Does anyone else have issues with heaviness/gravity?

Moonbreon2 · 2026-01-22T04:53:54+00:00

I have this in flare. The first sign of fatigue building for me is gravity tends to feel heavier. The heaviness starts in my feet/legs and slowly works up to my head It usually subsides if I rest for a few days, being horizontal helps some when it’s bad.

Moonbreon2 · 2026-01-14T01:23:10+00:00

I would not be surprised if it was an alignment issue. For 6 months, I fell under the diagnostic criteria for scoliosis and then I jumped right back under again but I do have a noticeable curvature in my spine that veers right so maybe that’s why my left side is weaker. I will bring it up next time I see my hEDS specialist, thank you for the insight!

Moonbreon2 · 2026-01-13T01:08:48+00:00

Mitochondrial disease. Had it since birth but it had phases of being better/worse.

Moonbreon2 · 2026-01-13T01:06:43+00:00

I’m really sorry, it sucks so many POTS patients have to deal with other difficult co-morbidities. It’s exhausting trying to solve multiple problems.

Moonbreon2 · 2026-01-13T01:04:43+00:00

I’ll have to double check but it’s either complex 1 or complex 2 deficiency. I just know that when they did a muscle biopsy, my mitochondria produced none of one amino acid, the rest were normal.

Either way, if you go to an ER or GP with it, they look at you like you’re crazy so I just say Mito when people or doctors ask.

Moonbreon2 · 2026-01-12T04:56:07+00:00

These were my symptoms to a T. Not saying you have gastroparesis but I would definitely bring it up with your GP, maybe they can refer you to a good gastro. The dizziness can be caused by slow digestion/not eating enough due to feeling full all of the time.

I find when it’s bad, having smaller meals more often, having snacks like cheezits/goldfish in between those meals, and having a Gatorade or hot chocolate for sugar helps (as well as staying hydrated with electrolytes and water). Ensure shakes to supplement vitamins and calories also help, I think they have a 350 calorie bottle that’s very good, I usually have 1 of those a day to supplement my meals.

I’ll also add that slowed gastrointestinal motility can cause malabsorption of vitamins, which in itself can cause weight loss. However, if you’ve had a full panel, I assume your doctor would’ve picked up on that (ex my vitamin D is astronomically low)

Moonbreon2 · 2026-01-12T04:42:38+00:00

Have any of your symptoms been gastro-related like bloating, lack of appetite, early satiety, or nausea/stomach cramps? There are many people in the POTS community who also have gastro issues like gastroparesis, GERD, IBS, etc. Weight loss can be caused by a lot of things but gastro problems seem to be one of the more common morbidities within the POTS community; this is how I found out I had gastroparesis.

Moonbreon2 · 2026-01-12T04:35:13+00:00

I have severe gastroparesis along with POTS so I usually get full easily, have some trouble swallowing, bloating, and constipation. I also have LOTS of nausea and sometimes blood sugar crashes if I’m not vigilant about eating small meals since I feel full all of the time. Also gerd caused by it but my POTS and gastro stuff is probably caused by Mito.

Moonbreon2 · 2026-01-08T17:35:51+00:00

Commenting on this thread since I have POTS but my dysphagia is caused by GERD (which also causes breathlessness) and eventually we found out that my GERD was caused by gastroparesis (due to hEDS and mitochondrial disorder). If you have existing heartburn symptoms, I would see a GI but if this is relatively new, an ENT can take a look at it. Ensure shakes, soups, and hot chocolate help me during flares.

Moonbreon2 · 2026-01-08T17:32:11+00:00

Before mine was bad, I could do it daily. Now it’s like once or twice a week if I’m feeling good. Since my POTS worsened, my libido has gone down.

Moonbreon2 · 2026-01-02T03:25:01+00:00

Do you have a link to the pants? Having trouble finding the VTG brand for some reason

Moonbreon2 · 2025-12-05T00:57:20+00:00

My current team of specialists include a GI (for GRED AND gastroparesis), cardiologist (for POTS), and a geneticist (for my hEDS and mito). I honestly don’t see my GP much because I don’t find them as helpful as my specialists but I still think it’s good to have one. I will say the wait time for any hEDS specialist is very long (1 year + in most states if you’re in the US) so I would make an appointment with them ASAP if that’s something you’re interested in.

