Having your body fall apart is terrifying. Losing your mental capacity is even scarier. Hearing stories of people who have had their lives devastated by Cipro, Levaquin, Avelox or Floxin, when you are experiencing an adverse reaction to one of them, can be devastatingly frightening. Delayed reactions are scary. The connections between fluoroquionolone toxicity and autoimmune diseases are scary. This whole mess is scary and it’s completely understandable and normal for you to be afraid.
Try not to be though.
I know that it’s easier said than done to not be terrified, to calm down, and to know that you will be okay, and I’m not trying to minimize the legitimate fear at all, but, unfortunately, fear isn’t helpful–it’s actually harmful, and it needs to be nipped in the bud as quickly as possible.
Your symptoms are real, and they’re not in your head. But fear and anxiety can amplify all of your fluoroquinolone toxicity symptoms and make them worse. You want to get better, not worse, and I wholeheartedly believe that getting fear and anxiety under control are necessary for healing.
It’s okay to have a freak-out period. Most of us do. Forgive yourself for freaking out, but move on to less fear-based reactions as quickly as possible.
Tell yourself that you will be okay. Try to believe it. Try to believe that you will recover. Full recoveries are possible. I have fully recovered, and so have many others. Your body will heal. It will. I don’t know what your timeline will be, or whether or not you will make a full recovery, but I do know that each of us has a huge amount of resiliency and strength and that healing and recovery are both possible.
Take some deep breaths. Feel the air go in and out of your body and try to appreciate the beauty of being alive–it’s pretty amazing when you think about it. These horrible drugs knocked you down and hurt you, but they didn’t kill you. You’re still alive and breathing. With every breath comes healing. Breathe deeply–it helps, it really does.
I took a Mindfulness Based Stress Reduction class early in my floxing. It helped immensely and I recommend it to everyone. It helped to calm me down and dissipate some of the fear I was experiencing.
I encourage you to get away from anything that increases your fear. The information about fluoroquinolone toxicity that you can find on the internet is incredibly valuable, but reading about the horrible things that fluoroquinolones can do can induce fear and anxiety. I encourage you to get off the internet (including this site). Do something that is enjoyable that takes your mind off of fluoroquinolone toxicity – take a bath, or a walk, or watch a funny movie, or hug a loved one, or meditate, or anything else that is enjoyable and anxiety-reducing. See if you feel better after doing an anxiety-reducing activity, and if you do, stick with it.
Have hope, my friends. You can get through this. You WILL get through this. It’s a difficult hurdle, and a horrible time in your life. I understand and appreciate that. But it will change, it will get better. Try to believe it. Try to have hope.
Hang in there.
I wrote these “attitude tips” when I wrote my recovery story. I still think they’re helpful:
Try not to compare yourself to how you used to be. I used to hike 20 miles in a day. I can’t do that anymore, but I can hike 3 miles today and I couldn’t do that when I first got floxed. Compare yourself to how you were yesterday, not to how you were before you got floxed.
Do something – anything – to work toward healing, every day. Walk a little further than you did yesterday. Meditate. Take an Epsom Salt bath. Get an acupuncture treatment. Do a puzzle. Whatever makes you feel good – do it. Every little step helps.
Don’t kill yourself. Have hope. You will get better.
You’re not crazy. You’re sick. Have hope. You will get better.
You’re not stupid. You’re sick. Have hope. You will get better.
Try not to identify yourself as sick. The mind is a powerful thing so try to stay positive. It’s hard, I know. But try, because it’s worth it.
You will have bad days. They will pass. This all will pass. It is not permanent. You are strong – present tense. You were knocked down, but you weren’t killed. You will get better.
Don’t quit your job. Try to maintain as much normalcy in your life as you can.
It is not your fault. Even if you knew better, even if you demanded the most powerful drug possible from your doctor, even if you self-medicated, even if you coerced your doctor into giving you the fluoroquinolone antibiotic, even if the infection that you were treating was something that you got because of doing something stupid, or from sex, even if you continued to take it after you started to get sick, even if you floxed your child/parent or other loved one – IT IS NOT YOUR FAULT. You are sick. You are poisoned. You are not to blame for your sickness or for the fact that you are poisoned. Who to blame is a discussion that I don’t want to get into because I want this to be positive, but it is not you. You are not to blame. You are a victim. It is not your fault.
