A friend wrote this to me –
I don’t believe I am going to get better, and I don’t know what to do anymore. This feels like a nightmare from which I cannot wake up. I know people say to stay positive, but I don’t know how, especially when, every day, I read comments in the group with people who are several years out, and have not improved. I know people say everyone is different, but after more than a year, I have a feeling I am one of the unfortunate few that never recover. What should I do?
Here is my response –
I think that you should just keep going. That’s all that is really required of you, or anyone else – just not giving up. In not giving up you are being hopeful. Eventually, it will become easier to not give up. Eventually, it will be effortless. At least that’s what I hope for you.
I recently got an email from someone who recovered after 8 years. 8 years is frightening, for sure. But she recovered. It did happen.
I encourage you to find something that makes you feel just a little bit better. Maybe that’s sunshine, or funny movies, or acupuncture, or magnesium, or whatever – and do that thing every day until the little incremental improvements add up.
And just don’t give up.
Try to believe that it will get better. It’s okay to not always believe that you will improve. But as long as you’re not giving up, things will change. Maybe they will change for the better. I hope that for you!
That’s what I think you should do. I hope that what I said doesn’t seem to trivialize your situation in any way. I know that it’s scary and I know that fear that it won’t end is normal. I think that just continuing on is difficult sometimes. That’s what I suggest you do though.
Post Script To All:
I wish you all healing, love, happiness, recovery and everything else that your heart desires. I’m sorry that this whole ordeal happened to you. I’m sorry for the pain. I’m sorry for the suffering. I’m sorry for the fear and the hopelessness. I hope that it all passes. I hope that you find your way back to health and happiness.
I know that sometimes it feels like it won’t pass, like you’re stuck in a hole and will never be able to crawl out of it. It will pass though. I can’t promise that you will recover completely, or that you’ll get your former abilities, or yourself, back. But I can promise you that this difficult moment will pass. It will change. Eventually you will stop falling down the hole, and you will start to improve; to emerge.
When you emerge, you’ll have all sorts of gifts that you didn’t ever want. Empathy and compassion for those with chronic, mysterious diseases, patience for yourself, faith in your resilience, etc. Those things are possible. They’re down that hole – look around and you’ll find them.
I am inclined to write trite sayings about this, and I’m not sure if they help or hurt. Hang in there. It will pass. Breathe. And just keep going. That is my advice.
And know, in every part of your being, in every breath you take, that you are loved.
It helps. I swear, it does.
Boy was this ever a post I needed, just at the moment I needed it. Thank you.
Heartfelt and well written as usual Lisa. Thanks for doing all you are doing!
Rarely if ever, do I find what you say to be “trite” Lisa. Thank you!
This blog has been what keeps me going. Hearing the stories of people who have recovered in 6 months, 12 months, or even years later give me so much hope that one day I will be better.
I am only 24 and have been sick a decent amount in my life, prior to this whole floxing BS. Years of sinus infections and ear infections. Surgeries, procedures, I’ve even had a colonoscopy and endoscopy at age 21. (It’s funny telling your parents what to expect consider it was around the time they both were due for their first)
I always have gotten better. I even had a virus doctors told me was probably HIV due to how my immune system was reacting. Thankfully it was a common virus and I had just let my immune system take a major dive (thanks college lifestyle and being overstressed.) In those times, I struggled to “keep going” but I always managed. I would make terrible choices leaving me sick. Doctors have never diagnosed things properly, that I am sure I suffer from; gluten intolerance, GERD, IBS, gastrointestinal issues and sinus issues have plagued me, and doctors have never been able to CURE me.
I was floxed in September by a CVS nurse. I told her about my history of sinus infections, and she said “here’s a stronger antibiotic, it will help” I said I’d never heard of it, could I have one I knew worked? She said no, this will do the trick. I listened. I didn’t feel well. I wanted to just BE better.
The first month following was quite a roller coaster of mental and physical nightmares. It’s been 5 months and things are much better, but I wouldn’t considered myself healed. Not yet. But one day.
