u/InspecteurMcLapine

Today I finally gave in.

I'm currently around a BMI of 46, and I'm just so tired of not being able to dress the way I actually want to dress.

I've avoided Shein my entire adult life. I've always tried, as much as I reasonably can, to buy clothes from brands where I know something about where/how they're made, and when I buy clothes, I wear them for a LONG time. I'm really not someone who buys something, wears it twice and throws it away.

But today I placed my first Shein order, and honestly, I feel pretty shitty about it.

I only bought a few pieces, and I'll take care of them and wear them for as long as they survive. I really hope the quality is at least decent. But I reached a point where I just couldn't take opening my wardrobe and hating almost everything I could actually wear.

There ARE other options in my size. The problem is that whenever I find something that is genuinely beautiful, feels like me, comes in my size AND isn't fast fashion, suddenly I'm looking at €150–300 for a single piece.

I understand why genuinely ethical clothing costs more. People deserve to be paid properly for their work, materials cost money, small-scale production costs money, etc. I'm not expecting handmade, ethically produced clothing to cost €20.

But I simply cannot afford a €200–300 garment every time I need something nice.

And then I've had people recommend supposedly “better” alternatives where I look into the company and… it's still basically fast fashion. Except now the dress is €150. At that point I don't even understand what I'm paying extra for.

For a long time, I accepted having fewer options. I told myself that clothing wasn't important enough to compromise my values over.

But I'm going through a really difficult period of my life right now, and I realized that I desperately want to feel pretty sometimes.

I have a few occasions coming up. I don't need to be the most beautiful person in the room. I don't need everyone to look at me. I just want to put something on, look in the mirror and think, “Oh. I actually look cute.”

And I don't think that's an unreasonable thing to want just because I'm fat.

So I gave in and ordered a few things.

The frustrating thing is that I've never judged other fat people for buying from Shein. Quite the opposite. I've always understood that when your size severely limits where you can shop, “just buy ethical clothing” isn't necessarily useful advice. Not everyone has the same budget, location, body shape or access to secondhand clothing in their size.

Apparently I could extend that understanding to everybody except myself. 😅

I still feel guilty because this goes against something I've cared about for years. Until now, my personal level of “fast fashion” was basically occasionally H&M or C&A which I know aren't exactly ethical champions either. I've never really navigated the ultra-fast-fashion world before.

I'm planning for this to be my first and last Shein order. I just needed a few clothes that fit my current body and that I can actually feel happy wearing, rather than continuing to punish myself with clothes I hate while waiting for some hypothetical future version of my body.

So, fellow fat Europeans: where the hell do you buy your clothes?

Especially those around my size or bigger.

I'd LOVE recommendations for European brands that make genuinely cute/interesting/colourful plus-size clothes and are reasonably ethical, without every dress costing €300.

But honestly, I'm also interested in the imperfect middle ground. Maybe brands that aren't perfect but are better than ultra-fast fashion, have decent quality and actually make clothes for very large bodies. I clearly need to learn more about what's available.

Secondhand recommendations are welcome too, although finding specific styles in larger sizes can obviously be a challenge.

And I'd also just love to hear how other people navigate the ethical side of this. Where do you draw the line when the “better” options either don't make your size or are financially inaccessible?

Because right now I'm feeling a weird combination of guilt and relief.

Guilt because I finally bought from a company I'd deliberately avoided for years.

Relief because for once I have a little package coming with clothes I actually chose because I thought they were pretty not just because they happened to fit me....

Coucou ! J'espère que tout le monde va bien !

J'ai une question trop bête car la réponse c'est juste de dire non... Mais voilà ce qui m'est arrivé hier :

J'étais avec quelqu'un et on se promenait dans un magasin pour trouver un truc vraiment important, un SAMEDI, en centre ville après déjà plein de trucs mais c'était vraiment important. Bref on passe au rayon qui nous intéresse, mais on trouve pas. Je demande à une vendeuse, qui me dit qu'elle est pas vendeuse mais qu'elle s'occupe de présenter des produits d'une marque qui me rappelle mon enfance, je dis à mon ami "oh c'est le produit que je devais utiliser quand j'étais petite" bref la vendeuse voit en nous des acheteurs et là tout a dérapé.

