Does anyone know if hormone replacement therapy has an effect on POTS? My mom has it and she started HRT and it has made a huge difference for her hormones and cognition but 2 weeks in she started having more low blood pressure episodes even while on Fludrocortisone so we are wondering if it was the HRT. She is off the HRT 10 days now and the episodes are still happening just less frequently. I would hate to have to permanently stop the HRT since it's been so helpful but not sure what to think and the doctors just say they don't think it's related to the HRT but they don't seem super confident since they don't know much about POTS.

You nailed it on the nose when it comes to having to “ hide our pain “ or not talking about our Chronic conditions because we are given no choice but to, especially when you’re at work because you are asked “ are you sure you’re going to be able to do your job?” Constantly and it gets annoying! I have POTS, too even though I have cEDS and I have CCI , too. But I have felt like I was going to blackout before at work and it slammed me into the circuit box and another time into my housekeepers cart.

I have a lot of problems with my hyper mobility. So my physical therapist suggested I try to bet tested for eds. I am only 15 so they told me I couldn't get diagnosed till I was 18. Has this happened to anyone else?

Izzy: try the Arnica clear gel. It doesn't have a smell & it doesn't get on your clothes!

i know its been a while but have you tried Salonpas cream?

Is it a geneticist that is the competent specialist to diagnose?!

I just had mpfl surgery on 6/12/24. the healing is going well even though i do get discouraged at pt sometimes when i can't complete a exercise. Do you have any advice that you can give me. I try not to get frustrated but its hard cause i have to be in a brace the whole summer.

I just subscribed. I literally feel like I could be best friends with every single one of you. I am formally diagnosed. Something my rheumatologist had me do was my hitchhiker thumb, but also when he was looking inside my mouth, I accidentally touched my tongue to my nose out of habit and, he was like oh my gosh you also have “Gorlin sign” and I was like ..What? So many different things coming out and I’m just so thankful. If I was well enough to do what you guys are doing, I would. I also am pending lupus dx :( I know we’re learning so much so fast about this disease and I’m so thankful for you guys. But this video inspired me to make a video of myself doing these things so that when doctors ask, I can just give them a little photo book of pictures with me doing it (showing my face) So I don’t have to repeat them and get in pain again! Which is genius so thank you!! and if that’s not enough, I’ll just keep it on video on USB! Or my phone at least.. I’m gonna watch all your videos. I feel so much less alone. I know that there are people like me out there, my identical twin sister being one of them, (can you imagine? When we were younger it was like “hey this is normal right?” And the other one would be like “yeah, that pain happens to me too; that’s normal” or “yeah I can also do that weird thing; it’s normal”) it’s actually weirdly comforting to see you guys all together… It really lifted me up. And I checked my foot for papules and… now I know those are there 🤪

Questions for all those who suffer from gastric paralysis. Dis you suffer also shortness of breath.

What does it take for someone to get evaluated to start with. At 59/60 I am still having pain and other hypermobility issues despite having long adapted to not doing physical activities that would result in injuries. But as a result, I have no "recent" records of dislocations or sublocations. So, when I ask for an evaluation, I am just told no. That it is in my head. I am making it up. I am faking it. Etc. Funny here. I have autism and ADHD too. And in both cases I knew that years before I got evaluated. And then it was only because I was in such bad mental shape, I could no longer care for myself in any capacity. Now nearly 7 years later I am still trying to get seen for the physical side of things. So basically, are the doctors telling me I have to do activities I know will send me to the hospital just to get them to look?

I'm getting tested for gastroparesis soon

Where did you get your cat scratcher that they were lying on?

I am NHS doctor and trust me first time i have learnt EDS criteria clearly , thank you and bless you and always stay friends ameen

The gentleman that can pull his skin to extremes is called Gary Turner. He is a sideshow performer and holds the current Guinness World Record for the stretchiest skin, caused by classical EDS.

My hips and shoulders have dislocated my whole life. I have POTS, Syncope, EDS, gastroparesis, hiatal hernia, and more.

