. I have also cut out caffeine, but have coffee as a treat sometimes. I don’t drink much alcohol now. One night, I had a bit too much fun with friends, and let’s just say I was paying for it the next week instead of just the next day! Mostly mental fogginess, but I did notice neuropathic pain reappeared as well as some tendon pain.
Starting the semester being recently floxed was very hard. There were times where I wanted to give up, or not get out of bed or get dressed, or just not continue with life. That was not me. What added to this hopelessness was reading stories about worst-case-scenarios in which the author declared to me that my life was officially over.
No matter what, I always got out of bed, got dressed, put on my makeup, and went where I needed to be, again, no matter what. Continue with life. Do something that counts and makes you feel good. Your life is not over. I thought mine was just weeks ago, and now I am very excited for my future again. I’m walking three miles everyday, easily, and have three art exhibitions coming up, have completed many paintings, started an internship, am in school full-time and work part-time. Every day is not perfect, but before being floxed, every day wasn’t either. Life is good, and we will be okay.
** 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.
Can you please tell me what extra things you did to recover? Did you take any supplements? I am 3 weeks today post rx and am in so much pain, brain fog, skin burning, joints hurting… i feel so desperate.
Thank you for any help.
Sherri
Sure, Sherri – I’ve been taking Mother Earth angstrom magnesium, RAW One Daily Vitamin for Women, RAW Probiotics Women (only for two months after), a kelp supplement for iodine and a B-complex 50 vitamin – I’ve also switched to drinking mainly distilled water and lots of it, as well as using only non-fluoridated toothpaste. I don’t know if it matters, but I’m also vegetarian (have been for years) so maybe that helps. I was also doing a lot of juicing (beets, carrots, kale, oranges, ginger, etc. [not necessarily that combo!].
To be honest, these past couple weeks I feel better and better, and have fallen off my regimented use of them – but I do notice my sleep starts to become affected when I try to phase out the B vitamin (this has happened on a few occasions).
I’m out almost 13 weeks, and believe me, those first 8 weeks are tough, but after that I started to notice an improvement. My have almost no pain now, whereas everyday for weeks I had it – mostly now I deal with feeling like I’ve lost some IQ points. Hopefully those will grow back. Hang in there, you will notice improvement – overcoming the desperation is the hardest part,
I wanted to give everyone an update as to how I’m doing. It’s been almost 5 months to the day since I’ve completed my Cipro prescription. I also wanted to let everyone know that my prescription was for 500mg twice daily for three days, a total of 6 pills. Amazing how 6 pills, $9 worth, can so change someone’s life.
Anywho, I am better than I was when I wrote this out. I have achilles pain on occasion and stiffness in my right calf, but this is the only pain I have now, and it is intermittent (depending on my activity level). I’m no longer taking any supplements and have been sleeping just fine. Some weird dreams still, but a plus is that I’m sleeping very deeply again. I no longer have brain fog (THANK GOODNESS) and my memory has improved, thought I’m not sure how much – maybe I’ve gotten used to being forgetful (or maybe I’ve just had a selective memory all along).
I am having gastrointestinal troubles, but I have been in general for the last couple years. I have a lot of food intolerances, and that’s what led to my Cipro prescription.
Neuropathy only pops up when I’m around smoke for too long. It’s been almost non-existent for the past month.
The main issue now is popping and cracking in all of my joints. None of it is painful, just frustrating to know that these sounds are a direct result of Cipro.
Crystal I am so happy you have achieved some normalcy after that nightmare. I read your story everyday. Like you, I am entering my last year of college in January and I am so distraught by this whole thing. I have the same exact symptoms as you and have refused to take sleeping aids as well. Luckily, my body also regulated itself and I am able to sleep a few hours now. I have popping in my joints too but not as bad as in the beginning. Something tells me that this medication diminished the synovial fluid in our joints but that’s just an assumption. How is school going for you? I hate my brain fog too; It comes and goes. I love the little moments of clarity but it always comes back. I’m hoping mine goes away before school starts again but I guess I have to wait and see. I also have some digestive issues, Crohns actually. I was given Cipro for the same type of issue (took 4 250mg pills). Thank you for giving me hope.
I got floxed December 6th by the way and have made improvements since then but I’m still terrified of what’s in store for me. This medication causes so much anxiety!
Crystal,
Nice to hear of your good recovery. I myself am hoping for a quick recovery (aren’t we all).