Elle me présente des dizaines de produits et plein de trucs, je me dis que j'aimerais bien avoir une crème ou deux et là elle remplit le panier... Je vois qu'elle rajoute, et même on était en caisse et elle vient à la caisse nous rajouter un produit... Le prix du produit qu'elle rajoute est de 90balles. Bref je ferme ma gueule alors que vraiment je suis en grande souffrance car je sens qu'elle m'a un peu arnaquer de rajouter plein de trucs. On paye 400 balles de produits, non retournable il y a même pas le produit de mon enfance, je suis dégoûtée mais j'essaie de garder la face.

À aucun moment j'ai pu dire non, et même si j'allais prendre un ou deux produits je me retrouve avec 13 produits alors que ma routine c'est de l'eau et c'est tout, ce que je lui ai dit donc elle savait que j'utiliserai pas tout les trucs je sais même pas ce que c'est.

Bref j'aurais pu dire non au début mais je voulais tester et être heureuse, donc j'étais ok ensuite impossible de dire non, à la fin j'ai pleuré j'étais trop mal car c'est littéralement de l'argent qu'on a pas, évidemment on va utiliser les produits maintenant et voilà comme on peut pas les rendre. En plus elle a pris notre ticket pour faire une photo pour qu'on puisse avoir deux cadeaux ridicule et j'ai pas l'impression qu'on la repris. Bref d'une tristesse.

Comment j'aurais pu faire ?

Dire non au début même si ça m'intéressait ?

Enfaite je sais pas dire oui puis non ni mettre de limite.

C'est déjà arrivé à quelqu'un d'autre ?

Hi! I have an electrical inspection coming up soon here in Vaud, and I’m starting to wonder how this actually works in real life.

Do they really need to check every single outlet in the entire house?

Most of ours are accessible and obviously I’ll make sure they can easily get to them, but I have a few outlets behind furniture that simply cannot be moved.

And I don’t mean “I don’t feel like moving it” I mean furniture that was basically installed there and is not realistically movable, like my bed and some other large pieces of furniture.

So… what happens in that situation? If they can access 95% of the outlets but there are two or three they physically can’t reach, is that actually a problem? Am I supposed to somehow dismantle half my bedroom so a man can inspect one outlet? 😭

Also, for those of you who have already had this inspection: what is the appointment actually like? How long were they in your house? Did they go into every room? Did you have to prepare anything beforehand? Was it a big deal, or did someone just walk around with a tester for a while and then leave?

Because judging by the atmosphere in my house right now, you would think we’re preparing for a federal raid rather than an electrical inspection.

(Certain people ( I won’t name my dad 👀) have also apparently decided that the entire house needs to be absolutely spotless because an electrician is coming.

And I genuinely don’t understand this phenomenon. 😭

Obviously I’m going to clean and tidy up. Obviously there needs to be enough space for someone to walk around and access whatever they need to inspect. I’m not planning on making the poor guy climb over mountains of stuff to reach the outlets.)

But why does the house suddenly have to look like nobody has ever lived in it just because a stranger is coming inside for an hour or two?

My dad has basically been pacing around the house stressing about this inspection for a WEEK, and the guy hasn’t even arrived yet. At this point I feel like my dad is already traumatized by an event that hasn’t happened.

So please tell me is this inspection actually as dramatic as my family is making it sound? 😂

Did you have to move heavy furniture?

Did they really check every single outlet?

(And did your family also collectively lose their minds beforehand, or is that just mine?)

I'm curious about what actually makes a noticeable difference in your sales at craft fairs, not necessarily what you sell, but how you sell it.

My personal “strategy” so far has basically been: smile a lot and never sit down 😂 I try to look approachable, enthusiastic and available without immediately jumping on people when they enter my booth. It actually seemed to work pretty well at my previous markets, but I'm sure there's a LOT more I could learn.

What works for you?

Do you greet everyone or let people browse quietly?

I'm especially interested in things where you genuinely noticed a difference in sales after you started doing them even if it's something tiny, weird or oddly specific.

And on the opposite side: what sales trick did you try that absolutely did NOT work?

I'm preparing for my 3th market and I'd love to experiment with some new techniques!

Now that I've had my ECG and Holter results, seen a cardiologist, and been told that my heart itself is healthy, I feel a little more reassured about trying to exercise again !

I'm still not diagnosed with POTS, but POTS/dysautonomia remains one of the possibilities being considered, and a lot of my symptoms fit. Before getting my heart checked, I was genuinely scared that exercising could be dangerous because I didn't know whether something was actually wrong with my heart. Knowing that my cardiac workup was reassuring has taken away some of that fear ☺️

I've already searched this subreddit for posts and the Q&A about exercise, fitness, and working out with POTS. I found an exercise program designed for POTS patients and read pretty much everything I could find here, but I still feel like I haven't found exactly the experiences I'm looking for, so I hope it's okay to ask again.

