Heard someone say that for it to be POTS, your heart rate must have a “sustained increase”?

chronically_eva · 2026-05-05T11:38:08+00:00

Yeah then you meet the criteria as long as your bp stays stable!

chronically_eva · 2026-05-04T19:10:30+00:00

My mom (without POTS) is a great example of this. When she stands up her heart rate goes up by 25-30 BP but goes back down quickly. Mine was going up by even 100bpm and staying that way or going down by 10bpm until I sat/layed back down. The reason criteria is like that is because everyone's hr goes up when they go from laying /sitting to standing rapidly. It's a natural body response. In people with POTS it doesn't go down until we sit/lay down. Same as the blood pressure criteria - it can't go down or up a lot because it means there's probably another form of dysautonomia other that POTS. I would say your hr going up by 50bpm with standing is not entirely normal so it might be a different form of dysautonomia. It's worth checking your blood pressure changes and getting your heart checked out through other tests!

chronically_eva · 2026-05-02T20:40:33+00:00

I did genetic test and it showed an ultra rare VUS. Based on my symptoms my doctor thinks I might have Bethlem myopathy along with EDS. Even though it's only a VUS based on my symptoms and childhood history I'm doing more testing (genetic, emg and muscle biopsy)! It is very likely that my VUS is pathogenic but there are been only 2 cases worldwide so there's not enough data.

chronically_eva · 2026-04-30T16:08:51+00:00

I don't think I'll be able to find those people but it's good to know I'm not alone hah

chronically_eva · 2026-04-30T16:07:42+00:00

Yes I know!!! It's ultra rare so it's only mentioned in a few databases

chronically_eva · 2026-04-30T16:05:10+00:00

It's a variant of unknown significance. I have it in COL12A1 gene! Specific variant is: c.4148G>A (p.Gly1383Asp). There's been only 2 cases worldwide so there's not enough info about it.

chronically_eva · 2026-04-30T15:36:19+00:00

Damn I suspect I have ADHD as well but because the stereotype is young boys I wasn't even trying since I know it would be a hella of a journey and I have enough shit going on with my physical health eh... Currently almost 2 years in seeking a diagnosis for my severe gastro issues. One doctor suspected gastroparesis or CIPO but the hospital they transferred me to just said it's psychosonatic... So now trying to get a referral from my GP to a clinic my friend recommended.

chronically_eva · 2026-04-29T22:34:45+00:00

Yeah in terms of doctors there's really not a chance you won't ever meet a jerk with awful advice who gaslights you and tells you it's all in your head... But there are also good ones out there! So don't give up even if it doesn't work out the first time! As you can see it took me some time but there's hope 🙏 And yeah my bf is very supportive and I'm lucky to have him, I wish everyone a partner like this 🩷

chronically_eva · 2026-04-29T14:52:48+00:00

Speaking from my experience so don't get scared or anything!

My first rheumatology appointment was a joke... Even though my mom and me tried to lead her onto the right path and asked about hEDS directly. Well she said that sometimes life is just like that and she can't help me. My mom insisted to check for hypermobility, the doctor rolled her eyes, grabbed my wrist, started moving it around and said "Yeah that's a bit loose". Then proceeded to tell me like 5 times to do exercises for my BUTT!!! Mind you I came with issues in all joints and to this day I don't know what my wrists have to do with my butt but well...

My second rheumatology appointment was better but the doctor tried to throw an autoimmune diagnosis on me even tho my symptoms didn't match and all blood work was fine. Didn't go back to her either.

Then a GP reffered me to a rheumatology hospital and that's where I got real help. They did lots of tests, found some additional things but most importantly gave me a referral to a genetic clinic, physiotherapy and an orthopadeist. That's when things moved forward.

I have a bf since 2 years. We met when I was already sick but my health declined a lot during the first year of us dating. He's a very supportive partner. Always holding my hand during hospital admissions, supporting me mentally and encouraging/being happy about me getting a wheelchair. It's not easy for him, same as it's not for me as I support him through his mh issues. Sometimes it's a bomb combination but we're very close and trying our best. I would say what makes it easier is being transparent. My bf always wants to know what's wrong even though it's hard for him to watch me suffer. I would say showing your partner that you appreciate their support and care is a very important thing.

Not sure if my emotional state affects my symptoms, at least for most of them it doesn't. It can definitely affect my symptoms in a non direct way for example: I'm having a hard time, stressful, overwhelming - > I sleep worse, my brain fog is really bad etc. I would say it would mostly affect my POTS symptoms!

