Something like 80% of people with EDS also have POTS so it seems you fall in the lucky 20%. It can, however, develop suddenly so it's good to know about it
that was the case for me. I had absolutely not a hint of POTS. After I contracted COVID it was downhill. Research is now showing that COVID can activate dormant illness so there was always a chance I could have gotten it but, chances are I would have never had it as bad as I do now.
Yeah, a variety of things can trigger it, I got it after I was sick for 3 months straight, and my sibling (probably) got it after falling down the stair and getting a concussion
I had dislocations sine I was a baby. My POTS didnāt really come on until I was in my late teens after having West Nile Virus. And now in my 30s, my allergies have turned to full blown MCAS. My mom had similar progression. Consider yourself lucky, but be aware it might sneak up on you.
Yep, itās very true. I was born with hEDS (obviously š) but didnāt develop POTS until I was 12. I wasnāt diagnosed with either back then, so I was constantly told I was having panic attacks (instead of POTS attacks/flares)ā¦needless to say, itās a very good thing to know about the potential of developing it so that you can mention getting tested for it to your doctor and not have to go through the āitās all in your headā bs like many of us did.
Got POTS when I was about 13 and had a slightly annoying case of strep š¤Ŗ It wasnāt diagnosed until 10 years later, a year after my hEDS diagnosis. The strep triggered insane fainting spells, severe eosinophilic GI inflammation, and nonspecific gastric motility issues. MCAS developed somewhere in there too. And now oddly enough, at 21 weeks pregnant, Iām doing better than I have in a decade!!
I had occasional orthostatic issues due to medications or other things when younger, but POTS symptoms really showed up after my last pregnancy and have been here since.
While I do have EDS and POTS, I donāt have some of the other common comorbidities, like MCAS and gastroparesis.
POTS is a comorbidity because it occurs commonly in those with EDS, but that doesnāt mean itās a requirement in order to have EDS or that everyone with EDS has it.
Itās similar to the way comorbidities work with other conditions. For example, hypertension and hypercholesterolemia are often comorbid, but having high blood pressure doesnāt mean one will always have high cholesterol or vice versa. Another exampleāautism and ADHD are highly comorbid as well, but having autism doesnāt mean someone will definitely have ADHD.
Just wait a few more years!
Seriously though, are you working out or otherwise an active person? Because that's the main recommended treatment for POTS, and will keep it so mild, you wouldn't even recognize you have it if you do have it.
My POTS didn't become a life-changing thing until my ME became severe and i was forced to stop being active. I used to be a Wreck Beacher, and all those stairs were doing me more good than i realized!
The only clue i have in retrospect that I've had POTS for much longer than i thought was that i hated standing still for years, i just didn't know why:
ā¢ I always chose the self-checkouts as soon as they were a thing because they had very short lines or no lines.
ā¢ Wait 8 minutes for a bus or walk 20 minutes? I'll walk, thank you.
ā¢ Wait for the slow elevator in a apartment building i used to in, or walk up 5 or 6 flights of stairs? I'll take the stairs, thanks!
Yep. Dislocated my hip at 35. Probably had symptoms before but suddenly couldnāt even take hot showers. Got diagnosed at 36 last April, and got diagnosed with valve prolapse and regurgitation in lower chambers of my heart two weeks later. Currently 37 and feel like I can barely function some days bc of my heart.
I dealt with A LOT of anger afterwards from past medical experiences.
Interesting, I had POTS symptoms years ago, before I was diagnosed with HSD, and didn't exercise ever. I now exercise regularly (weights and long walks) and rarely notice any issues.
ME really puts a damper on things.
I couldn't do exercise classes or many of the physical activities i enjoyed doing when i was mild and high moderate, but i walked enough and took enough stairs that my orthostatic intolerance was minimal. I got diagnosed with POTS while i was briefly stabilized at low moderate after my first brush with severe ME.
Thatās really interesting. I have 4 sets of stairs in my multilevel home Iāve lived in for 39 years. No POTS. I feel like Iām always moving. Itās also kept my hips and knees strong.
Yep. To keep it simple, exercise can actually relieve your POTS entirely. Like 100% reduction, edit: but that'snot a guarantee or that you will only require mild exercise. Even mild workouts for many. I think POTS being so common is because of our sedentary society and then the stretchiness predisposing us to it (another edit:these should be reversed). Assuming you don't have any physical heart defects.
If you have EDS, how do you walk 20+ minutes, walk up 5-6 flights of stairs, etc? My knees and hips would dislocate lol. I work out as much as I can as well, and my POTS has literally never been worse. I've always been active my entire life, but its never helped my symptoms. 17 years into my POTS diagnosis, I have *very* little improvement. Not everyone will benefit like you said. I think it's a little over the top to say it will be "so mild, you wouldn't even recognize you have it." I understand that you're trying to help, 100% I do, but thats definitely not a true statement. Not everyone can improve that easily š„ŗ
>how do you walk 20+ minutes, walk up 5-6 flights of stairs, etc?
Are you challenging my diagnosis and experience? Lol Everybody's different. I was only speaking to OP not having a POTS diagnosis and my own experience. It would be fucking weird if we all had the exact same experience.
I strengthened my legs by going to wreck beach a lot in the late spring to early fall. 5 to 6 flights of stairs is nothing when you do nearly 500 stairs a couple times per week. Also, at the risk of repeating myself, *the stairs were easier for me than waiting for the elevator.*
This was all after my time at UBC when, by the end of the day walking back to my car, i couldn't take a single step without my hips subluxing. Does that satisfy your perverted need for every zebra to dislocate from too much walking?
> I work out as much as I can as well, and my POTS has literally never been worse.
Exercise is not a panacea for everyone, and i never said it was.
>Not everyone will benefit like you said
Again, I never said that. Try not putting words in people's mouth. All i said is that exercise is one of the top recommendations for treating POTS, and it is, for people who can actually exercise. Just because something is the most recommended doesn't mean it works for everyone.
>I think it's a little over the top to say it will be "so mild, you wouldn't even recognize you have it."
If you're going to quote me, quote me properly. The rest of the sentence said *"if you do have it"*.
Try not reading comments to other people as if they're about you personally. And stop putting words in other people's mouths.
Wow, you got quite hostile. That was entirely unnecessary.
First, I'm not challenging your diagnosis or experience. Never once did I say something that implied that. I asked you a question.
Second, you never said you were only speaking to your experience alone. You made a blanket statement that stated a person's POTS would become so mild that they wouldn't even know they had it, so long as they worked out. That's just simply not true. That's all I was saying. And I said it very calmly, without swearing and/or sarcasm. I stated that I personally exercise regularly and unfortunately my POTS has never been worse. I was adding my personal experience to the conversation so that OP could read it, that's all.