Before my health got significantly worse, I was actually pretty active. I went to the gym regularly, did yoga and swimming, and occasionally played badminton. About a year ago, when I weighed around 30 kg less, I was exercising around five times a week.

Looking back, I honestly don't know how I managed it ahaha I already had some of these symptoms and basically worked around them as best as I could. But since then, they've become so much worse that there's absolutely no way I could just go back to my old routine.

And I definitely don't intend to push myself hard right now.

Recently, just being outside in the heat and doing a tiny amount of walking/light activity was enough for my heart rate to reach around 180 bpm. So I'm very aware that this isn't the moment to walk into a gym and start training like I used to. I'm not trying to pick a fight with my own body. 😅

Tomorrow morning I'm going with my boyfriend to try out a gym. We're considering paying a little more for this particular one because it also has an air conditioning (it's rare in Europe!) and a swimming pool. Swimming used to be something I really enjoyed, and being horizontal and having the water around me seems potentially much more manageable for my orthostatic symptoms.

What I'm really interested in is hearing from people who still exercise despite POTS symptoms, particularly people who also deal with extreme fatigue, obesity, or post-exertional crashes. ME/CFS has also crossed my mind because of the severity of my fatigue and the way I sometimes feel significantly worse after activity, although I'm absolutely not diagnosed with ME/CFS either.

What does exercise actually look like for you now?

Do you have a gym membership?

How often do you manage to go? Do you swim? Use a recumbent bike? Mostly use seated or lying-down machines? Do very short sessions?

I'm also really curious about people who are into strength training or bodybuilding. Are any of you still doing things like deadlifts, squats, bench press, or other heavier lifts? Is something like bench press significantly easier because you're lying down? Are there exercises you used to tolerate but absolutely can't anymore?

And for people who started exercising again after becoming severely symptomatic: how did you start?

How did you figure out where your limit was without constantly exceeding it? Did exercise eventually improve your POTS symptoms? Did it make them worse at first? How long did it take before you noticed any difference?

And especially for anyone who experiences severe fatigue or post-exertional crashes: how do you approach the whole idea of exercise without triggering a massive crash afterward?

I'm absolutely not expecting to return to exercising five times a week anytime soon. If tomorrow's "workout" ends up being five minutes of very gentle movement and then sitting down, that's fine.

I just really miss moving my body. I miss swimming, yoga, strength training, and feeling like my body can actually do things.

I'd love to find some form of movement that works with the body I have now rather than constantly trying to force it to behave like the body I had a year ago.

I'd especially love to hear from people who have been through something similar: what worked for you, what absolutely didn't, and what do you wish you'd known when you started?

Too many questions sorry 😐

I finally had my long-awaited cardiology appointment, and I guess it went “well.”

Nothing terrible happened. The cardiologist wasn't mean to me, and ultimately I got some reassuring news. But I came out of the appointment feeling a little weird and disappointed.

At the beginning, when I started explaining my symptoms, he said something along the lines of, “Either you have a heart problem or you don't.”

And technically... yes. 😅 I actually agreed with him. Either there's something wrong with my heart or there isn't.

But the way it was said made me feel like there wasn't much interest in everything happening around that question. Regardless of whether my heart itself is healthy, the symptoms I'm experiencing are still happening, and they're significantly affecting my life.

Maybe I interpreted his tone incorrectly, but from the beginning I wasn't entirely convinced that he was taking the bigger picture very seriously.

There were also comments about my weight and needing to exercise more. I explained that the situation is more complicated than simply not exercising. I used to be much more physically active, and my symptoms are actually a major reason why I've had to reduce and eventually stop most exercise.

Being told to exercise is frustrating because... I would absolutely love to be able to exercise normally again. That's part of why I'm trying so hard to understand what's happening.

He examined me, reviewed the cardiac testing, and ultimately told me that there doesn't appear to be anything wrong with my heart itself.

And genuinely, that's great news. I'm relieved.

It's also not entirely surprising to me, because if what I'm experiencing eventually turns out to be POTS or another form of dysautonomia, my understanding is that you can have a perfectly healthy heart while the problem lies in how the autonomic nervous system regulates things like heart rate and blood pressure.

He mentioned some mild tachycardia, but said there was nothing concerning and that there wasn't really anything more he could do for me from a cardiology perspective.

