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.
Lisa,
I am so sorry you’re going through this. I am very familiar with pelvic pain. I had PID many years ago and was treated with 2 weeks of IV antibiotics. I swear it never truly went away and I would periodically go through times where the only thing that helped was an icepack on my pelvic area. When I was floxed it seemed like there was a flare-up of the PID. There were days when my pelvic area was in excruciating pain, just thinking about it is bringing up ghost pains. I hope you can resolve this issue, and in the meantime I wish you felt better.
Hello Lisa,
I am sorry to hear about this!
In addition to the “normal” lower leg and biceps tendon in shoulder pain associated with being floxed I have had some crazy ones that I also attribute to levaquin.
However, there are also issues indirectly caused by having had been floxed. I am not nearly as active as I used to be (because my tendons won’t let me). This means my life is somewhat sedentary meaning I sit and lie a lot creating back problems etc.
Anyway, I have had sciatica for 6 years now in addition to tight and sometimes spasming pirifirmis and glute medius. This then causes back problems etc.
in general I can say that my tendons and joints (vertebrae too) are easily strained (massive neck problems due computer and phone work – never would have happened a couple of years ago)
Anyway, I empathize with you and hope that you can figure it out. If the tennis ball helps (I use a lacrosse ball), I think there is hope for immediate relief (not recovery perhaps but relief). I take a hot bath and then do ball and roller work which helps both shirt term and, with regular use, long term.
You are so informed, I doubt any if this is helpful except for me to say, I understand and feel for you.
Hang in there!
Ian
Hi Lisa,
I have had that pain about once a month since being floxed. Sometimes more sometimes less. My doctor told me it was “proctalgia fugax” and not related to being floxed. It happens mostly at night sometimes day. He told me the best thing is do is relax and maybe massage the muscles. Hang in there and God bless.
Troy
Hope you feel better soon! . 🙂 sounds a bit like cpps.
I am so so sorry for you Lisa. Hope you will have a quick healing! Don’t forget you got better from floxing. I think a floxie can truly overcome anything! Hugs, XX
So sorry to hear of your recent setback. I would urge you to try weekly massage. Before being floxed, I suffered from recurring back spasms which were extremely painful. In fact, once the spasms would set in, they would be nearly impossible to release unless I took a strong narcotic & xanax “cocktail”–dangerous stuff. After the floxing, my back was the least of my worries! Having said that, what I have found to be true for me over the last three years is that having massage on a regular basis has taught my back (and other body parts) how to relax again. It is rare for me to resort to the “cocktail” because the massage, over time, has really allowed me to relax in a way that I had long since forgotten. Since you are in an acute stage of pain these days, additional emphasis on massage may just help your muscles to re-learn relaxation. You do so much for others and I am just really, really sorry to hear of this most recent challenge. Sending healing thoughts your way!
Lisa
I’m so sorry to hear about you’re pain. I hope it’s not a relapse and more of a “just because”
I was 3.5 yrs out doing great when my relapse hit. Just never thought I’d ever be in this place again. I felt like I was improving until last week I tried magnesium flakes. It’s really set me back.
I will be praying for you Lisa. That it has nothing to do with fqs and you’re pain will pass soon.xxxxxx hugs
I had bad pelvic pain with my pregnancy for a few weeks. I was resolved to wait it out since the Internet said there was not too much to do. However, I bought a big pregnancy body pillow and started sleeping with it between my legs. The pain that kept me from walking normally to the kitchen went away in two days. I had already slept with a pillow prior to this, but I’m guessing it wasn’t big enough.
I imagine your pain is very different, and certainly from a different cause. But maybe try sleeping with two pillows between your legs for a couple nights. You never know.
