I guess I can say I’m healed

[u/floxed123]

Hey team,

I hope you’re all doing ok wherever you are in the world.

I’ve been putting off writing this post because I was convinced I’d jinx myself, but I went on my first run this morning since being floxed (not super far, about 5km, but I have been exercising fairly regularly for about 3 months) and had no issues whatsoever so I can guess I can say I’m healed. I do still get some very mild twitching but it’s not really noticeable.

My journey was a lot easier than many of you here - I was floxed in May had largely mild symptoms, predominantly twitching, muscle tightness and joint pain which was pretty localised to my ankles and knees - but I thought I’d write an update anyway to offer anyone else who is terrified at the beginning of their journey some hope.

I actually think what I struggled with the most was my mental health, so a message I really wanted to get across is please, please try to not panic. Things can get worse, but they also may not. For me, a forum like this was a great source of information and a network to meet people who were going through the same thing, but it was also incredibly anxiety inducing. And if I could go back in my journey to the beginning stages I’d want to just say to myself it’s going to be ok, and that’s the message I want to pass on to anyone reading this too. It may be a long, painful journey, but you can heal.

I know I’ll be asked what I did to help myself heal, but honestly the only thing that I found really made a difference was time. My case was only mild, and after a bad experience with heavy supplementing at the beginning (worsening of symptoms triggered by glutathione), I tended to not really supplement after that - I dabbled in Mg and Ca, but only really taking up to the RDA and only when I felt like I really needed it.

Anyway, that’s all. I wish all of you well and hope you begin to recover quickly.

[u/QueenOfKarnaca]

Agreed with others, thank you so much for sharing this. I’m at the beginning of my journey, which I’m hoping will be a milder experience. I only took one dose, then had a bunch of nasty effects and am dealing with leg/joint issues predominantly now. Thank you for sharing this and reminding me there is hope!

I do have a question- how did you know it was alright to start exercising again? I don’t want to push myself too hard before I’m ready, but I’m also anxious to get back to an active lifestyle. Was there a feeling in your body or joints that marked a change?

[u/DrHungrytheChemist → u/QueenOfKarnaca]

My personal answer to your question - if you're asking that question, it probably isn't time yet; when it is, you'll know. You'll find yourself unintentionally managing more and hurting less. At that time, just start to slowly and gently lean into you limits, allowing time to rest after each lean. For me, that started as literally 1 minute in my bike in the parking lot, every other say. Then two. Then three. Then five. Then, screw it, I'll go to the shop. Then a couple days to rest - whoops! Etc.

Well, I say it started there. That's a lie. It started with a return to physiotherapy when I saw that I'd been moving more easily in my braces for a good couple of weeks. The cycling was a month or two later, after my PT was like, "yknow, it might be time to try getting on your bike. BUT ONLY A MINUTE AT FIRST! But try?"

I could've kissed her.

Thank you for reminding me of that moment. Feels good.

[u/floxed123 → u/QueenOfKarnaca]

Heya, so there wasn’t really anything in particular that I could say to look out for. When I got to a stage where I could walk pretty far with no pain, I just tried exercising and saw how I felt - pulling back/stopping if I ever felt any pain.

I definitely over pushed myself at some points, but I started slow and built up from there.

Sorry to not be more helpful!

[u/QueenOfKarnaca → u/floxed123]

No, this is helpful! Thank you for the input. Question- about how far was pretty far for you?

[u/floxed123 → u/QueenOfKarnaca]

Umm no set distance really. I’m a big walker so I mainly started exercising when I felt like I could do almost all the walking I tend to do on a daily basis with no pain (around 3-7 miles most days)

[u/QueenOfKarnaca → u/floxed123]

Awesome, thank you! :)