I tried to explain one of the things that concerns me the most: I can be lying down at around 80 bpm, stand up, and sometimes reach 170 bpm.

His response was essentially that heart rate fluctuates, everyone is different, and fluctuations can be normal.

And I was just sitting there thinking... okay.

Obviously I know that heart rate isn't supposed to stay perfectly constant. I know it normally increases when we stand up or move around.

But going from around 80 to 170 simply from getting up, especially when it's accompanied by symptoms, doesn't feel like an insignificant fluctuation to me.

I think a small part of me had hoped that I would explain this and he'd say something like, “Okay, I know about POTS. Let's investigate whether that's what's happening.”

That didn't happen.

There was also one interaction with the medical assistant that I found pretty awkward. She was doing my ECG and blood pressure, so I was lying on the examination table with my chest uncovered. At one point, she needed something that was on the other side of the table and, instead of walking around, she literally leaned across/on top of me to grab it while I was still lying there topless.

I honestly didn't know how to react. 😅

It wasn't some huge dramatic incident, but when you're already half-naked and vulnerable during a medical examination, having someone lean across your body like that is... awkward.

I want to be fair about all of this: I'm not saying they're bad healthcare professionals. The clinic has very good reviews, and medically the appointment itself was fine. My heart appears healthy, which is obviously the most important outcome from a cardiology appointment.

I just found some of the interactions a little unprofessional, and at certain moments I felt like I wasn't being taken completely seriously.

So I have very mixed feelings.

On one hand: my heart seems healthy. That's genuinely fantastic news.

On the other hand: I'm still experiencing the exact same symptoms, and I still don't know why.

Thankfully, I have my second appointment with my neurologist coming up soon. So far, he's been the doctor who has taken my symptoms the most seriously, and he has already mentioned the possibility of dysautonomia. I'm hoping I can continue investigating this with him.

And just to be clear, I'm still not diagnosed with POTS. POTS seems to fit a lot of what I'm experiencing, but I'm completely open to finding out that something else is causing it. I don't particularly care what the diagnosis ends up being, I just want to understand what's happening and find ways to manage it.

Has anyone else had a similar experience with cardiology?

Did you have a normal cardiac workup and then eventually continue the investigation with neurology or another specialist?

And has anyone else been told that very large lying-to-standing heart rate changes were simply normal fluctuations?

I'm really happy that my heart appears to be healthy. I just wish the appointment had given me some idea of where to go from here.

Hi everyone,

I'm still in the diagnostic process, so I'm not diagnosed with POTS, but it's one of the conditions currently being considered because a lot of my symptoms seem to fit. I have a cardiology appointment on August 10th to discuss my Holter results, and honestly, I'm really anxious about it.

Two days ago, I spent about 1.5 hours outside while my bike was being repaired. I wasn't doing anything particularly strenuous. I mostly stood there watching, turned a few screws here and there, and helped a little.

It wasn't even extremely hot. It was around 30°C (86°F). Hot, yes, but not the kind of temperatures you sometimes hear about during extreme heat waves.

Even so, I felt absolutely awful.

My heart rate climbed to 170 bpm, and it stayed high for much longer than I expected. Eventually I had to lie down in the shade because I felt so unwell.

What really scares me isn't just the heart rate, it's what happened afterward.

It took me two full days to recover.

Yesterday I only managed about 100 steps because I felt so exhausted and nauseated that I barely got out of bed. Even today, although my heart rate is better, I'm still dealing with nausea and feeling much worse than usual.

That's the part I struggle to understand.

How do you stop worrying every time something like this happens?

How do you stop feeling guilty when you only manage 100 or 200 steps in a day?

That's something I'm really struggling with right now. It feels so wrong. A human body is supposed to move, and when I only manage 100 steps, it honestly scares me.

How do you cope with that mentally?

Do you just accept that your body needs the rest, or do you try to push yourself a little anyway?

Is it your POTS that keeps you from moving, or do you have other conditions as well?

And how do you stop worrying about things like blood clots when you're barely able to move for a day or two?

I know that worrying probably doesn't help, but I find it really difficult not to think about it.

At the same time, I worry that my cardiologist will tell me my Holter was normal, because during the week I wore it I didn't do anything particularly demanding. If it comes back normal, I'm scared people will assume nothing is wrong, even though experiences like this don't feel normal to me at all.

None of the people around me seem to react this way to standing outside in warm weather for an hour and a half with very light activity.

