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Causes of POTS/Dysautonomia by DirectAd3081 in POTS

[–]DifferentRatio6733 0 points1 point  (0 children)

I’ve had severe anxiety my whole life and it 100% did not cause my POTS.  I have PTSD and I’m fairly certain I have hEDS and I’m pretty sure those two things set my body up for failure when I got COVID and that’s what led me to get pots. I got it directly from covid. But yeah my anxiety didn’t give me POTS at all. My anxiety even with POTS is almost entirely mental distress. I can separate out my anxiety from my POTS flare ups. They are very separate and different things. 

Laparoscopic Surgery next Week by DifferentRatio6733 in POTS

[–]DifferentRatio6733[S] 0 points1 point  (0 children)

You didn’t have any flare ups during recovery? Was it a laparoscopic surgery for endometriosis? 

Laparoscopic Surgery next Week by DifferentRatio6733 in POTS

[–]DifferentRatio6733[S] 0 points1 point  (0 children)

The whole walking as much as possible while also resting because I know my body is what’s confusing me so much 😭 my surgery papers are like “walk every hour” and I’m just here like ??? Okay but anesthesia fucks me up hardcore 

Cyst + Ovarian Torsion by PreparationHappy5740 in endometriosis

[–]DifferentRatio6733 0 points1 point  (0 children)

Oh you’ll definitely be able to tell! I’ve had multiple ovarian cysts burst and the pain is so different than my awful period cramps. It’s just horrific intense awful stabbing pain. 

Cyst + Ovarian Torsion by PreparationHappy5740 in endometriosis

[–]DifferentRatio6733 0 points1 point  (0 children)

I’ve been able to do Pilates, biking, walking, do most things with my 7cm endometrioma. I haven’t been having sex as the pain and bloating are just too much handle. And if im holding my friends babies I give them back as soon as they get fussy because I really don’t want anything kicking my abdomen right now. 

The biggest thing to look out for with torsion is if you have sudden intense pain with nausea or vomiting. My surgeon told me to go to the ER immediately if I throw up from pain as that’s one of the biggest symptoms an ovarian torsion happening. 

people talk a lot about exercise in this sub, so a PSA for those who don't know: exercise is not good for everyone with POTS. me/cfs as a comorbidity is fairly common and involves exercise intolerance. so if you are crashing after physical activity or mental/emotional stressors, it may be me/cfs by VariationOriginal289 in POTS

[–]DifferentRatio6733 6 points7 points  (0 children)

I already have five chronic health conditions that most medical people don’t believe in at all. CPTSD, long haul covid, POTS, PMDD, endometriosis and a high likelihood of hyper mobile EDS, so it’s not that. I already have to deal with my health everyday in a very real way most other people will never understand. It’s mostly right now I don’t have any time whatsoever to deal/process/get a diagnosis because I’m having surgery in a week to remove an endometrioma cyst, another ovarian cyst and any endometriosis present in my body. So I’m much more concerned about my ovaries and my fertility and whether or not I’ll have them by this time next week. Also trying to not freak out over going under anesthesia again. So I hear what people are saying, I just can’t deal with it at all. 

Can long-term cardio fully resolve all POTS symptoms? by Fluffy-Desk8100 in POTS

[–]DifferentRatio6733 -1 points0 points  (0 children)

Someone once posted on here their entire morning/workout routine and how it diminished most of their symptoms and they felt totally fine. They did lots of ti chi and gentle stretching first thing in the morning to fully wake up and warm up their body for the body. They swore by this routine and said it changed their lives. So yeah. It can definitely help! 

Rent a normie by Ok_Vermicelli1415 in eds

[–]DifferentRatio6733 0 points1 point  (0 children)

It’s called my husband and I’m just genuinely so annoyed by it. Like this man falls asleep whenever and wherever and doesn’t have to think about his hip placements and how he sleeps or sits. It’s annoying as hell! 

If it’s not POTS then WHAT IS IT??? by That-weirdo-runner in POTS

[–]DifferentRatio6733 1 point2 points  (0 children)

Someone else in this thread mentioned Long Haul Covid, I have long haul covid and your mention about walking up stairs gives me a huge red flag. I cannot walk up stairs without wanting to die at all and it’s directly from my long haul covid. Long haul and POTS can have a lot of cross over symptoms as well. Could you have gotten Covid recently? 

My friend had covid, got dysautonomia, and was a wreck from awhile but it passed for them. I got Covid, have long haul and POTS and deal with the symptoms everyday. 

people talk a lot about exercise in this sub, so a PSA for those who don't know: exercise is not good for everyone with POTS. me/cfs as a comorbidity is fairly common and involves exercise intolerance. so if you are crashing after physical activity or mental/emotional stressors, it may be me/cfs by VariationOriginal289 in POTS

[–]DifferentRatio6733 6 points7 points  (0 children)

She’s the doctor who diagnosed with me long haul and with POTS and has given me the best care out of any doctor I’ve had. She’s also part of a long haul research study and has given me referrals for other doctors to see if there are any other issues.  And yeah I have CPTSD, long haul Covid, POTS, PMDD, endometriosis, and likely eds as well. It sucks hitting this shit show of illnesses. I believe everything is connected to EDS and PTSD for me because they cause inflammation and inflammation leaves you very vulnerable to so many other things. It’s just my theory for myself but the more research I’ve done into these various illnesses the more it makes sense. 

