u/DazzlingSchool7490

Hi all!
I wanted a little advice on when you guys got back to physical activity. I know it sounds crazy because I’m only 2 weeks post-flox.
I only took one dose of Cipro. It started with some leg pain and tingling, then a few days later I had a severe flare that sent me to the ER. I had nausea, full-body tendon and nerve pain, was bedridden for over a week, and needed help just to walk to the bathroom.
Since then, I’ve been following a lot of the advice here …taking magnesium, probiotics, electrolytes, and eating what my body seems to tolerate. I’m finally getting some of my energy back, but I still get random pains in my arms and legs (nothing close to the excruciating pain I felt during the bedridden phase but still painful). I haven’t even left the house yet because I’m honestly terrified of triggering another flare!
When did you guys feel comfortable doing something as simple as walking around the neighborhood? I miss being active, but I’m scared of making myself worse. Google says to avoid weight lifting for at least 6 months, which is heartbreaking after all the progress I made with my first chronic illness.
Any advice and personal experiences on easing back into physical activity would really mean a lot. Thanks in advance! 🤍

Hello everyone,
I wanted to share my story although it’s quite long. I am just in need of some advice. I recently got a pretty stubborn uti from a bacteria my doctor told me usually only happens after a surgery or even birth. I have had neither of those things. I am married and very on top of my health considering I struggle with POTS, MCAS, and hypermobility. I knew the dangers of taking these types of antibiotics because I had seen videos. My doctor tried to prescribe me cipro 3 times and I refused and kept asking for alternatives. On the 4th time she told me I didn’t really have any other option if my infection is not clearing. I am a chronic over-thinker and already have a lot of medical anxiety from things I have been through due to my conditions. I knew in my mind taking this pill would risk all the progress I have made to manage life and get back to a place where I was exercising and gaining muscle without fainting, eating more foods, etc. When she told me I didn’t really have any other options based on my culture I decided to bite my anxiety and asked her if she thinks it’s safe due to my hypermobility. She told me it was only 3 days and adverse reaction would be extremely rare. I knew that I could possibly be overthinking it and I wanted to start gaining trust in my medical team if it could potentially help because I know they are all just trying their best too. After my first dose within hours I got a huge wave of extreme drowsiness, my feet felt cold, and then I started feeling a pain down my left leg. I thought there’s no way and I probably am overthinking. By night time my left leg from my calf to my foot had pins and needles and I couldn’t put pressure on it. It feels almost as if I pulled a muscle. That night I had a horrible panic attack to the point of hyperventilating and I have not had one in years. I really just couldn’t help but blame myself for risking my health when I’ve already struggled. The next day the pins and needles were no longer constant but the pain stayed. I did not continue anymore doses. I found a new doctor that was in internal medicine to see me in hopes she’d be able to look at my body as a whole system when treating me instead of regular doctors who don’t really understand my conditions. She didn’t have much advice to give, listed the medication as an allergy and told me she thinks I will heal with time. She told me she spoke with an infectious disease doctor and doesn’t want me on anymore antibiotics right now in case of building resistance. I did really appreciate her because she didn’t dismiss me at all and even reached out for a second opinion on my behalf although she didn’t have much help to offer. I know my situation could be much worse, and I’m so sorry to those who are in that position because I truly understand what it’s like to be chronically ill and no one gets it. My biggest fear is that this continues progressing into a worse state than I am now. I’ve been continuing to stay hydrated, drink electrolytes with magnesium, and rest. I haven’t put any pressure on my foot at all. It was a bit swollen behind my knee on the back of my leg the other day but it seems to have subsided. Do I have a possibility to heal this? I know I need to stay positive but my mind is whirling I just have so much trauma with these situations! Thank you for any advice and reading my story if you do get through it. Sending love to those who also go through these things!