Has anyone else had episodes like this?

Does heat affect you this strongly?

And if your Holter was normal, did your doctors still continue investigating your symptoms?

I'm feeling really anxious about my appointment because I don't want to be dismissed again. More than anything, I just want to understand what's happening to my body.

And I'm so worried about only 100-300 steps per day... It's so scary! Sorry for the amount of questions!

F28 | 115 kg (254 lbs) I have my first appointment with a female endocrinologist (I'm scared because it's a woman it's more stressful for me idk why) at an obesity center tomorrow, and I'd really love to hear about other people's experiences. I'm actually looking forward to finally seeing someone who specializes in obesity, but at the same time, it's probably the appointment I'm most anxious about. Most of the stories I've heard from people who have seen endocrinologists haven't been very positive. Many felt dismissed or that everything was immediately blamed on their weight, and I think that's made me quite nervous. I'm hoping this will be different since she's part of an obesity center, but I still can't help worrying. I've tried to prepare as much as I possibly can. I've put together a detailed folder with my medical history, symptoms, blood test results, family history, photos, and a timeline of everything that's happened. I've been tracking everything I eat for the past six years, and for the last three months I've been even more consistent using a new app with photos of my meals. By pure luck, I got my period today, so if she wants to order hormone tests that are best done at the beginning of the menstrual cycle, the timing couldn't be better. I know I've done everything I can to prepare, but I'm still scared because I have no idea where this appointment is going to lead. I'd really love to hear your experiences.

What was your first appointment with an endocrinologist like?

Did they take the time to investigate possible hormonal or metabolic causes before discussing treatment?

Did you feel listened to and respected?

I'd really appreciate hearing both positive and negative experiences. I think hearing how it went for other people would help calm my nerves a little before tomorrow 😅

I signed up for another craft market that's coming up in about six weeks.

I've done two markets before, both last year. Right now, almost nothing is ready yet, but honestly that's not what's stressing me out.

What's getting to me is this feeling that... I don't actually know what I'm doing.

I have one category of products that's really unique and has kind of become my "signature." I make highly personalized keychains, and as far as I know, nobody else really makes them the way I do. People always seem to find them fun and original.

The problem is that they're pretty niche, so I can't build an entire booth around them.

I also love making things with polymer clay, beads, and other crafts, so I create lots of different products.

But every time I look at them, I feel like they're just... okay.

Like they're nice enough for someone making things as a hobby for themselves, but not good enough to sell.

I know this feeling isn't new. I felt exactly the same before my first market.

The funny thing is... that first market actually went really well.

I signed up almost at the last minute without really preparing anything. I ended up making quite a few sales, and I think a big part of it was simply that I was genuinely so happy to be there. I smiled all day, talked to everyone, and was just excited that I'd even been accepted.

My biggest mistake was pricing. My prices were ridiculously low. I covered my booth fee, but definitely not the cost of my materials or the time I spent making everything.

At my second market, I raised my prices. It rained almost the entire day, so attendance was much lower, but I still made sales, which made me feel a little more confident.

And yet... here I am again, wondering whether I'm actually any good.

I look at other vendors and think, "Their work looks like it belongs at a market. Mine just looks homemade"

I don't even know if that makes sense.

So I guess my question is:

Do you ever feel this way before markets?

And if you've been doing markets for a while, what do you think actually makes a booth successful?

Is it originality? Product quality? Presentation? Personality? Pricing?

Or does everyone secretly feel like they're not good enough before every event?

Right now, my heart almost feels... cold? It's a very strange feeling, like there's pressure or tightness around it. It's hard to describe.

It's not especially painful, and it doesn't seem to get better or worse whether I'm sitting, standing, or lying down. At the same time, I'm completely exhausted.

I've never experienced this particular sensation before, and it always makes me wonder: how do you tell the difference between it's probably just POTS" and "this might actually be something else ?

That's the part I find so difficult. I don't ask about if it's POTS or not, just how to manage to know for you only !

F28, 115 kg (254 lbs) I know this post is basically just me venting, and it probably doesn't help anyone. But I really need to get this off my chest, and honestly... I need someone to tell me I'm not the only one who feels like this, because it's becoming unbearable.

I've gained a lot of weight over the past few years. At one point I was still obese, but I felt a little more comfortable in my own skin. Then my chronic health problems started piling up, and I gained about 30 kg (66 lbs)

I've never really looked in the mirror and thought I was beautiful, but over the past few months it's become so much worse. It's not just that I don't like what I see anymore. Looking at myself genuinely makes me feel sick.