Lisa, I just read your post …I am so sorry you are experiencing such pelvic pain…Hopefully you will find some answers as to why, and some of the treatments you mentioned will help you to heal…Thank you for sharing your tips on what you were doing and what you have found helpful for your pain….I am glad to hear you were able to get some pain relief from Kratom…It also continues to help me a lot more than other things I have tried, and for that I am grateful…I hope you start feeling better and soon on the healing road to a full recovery…..
Dear Lisa,
Very sorry to hear that you have been enduring this pain. I realize that this suggestion may appear futile but I sincerely think you should take a “Magnesium Chloride Bath”. The bath flakes (not magnesium sulfate, as it will not absorb as well as the chloride” Pain and inflammation are often the absence of adequate intracellular magnesium needs. Oral supplementation will not address those needs either. I have posted a lot about this lately, and you may not have read those…but in case you have not….Ancient Minerals is the brand that I have used successfully, it is free from heavy metals, pure, and they also have Magnesium Oil which is more concentrated, for topical trans dermal use as well. It is very easy to become deficient in magnesium if not receiving daily replenishment. The area that are an issue in our bodies will become very evident when the deficiency exist. You have nothing to lose and much to gain by replenishing this mineral. The pain/anxiety….stress cycle also speaks to the low intracellular magnesium. The nervous system, ATP energy of in the cells, calcium calcifies without adequate magnesium all over the place. There are literally so many processes and enzymes that are reliant on this mineral….and we all know how these drugs have effected magnesium…..the most recent studies show that magnesium is tied to 700 processes in the body. Significant player in the electrical system.
Ancient Minerals is great for buying the flakes, and oil…..I eventually made my own spray which has been a Godsend. When i had stopped using it….eventually I did worsen after several months and did not see the connection till a year later….and than instinctively returned to daily usage along with my oral intake of ” Natural Calm” magnesium citrate…which is also helpful….but did not and cannot address the intracellular needs.
God Bless,
Rene
Lisa, so sorry to hear this! You will get through this as well, I have no doubt. Please consider looking for someone that offers Somatics in your area. I saw a Somatics teacher for my neck and she ended up re-aligning me in all areas of my spine and hip. If you can release those muscles in that area, it may help with relief. Praying for you to get through the pain and find healing!
Lisa,
I am so sorry to hear that you are going through this. It might not be flox related at all, but if it is, I second everything Rene said. I have always been a big believer in magnesium being the key to the whole flox thing. I know chelation of magnesium is not the only way FQ’s damage us, but if you don’t deal with the intracellular magnesium deficits nothing else can really heal, and we risk relapsing. Since you aren’t having any other flox symptoms, it should be easy to increase your magnesium intake, both topically and orally. I do think early in our floxing tolerating magnesium can be difficult, since a damaged CNS will give a paradoxical response to anything but the tiniest amount of supplemental magnesium.
Work with a good physical therapist and push the magnesium, and I think you’ll overcome this in no time. Getting more active (as you are able) and standing more are probably not bad ideas either. If it is related to floxing at all I would guess it’s a lack of magnesium issue. In that case, it could be a blessing in disguise, because you have been alerted to something your body needs. There are many problems that can arise from intracellular magnesium deficiency.
I know we hate it when people say it, but sometimes our aches and pains are just related to getting older. It was in my mid thirties that I noticed I would get very, very stiff in my hips if I wasn’t active enough. I was in a significant amount of pain while going through the PTA program until I got to my last clinical rotation and started pushing people in wheel chairs around a nursing home, running around getting patients, ambulating patients, demonstrating exercises, lifting people– suddenly I was pain free. I went from being in such significant pain that it was a constant distraction while trying to study, to being pain free in a matter of a weeks. I think when we’ve been very active our bodies don’t take well to being sedentary. I know I could never do a desk job.
Hang in there,
Ruth
I am sorry to hear you are having this issue, Lisa. I have had pains similar to what you describe since being floxed (though my pain ranges from a 5/10 – 7/10). Magnesium soaks seem to help a bit as does a bit of yoga when I can manage it. I also think short, daily walks help, too.
