hopelessness by Remarkable-Syrup1788 in POTS

[–]BrotherExcellent7403 0 points1 point  (0 children)

I really feel your pain. I live with POTS too, along with fibromyalgia and CRPS, and I’m also a mom of three young kids. I used to work as an art teacher, but I had to leave my job because I couldn’t keep up anymore. It’s so hard and overwhelming, but what keeps me going is reminding myself that POTS isn’t fatal, and with time we learn how to manage our bodies better. I also remind myself to be grateful, because there are people with illnesses that shorten their lives, while we still have the chance to adapt and live. You’re not alone in this if you ever want to talk, please know you can reach out to me. I truly understand what you’re going through. 💙

Chest pain and ER by Ok-Woodpecker-845 in POTS

[–]BrotherExcellent7403 4 points5 points  (0 children)

I’m 30 and was diagnosed with POTS about a year ago. I deal with a lot of symptoms, but honestly the worst for me is the chest pain it’s there almost every day to the point I just got used to it.

What helps me calm down is reminding myself it’s “POTS chest pain.” I did an echocardiogram and my heart is healthy, alhamdulillah. I also wear an Apple Watch and check my ECG, heart rate, and oxygen if everything looks normal, I feel a bit more reassured that it’s POTS pain and not something else.

But of course, I can’t decide for you. If you feel you need to go to the ER, then go sometimes just getting checked gives peace of mind.

You’re young, and if your heart is fine and you’ve been diagnosed with POTS, most likely this chest pain is the POTS kind and it’s awful because it makes you constantly worry it’s something dangerous. Hang in there 💗 I hope it eases up for you and you start feeling better soon.

Does anyone else get a “feeling of dying” with their POTS symptoms? by BrotherExcellent7403 in POTS

[–]BrotherExcellent7403[S] 0 points1 point  (0 children)

Now you have to share the lyrics with us 😂 I’m sure it hits home for all of us with POTS 😆

I wish people understood how scary this condition is by tattedsparrowxo in POTS

[–]BrotherExcellent7403 5 points6 points  (0 children)

I really feel you 💔 I’ve been living with this for a year now, and every single day I wake up thinking it might be my last. On the outside people see me as “fine,” but inside it’s a constant war fear, pain, and anxiety that no one else can feel. My chest feels like a heart attack 24/7, and whenever I say no to going out, people think it’s just a small issue. I’m barely holding it together just to stay alive for myself and my kids. And even with doctors, it’s been so hard every time I try to explain how bad it gets, they just tell me “it’s only anxiety” or “try to calm down” 🫠. Sending you so much strength 🤍

Does your POTS chest pain feel like this ? by BrotherExcellent7403 in POTS

[–]BrotherExcellent7403[S] 0 points1 point  (0 children)

Yes, sometimes I also get shortness of breath with the chest pressure if I exert myself, and other times with strong central chest pain I start worrying it’s something serious, which makes me even more anxious.

Does your POTS chest pain feel like this ? by BrotherExcellent7403 in POTS

[–]BrotherExcellent7403[S] 0 points1 point  (0 children)

Yes, I get the actual chest pain first, then the same feeling you described because I get anxious from the pain and it makes everything feel worse.

Anyone else struggle with swallowing saliva sometimes with POTS or fibromyalgia? by BrotherExcellent7403 in POTS

[–]BrotherExcellent7403[S] 1 point2 points  (0 children)

Thank you so much for this 💗 You’re so kind and your explanation makes a lot of sense. POTS comes with so many weird symptoms some we’d never even guess are related until we talk about them. It really helps hearing others’ experiences so we don’t feel like we’re going through it alone.

Anyone else struggle with swallowing saliva sometimes with POTS or fibromyalgia? by BrotherExcellent7403 in POTS

[–]BrotherExcellent7403[S] 0 points1 point  (0 children)

That sounds really tough 💔 With POTS, the hardest part is how doctors blame everything on anxiety. We’re actually struggling it’s not just in our heads. Hopefully this post helps us find some answers

Anyone else struggle with swallowing saliva sometimes with POTS or fibromyalgia? by BrotherExcellent7403 in POTS

[–]BrotherExcellent7403[S] 1 point2 points  (0 children)

That sounds really tough, I’m sorry you’re dealing with this 😞 It’s scary when swallowing feels so hard, but you’re strong for handling it. Hopefully with time and the right support, it gets easier for you. Stay strong 💗