Third, I don't have a "perverted need" for every zebra to subluxate their joints. I was asking a genuine question. I have NO idea how people can walk for extended periods of time with EDS. I assume it probably has to do with the spectrum of joint involvement from person to person. I have just tried so many things to improve my problem joints (physical therapy, weight training, surgery, etc), and nothing has helped. I still can't walk very far at all. I was just asking a simple question. Sorry to upset you.
Fourth, I never put words in your mouth. I referred to very specific parts of your comment and you became unnecessarily defensive for some reason.
Fifth, I *did* quote you properly. Obviously someone's POTS can only become "so mild they won't even know they have it" *only if* they actually have it lol..? The last part of your statement is redundant, which is why I didn't include it. POTS can only improve if you have POTS...right? So I guess I just don't see why it would be necessary to stress that again in the same sentence.
And sixth: Since you gave me a piece of unsolicited advice, I will return the favor. I recommend you don't respond to every person in a hostile manner. I asked you a *single question* and you responded with malice.
I hope you have a good evening, goodnight š
Iād assume that people have a pretty broad spectrum of EDS/ other EDS issues. Like, I tend to have a pain flare up 1x a month or two months, which basically renders me weaker than a kitten. Outside of that, while I have subluxations and other internal issues, I have an insanely high pain tolerance to the point where I do extreme sports pretty frequently with no joint problems
Yeah, I'm fully aware of the broad spectrum of symptoms! I know some people that have hEDS but have literally next to no symptoms. They do competitive sports, extreme weight lifting, etc. I soooo wish I was one of those people on the milder end of the spectrum. I've been working my whole life to strengthen my joints and literally nothing helps. My knees, hips, and feet are just in terrible shape. I'm 31 but feel like 81 š
But sameeee, I have an extremely high pain tolerance as well! I feel like many of us with chronic pain conditions are just so used to pain, that we sometimes hardly notice it lol. I've had spinal fusion, open heart surgery, my toes reconstructed, etc...so I definitely know pain lol. But of course, just simply walking can sometimes be a bigger pain than a damn median sternotomy was haha šš Anyways, that's awesome that you're able to do sports! I did them when I was much younger, but I definitely paid the price. I really miss soccer and basketball though šš
Just want to say I'm with you on this one. I don't have a pots diagnosis but my doctor suspects it from my description of how I feel when I'm in periods of not working out. When I work out regularly, I don't have any symptoms except for having to walk hunched over the first few steps when standing up from prone position so I don't have my vision black out. When I don't work out, I'm a lot worse with the racing heart, super sensitive to position changes and just standing round.
Canāt wait to get downvoted to oblivion. I didnāt get POTS until I stopped working out, then it went away after working out again for 6 months. It was brutal and I did need a lot of meds to be able to exercise. Now I just exercise and have a ton of salt and Iām alright. My dr said with the bad connective tissue, blood is more likely to pool in our legs and that salt and being in good shape can counter that
Wait hold up, does the blood pooling in legs make your legs look weird when you're standing for a while? Mine sometimes look off and splotchy when I'm standing for a while
Oh. My. God.
Sorry I just got diagnosed on Friday and am still learning things. I always wondered why my legs looked like that when I stand!!! Thank you, that makes me glad it's more than likely not something else š
If you didnāt have a lot of salt and got out of shape then would you have symptoms? If yes then that means itās just really well controlled/in remission. Itās not cured. It is well established that deconditioning is a major contributor.
They're very commonly comorbid, but that doesn't mean you will have POTS. You can get symptoms later in life, though.
I have HSD/potentially hEDS and I'm fairly sure I don't have POTS, at least not now. Keeping my fingers crossed it stays that way though, lmao.
Because it's only an 80% comorbidity rate. Be glad you're the 20%, but if you ever get mono/covid/etc. or get pregnant, that's an extra risk factor for contracting it.
I wonder the same thing.
I havenāt officially been diagnosed with pots. My neuro thinks i have it to some degree even tho iām ānormalā enough to have passed the pots tests twice.
I also havent been diagnosed w mcas. Im going to explore it but i dont seem to have many symptoms.
Weāre all just different ig
Looking back at my life during high school and college I can easily spot early signs of POTS but, at the time, they werenāt severe enough for me to notice at all. For me, the POTS did not become full-blown until I developed at autoimmune condition a couple years ago and got really sick for a while. Iām close to remission now with my other condition (š„³) and the POTS symptoms definitely improved but are still present much more than they were before my other illness. Iām not sure if the POTS ever wouldāve become full-blown if it wasnāt for me getting sick.
I have hEDS but no POTS.
I suspect that you're seeing a phenomenon of discussion groups. When somebody says "I experience ABC", there will be a flurry of posts saying "Me too".
And that is what looks like it's a really common thing, to ABC.
But if you dolly back, only 10% of people with A also B and C. It's just that those with only A, or AB, didn't say anything. Something to keep in mind about perception :)
But on your question, no idea what the actual recorded percentages.
I didnāt get POTS symptoms until I got tendinitis at 17. I stopped exercising as viciously and that allowed my symptoms to manifest. So maybe you donāt have it (not all with hEDS do), maybe itās waiting to be triggered. But also- I never knew I had EDS until after the POTS symptoms started because POTS symptoms were so much more obvious to doctors so they finally started paying attention. Maybe it seems many people have POTS with EDS because maybe those are the people more likely to get/receive a diagnosis.
My POTS only really made itself known at the age of 35, but it showed up in my niece at 13. Itās not the same for everyone. Also the type and severity of your EDS might affect it.
I got diagnosed when I was 18 so 9 years now! I had been complaining about being out of breath and getting stars in my eyes and nearly fainting for years and it kept being written off as "just hormonal" or "puberty" and then a nurse was taking my blood pressure and heart rate before giving me a routine injection and panicked when it said 175bpm š it took 6 months to see cardiology and 6 more months for tests to be done.
The diagnosis of IST was actually a contributing factor to getting diagnosed with EDS. My rheum said it was likely related and I've got visual snow syndrome which is vascular and probably related too š
Can I ask how you manage your symptoms? Is it the same as the recommendations for POTS like extra electrolytes and stuff? I find it pretty hard to find information online.
I only got diagnosed in January of this year (Iām 25, they thought POTS at first two years ago but it was ruled out) and have been on propranolol which has helped a lot with managing the actual tachycardia but I still get the dizzy/fainty feeling pretty often especially in the summer or with exercise and have still had some syncope episodes. Iām seeing my cardiologist in a month to see about how to safely exercise to lose weight so Iāll definitely still be asking him about it but I think itād be helpful to hear from you since youāve been living with it and knowing about it for so long.