Today I tried on some new clothes because I finally decided to stop buying clothes with the mindset of, "I'll buy them a bit smaller because I'll lose weight," or, "I'll buy them bigger because I'll probably gain more weight anyway." I wanted to build a wardrobe with clothes that actually fit me now. Clothes that I genuinely like. Clothes that make me feel like I'm allowed to exist today instead of constantly waiting for some future version of myself.

I mostly wear dresses because I genuinely love them, not because I'm trying to hide my body.

Today I tried on a few pairs of trousers. They fit perfectly. They weren't too tight. Objectively, they fit exactly as they should.

But all I could see was my stomach.

And I completely fell apart.

I didn't just feel a little nauseous. I was actually gagging. I honestly felt like I was seconds away from throwing up because I was so disgusted by what I was seeing. I know how awful that sounds, but that's genuinely how I felt.

The worst part is that I've been trying so hard. I've been tracking my calories for a long time, and over the past few months I've worked even harder to improve my habits. I've lost 1 kg (2.2 lbs) in about 100 days. I know that's still progress, but it feels so discouraging when I'm putting in so much effort.

Between my chronic illnesses, the medical issues I'm currently being investigated for, possible hormonal problems, and the fact that I can barely exercise anymore when I used to be quite active, it feels like my body just isn't responding.

What I struggle with the most is not understanding why this happened. Maybe my eating habits have played a role. Maybe my health has. Maybe it's a combination of several things. I honestly don't know, and that's what drives me crazy. I feel like I'm fighting something I don't even understand.

People suggest medications like Ozempic, and I completely understand why they help so many people. I don't judge anyone who chooses that path. But personally, I still feel like I need to understand what's happening to my body. I don't know why I gained so much weight so quickly, and it's hard for me to move forward without understanding that.

At the same time, I'm becoming so desperate that I'm even thinking about bariatric surgery. For years I always told myself I would never do it not because I think there's anything wrong with it, but because I wasn't sure I'd be able to maintain the long-term lifestyle changes it requires. Now I don't even know anymore.

In two weeks I'm seeing a specialist as part of an obesity care program, and I really hope they'll be able to help me figure things out. But right now I just feel completely lost. I genuinely don't know what else I can do.

I don't recognize myself anymore. I don't feel like the person I used to be. I don't feel like I can dress the way I'd like because whenever I put on clothes I actually love, all I see is a body that doesn't feel like mine anymore.

Ironically, colorful clothes are really fashionable right now, and that's exactly the style I've always loved. I thought finally buying clothes that fit me would make me feel a little better. Instead, I still can't enjoy any of it because I can't stop focusing on how deeply uncomfortable I feel in my own body.

The strange thing is that I don't even think larger bodies are ugly on other people. I genuinely don't. But when it's my own body, all I feel is disgust, and I hate that I feel this way.

Has anyone else ever reached this point?

How did you cope with feeling like you'd completely lost yourself?

Hi everyone,

Today I had my first physiotherapy session at home, and honestly, I came away feeling really disappointed.

For some context: I'm not diagnosed with POTS. My neurologist mentioned the possibility of dysautonomia but wants to wait for more test results before drawing any conclusions. In the meantime, he prescribed physiotherapy and occupational therapy because he currently suspects a functional neurological disorder.

I explained my symptoms to the physiotherapist and showed him the document I'd prepared with my symptom history and heart rate recordings. I also told him that I've been wondering whether POTS could explain some of my symptoms, although I know I'm still in the diagnostic process.

The problem is... today happened to be one of my "good" moments

The assessment mainly involved sitting, standing up, and walking around.

I was actually a little disappointed that we never did a proper lying-down-to-standing assessment, because that's usually when my heart rate changes the most. Most of the time I gain more than 30 bpm, and occasionally I've even recorded increases of over 60 bpm.

Since we only did sitting to standing, there was some increase, but nothing particularly dramatic.

During the appointment, I barely had any symptoms. No major dizziness, no near-fainting, nothing like what I usually experience.

Ironically, my symptoms came back later that day just not while he was there.

I know I should be grateful that I wasn't feeling awful during the appointment, and of course I don't want to have symptoms all the time.

But I can't help feeling frustrated because this was the one appointment where I actually "wanted" my symptoms to show up. I wanted him to see what my daily life is really like because he needs to know for help.