I get excited knowing one day I will be a submission on this site. That gives me hope. One day I will be able to run again without worry of achilles pain acting up. One day I hope I can drink alcohol without feeling major anxiety and a racing heart for the following 2-3 days. One day I will be able to enjoy a normal diet. It’s knowing there is a ONE DAY. It might be tomorrow, it might be a month from now. Things could get worse, but they will get better. One day. I hope one day soon. I hope one day soon for everyone that reads these posts. We can’t change the fact we ingested a poison. All we can do is have hope in our bodies and the incredible abilities they have to repair ourselves.
Thanks Lisa, just for caring. For taking the time, and putting in your energy. Thank you.
Lisa – this site and your words are like a beacon of light in this floxed fog; thank you for everything you do for us.
Thank you all! Every post is just beautiful!! I my three year floxiversary comes up in April. I feel like I was about 50% at year one, 75% at year two, and about 85% now. Will I ever fully recover? I think there is a good chance of it. But that is not my focus. I’ve always thought since my initial floxing, that if “this” is all I am now, I want to be the best “this” possible. Life has changed, in many ways for the better. I have never been more in love with my husband, more in awe of my children, more thankful for the people with whom I work, more full of faith,…. DON’T GIVE UP!! The best is still yet to come!! Hugs! 🙂
I still love the positive aura this site brings everyone.
I’m over 4 months out of a mild/moderate reaction. I was given 28 days of Cipro for a ‘suspected’ bacterial infection. Seemed to make sense, and the doctor was an older fellow who had awards and was highly regarded in the community. He also prescribed me with 30 days of Meloxicam (NSAID!!) since I was having some pain in that area. “Take these if it gets bad”.
I never was much of a pain med taker. A few asprin here or there for extreme headaces. I decided to go to work one day and take a Meloxicam there so I could work without much distraction. Well, I was so weak and lightheaded after that and for the next 24 hours. Having never taken Meloxicam I figured I just didn’t react well or maybe that’s how stronger painkillers make you feel. I went back to just taking low dose asprin to keep my mind on work and such. Later on I’d split the meloxicam in 1/2 and take those. I took maybe 3 pills total, on top of various amounts of low dose asprin.
Finally realized at about 24 days in that the Cipro was the real culprit. By then I had severe insomnia, heart burn and other digestive pain. Still didn’t know about NSAIDs. No one mentioned it. EVER. Went back to the urologist about 32 days later. he offered more Cipro. I flat out refused, and I guess that made him “done with me”. I was told to take more NSAIDs as needed and what I really had was chronic prostitatis vs. bacterial prostitis. Of course bacterial prostate infections are very rare as in maybe %10 of the cases reported.
I don’t know how I escaped this as well as I did. It was scary, that’s for sure. Reading about NSAIDS that finally connected the dots.
It went down hill not even 3 days off Cipro. Had a major muscle start spasming in my left arm, severe insomnia, massive reflux that brought tears to my eyes at night. Funny thing was the lack of tendon issues or joint issues. Was I still floxed? That’s when I read about Peripheal Neuropahty. DING DING.
My body was a vibrating nightmare for about 3 weeks, then the insomnia started to fade with the help of some low-dose melatonin. The vibrating/fuzzy feeling stopped about a month later, however there was now various muscle twitching/spasming in my arms, legs, flanks and shoulders. Big visible twitching. Heartburn was still there but was responding to Zantac (150mg 2x). I HATED having to take the Zantac, but it worked.
By 2 months the tightness in my calves started. Not painful, but scary. Too afraid to walk too fast, or bend over or do anything that could make it worse. Started taking SlowMag and other various pills. I don’t know if anything helped, but it didn’t seem to hurt either. The heartburn is gone now, at least the painful part. I come off Zantac, I WANT an acidic stomach. Muscle twitching is still there, more random but less often.
3 Months out I finally begin to feel ‘better’. Heartburn almost gone however I seem to have ‘silent reflux’ (google it). I deal with it for now. Muscle twitching is no longer visible and only in my lower legs or rarely my arms/shoulders. I sleep well most nights, but still wake up at least once but seem to fall back asleep ok. I start having dreams again. No more melatonin most nights.
Now (4+): Silent reflux still bugs me, going to try DGL chews and a few other things as well as consult a “gasp” doctor. I don’t want throat cancer. I’ll refuse PPIs and maybe go back on Zantac, we’ll see.