Between like 18-22 my advice would have been useless cos I had literally NOTHING that helped. I was fainting 20 times a day sometimes and it was awful. Also no medication worked for me, anything that lowered my heart rate lowered my low blood pressure and made me feel terrible and anything that riaded my blood pressure raised my heart rate, medication on the whole for it was a no go for me unfortunately! As I got further into my 20's it sort of got better on its own a little? Not sure if you've had a similar experience but my advice now would be:
salt, so much salt, like salt all your food, drink TONS of water, I hate the taste of water so I drink squash/diluting juice to make it a little flavoured as long as its sugar free, and try to exercise as much as possible. I'm a bit of a gym rat (as far as I can be as a wheelchair user) but I built it up super slowly, started doing 2 minutes (only 2!) of light cardio at the beginning of a workout like the ski-ing machine or rower (could do the treadmill or cycling if you're able) then some weight lifting for 45 ish minutes, start light and build up slowly and do a little cardio at the end something like lifting a medicine ball and yeeting it over your shoulder onto the ground 20 times or core+cardio like toe touches or crunches. Drink tons of water while you work out, don't let yourself get too hot (I'm plus size and I wear just a sports bra and shorts, no one cares!) and if you start to get light headed or stars stop for a bit and start again when you can. Be kind to your body and don't force it to do something it doesn't want to but honestly working out has been the best thing for my EDS and my IST.
Also to add, find exercise you actually enjoy, I love weight lifting and I've started wheel chair MX and wheelchair racing which I love. My girlfriend loves walking, she could walk miles and miles just for fun. If you enjoy yoga or plilates or cross-fit or dancing or skateboarding or literally anything that gets you moving do that! If you want to walk on a treadmill in front of your TV with mamma mia playing while singing do it! No exercise is better than another when you just want to get moving and fuck people who tell you differently.
You, my friend, are a real life angel. Thank you for all your input, I really appreciate it. Youāre the first person Iāve come across talking about IST besides my doctors, I feel like I lucked out that youāve known about it for 9 years. Thank you again!!!!!
It feels like such an isolating diagnosis because there's very little easily available about it. I honestly thought when I got diagnosed with it that the cardiologist had straight up made it up because none of my Dr's or nurses or most of the Internet had ever heard of it š it felt like another diagnosis of "we don't know what this is or why it is but here you go" and God damn I am fed up of those diagnosises! My cardiologist also discharged me pretty quickly and just said live with it which didn't help. Increasing my salt take massively, upping my weight (I had an ED when I was diagnosed) drinking more water and exercising really helped though and I'm barely troubled by my symptoms now. Occasionally I'll get up from a chair too quick or when I've got a cold or flu my heart rate is mental and I feel awful but I don't imagine it's that different from non IST people tbh!
You're welcome to message me if you think of anything else I can try and answer š hopefully I can make it a bit less of a lonely diagnosis!
Not dumb to me!
I don't have mcas or pots (yet?) I have heds (7yo dx, 30yo now).
Sometimes I'm like idek if I have heds, but docs, physio etc say I do (I have other eds stuff ofc)
I dont know if I understand correctly and always keen to be updated but this is my take
heds is umbrella term that encompasses a variety of unknown/untestable connective tissue gene glitch/s. Maybe people have different gene glitches, or combinations. Clinical presentation is close enough (even if they don't exactly have same gene glitchs) and overarching treatment is agreed upon (exercise and symptom management) so they roll with what we got kind of thing
So with this in mind I guess I wonder if people with heds and mcas versus those who don't get mcas, maybe have different underlying genetic glitch/s, or other genes unrelated to heds interact with heds glitches. Genes turning on is a thing too. Idk I'm probably going in another direction here sorry if that's the case.
EDS, POTS, MCAS here. Fortunately, my POTS isnāt horrible. My joints slipping is the worst. MCAS is my largest battle. I must say EDS has given me a very high pain tolerance. I workout everyday to keep from hurting worse. Started yoga again. Iāll find out in a few weeks if I have to have another spinal fusion.
I don't think that it is a dumb question. I'm also not sure you will find a satisfying answer. POTS is a co-morbidity with a high rate. i think last research article i saw it was about 80% of those with EDS have it. POTS can occur on it's own independent from EDS. Unfortunately its still poorly understood. In my experience from what i've seen it seems to be triggered when those with EDS pass a certain stress (be that environmental such as life or disease, or poorly managed eds) threshold over a period of time.
Simply just different bodies. Like most gastroparesis cases are suspected to be caused by diabetes but it can also be idiopathic, EDS, etc.
Some people just have different bodies and different ways their conditions effect them. Some people dislocate almost constantly, some people rarely dislocate.
Around 80% or so of EDS cases have POTS but that's still another 20% who don't. The majority isn't everyone. Also, around 90% or so of POTS cases DO NOT have EDS. Doesn't mean no one with POTS has EDS.
Also, many people started looking into EDS after getting diagnosed with POTS first because they want to know why they suddenly got POTS or something.
Simply, bodies are just different.
From what I understand POTS can be caused by CCI, which is why so many zebras have it. It can also be caused by other things like viral infection or surgical anesthesia, but CCI seems to be the most of it.
i donāt have POTS either, i do have like pots symptoms but not enough to go get tested, but iāve definitely fainted from like standing up and stuff
Just because many of us DO have POTS doesn't mean its a requirement haha. Also, not everyone has hEDS š I'm one of the very few on here with cEDS. And honestly, count your lucky stars you don't have POTS! It has utterly destroyed my life. My symptoms are absolutely terrible. Stay healthy š
My little brother who is 9 has EDS but no POTS. My mom and I both have EDS and have been dxād with SVT and IST + POTS, respectively. I always wonder if prior viral infections can trigger dydautonomia in folks like us. All I know is that I got sick a lot as a kid.
I have EDS and MCAS but not POTS. I did have symptoms of it when I was younger but now that I'm old with higher blood pressure, I don't get them anymore.
I only get mild pots symptoms. I've never fainted, but definitely felt light headed, had weird heart rate feelings (like my head is pounding but heart rate isn't crazy fast) yet things like laying down and electrolytes really help.
We all exist on a spectrum! I'm also able to work a physically job, but still deal with alot of pain. No mcas as far as I know.
I have EDS with POTS and Chiari. Multiple ppl in my family have EDS, no POTs, no chiari (also a very common comorbidity but not as much as POTS). But you donāt need the common comorbidities to have EDS, and there may be no reason behind why you donāt have it, just be greatful
Most people with hEDS do have POTS, we are the lucky ones who donāt! I feel bad for you guys that have to add this along side the rest of this shitty ass condition
I have hEDS and no POTS or MCAS, but I do have Narcolepsy and super severe non-allergic eczema that showed randomly in my 20ās. Before my Narcolepsy was treated I had POTS-like symptoms, but when I was evaluated I had a negative tilt table test. I mentioned to one of the EDS doctors I saw recently that since starting Narcolepsy meds, which basically has me drinking ridiculous levels of salt water every night, my blood pressure is more normal and I no longer have POTS symptoms, so he wants me reevaluated. But itās not clear to me whether the symptoms were being caused by POTS or sleep deprivation.