Please don’t fall too deeply into the pit of fear and despair. Being scared and angry and anxious are all normal and appropriate reactions, but they’re destructive, so the sooner you can get past them, the better.
Know that the fear will pass. Know that everything you are going through right now will pass. Each breath is a new one–a new beginning. Breathe deeply, and try to breathe out some of the fear.
You will be okay. Try to believe it.
Hugs,
Lisa
Wow, Lisa, you posted this right on time for me. I just recently had a really bad setback and my mind has gone berserk with fear. It’s been pretty bad. I am going to print this and read it over and over. Thank you. xo
Thank you for reminding me to stay away from the blame game. It is counterproductive.
It’s so hard Lisa when my neuropathy is getting worse at 11 months out. If I could see things stopping or just improving a bit.
Not only was I floxed on March 13, 2015 and continue to suffer from multiple symptoms, but I am also a survivor of agoraphobia – this is the worst kind of fear. For the fifteen years that I experienced all of the extreme symptoms of fear, anxiety, and panic attacks, no research had been done and it didn’t even have a name until l978. I was completely alone in my terror. Attending a sixteen week (once a week) support class (Terrap) in 1979 with a support person, (my husband), saved my life. I couldn’t have gone on that way much longer; I had become virtually housebound. Having overcome agoraphobia, I know I can conquer any fear or anxiety related to being ‘poisoned’ by ciprofloxacin that comes my way. I am reminded of “That which does not kill me, makes me stronger.” Relaxation exercises, mindfulness training, desensitization practicing, learning assertiveness, were all helpful in my recovery.
Thanks for this reminder, Lisa! Lynda, Congratulations! I, too, suffered from extreme agoraphobia. My boyfriend bailed on me because he didn’t understand why I couldn’t just ‘snap out of it’. My friends saved my life. They didn’t give up on me. I have just gotten so I can now drive myself 5 miles to work, and I managed to go inside a small grocery store (fewer people) this weekend. Each day is a struggle! But, each day is a NEW day!
I was floxed February 7, 2015. One year has passed! A year filled with….fear. Tons of it! And then, even more of it! My constant companion! It filled my days, hours, minutes….fear. Many weeks went by….a few months went by….slowly it subsided. I was getting better! Stronger! Wiser! More informed (thank you Lisa!). Sure, lots of aches, pain, soreness, bitterness, anger…but! lots and lots of HOPE! Hope for healing, hope for energy, hope for strength and understanding. Fear had me broken. No more! My advice to those being held by fear is to stand boldy in front of it and face it head on! We are so much stronger than we know!
Thank you Lisa.
Aloha,
Jan Shields
Sent from my iPhone
Congratulations Sandy; you are a living, breathing example of ‘Face the fear and the fear will disappear.’ We were taught that in my agoraphobia recovery group in 1979. It was a wonderful drug-free approach to overcoming agoraphobia. Believe it or not, there was a lot of laughter in that group as we related our respective stories of the lengths we would go to in order to avoid any situation that would elicit feelings of fear and anxiety. Way to go, Jwinn; all of the small successes that you achieve are very important. During a panic attack, we feel that we are either going crazy or going to die. We agoraphobics are forever thinking ‘What will people think?’ Here is the good news: you will find that as you recover and go forward, you will gain more self-esteem than you ever thought possible.
I needed to read this today. I only had one dose of Levaquin a week ago and the side effects are just awful. It’s totally freaking me out.
Lisa, you literally saved me during the darkest hours of my life 3 years ago. No better yet, but I’m still here and still trying! Thank you!
This came at the right moment. After two years these last few weeks have set me back, I don’t know what I did to cause it. The neuropathy never stops. Fear did set in thinking I’m going to be as bad as two years ago that left me having to use a wheel chair again. But I’m still walking, just difficult because the muscles are getting weaker. But still thankful I can walk.