My mom had EDS. It's why I'm looking into hEDS diagnosis. I am hypermobile according to my surgeon and chiropractor

I got 4/9 but said yes to the questions, do I need to get looked at incase or call myself out?

You living my last 18/19 years 😢 minus dizziness Everytime getting up (undiagnosed)

I'm 65 and have always exercised and have a strong well developed core. Liquid HCL or Muriatic acid has been miraculous for me. My doctor at the VA told me that the acid would rot my teeth. Because of that I took Betaine HCL capsules for years. A few years ago I switched to 2-10 drops of Muriatic acid in a glass of water with every meal. I did need to supplement digestive enzymes in the past. I've found that with a body temperature close to 98.6 F my body seems to produce adequate enzymes

I had a blood test done at the rheumatologist, they said it came back normal. My hyper-mobility, joint and muscle pain, repeated injuries, and other symptoms were completely ignored.

My son is waiting on doctor he has hm And his skin steaches and over lapping teeth very bad ,hign palet balance he has a lot of stretche marks, he has autism

Does it also cause loud ear ringing from the irritation or something?

no one is doing this test correct

So interesting that 20% the population has some sort of hyper mobility. It's estimated that 17% of people have MCAS. So just wonder if those are the same people!

Do all 5 of you have POTS and MCAS, too?? Thanks for this! (I have MCAS and heard about loose ligaments and a lightbulb went off - and found this channel! I have MCAS and the foot papules and painful joints. Age 45. You are all awesome for doing so much to help others with these mystery conditions that doctors don't like to deal with!)

I have the hyperadrenergic type of POTS and let me tell you it’s AWFUL. It’s so exhausting and super hard to treat. Having all that adrenaline in your body all the time, wouldn’t wish it on my worst enemy. When I stand up heart rate goes from 80ish to 130ish. BUT if I bend over to tie my shoes then stand up, it goes up to 155+. Panting for breath. It’s a difficult life🤦🏻‍♀️

My docs at the VA have been “evaluating” me for hEDS since 2011. Marphans was ruled out pretty early. I was eventually seen by the genomics clinic at the VA and a blood test showed 4/5 markers, which they said meant that I did not warrant the diagnosis. However, I’ve had stomach issues, recurrent abdominal hernias, GJH, chronic sublocations and dislocations and pass criterion 1, 2, and 3. I’m no longer able to exercise the way I used to and am limited to the hand cycle and stationary bike. After 13 years of evaluations, I’m pretty frustrated. Any advice?

Hi question,🌸 I have been diagnosed with I multiple sclerosis, but most if not all of the symptoms you have shown I actually have ,could they possibly have got my diagnosis wrong or can you have both ,thank you xx

I’m 61 and have finally gotten my diagnosis of HEDS. I’ve been under care for back pain and joint pain since 25 years. This video set the stage for me to figure it all out. THANK YOU! For bringing awareness! I’ve submitted DNA sample to test for other things trying to find answers for my fragile veins that blow up on me. It’s been a nightmare to just find someone who will help getting answers. I’ve had a minute man spacer put in my back L4L5 but woke up during surgery because I busted my vein from the IV and it took them several minutes to find another vein to put me out. Not a pleasant experience. PTSD is real! I now have a port to access my veins.

To me, one of the hardest parts is finding food I can handle. My GI function is 9%. So everything has to be soft, fat-free or low fat, and low fiber. Then, I'm also lactose intolerant. I also have Hashimoto's, so I have to reduce or completely cut-out gluten because it causes systemic inflammation for me. I'm running out of food to eat lol

Hey, would anyone like to keep in touch ? Maybe pass some ideas around, with something this serious, we need a support system and people who understand what we're dealing with, I would also like to share some helpful information, apple cider vinegar can help with digestion, just fill a cup 1/2 way with water, and add 3 tablespoons of apple cider vinegar, this is not a cure but it helps

I'm a pretty Petite person even though I'm not passing out at a 42 beat increases I'm definitely feel out off breath and thing with only get worse from there with my pots I hate when it even goes that high

Try 45 years to diagnosis. Commonly thought of as clumsy, hypochondriac and dramatic. I have had multiple surgeries to multiple parts of my body that are all related to what I now know is hEDS. No one looked for this. I had to advocate for myself until I found a doctor who sent me to a specialist in EDS and PoTS. I’m still in pain. I still have multiple health issues. But at least I know it’s not “all in my head”.

can a person with gastroparesis still feel hungry?