When he was leaving, I even apologized because I felt like he hadn't really been able to assess me properly. I told him that I understood it was difficult because, unfortunately, he hadn't actually seen the symptoms I struggle with most days.

I'm not saying he did anything wrong. I genuinely don't think he did. I just feel like the timing was incredibly unlucky, and the appointment didn't reflect my usual reality.

Another thing that left me feeling a bit discouraged was our discussion about using a cane.

My neurologist was actually the one who first suggested that a cane might help with my dizziness, near-fainting episodes, and balance problems.

At first I wasn't very comfortable with the idea, but after thinking about it for almost a week, I realized that I already rely on walls, furniture, or sitting down whenever my symptoms become overwhelming 😅 So I started thinking that maybe a cane could actually make me safer and help me stay independent.

The physiotherapist immediately said that he didn't think I needed one because I still go outside by myself.

The thing is... I think we misunderstood each other.

I don't actually spend much time outside. Most of the time, I'm in my room because of my symptoms.

It's also not that I never have falls or near-fainting episodes, I do but the difference is that I'm no longer afraid of them.

That doesn't mean they're not happening. It doesn't mean going outside is easy.

It just means that I don't want fear to become another thing that limits my life.

I know myself. If I start being afraid of leaving the house, my world will become even smaller than it already is.

So when I said I wasn't afraid of going outside, I didn't mean that my symptoms aren't severe. I only meant that I've chosen not to let fear stop me from trying. And I never go outside alone, it's easier.

I left feeling like I hadn't managed to explain that very well.

Has anyone else experienced something similar?

Has physiotherapy been helpful for your POTS or dysautonomia?

Have you ever had an appointment where your symptoms were low, making you feel like you couldn't show what you actually live with?

I'd really appreciate hearing your experiences because I'm feeling quite discouraged right now 😩

Hi everyone,

I was wondering if any of you are third-country nationals (non-EU/EFTA) and have successfully started a business in Switzerland. Honestly, the whole process feels like a nightmare to me...

I have a few questions if anyone here has been through it:

Was the process complicated?

How did you prepare your application, especially the business plan?

Were you confident that your application would be approved, or was it a very uncertain process?

How long did it take from submitting your application until you received a decision?

If anyone would be willing to share their experience or chat with me via private message, I'd really appreciate it. To be honest, I've been going to bed stressed every night because of this. 🤷

Thanks !

Bonjour à tous,

Je me demandais si certains d'entre vous sont des ressortissants d'États tiers (hors UE/AELE) et ont réussi à créer leur entreprise dans le canton de Vaud (ou ailleurs en Suisse romande) car vraiment c'est un cauchemar j'ai l'impression...

J'aurais quelques questions si il y a des concernés !

- Est-ce que la procédure a été compliquée ?

- Comment s'est passé le montage du dossier (notamment le business plan) ?

- Aviez-vous confiance dans les chances que votre demande soit acceptée, ou est-ce que c'était assez incertain ?

- Combien de temps a pris la procédure, du dépôt du dossier jusqu'à la décision ?

Et si certains sont d'accord pour en discuter en privé ou partager leur expérience, ce serait vraiment apprécié,car vraiment je m'endors tout les soirs en stress 🤷‍♀️

Merci d'avance !

Hi everyone,

Today I had my first physiotherapy session at home, and honestly, I came away feeling really disappointed.

For some context: I'm not diagnosed with POTS. My neurologist mentioned the possibility of dysautonomia but wants to wait for more test results before drawing any conclusions. In the meantime, he prescribed physiotherapy and occupational therapy because he currently suspects a functional neurological disorder.

I explained my symptoms to the physiotherapist and showed him the document I'd prepared with my symptom history and heart rate recordings. I also told him that I've been wondering whether POTS could explain some of my symptoms, although I know I'm still in the diagnostic process.

The problem is... today happened to be one of my "good" moments

The assessment mainly involved sitting, standing up, and walking around.

I was actually a little disappointed that we never did a proper lying-down-to-standing assessment, because that's usually when my heart rate changes the most. Most of the time I gain more than 30 bpm, and occasionally I've even recorded increases of over 60 bpm.

Since we only did sitting to standing, there was some increase, but nothing particularly dramatic.

During the appointment, I barely had any symptoms. No major dizziness, no near-fainting, nothing like what I usually experience.

Ironically, my symptoms came back later that day just not while he was there.

I know I should be grateful that I wasn't feeling awful during the appointment, and of course I don't want to have symptoms all the time.

