Permanent

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I really appreciate that the FDA has put the word “permanent” on the warning labels of fluoroquinolones.  “The nerve damage may be permanent” is now stated under the peripheral neuropathy section of the side-effects listed.  Permanent.  Physicians may take note; they can do permanent damage to their patients with these drugs.  It may make them think twice.  It may make them realize the severity of the adverse effects of fluoroquinolones.  They may see that they can do damage with these drugs that they can’t fix.  Permanent damage.

While it is wonderfully validating to see the words “The nerve damage may be permanent” on the updated label for Cipro, there’s a part of me that hates that word – permanent.  It’s a word that steals people’s hope.  It’s a word that feeds into fear, hopelessness and suicidal ideation. It’s a word of doom.

You are not doomed.  There is nothing about you that is permanent.  Nothing is permanently damaged.  Nothing is permanently perfect.  We are all in a state of flux, all the time.  Sure we’re all decaying a bit, it’s the nature of living things, but we are also growing and healing.  People recover from this.  They do.  I did.  Lots of other people have recovered too.  There are stories of hope and healing on this site.  Sure, it’s not a huge number of stories right now, but the site has only been up for a couple of months and, well, the people who have healed have moved on with their lives.  If I may be so audacious, I would say that MOST people recover, with time.  It’s a really long, rough, painful, scary road, but people get down it.  People get to the end.  They recover.  I hope that you can find the strength to believe that you will recover too.  If you can’t find that strength today, I hope that you can find it tomorrow.  Because this life is worth fighting for.  Not only your health, but your hope and your spirit are worth fighting for as well.

As someone said in one of the fluoroquinolone victim support group sites, “no side effect can be proven permanent until you’re dead.”  True.

So hang in there folks.  I know that it’s a trite thing to say, and I apologize for that, but I mean it.  Just take one breath at a time.  You can get through this.  Bayer and Johnson & Johnson may have kicked you, but they didn’t kill you.  You’re still here.  You can recover.  Have hope.  Try.  ‘Cause it’s only permanent if it kills you, and it didn’t.

 

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12 thoughts on “Permanent

  1. Austin October 12, 2013 at 10:23 am Reply

    I am living proof that this is not permanent. I am almost 3 years out and if not for a knee problem (began before Cipro but was not able to rehab it at the time) I would consider myself about 95% back to normal- minus the occasional flare up, which I believe to be nerves healing since they do hurt when “turning back on”. Speaking of knee issues, does anyone on here have any experience with a surgery post-floxxing? I just want to know what to expect if I decide on knee surgery. I drank alcohol about a year ago, which aggrivated my symptoms, but that resolved after a few weeks. Just wondering how anyone has reacted to anesthesia or just surgery in general.

    God Bless,

    Austin

    • Lisa Bloomquist October 15, 2013 at 12:43 pm Reply

      Thank you for sharing your hopeful note about your 95% recovery! If you would like to share a story on here, I would love to have it. Please feel free to contact me through the “contact me” link on here. I try to be good about responding.

      As for your knee and the possibility of surgery, do you participate in any of the Facebook floxie groups? That would be a good question for people on there because I honestly don’t know the answer. I certainly would try everything else before going under the knife, but sometimes you have to do what you have to do. I’m sure that someone has better advice than that. The FB groups are my suggestion for where to post that question.

    • Bet November 18, 2017 at 2:32 am Reply

      Hi. …I m suffering of Neuropathy all over my body with severe pain…..I m 4 mounths out of Cipro and I m really scared it could be permanent….any advice?What’s your story?thanx

  2. Calista October 14, 2013 at 8:27 am Reply

    Thank you for this post. I’m 8 months out and have the neuropathy in my left arm. It is very depressing to think that this will be permanent. So, for most people, you are saying this does eventually heal? I also have joint issues in my hands (like arthritis), my knees and hip. I’m an athletic person so this has been very hard for me… not being able to run and do the things I used to enjoy.

    • Lisa Bloomquist October 15, 2013 at 1:00 pm Reply

      Hi Calista – I’m sorry for your pain! It really stinks, to say the least, to go from being athletic and active to not being able to do the things that you love to do. I honestly do believe that most people heal with time. Sometimes it takes a long time. I wrote my recovery story 18 months after I got floxed. Some people recover more quickly and some people take more time. Some people, sadly, don’t recover. But most people do. They move on with their lives and are okay. My advice is to be careful, you certainly don’t want to tear a tendon, but try to move as much as you can while being gentle. Swimming, pilates and walking helped me immensely. I can run, but I don’t. That’s okay though – lots of people don’t/can’t run. If you can find joy in more gentle and easy physical activities, I think that they’ll help you. Remember – tomorrow is a new day. I hope that tomorrow is better than today and that that pattern goes on infinitely. There are stories from people whose pain just goes away one day. That’s possible. I think that for most people, it just gradually gets better and better until you feel normal again. Stay hopeful. From what I’ve seen, almost everyone sees some improvement with time.