Ok so here’s my full UTI story I know it’s long..
In the middle of May I began feeling like I had a uti. I’ve had them in the past just haven’t had one for years, I got prescribed macrobid and was extremely nauseous and having tons of body pain. I was about to be leaving the country so I got worried about the side effects and they switched me to cephalexin. I took the full course with no side effects but unfortunately I still felt very inflamed. I thought maybe it was just normal leftover inflammation. I ignored it. July rolls around and I realize this pain has been going on way too long. I go to the doctor and by that point I’m in serious pain again. They take a culture. It took a week to get back to me. While I was waiting I started getting even worse pain so I went into the ER (urgent cares close super early near me) and they gave me an IV of Rocephin. It took the edge off but didn’t clear it. My culture came back and they represcribed me macrobid. I took the week long dose 2 times a day. I was willing to be sick for the week if it meant it really was the best option for my infection. My inflammation and pain was better during the course but as soon as I stopped the meds the pain came back. This already felt like so much antibiotics and I normally do not take meds so this was a lot for me. I felt like even this many antibiotics could not be good. She offered me cipro I told her id really like to try something else if possible (all the horror stories absolutely freak me out and I am so incredibly sensitive/reactive to most medication). So she prescribed me augmentin. I took my first 2 doses on day one. During the day I felt totally fine then by night time my entire body became so itchy my hands fingers chest. It was miserable. I thought maybe it was just normal side effect I took a Benadryl and messaged my doctor in the morning. She told me it could be an allergy and I should no longer take the medication. She prescribed me cipro and again I shared my reluctance with her. I told her I already struggle with dysautonomia and hypermobility and if this was really a safe option for me to take and if there was absolutely anything else I could try. Her response : “With the last culture, your options are limited, though since the ciprofloxacin is only taken for 3 days, the adverse effects are less likely to occur.”
I’m trying not to overthink and trust my doctor but I have a lot of trauma from my dysautonomia experience where no one listened to me and I struggled for a very long time. I am just now to a point where I’m getting my life back and the thought of it being taken from me is terrifying. Especially over something like a UTI. She did take another culture when I went in and I’m assuming it will take until the end of the week like the first time. I know it’s not good to leave an infection like this especially one that’s been this oddly resistant to any medication but seeing how it’s ruined peoples lives I am truly so scared. This has never happened to me before. The medical assistant tried to reassure me that she also has dealt with stubborn UTIs in the past too. She’s making me feel like it’s all there is left to do so I don’t really think I have any other choices right now. By the way the bacteria found on the culture was Enterococcus faecalis.
What would you do if you were me? I did want to mention I have been taking probiotics daily and spreading them out appropriately from my antibiotics as well as taking d mannose.

Hey everyone. I guess this is mostly a vent, but I’m also hoping someone out there has experienced something similar.
A little background on me: I kind of got sick out of nowhere. I had COVID a few times over the years, but the only thing I can really point to is that I had a really bad flu, and a few months after that I started feeling sick. It’s weird… one day I woke up and my body just never went back to normal.
About a year ago I was at my absolute worst. My heart rate was constantly high, I was having nonstop flares, I was basically bedbound, and I was blacking out constantly (pre-syncope) even though I never fully fainted.
I’ve since been diagnosed with POTS, and during physical therapy I was told I’m hypermobile. I tried pursuing a more specific diagnosis, but multiple of my doctors basically told me the treatment would be the same (PT), so having a diagnosis didn’t matter.
I’ve had debilitating migraines, body pain that moves around, crushing fatigue, heat intolerance, exercise intolerance, and I always seem to be in pain somewhere. Some days it’s my muscles, other days it’s headaches, stomach issues, or my heart. It constantly changes.
The thing that confuses me most is the histamine-like reactions. Everything is internal, so I’ve had doctors tell me it “doesn’t sound like MCAS,” but I react to so many foods, medications, and supplements. My body seems to reject almost everything. I get extreme side effects from medications that most people tolerate just fine, and I can’t tolerate supplements either.
The only thing that has ever noticeably helped me was when an ENT suggested trying a low-histamine diet. That was the first time I actually felt some relief, which makes me wonder if histamine is playing a role. I’m definitely better than I was a year ago, but I’m still miserable during flares.
What I don’t understand is that I see so many people with MCAS or histamine issues who do well on antihistamines. I’ve tried Claritin, Zyrtec, Allegra, and others, and they all make me feel worse. Benadryl is literally the only one that helps, and even then I can only tolerate half a tablet or I get side effects.
I’ve seen GI, cardiology, neurology, ENT, physical therapy, primary care, holistic doctors… I’ve had a lot of blood work and testing done, and nothing significant shows up. My vitamin levels were ok, and even then I’ve worked on improving them more through food.
One of the hardest parts is what happens during my flares. I get intense anxiety, racing thoughts, derealization/disassociation, depression, and this overwhelming feeling of impending doom. It genuinely feels like my brain isn’t mine anymore. Then, when the flare calms down, those feelings disappear. That’s what makes it so hard to believe it’s “just anxiety.”
Some of the symptoms I experience include:
Heart palpitations and racing heart
Blood pooling
Pre-syncope/feeling like I’m about to pass out
Heat intolerance
Severe fatigue
Flu-like body aches
Muscle and joint pain
Migraines/headaches
Nausea and diarrhea
Food sensitivities
Medication and supplement intolerance
Red patches/flushing on my chest and face (not typical hives)
Anxiety
Depression
Racing thoughts
Impending doom
Derealization/disassociation
I’ve also noticed that my symptoms get significantly worse around my menstrual cycle.
I know anxiety and depression can cause physical symptoms, but for me they only happen during these flares and disappear when the flare ends. It really feels like something physical is triggering my brain, not the other way around.
I guess my biggest question is: Is there anyone else here who can’t tolerate medications or supplements? Have you found anything that has actually helped? Even if your diagnosis ended up being something other than MCAS, I’d love to hear your experience.
This has been one of the loneliest experiences of my life, especially at night when the flares are at their worst. Thanks for reading if you made it this far.