But I can't help feeling frustrated because this was the one appointment where I actually "wanted" my symptoms to show up. I wanted him to see what my daily life is really like because he needs to know for help.

When he was leaving, I even apologized because I felt like he hadn't really been able to assess me properly. I told him that I understood it was difficult because, unfortunately, he hadn't actually seen the symptoms I struggle with most days.

I'm not saying he did anything wrong. I genuinely don't think he did. I just feel like the timing was incredibly unlucky, and the appointment didn't reflect my usual reality.

Another thing that left me feeling a bit discouraged was our discussion about using a cane.

My neurologist was actually the one who first suggested that a cane might help with my dizziness, near-fainting episodes, and balance problems.

At first I wasn't very comfortable with the idea, but after thinking about it for almost a week, I realized that I already rely on walls, furniture, or sitting down whenever my symptoms become overwhelming 😅 So I started thinking that maybe a cane could actually make me safer and help me stay independent.

The physiotherapist immediately said that he didn't think I needed one because I still go outside by myself.

The thing is... I think we misunderstood each other.

I don't actually spend much time outside. Most of the time, I'm in my room because of my symptoms.

It's also not that I never have falls or near-fainting episodes, I do but the difference is that I'm no longer afraid of them.

That doesn't mean they're not happening. It doesn't mean going outside is easy.

It just means that I don't want fear to become another thing that limits my life.

I know myself. If I start being afraid of leaving the house, my world will become even smaller than it already is.

So when I said I wasn't afraid of going outside, I didn't mean that my symptoms aren't severe. I only meant that I've chosen not to let fear stop me from trying. And I never go outside alone, it's easier.

I left feeling like I hadn't managed to explain that very well.

Has anyone else experienced something similar?

Has physiotherapy been helpful for your POTS or dysautonomia?

Have you ever had an appointment where your symptoms were low, making you feel like you couldn't show what you actually live with?

I'd really appreciate hearing your experiences because I'm feeling quite discouraged right now 😩

Hi everyone,

I had my first appointment with a neurologist today, and I wanted to share how it went because I had been incredibly anxious about it.

For some background, I've been dealing with symptoms for several years that have gradually become worse: palpitations, significant tachycardia whenever I stand up, difficulty remaining upright, dizziness, near-fainting (and a few actual falls), overwhelming fatigue with very long recovery after exertion, and brain fog.

Before the appointment, I put together a detailed folder with a timeline of my symptoms, previous test results, and a journal of my heart rate measurements. He actually took the time to read through it, which was already incredibly reassuring.

The neurological examination itself was normal (finger-to-nose test, balance, reflexes, etc.). He told me he didn't see any obvious structural or mechanical neurological problem.

He did mention the possibility of dysautonomia, although he didn't go into much detail.

He didn't specifically mention POTS or ME/CFS, but he didn't dismiss those possibilities either.

Just to be clear, I'm not saying that I have either of those conditions. I'm still very much in the diagnostic process. POTS is something I've wondered about because many of my symptoms seem to fit, but that doesn't mean I actually have it. As for ME/CFS, I'm even less certain. It's only crossed my mind because of the profound fatigue and how long it takes me to recover after even small amounts of activity, but I honestly have no idea whether it applies to me.

For now, he wants to wait for the results of my 7-day Holter monitor and any additional testing before drawing any conclusions.

In the meantime, he prescribed:

medication for my migraines;

home physiotherapy to help prevent falls and improve safe mobility;

home occupational therapy;

he also suggested using a cane if needed to make walking safer;

and he mentioned that we may consider a sleep study before my next appointment.

At the end of the appointment, I completely broke down.

I told him that the hardest part isn't just the symptoms themselves—it's everything I've had to give up because of them. I had to stop my studies, I can't work anymore, and there are days when I'm so exhausted that I can't even watch a TV show or use my phone.

He simply told me that what I was describing really affected him and that he believed me.

Honestly... hearing those words meant so much.

I've had several medical appointments in the past where I felt like my symptoms were minimized or dismissed, so simply being believed was incredibly comforting.

At the same time, I left feeling a little frustrated because I still don't have any real answers. It feels like I'm somewhere in between: everyone agrees that something is wrong, but nobody knows exactly what yet.

Has anyone else had a similar experience?

Did your neurologist also start by treating the symptoms while waiting for more tests before investigating dysautonomia or POTS further?

I'd really appreciate hearing about your experiences.

Thank you to everyone who took the time to read this. ❤️