I’m going through a rough period health-wise. I am not going to say that it’s a relapse of my FQ toxicity symptoms, because it may not be related to my floxing. But I am going to say that I am in a lot of pain right now and I’m struggling.
I’ve been experiencing pelvic (toward the back door) pain for a while. It started a few months ago but it was on and off and I was able to ignore it. A few weeks ago it got so bad that it kept me up all night for a few nights. Then, a week ago, it became constant. Constant, horrible, tightness and spasming in my pelvis. It’s excruciating. Truly, it’s the most horrible pain I’ve ever experienced. On a 1 to 10 pain scale, I’ll give the pain a 9. I’ve never felt pain this horrible, but I’ve never passed a kidney stone or gotten severely burned, so I’ll reserve a 10 for those things. It’s consuming pain though and it really, really, really sucks.
I am pretty sure that the cause of my pain is Levator Ani Syndrome. Basically, it’s a spasming of the deep muscles in my pelvis. All of my symptoms fit Levator Ani Syndrome. My doctor is checking me for other possibilities, but because Levator Ani Syndrome is a diagnosis of elimination I suspect that she won’t find anything wrong with me. (I hope there is nothing else wrong. If this is a sign of colon cancer, or even IBS, both of those are very bad things.)
My pain may or may not have anything to do with fluoroquinolone toxicity. It may be caused by neuropathy of my pudendal nerve, in which case, it may be caused by getting floxed 3 years ago. But it also may be caused by something that has nothing to do with FQ toxicity – like maybe I was doing Pilates wrong and it caused tension and cramping in those muscles. The causes of Levator Ani Syndrome, and most other causes of pelvic pain, are unknown, so it’s impossible to tell whether or not the pain that I’m in has to do with the damage that Cipro did to me.
I was fine. I truly was fine. I was doing really well and living a normal life. This is a bit of a set-back and I’m feeling pretty lousy about it.
This really sucks. Pain sucks. There is nothing okay about constant, horrible pain in my pelvis.
I’m hoping that chiropractic, acupuncture, neurosculpting and mind-body alignment therapy will heal me and get rid of this pain entirely. I’ve just started each of those things. I really, really, really hope they help.
Until I can go through some sessions of chiropractic, acupuncture, neurosculpting and mind-body alignment therapy, I’ve had to figure out how to deal with the pain. The following things have helped me through the pain:
1. Kratom – This painkilling herb has been a life-saver. It gets rid of my pain better than vicodin but without any side-effects. I hate vicodin and other prescription painkillers. Kratom has been wonderful and I am sorry for ever doubting its greatness.
2. Corydalis – Corydalis isn’t as strong of a painkiller as kratom, but it has still helped immensely. It’s on par with the OTC painkillers like ibuprofen and tylenol, but without some of the nasty effects of those drugs.
3. Kava – I’m in a horrible cycle of pain-tension-anxiety-pain-tension-anxiety that spirals and makes every one of those things worse. Kava helps to break that cycle. It has been a life-saver.
4. Sitting on a tennis ball – It helps to relax the muscles that are spasming. It’s uncomfortable, but discomfort is better than pain.
5. Massage – All of the muscles in my lower body have tensed up. Getting a massage helped.
6. Breathing exercises – Breathing deeply, into my pelvis, has helped.
7. Cannabis based pain lotion – The lotion that I got is pretty low in both CBD and THC, but rubbing it on the affected area seems to help none-the-less.
8. Hot baths – With epsom salt – they help.
I’ve tried tart cherry juice, herbal muscle relaxers, meditation and a few other things too. They are good in their own right, but they haven’t been able to touch the pain that I’m currently dealing with.
Other than sitting on a tennis ball, the things that have helped me through this painful time may be able to help others through pain. People have asked me what to do about pain and I’ve always said, “drink tart cherry juice and meditate.” Now I know that sometimes that doesn’t cut it. My pain was severe (and still is). Painkilling herbs have helped. I’m not a doctor and everyone’s situation is different, but kratom, corydalis, kava and the other things listed sure helped me a lot.
I don’t know how I would have gotten through this last week, or faced this next week, without kratom, kava and corydalis. I am thankful for them. But I don’t want to be on them long-term. I want this pain to just go away. I’m hoping that my multi-pronged alt-therapy approach helps. It has to. This current situation is not okay.
If anyone has any other suggestions as to how to get through this, I’d love to hear them.
And to all those who can empathize with my pain – I’m so sorry! It sucks. I hope that you find relief!
I hope that I can get through this quickly and get back to being hopeful, well and fully recovered.
Hi Lisa,
Have you tried John Barnes myofascial release? That has helped me a ton with pain relief. Hope you feel excellent again soon!
Best,
Scott
I’ve had some extreme pains of that kind with no real idea of what caused them or why they left, but they didn’t last near as long as tendon pain. Some were clearly triggered by an odd physical movement while my body was vulnerable. I threw a lot of protein at them in case there was damage, but I was taking just about everything. For tendons the pain comes on after change in electrolyte balance, notably potassium/sodium/magnesium/calcium, and cholinergic/nmda activation of some sort, but I don’t know if that has any bearing on this type of injury. Hope you fix it soon.
Lisa I am so sorry to hear you are having problems. I owe so much to you for all the advice you gave to me when I was first floxed. I wish you a quick recovery. If not for you and the people on this website I don’t know what I would have done. I hope you are pain free and back to normal soon.
Lisa, I am so sorry you are in pain. Just remember that this too shall pass. Bodies do strange things sometimes, floxed or not. Thank you for the wonderful service you do for the floxies out there, with your website, podcast, and advocacy!