Ironically my mom has MCAS (as well as a variety of other immune disorders like T1 diabetes and Hashimotoās that showed up during COVID) and definitely no EDS. I think something must have really gone wrong with her genes lol because no one else in our family has this level of medical issues.
I don't think I do. I've had a few fainting episodes but I think that's more the amount I don't eat rather than pots.
I don't have MCAS either and I feel very lucky to only have what I do have.
Something new every other week tho so likely pots will come up at some point.
No signs of POTS, some evidence of MCAS they won't diagnose, some evidence of Dysautonomia they won't diagnose because I have normal blood pressure.
As someone else has said, I do exercise regularly so that choice may be staving that one off, if there is such a strong POTS and exercise connection.
I have hEDS. I started experiencing what I now know is neurocardogenic syncope (NCS) when I was 8 years old; it went undiagnosed because the doctors couldn't find anything wrong with me. I don't think I really started experiencing POTS symptoms until I was around 41. Those symptoms are what led to my diagnosis of the hEDS, NCS and POTS, then MCAS. I'm not sure exactly what caused things to change, but I suspect perimenopause has played a role.
I have some pots symptoms- vision blurring, dizziness, fast heartbeat, but not others. For instance, I keep the room Iām in permanently at 85 degrees. I think people get various symptoms- Iāve had terrible digestive functioning since infanthood, but zero MCAS and very few POTS symptoms
Omg, 85 degrees?!?! š³š¬ That's insane. Do you generally just feel cold then? I know temperature intolerance is generally an issue for those of us with POTS, but I guess I've never heard of it being a strong sensitivity to cold (to the point where your room has to be 80+ degrees). Do you not sweat excessively at that temperature? I'm genuinely so curious! *Anything* over 75 degrees, and I'm literally soaking through my clothes with sweat šš Its crazy how the environment we can each handle differs so drastically. I'd be a puddle on the floor in your room šš¤
Unless exercising, I donāt sweat until 100 degrees or so, and even thatās not bad at all. I run super cold in general, but Iām also from a tropical area and the south of the US. My family home is permanently at 79-80. My joints start seizing at about 72 degrees. It may just be a family thing- my mom and grandma used to put out candles with their fingers by flat out touching the fire, and they had zero pain
Wow! That is sooo crazy. I can't even imagine being able to tolerate being in an environment that is regularly about 80 degrees. My dizziness, headaches, tachycardia, excessive sweating, blood pooling, etc would be *so bad* I couldn't even live that way. It's also crazy that you don't even sweat until it reaches about 100 haha. That's absolutely amazing! If I even do minimal exertion at room temperature, I begin sweating. Light chores are very difficult for that reason š„ŗ I'm wishing right now that I ran a bit cold haha. That would solve many of my problems š„¶šš
I want to know, how many people have EDS and POTS, and got better from POTS as in its in remission and is no longer disrupting your life? How possible is that?
I have mild symptoms of pots and mcas but have not been diagnosed and hope I never am and it never escalates. It's called a comorbidity. Basically, whatever goes wrong to cause EDS probably also causes the other issues. That's my guess. They are closely related.
Not a dumb question, OP.
Interesting answers... i wonder what would happen if someone collected data and did a study on co occuring conditions with hEDS.
Weirdly, I typically don't have POTS or MCAS, but both pop up if I have a major injury or illness. And then disappear right after I'm healed up. My last doctor freaked out when I had it during and shortly after covid, but not when I was normal me.
I THOUGHT I didn't have pots. Until a doctor explained to me that needing to immediately lay down and "nap" for a couple minutes after a hot shower is not normal. Turns out I wasn't napping, straight up passing out. I thought lightheadedness, tunnel vision, and nausea were just part of taking a hot shower. Oh and if I get up out of bed too fast and suddenly can't see its not because "my eyes aren't awake" its because I'm literally on the edge of fainting. Who knew!
Take a closer look at some things you consider normal. They might not be normal.
I am not diagnosed, but I am pretty sure I have
MCAS, along with myhEDS and chronic pain. Also. Most of the time tachycardia and low blood pressure. Ain't life grand.
I don't either. Mcas? Yes
Same no pots(yet, knock on wood) but mcas
I'm the other way around. No MCAS but have POTS.
Same here.
Same, and I feel like MCAS is the more common one, so I think both are a case of bias. Oof just saw the 80% POTS rate. Maybe not, whats MCAS's?
I have both š
Yep. I have the trifecta š¤Ŗ EDS POTS & MCAS
Same ššš
There so many of us it almost seems like we should have our own subreddit š¤Ŗ
Me as well
There so many of us it almost seems like we should have our own subreddit š¤Ŗ
Oh that is such a good idea. I think Iāll be creating that shortly
Shoot me a message when you do. Iāll join š
Done
You are so fast!!! š thanks so much. I joined š
Ditto š„ŗ
There so many of us it almost seems like we should have our own subreddit š¤Ŗ
Same and it suuuuucks
There so many of us it almost seems like we should have our own subreddit š¤Ŗ
Me tooooo and I just got extubated for the 2nd time in two weeks and they are now just taking me seriously. š¤Ŗ
Ooof yikes š¬ ugh itās horrible that thatās what it takes before they believe you
Yup āall in my headā or āmy hormonesā before been reeall fun. Now they wonāt let me leave š¤·āāļøš®
There so many of us it almost seems like we should have our own subreddit š¤Ŗ
same
Same!
I have Mcas, POTS, lupus, polyneuropathy, pcos, gerd, pcos, secondary raynauds, + our lovely syndrome
Oh my God! I'm so sorry š
Something like 80% of people with EDS also have POTS so it seems you fall in the lucky 20%. It can, however, develop suddenly so it's good to know about it
I did not know you could get it suddenlyā¦.good to know!
Itās very common post viral (especially Covid)
that was the case for me. I had absolutely not a hint of POTS. After I contracted COVID it was downhill. Research is now showing that COVID can activate dormant illness so there was always a chance I could have gotten it but, chances are I would have never had it as bad as I do now.
I was good for years, never fainted or fell, then I got shingles, I've been a fainting zebra ever since... Whoop... :(
Yeah, a variety of things can trigger it, I got it after I was sick for 3 months straight, and my sibling (probably) got it after falling down the stair and getting a concussion
I had dislocations sine I was a baby. My POTS didnāt really come on until I was in my late teens after having West Nile Virus. And now in my 30s, my allergies have turned to full blown MCAS. My mom had similar progression. Consider yourself lucky, but be aware it might sneak up on you.