I understand that you cannot necessarily connect this pain to being floxed, but seeing as it is a muscle-related issue it is hard not to. I bring on tremendous pain in my muscles when I exercise any muscle I haven’t used in a while or if I hurt myself. I am also in a great deal of pain if I “overdo” exercise (which doesn’t take much).
I hope regardless of what is causing it, you find something that cures you of the pain and you start feeling better soon. You are in my prayers.
Hi Lisa:
Sorry to hear about your setback. In my mind, your pelvic pain is undoubtedly related to your floxing, in one way or another. You mentioned that you were doing pilates. I suspect that your exercise regimen, whatever it was, is as least partly the cause of your pain. I have found that doing any kind of strenuous exercise sets me back with pain for days and sometimes weeks, and I have been unable to truly maintain an exercise regimen since being floxed. My advice to you would be to be less active, to do less and to rest more. And lots and lots of soaking in hot water baths and epsom salt.
Hang in there. I’m sure your pain will subside in time.
Didi
I’m very sorry to hear this Lisa. Could be a relapse who knows? Spasmic muscles are definitely on the possible fluoroquinolone side effect spectrum.
Are you still taking magnesium apart from the epson salt baths? Maybe you could try spraying your whole body with mag oil twice a day to see if it’s related to Cipro? Jimmy and Mel also stopped taking magnesium before their relapses I think. Just a thought.
Hope it goes away quickly. :/
Mark
You’ve mentioned Kratom in a couple of articles, but where do we find it?
Is there a reputable place online to buy it?
I’m so sorry this is happening to you! What you’re going through is not easy. Try and hang in there as best as you can. Chronic pain sucks!!! 🙁
Possibly, when the DC does xrays, you may be able to see what is going on, if it’s structural. My last child dislocated my pelvic plates (can’t remember the technical terms) and one of them was facing the wrong direction. Another issue I have, that causes pain, is my tailbone. It angles so far in that it can be felt with a pelvic exam.
Good luck, Lisa!
People who sit a lot and(I’ve done my fair share) cannot move those parts of the body are going to be vulnerable. Without activity I think a cushioned rest has been my primary relief. I get a tightness that will not go away. Feels like all the pelvic muscles are being going through a tug of war. I find a bed for a month will usually help. If the most gentle of stretches, leg exercises, floor exercises..the kind that involve blood flow or anything gentle relocation of all the pelvic gear after a good deal of healing can take place.
You imagine the hot baths help due I think to the blood flow increase. I have had multiple pelvic issues due to inactivity and “stress” is worse than inactivity. That has to be eliminated.
I did research about retraining the pelvic muscles with floor exercises and PT along with some various diseases it can be. It seems as mentioned hard to diagnose and even harder to treat. If a person in this situation could just jog and do healthy exercises and get stress free as I think if you notice one person puts their stress in their shoulders, some in their neck and others in their pelvic regions. If anyone is pushed not be unable to exercise issues arise. At around 14 I began with my first tailbone issues which is not very pelvic but boy it killed. I took 1000 MG Motrins and that did nothing but hide it. They X-rayed only to see tiny fragments broke off. All this returned a few years back with what I thought was a Hernia…didn’t turn out accurate and I ended up on Cipro which would cause whatever it was to persist and be worse. I sympathize with you and had a bout again about two weeks ago. Laying off siting and getting up as much as possible as much as it hurts being the only real relief.
Those ‘natural painkillers’ mentioned sound good. Isn’t Kava the stuff the Islanders chew? They outlawed that in one Island and the Islanders went to war, they put them back on it promptly…
Dearest Lisa;
I am so deeply sorry for your pain. I am certainly familiar with constant, high level pain and wouldn’t wish it for anyone. While I cannot offer any suggestions that you haven’t already broached, know that I, and many others are sending you positive energy and every wish for a quick and full recovery. We will be here to support you, just as you have done for us.