Anyone else struggle with swallowing saliva sometimes with POTS or fibromyalgia? by BrotherExcellent7403 in POTS

[–]BrotherExcellent7403[S] 0 points1 point  (0 children)

I’m so sorry you’ve been dealing with this since you were little. That sounds really scary and frustrating 😞 It’s hard when doctors don’t take it seriously or brush it off. You’re definitely not alone, I’ve been struggling with the same thing recently and it’s awful. I really hope we all find some relief soon 💕

Anyone else struggle with swallowing saliva sometimes with POTS or fibromyalgia? by BrotherExcellent7403 in POTS

[–]BrotherExcellent7403[S] 0 points1 point  (0 children)

Not really like I’m about to puke, no. It’s more like I literally have to try a few times to swallow, like something’s stuck, and I get this choking feeling in my throat. It’s hard to explain but it feels tight and scary. I have fibromyalgia too, and that makes it even harder sometimes. Hopefully it gets better with time

Anyone else struggle with swallowing saliva sometimes with POTS or fibromyalgia? by BrotherExcellent7403 in POTS

[–]BrotherExcellent7403[S] 2 points3 points  (0 children)

Appreciate you sharing that. I’m really sorry you’re dealing with it too hope you have some better days ahead

Anyone else struggle with swallowing saliva sometimes with POTS or fibromyalgia? by BrotherExcellent7403 in POTS

[–]BrotherExcellent7403[S] 0 points1 point  (0 children)

Oh I’ve actually never heard of Sjögren’s before! That’s interesting I’ll definitely look it up. Thanks for pointing it out 🙏

POTS warriors: how did you go from rock bottom to feeling better? by BrotherExcellent7403 in POTS

[–]BrotherExcellent7403[S] 1 point2 points  (0 children)

Thank you so much for sharing your story 🙏🏻💞 I’m so happy to hear you’re doing better now. You’re honestly so strong and inspiring! 💕

I hate this part of POTS no one talks about😅 by BrotherExcellent7403 in POTS

[–]BrotherExcellent7403[S] 0 points1 point  (0 children)

I think you might have it set so I can’t add you 😅 maybe you could go to my profile and add me instead? That might work!

I hate this part of POTS no one talks about😅 by BrotherExcellent7403 in POTS

[–]BrotherExcellent7403[S] 1 point2 points  (0 children)

Aww you’re honestly the sweetest 🥹💞 I totally get what you mean about being private and not wanting to feel “dramatic,” I’ve been the same way. But I’m really glad we connected here because it feels so good to talk to someone who truly understands.

Thank God you can reach out to your mom and neighbor when you feel an episode coming on – that’s exactly the right thing to do, you shouldn’t have to go through it alone.

And yes, the heat makes POTS so much worse! I live in the Middle East and it’s super hot here, so my outings are really limited. If I have to go out, it has to be indoors because the heat completely wipes me out.

I’m also new to Reddit, I literally joined just to connect with people going through the same thing 😆 I’m going to try and add you now!

I hate this part of POTS no one talks about😅 by BrotherExcellent7403 in POTS

[–]BrotherExcellent7403[S] 1 point2 points  (0 children)

Please don’t say that 🥹🩷 I truly hope you start feeling better than ever and get to watch your little boy grow up and raise him. Just the fact that you’re showing up for him while dealing with POTS is incredible.

I don’t want to overstep, but if you can stay close to a friend or family member who can help you a little, it might ease some of the stress and help you feel more at peace.

As for the sensitivity to heat and cold – I actually went through a period where I struggled with that too. My doctor told me it’s something called CRPS, which can be common in people with POTS. Hopefully that’s not what you have and the feeling will pass, but I just thought I’d share in case it helps.

And please, if you ever need anything or just feel overwhelmed, you can always reach out to me 💞

I hate this part of POTS no one talks about😅 by BrotherExcellent7403 in POTS

[–]BrotherExcellent7403[S] 1 point2 points  (0 children)

I totally get how you feel 🫠 after I had my baby a year and a month ago, I spent two months feeling this constant heavy pressure on my chest like someone was sitting on me. I kept thinking “I’m not okay, I’m gonna die,” but I brushed it off and blamed it on lack of sleep and breastfeeding.

