I encourage every person who has been hurt by fluoroquinolone antibiotics (or any other pharmaceutical) to tell his or her story.
Telling your story of pain caused by fluoroquinolones can be cathartic and relieving. In writing your story, you are saying to yourself and others, “My pain is real. I was hurt by a prescription drug. It happened to me. Listen, because this is important.”
These stories ARE important! Patient stories are important for advocacy, for warning others, for changing minds, and more. The world will be a better, safer, place if physicians and patients alike are aware of the adverse effects of fluoroquinolones and all other drugs. Patient stories help people to understand the severity of adverse drug reactions, so that they understand the real risk associated with each prescription drug. Neither our doctors nor our friends are psychic, and they need to be told about adverse drug reactions in order to understand them. True stories about the effects of fluoroquinolones on individual lives vividly illustrate the risks of these drugs—much more than studies, or data, or warning labels.
Patient stories can also help researchers to understand the real-world effects of pharmaceuticals, and the direction that a researcher chooses to look can be influenced by patient reports and stories.
Because patients reported their symptoms to the FDA, the warning labels for fluoroquinolones have changed to note that peripheral neuropathy is a potentially permanent side-effect of fluoroquinolones. Patient reports and advocacy also led to the November 5, 2015 FDA meeting where the Antimicrobial Drugs Advisory Committee and the Drug Safety and Risk Management Advisory Committee decided that the current warnings on fluoroquinolone labels are not sufficient. We still have a long way to go, but it should be acknowledged that patients, and their stories, are driving the FDA to action, and that is quite special and unusual.
Reporting Fluoroquinolone Toxicity to the FDA
Please, even if you don’t tell your story to anyone else, report your adverse reaction to the FDA. Instructions on how to report your reaction to the FDA can be found here – http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm.
Telling Your Story of Fluoroquinolone Toxicity on the Internet
If you would like to tell your story on a web site, there are a few options:
- I (Lisa Bloomquist) manage the web site, fqwallofpain.com. If you would like to share your story of pain caused by fluoroquinolones on www.fqwallofpain.com, please Contact Me.
- Tami Lucas manages the facebook page for The Fluoroquinolone Wall of Pain. You can contact her through the facebook page. (Yes, there is quite a bit of overlap between the facebook page and fqwallofpain.com. Tami and I collaborate.)
- You can submit your story to http://www.fluoroquinolonestories.com/. There is a “click here to submit” button on http://www.fluoroquinolonestories.com/.
- You can post your story on http://www.hormonesmatter.com/. Several people have written about their experiences with fluoroquinolone toxicity on Hormones Matter. Here are some examples: Fluoroquinolone Neuropathy Feels Like Acid Burning and Electrocution, From Fluoroquinolone Reaction to Glabrata Infection, and Now, Lyme Disease: A Medical Nightmare, The Doctor Said Not to Worry About Levaquin Warnings, and more. Information about how to submit your story to Hormones Matter can be found on http://www.hormonesmatter.com/write-for-hormones-matter/.
- You can start your own website or blog. Many people have told their stories through their personal websites/blogs. Some of those sites can be found on https://floxiehope.com/fluoroquinolones-links-resources/. The more, the merrier! I created floxiehope.com through www.wordpress.com. I had no idea what I was doing, and it turned out alright. If you are interested in starting a site but are intimidated by not knowing how to do it, I suggest starting with wordpress.com. It’s pretty easy.
The Fluoroquinolone Effects Study
Please, please, please also tell your story to the researchers who are conducting the Fluoroquinolone Effects Study. The Fluoroquinolone Effects Study is being led by Dr. Beatrice Golomb and it is through UCSD. The Fluoroquinolone Effects Study is a chance to tell your story in your own words to scientists who are studying fluoroquinolone toxicity. More information about the study can be found here – http://www.fqstudy.info/Fluoroquinolone_Effects_Study/Welcome.html.
Media Coverage of Fluoroquinolone Toxicity
Hundreds of people have spoken out to the media about fluoroquinolone toxicity. Thank you to each of you who told your story! I encourage all of you to reach out to the media, because even though many of our stories have been told, many more are needed. Write letters and emails, call your newspaper editors and tv reporters. Please do whatever you can to amplify your voice when telling your story.
People are Listening
People are listening to our screams and our stories. I regularly hear from people who say something along the lines of, “I requested a safer antibiotic because I heard from you that Levaquin is dangerous.” I hear from doctors, nurses, pharmacists, and other medical professionals who are getting information about fluoroquinolone toxicity from Floxie Hope. The number of people in The Fluoroquinolone Toxicity Group on Facebook has increased steadily to almost 5,000 people. Many of those people share information about fluoroquinolone toxicity with their friends. The word is getting out, and that’s a very good thing!
