Recently I wrote about differences between those suffering the side effects of Fluoroquinolone antibiotic toxicity and those who aren’t. While I mentioned a number of side effects I talked mostly about fatigue and recovery time from physical exertion. One of the adverse effects I didn’t discuss in detail is the myriad of different pain syndromes. I mentioned chronic unrelenting pain but that description while accurate doesn’t do justice to the layers upon layers of pain many of us suffer. This is my attempt to describe the pain we endure in a manner our loved ones will understand.
As a normal I’ve known pain in various forms and thought I had a good grasp of what pain is. Before this antibiotic devastated my health I had enough instances where I was hurt to believe I knew pain and knew it well. I couldn’t have been more wrong. Prior to Cipro I had my nose broken when I got kicked in the face by a horse. A week later a horse threw his head and caught me in that same broken nose displacing the fracture. My old mild fracture in my back that I mentioned in Floxies vs. Normals Part 1 caused sciatica all the way into my foot. I’ve always been active and as a result endured my fair share of mishaps and injuries, and I had a couple car accidents. In one I lost control on black ice and rolled my car. BUT the thing my injuries had in common was that I healed. When I fell off a ladder working on our house I healed. When I slipped on ice and hurt my tailbone I healed. I got some good bruises skiing but I always healed. Then I took Cipro.
Cipro sent me head first into the upside down world that is floxing. It’s here that I learned there are levels of pain I never thought were possible. I’d been through surgery before. I’d suffered broken bones before. I’d sprained ankles and popped fingers out of joint before. I’d suffered chronic back pain before. I’d had migraines before. But nothing prepared me for what I was about to endure. The types of pain from nerve pain, to muscle pain, to tendon and joint pain, to pain from hot and cold temperatures (yes this can be quite painful), to pain from pressure, and pain from bones popping out of place, and headache pain that made prior migraines pale in comparison.
In the alternate universe of floxing there are all kinds of pain I’ve come to experience. Nerve pain in all its many forms; stabbing, burning, shooting, debilitating, numbing and the neuropathy I have in my feet 24/7. My feet are like ice and this radiates up to my knees. They are sensitive to pressure of any type. Wearing socks with ridges or bands that constrict? No thank you! Most shoes are uncomfortable. It’s difficult to find shoes with a cushioning insole that don’t press on the tendons and as for going barefoot? Heck NO! Just a small pebble or rough ground can be painful. The stabbing nerve pain when it hits can literally drop me to the ground or cause me to lose use of a limb, finger, hand or foot until it passes which can take seconds or days. There is no apparent rhyme or reason to these nerve pains in their variety of forms. They can and do come and go on their own schedule.
Then there’s muscle pain. I’ve had contusions before but this is nothing like that. At one point when I suffered severe muscle wasting known as rhabdomyolysis my muscles themselves were breaking down. I literally saw my arms and legs shrink by half and my skin hung loose like an oversize sweater. This happened in a matter of months and was so dramatic my family members commented on it. But the pain was something else entirely; my cat who is very petite would step on my legs and the pain… Dropping something as light as a plastic cup on my foot would bring tears to my eyes. My husband squeezing my arm or leg with affection would cause pain and the deep tissue massages I loved became unbearable. In addition my badly damaged muscles cramp severely with mild repetitive use such as coughing 5 times as opposed to once. This seemingly benign action can cause painful spasms in my abdominal muscles. Again this should not happen and yet it does. This is a whole new world of pain.
Tendons are known to be slow to heal but when taking a medication known to cause tendinitis and tendon rupture (see package insert) it takes on a whole new level. As these antibiotics cause soft tissue damage I’ve suffered two labral tears. One was in my hip and another in my shoulder. Both occurred while sitting. In the instance of my hip I bent my knee up to my chest. As a flexible person this shouldn’t have injured me. Not realizing the damage these medications had done I had surgery to repair it. My tendons and ligaments were stretched to do so. Big mistake! For years after my hip would slip out of place and became so unstable that walking became difficult and painful. I opted not to do anything for my shoulder and I’m glad. I’ve popped ribs out coughing, the plantar fascia in my feet/heels hurt all the time. My ankles are so bad they don’t bend to go down stairs. I can’t kneel on my knees and my fingers don’t work. I struggle with utensils due to tendons that don’t move properly. As for joints my knees, ankles and hips are the worst but my shoulders, elbows and wrists are problematic and let’s not forget spine issues with bulging discs (Degenerative Disc Disease) and back pain. There’s more but I’m sure you get the idea. Most normals that have a joint or tendon issue have it localized to one spot but not floxies. We tend to have it throughout the entire body to varying degrees.
Migraines before were painful. Migraines after are devastating and debilitating. The one I got while on Cipro was the most intense thing I’ve ever experienced. I’ve never had meningitis but the pressure and pain in my head was so excruciatingly painful that I can only imagine it must be similar. I’ve had infrequent migraines my entire life but the floxed ones truly devastate my body leaving me so weak as to be unable to function at all. There is no comparison.
Then there’s emotional pain. To go from being normal with an infection, taking medication, and becoming physically disabled almost overnight takes a toll on even the strongest person. Imagine having the flu; we all know how awful the flu makes us feel. Usually it lasts a week and we spend that time in bed just trying to get through it with the help of a loved one. Now imagine having the flu last for months and years on end. It might get a little better for days at a time or even a few weeks and then something brings all your symptoms back. Imagine it never ending. You do your best to put on a brave face and you try to function but your symptoms never let up. (Again some floxies do recover!) Can you imagine the emotional toll and the pain from taking a medication to alleviate illness and becoming chronically ill or disabled as a result? I can because I’m living it but I ask you to consider how you would cope.
I recently read an article on “smiling depression”. I’d never heard this term before but it’s about people suffering from depression that put on a happy face and go about their daily life while the people closest to them never know the true extent of their suffering. This description struck home with me as I think it would with many floxies. I think this concept can be aptly used to describe our pain. I have smiling pain. I rarely discuss it unless it’s severe and I spend my days ignoring it because acknowledging it would also validate it which I refuse to do. Instead I visualize putting my pain in a box, tying it up, and placing it on a shelf in my garage so it’s out of my house and out of me. This is one of my coping mechanisms for these different types of pain that we deal with.
The life of a normal was difficult at times but also wonderful. Yes I knew pain before becoming floxed and thought I knew how to treat it to recover and heal. The pain I live with now is something out of a science fiction novel and if I wasn’t living it I wouldn’t begin to be able to understand just how thoroughly debilitating it is. Unfortunately I know firsthand exactly what it is as it never leaves me. It’s my constant companion through good days and bad. The bad days can be extremely difficult as they can leave even the strongest person desolate. So for the normals I once again ask for your compassion. We didn’t ask for this. We trusted the medical system and now our reality has changed so that every day is a struggle. We struggle to be okay. We struggle to function. We try to greet the world the way we used too and we pray. We pray for help. We pray for healing. We pray for a day off from the pain we endure. We pray for relief from our symptoms and do all that we can to restore our health. Some of us are lucky enough to find a way out of the upside down but for those of us still struggling we ask that you remember to be kind and understanding of our fragility. We ask for your help and sympathy while we fight through our pain every single day.
Thank you for your compassion and God Bless all of you.