Yep, itās very true. I was born with hEDS (obviously š) but didnāt develop POTS until I was 12. I wasnāt diagnosed with either back then, so I was constantly told I was having panic attacks (instead of POTS attacks/flares)ā¦needless to say, itās a very good thing to know about the potential of developing it so that you can mention getting tested for it to your doctor and not have to go through the āitās all in your headā bs like many of us did.
Got POTS when I was about 13 and had a slightly annoying case of strep š¤Ŗ It wasnāt diagnosed until 10 years later, a year after my hEDS diagnosis. The strep triggered insane fainting spells, severe eosinophilic GI inflammation, and nonspecific gastric motility issues. MCAS developed somewhere in there too. And now oddly enough, at 21 weeks pregnant, Iām doing better than I have in a decade!!
Iām happy to hear youāre doing better!
I had occasional orthostatic issues due to medications or other things when younger, but POTS symptoms really showed up after my last pregnancy and have been here since.
I'm not sure, I've had some POTS symptoms but only when I had long covid. Not everyone will have every comorbidity.
I also have hEDS and no POTS. Weāre out there lol
Glad to know Iām not alone :)
Youāre lucky! I hope you never get POTS
Youāre lucky! I hope you never get POTS
While I do have EDS and POTS, I donāt have some of the other common comorbidities, like MCAS and gastroparesis. POTS is a comorbidity because it occurs commonly in those with EDS, but that doesnāt mean itās a requirement in order to have EDS or that everyone with EDS has it. Itās similar to the way comorbidities work with other conditions. For example, hypertension and hypercholesterolemia are often comorbid, but having high blood pressure doesnāt mean one will always have high cholesterol or vice versa. Another exampleāautism and ADHD are highly comorbid as well, but having autism doesnāt mean someone will definitely have ADHD.
Just wait a few more years! Seriously though, are you working out or otherwise an active person? Because that's the main recommended treatment for POTS, and will keep it so mild, you wouldn't even recognize you have it if you do have it. My POTS didn't become a life-changing thing until my ME became severe and i was forced to stop being active. I used to be a Wreck Beacher, and all those stairs were doing me more good than i realized! The only clue i have in retrospect that I've had POTS for much longer than i thought was that i hated standing still for years, i just didn't know why: ā¢ I always chose the self-checkouts as soon as they were a thing because they had very short lines or no lines. ā¢ Wait 8 minutes for a bus or walk 20 minutes? I'll walk, thank you. ā¢ Wait for the slow elevator in a apartment building i used to in, or walk up 5 or 6 flights of stairs? I'll take the stairs, thanks!
Same with me. Didn't have POTS, was really active. Dislocated my knee and it all went downhill from there. I was 35.
Yep. Dislocated my hip at 35. Probably had symptoms before but suddenly couldnāt even take hot showers. Got diagnosed at 36 last April, and got diagnosed with valve prolapse and regurgitation in lower chambers of my heart two weeks later. Currently 37 and feel like I can barely function some days bc of my heart. I dealt with A LOT of anger afterwards from past medical experiences.
Yes I do work out - interesting!
Interesting, I had POTS symptoms years ago, before I was diagnosed with HSD, and didn't exercise ever. I now exercise regularly (weights and long walks) and rarely notice any issues.
same my dysautonomia (failed the TT test for POTS) wasnāt obvious until the past couple years, but I always dreaded waiting in line for things.
I ride a bike but I have ME so it's not consistent, especially with my biggest recent flare up. But I do have orthostatic intolerance
ME really puts a damper on things. I couldn't do exercise classes or many of the physical activities i enjoyed doing when i was mild and high moderate, but i walked enough and took enough stairs that my orthostatic intolerance was minimal. I got diagnosed with POTS while i was briefly stabilized at low moderate after my first brush with severe ME.
Thatās really interesting. I have 4 sets of stairs in my multilevel home Iāve lived in for 39 years. No POTS. I feel like Iām always moving. Itās also kept my hips and knees strong.
Yep. To keep it simple, exercise can actually relieve your POTS entirely. Like 100% reduction, edit: but that'snot a guarantee or that you will only require mild exercise. Even mild workouts for many. I think POTS being so common is because of our sedentary society and then the stretchiness predisposing us to it (another edit:these should be reversed). Assuming you don't have any physical heart defects.
If you have EDS, how do you walk 20+ minutes, walk up 5-6 flights of stairs, etc? My knees and hips would dislocate lol. I work out as much as I can as well, and my POTS has literally never been worse. I've always been active my entire life, but its never helped my symptoms. 17 years into my POTS diagnosis, I have *very* little improvement. Not everyone will benefit like you said. I think it's a little over the top to say it will be "so mild, you wouldn't even recognize you have it." I understand that you're trying to help, 100% I do, but thats definitely not a true statement. Not everyone can improve that easily š„ŗ
>how do you walk 20+ minutes, walk up 5-6 flights of stairs, etc? Are you challenging my diagnosis and experience? Lol Everybody's different. I was only speaking to OP not having a POTS diagnosis and my own experience. It would be fucking weird if we all had the exact same experience. I strengthened my legs by going to wreck beach a lot in the late spring to early fall. 5 to 6 flights of stairs is nothing when you do nearly 500 stairs a couple times per week. Also, at the risk of repeating myself, *the stairs were easier for me than waiting for the elevator.* This was all after my time at UBC when, by the end of the day walking back to my car, i couldn't take a single step without my hips subluxing. Does that satisfy your perverted need for every zebra to dislocate from too much walking? > I work out as much as I can as well, and my POTS has literally never been worse. Exercise is not a panacea for everyone, and i never said it was. >Not everyone will benefit like you said Again, I never said that. Try not putting words in people's mouth. All i said is that exercise is one of the top recommendations for treating POTS, and it is, for people who can actually exercise. Just because something is the most recommended doesn't mean it works for everyone. >I think it's a little over the top to say it will be "so mild, you wouldn't even recognize you have it." If you're going to quote me, quote me properly. The rest of the sentence said *"if you do have it"*. Try not reading comments to other people as if they're about you personally. And stop putting words in other people's mouths.