Thank you to all of you who are telling your stories of pain caused by fluoroquinolones! These stories are important, and I even think that it’s healing for you to tell your story.
August iaboni email augiejiaboni@gmail.com
Coping with Nerve Pain, Tingling, Weakness, Depression
written originally August 2003 (updated September 2007
Coping With Peripheral Neuropathy: How to handle stress, disability, anxiety, fatigue, depression, pain, and relationships
. I cannot even have a normal conversation with people because my body feels like it’s ready to explode. Nothing has helped me. I am suffering in misery as of 2003
. I have suffered with chronic pain and stiffness since 2004 due to . My condition worsened. In 2006 I was diagnosed with neuropathy polyneuropathy more than 1 nerve damage in the central never stems ), stenosis by 2008 received disability thank you God I was running out of savings 2009
As of September if 2012 I am a mess. My arms burn inside like they’re on fire. My backside I have agonizing toothache-like . sharp radiating, stabbing, pain all so down my right leg and right arm. I am sad from the medications. I fight depression on a daily basis. I hardly ever have the motivation to do anything anymore. I feel bad about myself. I don’t want to live like this. Yet I find strength I don’t have a social life, at all. I can’t . Be around people because I am so irritable. People understand. The panic when I tell them how messed up I am, like they need to do something but don’t know what, so the feel bad for me . This is hell on earth I assure you. There’s nothing that anyone can do to help me. No one seems to care. Most-doctors don’t understand that pain, I am going to explode with tension), and nerve damage—can cause a person to become depressed, irritable, have mood swings, fatigue, anxiety, and a feeling of utter hopelessness and of being overwhelmed I went through all of that. I lost my ability to work. My quality of life . I lost the desire to have fun alone without a soul in the world by my side. I wanted to scream , and would have if it weren’t for my faith in God.
I don’t understand life at times, but I do understanding (that only comes from casting all my cares upon the Lord. I pray for the Lord to help me
look normal, but I feel burning from head to toe at times, sharp pain radiating down the entire backside of my body. Both of my arms feel puffed-up, but my right arm feels twice it’s normal size. My right leg feels half-asleep all the time. My backside feels like I have agonizing toothache-like pain in the bony area of the backside with chronic tension. My backside pain radiates into my back area and make it them feel sore. The backside pain by itself is absolutely debilitating, making me want to die and go to Heaven. I take 30 mg oxmorfein 2 times a day 10 mg oxcodine 2times Gabapentin 300mg 3 times a day metaxalone 800 mg 3times a day lyrica 150mg 2 times a day duloxetine hcl 60mg one time a day folic acid 1 mg daily and praise God for it, because without it I cry in pain and cannot survive. Yet the medications adversely affect me.
How in the world am I supposed to enjoy my meal, carry on a conversation, and live normally? I try, but my body is afflicted. I live alone because of all this, and it is lonely often. It is my burden, the cards I have been dealt in life, and I can only cope daily with God’s help. The legs arms backside pain is so bad as I am typing, which is why I am typing, it helps me to preoccupy my mind. Why do you think this website is so long I’ve had increasing horrible pain in both hands lately.
If you are suffering from neuropathy, stenosis, and radiculopathy like I have been since 2004, my heart goes out to you. I do understand. I have no real social life because of my bodily afflictions. At times my condition is bearable, and at other times unbearable truth, fighting against tyranny and corruption, and defending liberty and freedom.Thank you for those who pray for me regularly I love you all in the Lord whoever you may be!
I ask for the continued prayers of my web visitors. I’ve felt overwhelmed lately from my health afflictions. I saw the picture to the left and immediately my mind said, “That’s it! That’s exactly how I feel inside my body. That’s it!” Peripheral Neuropathy is a horrible thing to suffer, which causes daily spasms of burning throughout my nervous system, intermittent sharp radiating pain in my arms and legs, aching pain from head-to-toe and overwhelming fatigue that causes me to have to take some medications and rest. In my bed amount 24 hours a day
I’d love to go places but due to my afflictions. I am not a by nature. I went out to eat last night, which I do. I asked if I could sit on the outside,sit because of my suffering and didn’t want to be feeling pain around people. The burning, tingling, pain and backside tension in all overwhelm me at times, as last night. I have a noticeable backside pain when I walk or sit down If I walk for a while it’s not as noticeable.arthritis-in my hip I will get a operation in March. Or April 2016 It’s when I sit down and then get back up that my leg backside harms and hands do not want to move.