I think its a mistake to separate cfs and eds. Eds makes you more susceptible to cfs, and most of the cfsers i know have a form of eds

My pots is so bad in the heat and in the summer. I prefer the winters but before I got pots. I loved the cold so it's not as an issue for me. I can still get overheated in the winter but primarily. My pots does a lot better in the winter. But anything over 70° if I'm doing a lot of walking or just over all. The temperature of the room is about 70. I'm dead. But if it's too cold, it's very uncomfortable with my pots as well, but I'd rather be cold than hot.

Being inactive for even a month or 2 won't cause your pots.

how do u do to maintain weight ? or gain weight ? what do u eat ?

I havent diagnosed three differenf heart rate doesnt have go up. I no have pots heart rate doesnt go.up. Started along time symptoms match it.

Thank you for explaining all this! I have a tilt table test coming up, POTS would explain so many of my issues I’ve had since childhood. I didn’t know it could be related to EDS, which I’ve also suspected for a long time. So much will make sense if my test is positive lol

Nice apartment. Disability has me in a cheap crappy one.

you’re awesome though and doing a great job(: but please inform yourself on the direct correlation before consumption of nonhuman fellow animal products and cancer instances

nope, not by chance. Most don’t want to admit it but like all the diseases from nonhuman fellow animals that are named after them, and covid, most are because most people don’t use their hearts&brains and therefore aren’t vegan, so if they consume ground-up cancer tumours along with faecal matter, covid and other diseases and pathogens, noxious drugs and chemicals, and more and worse, plus all the “negative” feelings from the victims, what do you think will happen… it’s just that most don’t want to admit that because it’s easier to act as a perfect being and victim and martyr and blame others, most often their victims, for what they cause. There’s a reason covid comes back again and again, and there’s all these diseases and increases in cancers due to overpopulation increasing…

When I do the treadmill test I get my heart rate up just a little bit but it slows down really fast but 10 minutes later it gets real crazy beats, pauses, slams and skip. Sometimes for twenty minutes or longer. They couldn’t do the scan after the treadmill until my heart rate got lower and more regular.

My nuero actually gave me a three page orthostatic work up sheet to do the "Poor Mans Tilt Table Test" at home!

Taking iron supplements helps a ton. Vitamin D too.

God, if I’d known, I wouldn’t have played violin 1-3 hours a day for 12 years and tried to fix the pain with yoga 🙃

Not to mention there are a ton of other crazy symptoms with pots. I hate the fainting, but there are a lot of others. Ymptoms that I hate the pods like exercise intolerance, heat intolerance and when the blood pulls to my legs, it's his itchy, cold burning sensation. My vision's blurry, my voice changes and the extreme fatigue

I get abdominal pain from the tissues holding my organs in place slipping. I had whooping cough as a teen, which was like 12 months of intense coughing, and caused some hernias that were never treated. It weakened my core for 15 years and now I'm having difficulty holding my torso up.

I suspect I have both EDS and pots. I can dislocate both my shoulders on q whim as well as several fingers, my ankle, my hips. There have been a few times when dislocations do hurt but most of the time they don't. Hell with my shoulders I can walk around and if I'm carrying something I'm constantly having to pop that shoulder in multiple times. I get the easy bruising and I've been told repeatedly that I have super small veins. Almost impossible for any dr to get blood from me. That sort of sucks cause they poke me a few times and if we're all lucky they can get my vein quickly. If not I'm stuck having to go to a specialist. Not fun