  3. Linda from Boston October 18, 2013 at 11:15 am Reply

    How does anyone recover. 9 years and no better. What am I doing wrong. No gluten, dairy alcohol etc.

    • Lisa Bloomquist October 21, 2013 at 1:00 pm Reply

      Hi Linda,

      I am really sorry that you’ve been going through this for 9 years and that you’re not feeling better! I wish that I had an answer for you. I wish that I knew why some people get better but others don’t. I wish I knew why, just for example, iron supplementation helped me but other people have iron levels that are too high and it would hurt them. I wish I knew why this hits some people but not others. I wish I knew why some people take 8 weeks to recover and others take 8 years to recover. I wish I knew. I’m sorry that I don’t have the answers. I hope that there are some helpful, healing tips in the stories on this site. It’s clear from reading through the stories that everyone’s journey is different. I do think that most people do find recovery with time. I hope that you find some things that are helpful and that you find healing, peace and happiness. I’m sorry for being trite. If I had an answer, I’d give it to you, I promise that I would. I think that healing activities, little things like listening to music, getting hugs, sitting in the sunshine, laughing, etc. are helpful and that they will make your life better, even if you don’t feel better. I suggest them. I wish that I had more. You have my thoughts and prayers, for whatever they’re worth.

      Best regards,
      Lisa

  4. Ruth Young July 10, 2014 at 4:36 pm Reply

    Lisa,
    This article was really helpful for me right now! I fear that my age and the fact that I had a history of mental illness prior to Cipro might mean I’m kind of stuck with a damaged CNS. We always think of depression as being caused by not enough serotonin. But what if it’s structural and not chemical? What if the intractable insomnia that is my main symptom during a bout of depression is a sign that I lacked the normal number of GABA receptors to begin with. It would explain why years ago other kids in the Wisconsin Dells in the summer could work 120 hours a week almost effortlessly and 60-70 just about killed me. If I work too much I get unable to wind down. That’s why I work part time or PRN. When things build up on me, I just don’t take a gig for a little while. I know that’s not normal, but I’ve been able to be functional. Then along comes Cipro and further downgrades my GABA receptors. Can a CNS that wasn’t functioning optimally heal itself? Or will I be even more limited now? Perhaps I’m learning ways to deal with stress that will help me to be able to work more than I could in the past. Perhaps my CNS will fully recover, or because of the supplements I’m taking be even better than before. Or perhaps I’m stuck with the damage and my symptoms will cycle for many, many years if not forever. Any of those outcomes are probably equally possible and no one but God knows which it will be.

  5. Janet September 1, 2014 at 3:49 pm Reply

    As many know I had about 400 or more cipro with a lot of damage along the way and I still led a good life low level. no severe pain but a lot of fatigue. Now I was given 4 scripts of levaquin back to back and my nerves blew out. It is over my entire body 247 and pounding heart. A lot of the rest did heal which surprises me. I still could have a life if the all over stinging and pounding heart would stop. I am tortured 247 plus all the cns issues, panics, brain shakes etc.. I am only here now to tell those that some can heal.. I hold very little hope now as it has been 3 years and no change in the nerve issues which is just too severe to even try and live life stung over the entire body.. I really don’t know where this will go.. I only hope even though I know how horrible nerve pain is. I would BEG to have it in my hands or feet only as the entire body including face is not doable. I am now begging for a miracle to help hold on.. . Yes many can and do heal. I did, and still lived a good life and had two wonderful years with my husband. I feel they literally murdered me and I wish I had put it together before the last script blew me out.

    • Lisa Bloomquist September 1, 2014 at 4:17 pm Reply

      I really wish that the tolerance threshold issue for these drugs was realized, Janet. To give you that much Levaquin, on top of that much Cipro, is criminal. I’m so sorry for all of your pain. I hope that it gets better. Hugs to you.

  6. Janet September 3, 2014 at 8:04 am Reply

    Oh I surpassed my threshold years ago, I had a lot of cipro damage but just pushed through time after time. I just did not put it together as my responses were ALWAYS delayed by some time.. If I had ONLY known, I thought I had cfs and a messed up body.. YEARS of suffering but Nothing will ever come close to this. I guess the thought of healing my nerves over my entire body is nothing short of miraculous now if I can hang on..it is not looking good after 2 years as has never gone away even for a day which would have been a good sign.

  7. Janet September 3, 2014 at 8:05 am Reply

    could I talk to linda from boston? rykerjem860@outlook.com

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