I ordered a turkey and cheddar sandwich with some potato soup. I ate the soup and only half of my sandwich. I just didn’t feel too well. I felt like crying. I tried to shift in my chair due to the radiating pain from my backside down my right leg. It feels like a razorblade is passing across my nerves (from my shoulders down my right arm and leg) into my finger and toe. And then there’s the chronic tension inside my feet which feels like the backside is being ripped out. It never goes away. It feels like a golfball is stuck in my backside for the constipation , ready to burst out. I have constant toothache-like pain (where the bone is located in backside )which radiates into my arms area. The other night it felt like a knife was stabbing me down side of my legs my right side feels sore all over continually. The pain radiates from my toes upward. Makes me irritable understandably. If that wasn’t enough to endure, then there’s the burning, tingling and both of my arms feeling like swollen air-bags all the time I am trying to get a scooter I need extra money
I just have to be careful not to allow my sufferings to overwhelm me with grief and depression. I have a ministry of suffering.
People sometimes get nervous when they sense that I’m suffering, because they don’t know what to say or do. There’s nothing they can do. I used to try to break the tension by telling people that I have Peripheral Neuropathy. I said that one day and a married couple in their 50’s literally took two-steps backwards. That hurt. I don’t have Bubonic Plague! They sincerely didn’t know what that term meant, so I don’t use it anymore. So then I started telling people that I have a damaged spinal cord, but that freaked some people out. So now I just tell people that I have a messed up never damage This is betteThese are heavy burdens I carry, but the Lord promised that He wouldn’t give us more than we can handle
in my life, Like a pregnant woman in travail, I had so much to tell the world. My problems started in March of 2003 At that time my website was still very small but by the end of 2013 this website took off and hasn’t stopped growing in popularity since
(as infamous or famous as it may be). I have found out about
The devastating pain that I went through in one week than I had for the entire years of of my life combined. God! given me a voice to preach the truth in cyberspace. It could end at any time if it be God’s will, but you have no idea who is listening and but There are so many suffering people today. You can see it on their faces. They need answers, but all they’re getting is garbage from government, pharmaceutical doctors who only want to make money . I heard Even when a wicked person is trying to harm a righteous man, the righteous man is ready to fight
In pain August iaboni please call my email.
Go on from here Chronic Inflammatory Demyelinating Polyneuropathy
I was prescribe ciprofloxacin 500 mg for 14days after a kidney stones ,10 days in I started tasting metal went to brush my teeth to get rid of the taste to see a white tongue and extremely weak could hardly walk up stairs !So I returned to the hospital and the Doctor in the ER said to quit taking the cipro I was having a allergic reaction !So I returned home and lived on the sofa since I cloudnt make it up stairs !few weeks past I made it upstairs and fell in the stairway tearing my bicep and tendon apart from grabbing the railing !!Back to the hospital 14hrs later otherpic surgeon said there nothing wrong a slight tare !So I was prescrib physio !!Finally I thought for a second opinion on my bicep and found another orthepidic surgeon within 30 seconds of looking at the ech graph the Doctor said I had no more tendon and no more bicep !!the first misdiagnosed me,A year later still get tired out fast and then my tongue turns white and the extreme fatigue hits !!In June 27 2016 had my tendon surgically re attach by using a Achilles’ tendon gained 40 to 50 lbs tired all the time tendernitist in both wrist ankles ,Plus nerve damage in both lower legs makes it hard to walk when flare ups hit !!!Im 47 was a crane and equipment operator talk about a event that make a person fell like the have no human value !!One year with no right hand now going on a second year no right hand and healing all over again !!!Im right handed
Can some one please tell me or tell me where to go to get my answers. I took copro years ago and had a sunsensitivity reaction. Decided it was allergic and no more. Years later I decided it was just a side effect and tried levaquin. I watched for side effects but had no idea they continued after stopping. Only took two and just had tingling in my anterior legs. All my other symptoms were posterior. But it didn’t stop there. Cramping and pain in legs . Peri feral neuropathy in feet. Spasticity in hands and feet. Electrical charges in am that attack my knees calves and back.I have done my supplements and everything I read. I tested for Floride in blood and urine. It was negative. This is month 2. I was doing much better yesterday day only a tiny buzz in the back of my right knee. I’ve had bladder cramping for 9 weeks. Finally got seen told to take cefnidir which I have taken many times with outside effects before leqaquin then Amox forever. Everything I read said they were ok but last night I had stomache pain that resolved and this am woke up to a raging Levaquin attack that was electrical shocks everywhere below my waist knees calves full back of legs back. I was afraid to move. Now everything just aches and spasms. I’m so dis appointed . Probably no news to you all. What happened? Did I misunderstand about these antibiotics?. I obviously can’t take them for now but when? How will I know? This really scared me. I thought I had made it out. Couldn’t find a site to send questions. Please forward this to the right person if you know who that is. I’m riding blind. Thank you very much.