Insomnia is all but gone. I’ve actually drank some caffiene. I think that coffee is an issue for my reflux, but I’ve had two cups and still went to sleep on time.
Muscle twitching is almost none. It’s more of quick spasam bursts that aren’t visible. Just enough to remind me they are there. Magnesium? I took both Magnesium Oxide and Magnesium Chloride (SlowMag). Also been drinking Tart Cherry Juice off and on. I have 0 idea if any of this helped.
So this brings me to how I feel today. I feel great of course that I appear to be going uphill instead of down. However, I feel terrible that I was able to take Cipro for 24 days plus random NSAIDs including prescription strength Meloxicam and come out of this near unscathed. It’s not fair. People take 1 pill and are totally disabled.
Like Lisa, I feel so bad this happened to me, you, and everyone else. But look, we have Lisa. We have positive messages being delivered. Good always triumphs over evil.
Hi Double J. Thanks for your post. I was wondering how you know you have silent reflux. I had GERD for many years pre-floxing. I also took Zantac for many years. Then post-flow, I started to become more aware of health issues especially healthy diet. I gave up dairy, gluten, sugar, and booze. My GERD went away and I stopped taking Zantac. But in the past month or so I think I’m having some kind of reflux. My voice is hoarse and I often wake up with a bad taste in my mouth. I acid though. I’ve tried HCL supplements, but those gave me severe GI problems so I don’t think my problem is lack of acid. What kind of doctor are you going to see about this. I think most traditional doctors will just try to put you on PPIs…
We have no choice. We all have to survive and tell every one about this . I going to have some shirts made that say you been cipro Lately please ask . Every one of us that makes it can stand up and give the big finger to bayer . I am not pissed but we got screwed . One thing I know is you have to be floxed to under stand what we have gone threw . If you haven’t you will not truly understand . Do not give up
It took me 2 years before I started recovering even a tiny bit….but year 2-3 was dramatic! I had to make some serious changes, but they worked. Don’t lose hope!
What serious changes Sarah? I’m at 2 and 1/2 years out and my condition is the worst its been so far, although I had a delayed reaction. It’s a real struggle to stay positive at this point.
Lisa…I would like to thank you again for starting this site…I do not remember how I found it but without it I do not know what I would have done….My heart breaks when I read the stories….I feel so bad for everyone…I find it amazing how a pill can do so much damage sometimes for years to someone’s body…and the Doctor’s will just deny it…I have got some really good information on this site and I have seen some improvement…I will not complain because I am so much better off than all the stories I have read….Lisa you have become a Friend & Angel to a lot of people on this site…I wish Good Karma to you for the rest of your life…..
Did you know? Despite having written War and Peace and Anna Karenina, Tolstoy, at age 51, looked back on his life and considered it to be a meaningless failure.
In his work: “My Confession” he describes losing his faith and seeking it in all sorts of places, from philosophy to science, and not finding it anywhere.
One day while out hunting with a gun, he considered taking his life, until he realized that he hadn’t lost his faith at all. The fact that he kept going, kept looking, was faith itself.
Hope isn’t an idea we have, it’s something we do, and it is built one little action at a time.
I really needed to read this thank you
You’ve got a way with words, Lisa. That was perfect. I would also like to tell your friend that for months I thought I was dying. Furthermore, I wanted to die. Words don’t exist to describe the nightmarish hell I was living in, the worst of 30 bad side effects being suffocating like breathing for months. I kept thinking “I wonder if this is what water-boarding feels like?” It was grotesque beyond imagination. And I kept thinking I would be like that for the rest of my life…which is one reason I wanted it to end. IT was just nonstop torture—and that was on top of visual disturbances, excruciating pain and dropping down to a fragile 112 lbs. I hung in there, in spite of the fear—or maybe because I couldn’t see an alternative—no surefire way out. It am now about one year an 8 months out and while I still have some side effects, I am back out in the world, and about 85-90% recovered.
So you never know…it could be tomorrow or the next day. With me the changes were so subtle, I realized that some side effects had disappeared in retrospect. And I know everyone is different, but I do credit the IVs with starting me back on the path to recovery. Hang in there!
Thank you…. Today I really needed to hear that. It’s been 7 and a half years. Some things better some still the same but we just got to keep moving forward. It’s wonderful to have the positivity that everyone provides.