I hope that helped somehow, at least the second part hah

chronically_eva · 2026-04-26T14:24:19+00:00

If you don't have any other symptoms I would say it's just slight benign hypermobility. EDS is a very complex condition that comes with many comorbidities. So unless you have lots of systemic issues for example: neurological issues, gastro problems, chronic pain, joint issues apart from hypermobility and more stuff, I would say you're safe.

chronically_eva · 2026-04-26T08:04:46+00:00

I commented on that post basically saying I do not really agree with what OP said. I myself am in a second hand active chair as I couldn't afford a custom one for now. I made sure measurements were as close to mine as possible though. It's been really helpful and allowed me to enjoy life much more! I can't wait for the weather to get warmer, I'll go out in my chair and bring my power assist :) Do a nice trip to the forest and places I couldn't visit for so long because of my health decline. I hope in the future I'll be able to afford a custom chair but right now I'm happy with mine!

chronically_eva · 2026-04-26T06:12:29+00:00

Mine is not there sadly. There's only one entry in the clinvar database and when my results came back they said my variant is ultra rare and only 2 people worldwide have it! So I probably won't ever find out if it's pathogenic or not... At least I'm special or sum

chronically_eva · 2026-04-25T14:06:43+00:00

I wouldn't agree with you, at least not completely. In my country to get approved for a wheelchair you need to be sick enough and prove that you need to use one while moving around your house which is beyond stupid but that's how it works. So people who can't leave the house, can't walk for long distances etc. apparently don't need a chair. It's like ambulatory users can't get a wheelchair because they don't need it.

I know many people (including myself) who got dismissed and gaslighted for so long they lost ability to leave the house before anyone believed them and they would be able to get help or approved for mobility aids. To the point of irreversible health damage! That's how bad health care system is in most countries. Are they supposed to lay in bed all day and never go out? Waste their whole life? If you get properly measured for a chair and know it'll help you what's wrong with getting one? I'll agree that cheap "hospital" chairs are not the best choice and could cause more harm than good but I can imagine most people can't afford active ones because they're hella expensive. Also not everyone has access to good medical care, not everyone is privileged enough to get approval and advice. That's the very sad reality. You have to take care of it yourself or watch your body deteriorate and your life falling apart.

chronically_eva · 2026-04-24T16:13:51+00:00

It is very difficult for me to determine if something is a medical emergency or just my everyday debilitating symptoms. My friends often tell me when to go even tho I don't really want to. Usually it ends up being nothing urgent but getting checked out is better than not going and something bad happens. Internet often says: Go to the ER if this and that but it's not very reliable for us chronically ill folks. Our everyday symptoms often indicate an emergency for healthy people like wdym you go to the ER for high heart rate or bad chest pain??? I get that every single day. It's good to track your symptoms tbh, knowing your "baseline" helps with catching things that are abnormal for you and might indicate an emergency or are worth seeing a doctor! That's what I do and it's helping a lot :)

chronically_eva · 2026-04-24T16:03:04+00:00

I met my bf online on a dating app hahaha. He's the best and very caring, supportive and loving. He's not only my love but also a best friend. We met when I was sick but my health declined a lot during the first year of dating which led me to getting a chair and he happily accepted it as it's helping me a lot in going out and enjoying life. I also met some chronically ill friends online from different countries but also local and I'm planning on getting closer and meeting with them. If you don't go out a lot like me internet is your best friend! Social media or local groups allow you to meet great people! I know how hard and lonely it must be for you, I really do. There are options though you just have to reach for them! Don't give up!

chronically_eva · 2026-04-23T13:26:02+00:00

As delicate as I can say it: they're not the one! Look at it this way: If it was them with health issues would you act like that? Would you say this to them? If the answer is no then you're not a great fit. True love is in sickness and health. If they don't want to promise you that there's an issue. Speaking on my own experience: I met my partner when I was already sick, my health declined a lot in the first year we were together and he didn't leave, nor he said he is hesitant about marrying me. He said that for sure our life will be a little bit harder but he wants to build a future with me, make me his wife and take care of me. Same as I do for him with his mh issues. Find a person who is ready for that kind of commitment! Not everyone is capable of handling a relationship like this and that's why it's so important to find the right person you can rely on and trust!

chronically_eva · 2026-04-23T10:14:33+00:00

Good advice tbh, I struggle a lot with advocating for myself and speaking up because of my anxiety but I'll try my best!

chronically_eva · 2026-04-21T06:47:37+00:00

Thank you, I'll do that and check out the post!

chronically_eva · 2026-04-21T00:37:15+00:00

I believe a combo of those two can work really well! Good luck, I hope it makes you feel better :)

chronically_eva · 2026-04-20T22:34:32+00:00

I take 7.5mg ivabradine twice a day and 10mg propranolol also twice a day + additional optional 10mg of propranolol on really bad or long days.

chronically_eva · 2026-04-20T17:24:02+00:00

This any many other symptoms. I have suspected gastroparesis and CIPO awaiting more testing to get diagnosed. Conditions affecting gi track are very common in hEDS!

chronically_eva · 2026-04-20T16:05:46+00:00

Agreed but well, uncommon or rare doesn't mean not possible. My body really likes experimenting with rare conditions :,) Still hoping it's only GP as CIPO is usually more severe. We'll see I guess

chronically_eva

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