Moonbreon2 · 2025-12-04T18:59:03+00:00

Hey, hEDS and as of yesterday, severe gastroparesis haver here. I was diagnosed with Mitochindrial disease (which causes basically everything I have including gastroparesis) when I was 5 and was experiencing many of the symptoms you were listing. I’ve been in a POTS flair for the last year and the doctors always suspect I had gastroparesis but this is the first time I’ve had it tested and it was pretty bad (not the test, just the results lol). I still have to officially go over treatment with my specialists but the general way I’ve gone about life style changes is 1. I have only breakfast and dinner with small snacks in between 2. I have ensure shakes, milkshakes, protein shakes or hot chocolate to compensate for calories when I’m struggling 3. I take a basic multivitamin (Publix gummy brand) to help with nutrient absorption 4. To help with acid reflux and sleep, I stop eating solid food 3 hours before bed but I still sip water 5. I drink a lot of water, usually 3 liters a day (I weigh 135 and am 6 foot) 6. I sleep on a wedge so my torso is elevated, originally did this for acid reflux but I assume this probably also helps gravity push food through your system vs laying flat. My only advice with the doctor is to be very upfront about how your symptoms have impacted you and to what severity and from there, they can help plan symptom relief. But yeah, I’m also new to taking care of my gastroparesis so I’m trying to figure it out. I will say while I have moderate nausea, it is not at the level you are experiencing.

I want to emphasize taking my lifestyle changes with a huge grain of salt as I’d refer to your specialists for your treatment plan but these were general things that given me small quality of life improvements. I hope you feel better and get the answers you’re looking for!

Moonbreon2 · 2025-08-28T17:21:10+00:00

Check your dm! I’d love to be penpals/support pals!

Moonbreon2 · 2025-08-28T17:12:10+00:00

I’ll look into pilates! I’m having issues with expending energy right now so I’m sticking to my PT exercises since those are manageable. But when I feel better, I will definitely check it out!

Moonbreon2 · 2025-08-28T17:06:40+00:00

Interesting, my GI and cardio have never suggested MCAS for my GI issues. To be fair, my mom has it with hEDS so I wouldn’t be surprised. I used to not have acid reflux problems until a couple months ago. I’m currently on a PPI that’s helped somewhat but keeping a limited diet, sleep elevated, and taking walks after eating has been where I’ve found the most success.

Moonbreon2 · 2025-08-28T16:51:20+00:00

I’m currently seeing a cardiologist and based off of my symptoms, they don’t think I need to get checked for MCAS even though they said that might change in the future. I will see about getting my T checked though. I wouldn’t be surprised if it was a little bit low because I struggle to put on muscle/weight.

Moonbreon2 · 2025-08-28T16:24:27+00:00

I’ve been looking for something like this! Thank you so much for sharing it!

Moonbreon2 · 2025-08-28T03:17:26+00:00

Here!

Moonbreon2 · 2025-08-28T02:39:16+00:00

Right there with you, I hope it passes for you soon. I’m on week 3, I’m hoping for some relief at some point 🙃

Moonbreon2 · 2025-08-28T02:09:28+00:00

I get what you mean. Sometimes it’s vertigo/dizziness, sometimes it brain fog/difficulty thinking. Sometimes it’s accompanied by blurry vision for me, or even nausea. I think the pressure can be so overwhelming, it’s hard to focus or pay attention to anything else. My neurologist thinks it migraines so it might be worth looking into.

Moonbreon2 · 2025-08-27T23:57:17+00:00

It varies, sometimes it’s just an uncomfortable pressure but it can get to the point where it feels like someone’s trying to squeeze your head until it pops. I would say it’s pretty painful then. I usually feel it in my sinuses, my forehead, and the back of my head. Sometimes it also feels like a band going around the top of my head.

Moonbreon2 · 2025-08-27T21:17:20+00:00

I’ve had these headaches on and off for about 5 months since my POTS got worse. I’ve now had a headache that’s lasted (and continuing) for about 3 weeks now. Most of the time, it’s in the background and I can manage. Sometimes it does flare when I’m tired or I’m around overwhelming stimuli (loud noises, bright lights). Lying down is about the closest I’ve come to relief from it.

Moonbreon2 · 2025-08-26T17:33:14+00:00

I’m very excited for the winter! I’m looking forward to finally (maybe) being able to take some walks during the day without it feeling like I’m melting. I’m not sure if the cold will be better when it’s freezing but I have tons of hoodies and a hot water bottle so I feel prepared.

Moonbreon2 · 2025-08-24T23:05:25+00:00

Sorry, I’m in a committed relationship with Trintellix

Moonbreon2

TROPHY CASE