I also suffer from cracking joints, insomnia, peripheral neuropathy, and a small amount of anxiety. I have seen some minor gains 10 days out. I can now be on my feet for about 20 minutes at a time, whereas before I could barely walk 20 ft. I am hoping and praying the next couple weeks are nice to me…… Keep us posted! Good luck in College. I hope you do well. 🙂
Crystal, I read your story everyday! Did you ever have burning in your back and shoulders? I am having more of the upper body joint/tendon pains. I am almost 2 weeks post rX. I am sure hoping this will start to get better soon. The peripheral neuropathy and burning all over have already passed, so I am hoping this is a promising thing.
Hi Amy!
Yes, I have had burning in my left shoulder blade since my floxing, but now it is very transient. Lately, it’s been happening off and on for the past week (very, very minor compared to before) but was gone for over a month before this. It doesn’t seem to effect anything so I don’t worry about it, and honestly at this point I do wonder if it is Cipro related or not. Probably is, but that’s how minor it is!
Have faith, my forearms were the first to hurt and they hurt for a long time. Now, I don’t even think about it and I can’t even recall the pain that was there. I hope you will get there soon, too! When I was first floxed, 2 years recovery time was very do-able for me (as in, I just wanted to get better) I thought I was in it for the long haul, but my recovery was very quick – which allows me to believe it can be for others, too.
Don’t be scared if the neuropathy comes back – mine made a bad reappearance after not having any for weeks. But that faded and I have yet to have a recurrence (it’s been months now). I mentioned to Charles earlier, it may get worse before it gets better, as it did for me. Think of it as having to hit rock-bottom before you can climb out of the hole. That thought process helped me through this. Hang in there, keep yourself busy (really, it does wonders!) and do things that you love or make you feel accomplished. Only read positive stories about recovery, it made SUCH a difference for me. You will get better, even if at times you feel you won’t. Hang in there.
Crystal
Thank you so much Crystal for taking the time to get back to others! You are a true inspiration! I took Cipro for 3 days and stopped with stomach pain. Then they tried Levaquin for UTI. I should have known better to take it but I stopped after 2 days! Did you ever see a neurologist for the neuropathy? Also, did you ever experience really loud noises awakening you in your sleep and scaring you? (Almost like an electrical jolt to your body?) Thanks again!!! It is all scary but you have to turn to your Faith more than ever in times like these!!!
You are a wonderful person!!! I would love to exchange e-mails if you have time! My e-mail is kdamy@hotmail.com. I completely understand and agree about the neuro signs. Everything eventually will balance out. My tingles have already subsided greatly from the prescription. Well I ended up taking more than you, but I never noticed anything with the Cipro just after the Levaquin. Thanks again!
Hey Crystal! i had one more question. what did your neuropathy pain feel like? did you have muscle twitches? trying to figure out if this is the nerves or what! haha! what im mainly feeling now is numbness at time down my neck and mid back. thanks again for everything!
Hi Amy! Sorry I haven’t sent you an email yet, I’ll do that soon, but i’ll answer your question here in case anyone else is interested. I had to defend my senior thesis this week and it has been crazy busy (but it went very well!)!
My neuropathy was fleeting aching pain in my hands, arms and legs. There would be twinges, and what I would describe as ‘fishing line wrapped around a muscle and tightened’ (my legs typically). The burning was only in my left shoulder blade. Also, my right front tooth was almost constantly tingling/vibrating/slightly aching for months – I was terrified it might rot out or something! Horrific, especially since I don’t even have a single cavity! That subsided just like everything else and my tooth looks fine 🙂
One last thing that I can think of is vibrating sensations in my legs and feet, which has been gone for a few weeks now. It seemed like this was the transition, from pain to vibrations to nothing. For a few weeks, I did have muscle twitches for days, this was in December. I was a bit stressed so it may have been just that.
Thank you so much Crystal! Would you have described your brain fogginess with blurred vision? My vision is somewhat blurred now since taking the Levaquin. You are the best for answering questions and providing positive hope!!!! My neuropathy pops up at night after I eat certain things. It is so annoying. 🙂 Hope you are still feeling well and congrats on your thesis!
Hello! I wanted to give an update on how I’m doing, now that I’m more than 7 months out from being floxed. I hate having to use that word, and I remember at the very beginning, I thought if I didn’t use that word to describe myself, it meant that what was happening to me was not real.