Lisa,
Out of nowhere my knees started bothering me all of a sudden. I had a suspicion that Levaquin damaged them(knees were popping) so I babied them for 2 months after taking the drug and after 5 months I started exercising again…doing lunges, squats, etc with no problems. Then All of a sudden last Monday, BAM! Both knees hurting at the top where the thigh muscle meets the kneecap. Essential oils and Epsom salt baths have helped. It’s been 10 days and getting better. I too have no idea if it floxed related but I can tell you I’ve never had knee problems before so I have to believe it is. I was VERY down about my knee troubles cause I am a super active person. Regardless, who wants knee troubles, right? However after reading a floxie story you Recently shared by Phillip I realized that our minds do have a lot of control over how we feel and I decided to start believing again that this too will pass and I will heal. I’ve also found a supplement that has everything I’ve been looking for in one powder mix, joint Vibrance. Reviews have been great so I decided to try it…glucosamine chondroitin, msm, hydrauloronic acid, and collagen.
You are so right in that it is sometimes hard to distinguish between a flox related symptom and something that would have happened regardless. I’ve been having aches and tightness all over since my knees started hurting but if I think back, I had those before being floxed from time to time. I keep a daily log of my symptoms since being floxed…helps me remember how far I’ve come and to also see any setbacks.
Hang in there and I hope you and all of us find relief!! Please let us know how you are doing as you continue with your chiro and acupuncture visits!!
Find a Physical Therapist that specializes in Pelvic Pain issues. A lot of pelvic pain in Women and Men is as you mentioned Levator Ani Syndrome and can do Myfacial trigger point release both external and internal.
Lisa, I had pelvic pain like this ironically just before being floxed. It was this that caused docs to think I had prostatitis, which despite no evidence of infection made them give me cipro. I am certain that I never had an infection and what happened was my pelvic floor muscles went into lock. I absolutely understand how incredibly horrible this is. In case you are still experiencing it, I just wanted to share that my pain ended when I learned to stretch out my pelvic floor muscles in a particular way. Basically, I learned that if I did a splits-like stretch and just held it for a good few minutes, I would feel my pelvic floor muscles around the back door just drop, relax, and the pain would slowly stop (the cramping, spasming and locking would release). I know different people have different bodies and potential issues with this, but just in case this is helpful I had to share. I’ve been there.
How can I buy some Kratom?
What really helped me was taking Magnesium Tautrate 1000 mg in the morning, and Magnesium Maltate in the evening. It really works it relacxes the muscles in my pelvic floor area. I tried sitting on a tennis ball, and that didn’t work forme. Give it time, but it really does work.
Dr sarno healing back pain will save you
I’m sorry to hear about your set back. I to was floxed from taking Cipro for what turned out not to be a UTI. For me I experienced pelvic and rectal pain towards the beginning of being floxed. One of the first doctors I saw was a women doctor who herself was floxed years ago and experienced pelvic pain for months, so I knew I wasn’t the only one. My pelvic and rectal pain was only one of the numerous symptoms I was experiencing (central nervous system issues, connective tissue issues), but it was one of the worst. My doctor explained that the pelvic area is a very complex bowl like structure of ligaments, tendons, muscles, and nerves, that need to work together and if any of them are damaged it can set off a series of problems that can cause chronic pelvic pain. I suffered with it for years, and by that I mean I would wake up with pain and go to sleep with the pain for days, weeks, or months, until, for no apparent reason, I would wake up one day and the pain would be gone. Then come back with no warning. I kept track of my activities, diet, m cycle, but no clear correlation was observable. After spending thousands of dollars on CT scans, ultrasounds, internal and external, being told matter of factly by my ex male Gyno that my only option was a hysterectomy, and trying supplements, yoga, etc. I finally found a doctor who listened and thought it was nerve related, perhaps triggered by muscle spasms in the pelvis. She prescribed a muscle relaxer. I hated taking any medication after Cipro but decided I needed to try something because it was severely affecting my quality of life, and it worked! I only take one pill before bed and I wake up and the pain is gone. Only a few times in a 6 months have I needed to take a second pill the next day. I then can go weeks, months before I feel the pain come back. I hope that as my body heals from the Cipro, I will have fewer episodes of pain. Good luck, and know your not alone!
Lisa, I’m glad you have recovered to the point where you are not in constant pain. I know the journey can be long and hard. I think most people are amazed to learn just how much pain they really can handle. In the beginning I could not sit without a rolled pillow under me. I finally got a special sit support called BackJoy and that helped keep my pelvis from spreading. It was absolutely necessary for the car, and I still use it when sitting on a soft chair or sofa. My GYNO explained that my Levator (a broad, thin muscle, situated on either side of the pelvis. It is formed from three muscle components: the puborectalis, the pubococcygeus muscle (which includes the puborectalis) and the iliococcygeus muscle) had been injured. It hurt front to back and side to side. It felt as if my pelvic floor had been ripped in half and caused contstant pain… just like the transition stage of child birth. That injury happened during my PT for my “back injury” that I had been diagnosed with. So now, not only was I dragging my leg around while using a walker… I had to deal with this horrendous pelvic pain that was just as bad or worse. It took ME two years before I realized that I had been floxed. No doctor listened when I said it was not “just back pain”. I let them do one epidural for pain and got no relief. I’m very glad I did not have back surgery. I got through this because I was so angry and determined. I had to come to terms with my pain and “own” it, not letting it control me. I am stonger now because of this and appreciate all that my body can do!
Lisa…. I just noticed you are in the Denver area. I live up by Fort Collins and wonder if you know of any Functional Medicine doctors that you can recommend. Also do you have any thoughts on MTHFR gene variants and doctors that might assist in that field? Thanks
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