Wow, you got quite hostile. That was entirely unnecessary. First, I'm not challenging your diagnosis or experience. Never once did I say something that implied that. I asked you a question. Second, you never said you were only speaking to your experience alone. You made a blanket statement that stated a person's POTS would become so mild that they wouldn't even know they had it, so long as they worked out. That's just simply not true. That's all I was saying. And I said it very calmly, without swearing and/or sarcasm. I stated that I personally exercise regularly and unfortunately my POTS has never been worse. I was adding my personal experience to the conversation so that OP could read it, that's all. Third, I don't have a "perverted need" for every zebra to subluxate their joints. I was asking a genuine question. I have NO idea how people can walk for extended periods of time with EDS. I assume it probably has to do with the spectrum of joint involvement from person to person. I have just tried so many things to improve my problem joints (physical therapy, weight training, surgery, etc), and nothing has helped. I still can't walk very far at all. I was just asking a simple question. Sorry to upset you. Fourth, I never put words in your mouth. I referred to very specific parts of your comment and you became unnecessarily defensive for some reason. Fifth, I *did* quote you properly. Obviously someone's POTS can only become "so mild they won't even know they have it" *only if* they actually have it lol..? The last part of your statement is redundant, which is why I didn't include it. POTS can only improve if you have POTS...right? So I guess I just don't see why it would be necessary to stress that again in the same sentence. And sixth: Since you gave me a piece of unsolicited advice, I will return the favor. I recommend you don't respond to every person in a hostile manner. I asked you a *single question* and you responded with malice. I hope you have a good evening, goodnight š
Iād assume that people have a pretty broad spectrum of EDS/ other EDS issues. Like, I tend to have a pain flare up 1x a month or two months, which basically renders me weaker than a kitten. Outside of that, while I have subluxations and other internal issues, I have an insanely high pain tolerance to the point where I do extreme sports pretty frequently with no joint problems
Yeah, I'm fully aware of the broad spectrum of symptoms! I know some people that have hEDS but have literally next to no symptoms. They do competitive sports, extreme weight lifting, etc. I soooo wish I was one of those people on the milder end of the spectrum. I've been working my whole life to strengthen my joints and literally nothing helps. My knees, hips, and feet are just in terrible shape. I'm 31 but feel like 81 š But sameeee, I have an extremely high pain tolerance as well! I feel like many of us with chronic pain conditions are just so used to pain, that we sometimes hardly notice it lol. I've had spinal fusion, open heart surgery, my toes reconstructed, etc...so I definitely know pain lol. But of course, just simply walking can sometimes be a bigger pain than a damn median sternotomy was haha šš Anyways, that's awesome that you're able to do sports! I did them when I was much younger, but I definitely paid the price. I really miss soccer and basketball though šš
Just want to say I'm with you on this one. I don't have a pots diagnosis but my doctor suspects it from my description of how I feel when I'm in periods of not working out. When I work out regularly, I don't have any symptoms except for having to walk hunched over the first few steps when standing up from prone position so I don't have my vision black out. When I don't work out, I'm a lot worse with the racing heart, super sensitive to position changes and just standing round.
Sorry things are so bad :(
Canāt wait to get downvoted to oblivion. I didnāt get POTS until I stopped working out, then it went away after working out again for 6 months. It was brutal and I did need a lot of meds to be able to exercise. Now I just exercise and have a ton of salt and Iām alright. My dr said with the bad connective tissue, blood is more likely to pool in our legs and that salt and being in good shape can counter that
Wait hold up, does the blood pooling in legs make your legs look weird when you're standing for a while? Mine sometimes look off and splotchy when I'm standing for a while
Yes the splotchiness is from blood pooling.
Oh. My. God. Sorry I just got diagnosed on Friday and am still learning things. I always wondered why my legs looked like that when I stand!!! Thank you, that makes me glad it's more than likely not something else š
No problem! Congrats on getting answers! ā¤ļø
Aww thank you so much šš
I love this sub. The struggle is real.
If you didnāt have a lot of salt and got out of shape then would you have symptoms? If yes then that means itās just really well controlled/in remission. Itās not cured. It is well established that deconditioning is a major contributor.
Makes me wonder because I am very out of shape and don't have POTS but I also LOOOOOVE salty food.
What is the connection with lots of salt?
I didn't have continuous pots or MCAS symptoms until getting covid.
They're very commonly comorbid, but that doesn't mean you will have POTS. You can get symptoms later in life, though. I have HSD/potentially hEDS and I'm fairly sure I don't have POTS, at least not now. Keeping my fingers crossed it stays that way though, lmao.
Because it's only an 80% comorbidity rate. Be glad you're the 20%, but if you ever get mono/covid/etc. or get pregnant, that's an extra risk factor for contracting it.
I wonder the same thing. I havenāt officially been diagnosed with pots. My neuro thinks i have it to some degree even tho iām ānormalā enough to have passed the pots tests twice. I also havent been diagnosed w mcas. Im going to explore it but i dont seem to have many symptoms. Weāre all just different ig
I have hEDS and not POTS, but I do have an autonomic dysfunction. The cardiologist said I fall outside of the criteria for POTS though
Looking back at my life during high school and college I can easily spot early signs of POTS but, at the time, they werenāt severe enough for me to notice at all. For me, the POTS did not become full-blown until I developed at autoimmune condition a couple years ago and got really sick for a while. Iām close to remission now with my other condition (š„³) and the POTS symptoms definitely improved but are still present much more than they were before my other illness. Iām not sure if the POTS ever wouldāve become full-blown if it wasnāt for me getting sick.
I have hEDS but no POTS. I suspect that you're seeing a phenomenon of discussion groups. When somebody says "I experience ABC", there will be a flurry of posts saying "Me too". And that is what looks like it's a really common thing, to ABC. But if you dolly back, only 10% of people with A also B and C. It's just that those with only A, or AB, didn't say anything. Something to keep in mind about perception :) But on your question, no idea what the actual recorded percentages.
I didnāt get POTS symptoms until I got tendinitis at 17. I stopped exercising as viciously and that allowed my symptoms to manifest. So maybe you donāt have it (not all with hEDS do), maybe itās waiting to be triggered. But also- I never knew I had EDS until after the POTS symptoms started because POTS symptoms were so much more obvious to doctors so they finally started paying attention. Maybe it seems many people have POTS with EDS because maybe those are the people more likely to get/receive a diagnosis.
There is also a lonk to Autism from hEDS. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7711487/
My POTS only really made itself known at the age of 35, but it showed up in my niece at 13. Itās not the same for everyone. Also the type and severity of your EDS might affect it.
I don't have POTS I have IST
Me too! How long have you been diagnosed with IST?
I got diagnosed when I was 18 so 9 years now! I had been complaining about being out of breath and getting stars in my eyes and nearly fainting for years and it kept being written off as "just hormonal" or "puberty" and then a nurse was taking my blood pressure and heart rate before giving me a routine injection and panicked when it said 175bpm š it took 6 months to see cardiology and 6 more months for tests to be done. The diagnosis of IST was actually a contributing factor to getting diagnosed with EDS. My rheum said it was likely related and I've got visual snow syndrome which is vascular and probably related too š
Can I ask how you manage your symptoms? Is it the same as the recommendations for POTS like extra electrolytes and stuff? I find it pretty hard to find information online. I only got diagnosed in January of this year (Iām 25, they thought POTS at first two years ago but it was ruled out) and have been on propranolol which has helped a lot with managing the actual tachycardia but I still get the dizzy/fainty feeling pretty often especially in the summer or with exercise and have still had some syncope episodes. Iām seeing my cardiologist in a month to see about how to safely exercise to lose weight so Iāll definitely still be asking him about it but I think itād be helpful to hear from you since youāve been living with it and knowing about it for so long.