I’m doing very well. I graduate next month with honors and am excited to move on into my next stage of life. When first floxed, I worried greatly about my future, and I was no longer excited about school or graduating, because the future seemed so uncertain. But life has come out just the way I had planned for it to, and I am SO ENTHUSIASTIC ABOUT IT ALL.
But I’m sure you want to know how I’m feeling physically, so I will give you the run down.
The Bad:
I still crack and pop, all the time – it’s a bit embarrassing when I’m in a quiet lecture hall and I get up and the cracks echo off the walls. It’s not painful, but tonight while doing squats for the first time since floxing, I noticed pain in my right knee, which started after it popped several times during squatting. Not looking forward to what this may mean as I age. My achilles hurts on occasion, but this is only around the time of my period and it’s not activity related, which seems weird. The neuropathy acts up very mildly during this time as well, but it’s mostly limited to feelings of raindrops on my skin and rarely transient pain in a specific finger or thumb.
My left wrist and right ankle seem to be hit the worst, as in, I can feel the bones grinding against each other when moving them a certain way – but they’re not painful – and I hope they never will be! I do wonder if the cartilage damage is a progression over time, or a one-off poisoning deal. I wonder this because it seemed it took my joints a couple months to start clicking and popping.
The Good:
My gastrointestinal problems have completely went away, so let’s just say everything is very “regular and healthy”. Thank goodness! My sleep is still very good. No crying episodes or anxiety at all. My brain is super sharp again; I’m acing my papers and able to count down in a cash drawer while holding a conversation with a co-worker. I mean, I could barely comprehend the time on a digital clock when first floxed.
I’d say what has made the BEST recovery out of all this has been my mind! Like, I wasn’t even this content with life before being floxed.
I haven’t taken any supplements in the past 2 months I’d say. I’m a coffee drinker again, hardcore, and eat soy on occasion as well. I’m not sure if these affect me or not, but it is so hard to tell if they DON’T, and consuming my favorite pre-floxing foods make me feel like a normal un-sick person, which therefore makes me so happy that I DON’T CARE!
But aside from all this, when I do feel pain, it’s an accepted part of life now. It’s no longer a death sentence, or a guaranteed ticket to a wheel chair, and it doesn’t make me angry. I tell myself that no one gets out of life alive, and our bodies take a beating while we’re using them. That’s what they’re for. And while mine was unfairly broken down due to a drug that was supposed to help me, I have to accept what cannot be changed. The damage is done – This is my body for the rest of my life, I will live with it, and accept it.
Crystal, I am so happy for you. You are a young, vibrant person and are giving all of us hope. Thank you for taking time from your busy schedule to give us that hope. Your story came to me today at a much needed time.
Dee
Crystal, I’m so glad to hear about your success in recovery. Thank you for sharing with all of us, and updating us. I’m hoping, that very soon, I can display my recovery on here.. I’ve still got some symptoms that mimic fibromyalgia, and still have some neuropathy. Additionally, lately, I feel exhausted. Even when I wake up in the morning, I’m still feeling tired. This a new symptom… Aside, from that I am healing… I know that I am. I am nothing like where I was with my anxiety and fear in that first three weeks when I messaged you. My brain is clear of fog, and I feel like I am gaining strength every day. I’m going to try the stretching every morning now, as you talked about.
Congrats on your graduation!
Sherri
Sherri, was your brain fog like everything around you just felt weird and out of place sometimes? does that make sense? sometimes it comes on for me where everything around me just doesnt feel normal. just wondering if this is brain fog? thanks! glad you are both seeing improvements!! that makes me so happy!
Hi Sherri, how would you describe your brain fog? when mine is bad i feel like everything around me seems weird and out of place. the room all of the sudden just feels different. was yours like this? so happy you and crystal are seeing so much improvement! truly happy for you both! have a happy day!
Sorry I did not mean to post that twice! 🙂
so glad you are doing better, I got through about 30 scripts of cipro with problems but made it through.. the levaquin of 40 pills nuked me.. I have pins and needles over my entire body for 15 months and now my feet are hit and turning Ice frozen cold.. Can you explain what your “neuropathy was like” was it burning, pins and needles.. or body type pain which I always had from the cipro but realize it was “nerve pain similar to fibro pain”.. you will do fine honey.. so glad to hear.