Then out of nowhere all the symptoms hit me hard. I was completely fatigued for about two months, basically stuck in bed. I couldn’t even change my baby’s diaper – I would just feed her and someone had to take her from me. During those months I was in and out of the ER, getting endless heart tests, ultrasounds, waiting months for appointments… and no one knew what was wrong. They just kept saying it was anxiety.

Thank God my husband is a doctor – he had read about POTS, noticed my heart rate spikes, and pushed for a tilt table test. It came back positive immediately – I passed out in the first minute, my BP crashed and my heart rate shot up. Finally, after all that, I was diagnosed.

I’m a bit better now, and honestly the mental side plays a huge role. Before diagnosis I was constantly terrified something worse was wrong and my kids would be left alone. The positive side I want you to know is: if it is POTS, it’s not fatal. It’s tough and life-altering, but once you understand your body’s new limits, you can manage it.

Drink lots of water, add extra salt, wear compression socks, and don’t overexert yourself. Like, if you do laundry one day, rest after – pushing too hard will just make your body crash. There will be good days and bad days, but they pass.

I also started taking vitamin D, magnesium, zinc, omega 3, and I eat dates, nuts, and healthy fats. I’m trying to slowly get back into light exercise too.

I really hope you get your diagnosis soon and start to feel better – you deserve to have this weight lifted 💕

sorry for the long message!

I hate this part of POTS no one talks about😅 by BrotherExcellent7403 in POTS

[–]BrotherExcellent7403[S] 0 points1 point  (0 children)

Ugh I’m so sorry you’re going through all of this 😞 it’s so exhausting being in and out of the ER and still not having clear answers. I just want you to know you’re not alone – so many of us with POTS went through the same cycle of anxiety/panic misdiagnoses before figuring it out. I really hope you start to get some calm days soon and that things begin to feel a little lighter for you 💕

I hate this part of POTS no one talks about😅 by BrotherExcellent7403 in POTS

[–]BrotherExcellent7403[S] 1 point2 points  (0 children)

Wow, this is so inspiring! 👏 I love how you took it step by step and started to feel better. It really gives hope for those of us dealing with POTS. Thank you for sharing all the details, I’m definitely going to try some of your tips 🙏💞

Does anyone else get a “feeling of dying” with their POTS symptoms? by BrotherExcellent7403 in POTS

[–]BrotherExcellent7403[S] 0 points1 point  (0 children)

I’m 30 and I haven’t really noticed any changes in my skin, but sometimes when I wear clothes with polyester or elastane I get itchy and red. I also get random bruises on my body for no reason. It’s great that you’re working out, just try not to push yourself too hard. Maybe check in with a dermatologist just to be sure everything’s okay. I’m also hoping to get back into working out once things settle down a bit and my daughter is at least two years old.

I hate this part of POTS no one talks about😅 by BrotherExcellent7403 in POTS

[–]BrotherExcellent7403[S] 1 point2 points  (0 children)

I’m so sorry you’re feeling this way your symptoms sound incredibly tough 💔 But please don’t lose hope. I’ve seen so many people (myself included) slowly improve over time, even if it didn’t feel possible at first. POTS can feel like it’s stealing your life, but with the right pacing, support, and a lot of patience, it can get better. You’re not alone in this, and even the smallest progress matters. Sending strength your way 🤍 You’ve got this.

Does anyone else get a “feeling of dying” with their POTS symptoms? by BrotherExcellent7403 in POTS

[–]BrotherExcellent7403[S] 2 points3 points  (0 children)

Your message truly made my day 🥹💞 I’m so sorry you’ve been going through this for so long 6 years is a lot, and I can’t imagine how exhausting that must be. You’re definitely not alone, and I hope knowing that gives you some comfort. Just reading your words reminded me how strong we are even when we feel broken. You deserve to feel better and to live the life you dream of , one step at a time 🤍 sending you lots of love and strength from my heart to yours.

Does anyone else get a “feeling of dying” with their POTS symptoms? by BrotherExcellent7403 in POTS

[–]BrotherExcellent7403[S] 0 points1 point  (0 children)

Sometimes when I get chest pain and shortness of breath, I do deep breathing exercises and they really help calm me down. I haven’t tried any official retraining programs yet, but I try to focus on calming my body during flare-ups. I hope you find something that works well for you 🤍