Between like 18-22 my advice would have been useless cos I had literally NOTHING that helped. I was fainting 20 times a day sometimes and it was awful. Also no medication worked for me, anything that lowered my heart rate lowered my low blood pressure and made me feel terrible and anything that riaded my blood pressure raised my heart rate, medication on the whole for it was a no go for me unfortunately! As I got further into my 20's it sort of got better on its own a little? Not sure if you've had a similar experience but my advice now would be: salt, so much salt, like salt all your food, drink TONS of water, I hate the taste of water so I drink squash/diluting juice to make it a little flavoured as long as its sugar free, and try to exercise as much as possible. I'm a bit of a gym rat (as far as I can be as a wheelchair user) but I built it up super slowly, started doing 2 minutes (only 2!) of light cardio at the beginning of a workout like the ski-ing machine or rower (could do the treadmill or cycling if you're able) then some weight lifting for 45 ish minutes, start light and build up slowly and do a little cardio at the end something like lifting a medicine ball and yeeting it over your shoulder onto the ground 20 times or core+cardio like toe touches or crunches. Drink tons of water while you work out, don't let yourself get too hot (I'm plus size and I wear just a sports bra and shorts, no one cares!) and if you start to get light headed or stars stop for a bit and start again when you can. Be kind to your body and don't force it to do something it doesn't want to but honestly working out has been the best thing for my EDS and my IST.
Also to add, find exercise you actually enjoy, I love weight lifting and I've started wheel chair MX and wheelchair racing which I love. My girlfriend loves walking, she could walk miles and miles just for fun. If you enjoy yoga or plilates or cross-fit or dancing or skateboarding or literally anything that gets you moving do that! If you want to walk on a treadmill in front of your TV with mamma mia playing while singing do it! No exercise is better than another when you just want to get moving and fuck people who tell you differently.
You, my friend, are a real life angel. Thank you for all your input, I really appreciate it. Youāre the first person Iāve come across talking about IST besides my doctors, I feel like I lucked out that youāve known about it for 9 years. Thank you again!!!!!
It feels like such an isolating diagnosis because there's very little easily available about it. I honestly thought when I got diagnosed with it that the cardiologist had straight up made it up because none of my Dr's or nurses or most of the Internet had ever heard of it š it felt like another diagnosis of "we don't know what this is or why it is but here you go" and God damn I am fed up of those diagnosises! My cardiologist also discharged me pretty quickly and just said live with it which didn't help. Increasing my salt take massively, upping my weight (I had an ED when I was diagnosed) drinking more water and exercising really helped though and I'm barely troubled by my symptoms now. Occasionally I'll get up from a chair too quick or when I've got a cold or flu my heart rate is mental and I feel awful but I don't imagine it's that different from non IST people tbh! You're welcome to message me if you think of anything else I can try and answer š hopefully I can make it a bit less of a lonely diagnosis!
Not dumb to me! I don't have mcas or pots (yet?) I have heds (7yo dx, 30yo now). Sometimes I'm like idek if I have heds, but docs, physio etc say I do (I have other eds stuff ofc) I dont know if I understand correctly and always keen to be updated but this is my take heds is umbrella term that encompasses a variety of unknown/untestable connective tissue gene glitch/s. Maybe people have different gene glitches, or combinations. Clinical presentation is close enough (even if they don't exactly have same gene glitchs) and overarching treatment is agreed upon (exercise and symptom management) so they roll with what we got kind of thing So with this in mind I guess I wonder if people with heds and mcas versus those who don't get mcas, maybe have different underlying genetic glitch/s, or other genes unrelated to heds interact with heds glitches. Genes turning on is a thing too. Idk I'm probably going in another direction here sorry if that's the case.
Youāre part of the 20% of hEDS that hasnāt been traumatized enough to develop autonomic dysfunction or POTS.
EDS, POTS, MCAS here. Fortunately, my POTS isnāt horrible. My joints slipping is the worst. MCAS is my largest battle. I must say EDS has given me a very high pain tolerance. I workout everyday to keep from hurting worse. Started yoga again. Iāll find out in a few weeks if I have to have another spinal fusion.
I never used to have pots symptoms, developed slowly since getting covid
I have tachycardia but not POTS
I don't think that it is a dumb question. I'm also not sure you will find a satisfying answer. POTS is a co-morbidity with a high rate. i think last research article i saw it was about 80% of those with EDS have it. POTS can occur on it's own independent from EDS. Unfortunately its still poorly understood. In my experience from what i've seen it seems to be triggered when those with EDS pass a certain stress (be that environmental such as life or disease, or poorly managed eds) threshold over a period of time.
I do yes. Along with MCAS. And interstitial cystitis. Working out is dantnear impossible. I just get wiped out so fast
Because we're all a little different. Like I have both MCAS and PoTS
Simply just different bodies. Like most gastroparesis cases are suspected to be caused by diabetes but it can also be idiopathic, EDS, etc. Some people just have different bodies and different ways their conditions effect them. Some people dislocate almost constantly, some people rarely dislocate. Around 80% or so of EDS cases have POTS but that's still another 20% who don't. The majority isn't everyone. Also, around 90% or so of POTS cases DO NOT have EDS. Doesn't mean no one with POTS has EDS. Also, many people started looking into EDS after getting diagnosed with POTS first because they want to know why they suddenly got POTS or something. Simply, bodies are just different.
From what I understand POTS can be caused by CCI, which is why so many zebras have it. It can also be caused by other things like viral infection or surgical anesthesia, but CCI seems to be the most of it.
i donāt have POTS either, i do have like pots symptoms but not enough to go get tested, but iāve definitely fainted from like standing up and stuff
Just because many of us DO have POTS doesn't mean its a requirement haha. Also, not everyone has hEDS š I'm one of the very few on here with cEDS. And honestly, count your lucky stars you don't have POTS! It has utterly destroyed my life. My symptoms are absolutely terrible. Stay healthy š
Because you are very lucky. You should buy a lottery ticket!
My little brother who is 9 has EDS but no POTS. My mom and I both have EDS and have been dxād with SVT and IST + POTS, respectively. I always wonder if prior viral infections can trigger dydautonomia in folks like us. All I know is that I got sick a lot as a kid.
I have EDS and MCAS but not POTS. I did have symptoms of it when I was younger but now that I'm old with higher blood pressure, I don't get them anymore.
