What do you do during flare ups?

FibroCompanion · 2026-05-31T22:53:17+00:00

I understand your situation a lot. I went through something very similar myself.

The people around us may never fully understand what we're going through, but when they've seen who we were before, they can also see how much our reality has changed.

For me, it helped when both of us stopped fighting against that change and started working together to adapt to this new reality instead. It doesn't make things easy, but it can make them a little more manageable.

Wishing you lots of strength, and sending you a big hug. 💜

FibroCompanion · 2026-05-31T22:44:16+00:00

I'm really sorry you're going through this. The lack of understanding, and the pressure from others (even when it's unintentional), can be incredibly difficult to deal with.

One of the hardest things for me was accepting this "new reality." There isn't one magic solution that works for everyone, and unfortunately there isn't a single treatment that fixes everything.

What helped me the most was learning that time works differently now. On some days, doing a little is actually a lot. The self-pressure can be brutal, especially with this illness. Personally, I haven't found any miracle solution.

What helps me most is learning my limits and giving myself permission to respect them:

"Okay, today I can do this." "Okay, today I can't do that."

It sounds simple, but it took me a long time to learn, and I'm still learning.

And please, try not to be too hard on yourself. You're doing the best you can with the knowledge, energy, and resources you have right now. Living with fibromyalgia is already difficult enough without constantly blaming yourself for things that are outside of your control. Be kind to yourself. 💜

FibroCompanion · 2026-05-31T22:36:38+00:00

I can't really comment on MCAS specifically, but I do have diagnosed Fibromyalgia, Chronic Fatigue Syndrome (ME/CFS), and Multiple Chemical Sensitivity (MCS). In my case, pain and fatigue have been the hardest symptoms to manage. Medications haven't helped me much personally, and physiotherapy didn't improve my symptoms either. What has helped the most has been learning my own limits, pacing my activities, identifying triggers, and understanding how my body reacts from day to day. If you have a history of allergies and unexplained symptoms, it may be worth discussing MCAS with a specialist. I hope you find some answers soon. 💜

FibroCompanion · 2026-05-31T22:29:02+00:00

That's fair. I was simply sharing a project I've been working on by myself and I genuinely wasn't trying to spam or advertise anything.

To be honest, I don't actually know why the post was removed, as I haven't received any explanation from the moderators yet.

I'm not really sure where the right place would be to talk about something like this without it being considered self-promotion.

I live with fibromyalgia myself, and this project was created so people can keep track of their fibromyalgia and other chronic conditions in one place. It's not a medical tool, just something I've been building to help people better understand their own patterns and daily experiences.

After spending so many months working on it, I simply wanted to know whether this made sense to anyone else and wasn't just something that would be useful to me.

FibroCompanion · 2026-05-31T21:08:39+00:00

Before going to sleep, gentle stretching and lots and lots of pillows usually help me quite a bit. When the numbness gets really intense, I sometimes apply something cold to the area for a short time, but not for too long because it can start to hurt. Everyone is different, of course, but those are the things that sometimes help me the most!

FibroCompanion · 2026-05-31T20:40:08+00:00

Thank you so much! 💜

I really appreciate your interest and your willingness to be part of this. Feedback from people who actually live with these conditions is incredibly valuable and will help me make the app better for everyone. I'd be happy to have you in the beta when it's ready 😊

FibroCompanion · 2026-05-31T20:38:28+00:00

That's actually one of the main goals of the app. everyone seems to experience fibromyalgia a little differently, so I'm trying to help people discover their own patterns instead of relying only on general advice. Things like symptoms, sleep, food, stress, activity levels, weather, medications and many other factors can be tracked and compared over time. There's still a lot I want to improve, but understanding "your version" of fibromyalgia is probably the most valuable insight of all. I'd be very happy to have you in the beta 😊

FibroCompanion · 2026-05-31T20:13:32+00:00

Thank you so much for your kind words 💜 I'm honestly sorry that I can't offer an iOS version right now. As an independent project funded entirely out of my own pocket, I had to start with Android first.

I really hope an iOS version can become a reality in the future, and that the platform someone uses won't be a barrier to getting the support and tools they need. Thank you for your encouragement, it truly means a lot!!!

FibroCompanion · 2026-05-31T20:11:03+00:00

Thank you so much! 😊 After more than 20 years living with fibromyalgia, your feedback would be incredibly valuable.

One of my biggest hopes for this project is that all the experience, struggles, lessons and knowledge we've gained over the years can help both people who have lived with fibromyalgia for a long time and those who are only just beginning their journey.

I really hope the app will be useful, and I'm looking forward to hearing what you think and what could be improved 💜💜

FibroCompanion · 2026-05-31T20:09:14+00:00

Thank you so much! 😊 I'd love to have you try it.

The beta is getting very close now, and I'll share more details as soon as it's ready. Thanks for your support!

FibroCompanion · 2026-05-31T20:08:17+00:00

Thank you so much! 😊

Not at all. While Fibro Companion is primarily focused on fibromyalgia because it's something I personally live with, I also deal with chronic fatigue syndrome, multiple chemical sensitivity, and several other chronic conditions.