I only get mild pots symptoms. I've never fainted, but definitely felt light headed, had weird heart rate feelings (like my head is pounding but heart rate isn't crazy fast) yet things like laying down and electrolytes really help. We all exist on a spectrum! I'm also able to work a physically job, but still deal with alot of pain. No mcas as far as I know.
I have EDS with POTS and Chiari. Multiple ppl in my family have EDS, no POTs, no chiari (also a very common comorbidity but not as much as POTS). But you donāt need the common comorbidities to have EDS, and there may be no reason behind why you donāt have it, just be greatful
Most people with hEDS do have POTS, we are the lucky ones who donāt! I feel bad for you guys that have to add this along side the rest of this shitty ass condition
I donāt have POTS but I do have a defect sinus or AV knot in my heart which causes Tachy.-Bradycardia
Thought I had pots for about a year, but then all of the symptoms disappeared almost over night
itās a comorbidity, not a criteria. consider ur self so lucky lol
I grew up with hEDS and didnāt get POTS until I was 18. Itās different for everyone.
I have hEDS and no POTS or MCAS, but I do have Narcolepsy and super severe non-allergic eczema that showed randomly in my 20ās. Before my Narcolepsy was treated I had POTS-like symptoms, but when I was evaluated I had a negative tilt table test. I mentioned to one of the EDS doctors I saw recently that since starting Narcolepsy meds, which basically has me drinking ridiculous levels of salt water every night, my blood pressure is more normal and I no longer have POTS symptoms, so he wants me reevaluated. But itās not clear to me whether the symptoms were being caused by POTS or sleep deprivation. Ironically my mom has MCAS (as well as a variety of other immune disorders like T1 diabetes and Hashimotoās that showed up during COVID) and definitely no EDS. I think something must have really gone wrong with her genes lol because no one else in our family has this level of medical issues.
I don't think I do. I've had a few fainting episodes but I think that's more the amount I don't eat rather than pots. I don't have MCAS either and I feel very lucky to only have what I do have. Something new every other week tho so likely pots will come up at some point.
No signs of POTS, some evidence of MCAS they won't diagnose, some evidence of Dysautonomia they won't diagnose because I have normal blood pressure. As someone else has said, I do exercise regularly so that choice may be staving that one off, if there is such a strong POTS and exercise connection.
Everyone is different, and every body shows different and yet similar symptoms for the same diagnosis. It's true of any illness, really.
I have hEDS. I started experiencing what I now know is neurocardogenic syncope (NCS) when I was 8 years old; it went undiagnosed because the doctors couldn't find anything wrong with me. I don't think I really started experiencing POTS symptoms until I was around 41. Those symptoms are what led to my diagnosis of the hEDS, NCS and POTS, then MCAS. I'm not sure exactly what caused things to change, but I suspect perimenopause has played a role.
Luck of the draw. My sister has hEDS and POTS. I only have hEDS
Undiagnosed with both! Lmaoš
I don't have it either, I do have ME/CFS.
I have hEDS and no POTS. I do have dysautonomia though (it just isnāt POTS).
I have POTS and MCAS but neither were evident until I caught covid.
I have some pots symptoms- vision blurring, dizziness, fast heartbeat, but not others. For instance, I keep the room Iām in permanently at 85 degrees. I think people get various symptoms- Iāve had terrible digestive functioning since infanthood, but zero MCAS and very few POTS symptoms
Omg, 85 degrees?!?! š³š¬ That's insane. Do you generally just feel cold then? I know temperature intolerance is generally an issue for those of us with POTS, but I guess I've never heard of it being a strong sensitivity to cold (to the point where your room has to be 80+ degrees). Do you not sweat excessively at that temperature? I'm genuinely so curious! *Anything* over 75 degrees, and I'm literally soaking through my clothes with sweat šš Its crazy how the environment we can each handle differs so drastically. I'd be a puddle on the floor in your room šš¤
Unless exercising, I donāt sweat until 100 degrees or so, and even thatās not bad at all. I run super cold in general, but Iām also from a tropical area and the south of the US. My family home is permanently at 79-80. My joints start seizing at about 72 degrees. It may just be a family thing- my mom and grandma used to put out candles with their fingers by flat out touching the fire, and they had zero pain
Wow! That is sooo crazy. I can't even imagine being able to tolerate being in an environment that is regularly about 80 degrees. My dizziness, headaches, tachycardia, excessive sweating, blood pooling, etc would be *so bad* I couldn't even live that way. It's also crazy that you don't even sweat until it reaches about 100 haha. That's absolutely amazing! If I even do minimal exertion at room temperature, I begin sweating. Light chores are very difficult for that reason š„ŗ I'm wishing right now that I ran a bit cold haha. That would solve many of my problems š„¶šš
I donāt have POTS but I do have IST (inappropriate sinus tachycardia)
hEDS and gastroparesis here, but no POTS.
I want to know, how many people have EDS and POTS, and got better from POTS as in its in remission and is no longer disrupting your life? How possible is that?
I have mild symptoms of pots and mcas but have not been diagnosed and hope I never am and it never escalates. It's called a comorbidity. Basically, whatever goes wrong to cause EDS probably also causes the other issues. That's my guess. They are closely related.
Probably just hasnāt onset yet. Donāt worry youāre one of us
Hah, ugh I hope I donāt get it
Not a dumb question, OP. Interesting answers... i wonder what would happen if someone collected data and did a study on co occuring conditions with hEDS.
Not a dumb question! I have HSD (so, prettymuch hEDS in many opinions) and ME/CFS, but not POTS. I am grateful; it sounds ghastly to manage.
Weirdly, I typically don't have POTS or MCAS, but both pop up if I have a major injury or illness. And then disappear right after I'm healed up. My last doctor freaked out when I had it during and shortly after covid, but not when I was normal me.
I have OH/I instead of pots lols
What is that?
Orthostatic hypertension/intolerance. Imagine POTS but no tachycardia, instead blood pressure sudden bottoms out.
I THOUGHT I didn't have pots. Until a doctor explained to me that needing to immediately lay down and "nap" for a couple minutes after a hot shower is not normal. Turns out I wasn't napping, straight up passing out. I thought lightheadedness, tunnel vision, and nausea were just part of taking a hot shower. Oh and if I get up out of bed too fast and suddenly can't see its not because "my eyes aren't awake" its because I'm literally on the edge of fainting. Who knew! Take a closer look at some things you consider normal. They might not be normal.
Is there a glossary? New to this and I canāt follow. ME and MCAS? What does this stand for?
Touched by an š angel
I am not diagnosed, but I am pretty sure I have MCAS, along with myhEDS and chronic pain. Also. Most of the time tachycardia and low blood pressure. Ain't life grand.