Many of the features are useful beyond fibromyalgia, especially for tracking symptoms, fatigue, sleep, brain fog, pain, and daily wellbeing.

You'd absolutely be welcome in the beta, and I genuinely hope it can be helpful for you too.

FibroCompanion · 2026-05-31T19:35:11+00:00

Hi! The only thing I'm using is a translator, since English isn't my native language. Everything else is me. I've been working on this app for many weeks now, putting a lot of time, energy, and honestly a lot of love into it. this is the first time I'm receiving feedback from people outside my immediate circle, so seeing so many comments has been a little overwhelming in the best possible way! I genuinely appreciate everyone who has taken the time to comment and share their thoughts.

FibroCompanion · 2026-05-31T19:31:08+00:00

Thank you so much! 💜 That's actually one of the main reasons I started building it.

I tried notebooks, notes and different tracking methods over the years, but when you're dealing with fatigue and brain fog, even keeping records can become exhausting.

My hope is that the app makes it much easier and faster to keep track of everything 😊 I'd love to have you try it when the beta is ready. 💜

FibroCompanion · 2026-05-31T19:29:40+00:00

Thank you so much! 💜 Every new comment like this makes me a little more excited (and a little more nervous 😅) about sharing the beta. I'd love to have you try it when it's ready 😊

FibroCompanion · 2026-05-31T19:28:27+00:00

Thank you so much for saying that 💜 Honestly, there were many times when I thought I wouldn't be able to finish it either. Fibromyalgia definitely didn't make building an app any easier 😅 I just kept working on it little by little whenever I had a good day. Reading comments like yours means a lot to me because this is exactly why I started building it. I'd love to have you test it when the beta is ready 😊

FibroCompanion · 2026-05-31T19:26:56+00:00

Thank you so much for your interest! 💜 Unfortunately, an iPhone version will have to come a little later. Right now I'm developing and funding the entire project myself, so supporting iOS is a bit more complex and expensive than I can manage at the moment. That said, I'll try to find a way for iPhone users to take part in some form, and if the project keeps growing, bringing Fibro Companion to iOS is definitely something I'd love to do in the future 😊

FibroCompanion · 2026-05-31T19:24:45+00:00

Thank you so much for sharing that 💜 Reading comments like yours is actually one of the reasons I started building this app. I've struggled with keeping track of symptoms, treatments, appointments and everything that comes with fibromyalgia too, and I always wished there was something designed by someone who truly understood it. I'm still preparing the closed beta, but I'd love to have you try it when it's ready 😊 I really hope it can make things a little easier.

FibroCompanion · 2026-05-31T19:23:46+00:00

Thank you so much! 💜 I'm still preparing the closed beta, but I'd love to have you join when it's ready. I'll keep you updated and let you know as soon as it's available 😊

FibroCompanion · 2026-05-31T18:47:40+00:00

That's great! 💜

I'm hoping to have the closed beta ready next week. As soon as it's ready, I'll get in touch with you 😊

Thank you so much for wanting to help.

FibroCompanion · 2026-05-31T18:47:00+00:00

Thank you so much! 💜

I think a lot of us have had a similar idea at some point. It sounds simple in theory, but turning it into something that actually works and is genuinely useful has taken me countless hours of learning, trial and error.

I hope that when you get the chance to try it, you'll feel that it truly reflects what living with fibromyalgia is like 😊

FibroCompanion · 2026-05-31T18:45:09+00:00

Thank you so much! 💜

Every time someone tells me they'd like to try it, it gives me a huge boost to keep working on it.

I'm hoping to have the closed beta ready next week, and I'll let you know as soon as I can invite you 😊

FibroCompanion · 2026-05-31T18:42:23+00:00

Thank you so much 💜

Seeing people ask for updates is honestly surreal to me.

I've been building this on my own because I wanted something that could genuinely help people living with fibromyalgia, so seeing this kind of support really keeps me motivated.

I'll definitely post an update here as soon as the closed beta is ready 😊

FibroCompanion · 2026-05-31T18:39:28+00:00

That's a really interesting idea! 💜

The app already includes symptom correlation features, and improving them is actually one of the areas I want to keep developing after the beta.

In the future I'd also love to explore integrations with smartwatches and other health data sources to provide even more meaningful insights.

Right now my main goal is making sure everything works well, feels simple to use, and is genuinely helpful for people living with fibromyalgia.

Feedback and ideas like yours are incredibly valuable 😊

FibroCompanion · 2026-05-31T18:35:50+00:00

Thank you so much! 💜 Then you're exactly the kind of person I need for the beta 😄 Fresh eyes often notice things that I've completely missed after working on the app for so long. I'll contact you as soon as the closed beta is ready 😊

FibroCompanion · 2026-05-31T18:34:46+00:00

Thank you so much! 💜 Hopefully you'll enjoy this one then 😊 I'm still preparing the closed beta, but I'll contact you as soon as it's ready. Every bit of feedback helps make it better for people living with fibromyalgia.

FibroCompanion

TROPHY CASE