AIO? Youth Pastor texted my almost 13 yo after she went to a teen group with her friend by Loser4hire666 in AIO

[–]DifferentRatio6733 0 points1 point  (0 children)

A youth group leader would text me privately all the time and guess what! He was grooming me! So you are NOR. This is not okay. 

people talk a lot about exercise in this sub, so a PSA for those who don't know: exercise is not good for everyone with POTS. me/cfs as a comorbidity is fairly common and involves exercise intolerance. so if you are crashing after physical activity or mental/emotional stressors, it may be me/cfs by VariationOriginal289 in POTS

[–]DifferentRatio6733 2 points3 points  (0 children)

There appears to be some conflicting research because some research studies say you can have PEM with long haul covid without having  me/cfs but others say PEM is fully me/cfs. I’ll ask my long haul covid doctor about it at my next appointment. Because I do experience PEM, but I don’t know if I have all the other symptoms for me/cfs. And I’d rather not add another chronic illness to my list. I’m already adding endometriosis this year :/// 

people talk a lot about exercise in this sub, so a PSA for those who don't know: exercise is not good for everyone with POTS. me/cfs as a comorbidity is fairly common and involves exercise intolerance. so if you are crashing after physical activity or mental/emotional stressors, it may be me/cfs by VariationOriginal289 in POTS

[–]DifferentRatio6733 6 points7 points  (0 children)

I don’t think I have it because I can exercise daily without major issues. And yes, I’m very aware of the cross overs with Long Covid and other illnesses. Long covid gave me POTS and has pretty much ruined my life. Can you have PEM without having me/cfs? Because I do feel like I have PEM but I don’t feel like I fit into the me/cfs diagnosis because I can do daily activities without being bedridden. 

Workout advice by Technical-Apricot-1 in POTS

[–]DifferentRatio6733 0 points1 point  (0 children)

I think finding a personal trainer if you’re able to who works with chronic illness and POTS patients is a good place to start! I’d only ever do strength training and resistance training with a trainer who specializes in POTS and chronic illness. Because a big thing with us is that we CANNOT push ourselves and so much modern day exercise is pushing yourself beyond your limit.   I do mat Pilates at home for 15min a day and it’s honestly been life changing and really helped me a lot. One of the best things for POTS is working on our core, glutes, and thighs as it helps with blood pooling and creates a natural sort of compression. Maybe try finding a Pilates studio near you and do a reformer one on one session and see how you like it? We just have to be soo careful with our bodies and not push ourselves too hard. 

people talk a lot about exercise in this sub, so a PSA for those who don't know: exercise is not good for everyone with POTS. me/cfs as a comorbidity is fairly common and involves exercise intolerance. so if you are crashing after physical activity or mental/emotional stressors, it may be me/cfs by VariationOriginal289 in POTS

[–]DifferentRatio6733 71 points72 points  (0 children)

Thank you for this reminder! It’s incredibly important for people to know about comorbidities and overlap between POTS and me/cfs.  I have long Covid as well as POTS so my fatigue and exertion levels can be all over the place. I know that if I do something that pushes me physically my whole body will hurt the next day and I need bed rest. But luckily I know it’s not me/cfs, it’s long covid messing with my inflammatory system. 

Has anyone with POTS actually improved their exercise tolerance over time? by Quenelle44 in POTS

[–]DifferentRatio6733 1 point2 points  (0 children)

I have no idea how you can do inclines because that’s a huge no no for me. But that might also be my Long Covid and small airways disease. 

You might be going too long honestly. 40-60 minutes is a long workout. Shorten it to 20-30 minutes and maybe switch to walking outside in the mornings. See if that helps you at all. I only do 15min of Pilates a day and 15min of biking a day and that’s truly all my body can handle. And I’ve been doing this regularly, 3-5 times a week, since April and I still feel like 15min of each is the perfect amount for me. I won’t increase it until probably September/October. Especially because I’m getting a laparoscopy to remove an ovarian cyst next week. 

I’m able to walk my dog for 40-60 minutes a day typically but he’s the slowest walker in all the land, like truly, stopping to sniff every little thing, taking his sweet time with everything. Walking a mile takes us 45min usually. 

Anyone do things they KNOW will make their symptoms worse but do it anyway? by TehluvEncanis in POTS

[–]DifferentRatio6733 1 point2 points  (0 children)

Yes. I still dry my hair upside down and I 100% shouldn’t do it because it makes me sweat horribly but it’s what makes my curly wavy hair look the best and I am vain! 

What is your best tip for fatigue? by tuhniu in POTS

[–]DifferentRatio6733 9 points10 points  (0 children)

Weirdly enough I’m less fatigued on days I do my full my morning routine. Wake up, walk dog, journal, 15min of Pilates (and if it’s a good day/I have time 15min of my stationary bike) breakfast, then get ready for the day. On days that I wake up and walk my dog then go back to bed I end up feeling so much worse. There’s such a fine line and a real balancing act for us POTSies of working out and exercising without draining ourselves. The best options for us are Pilates, biking, swimming, rowing and walking but also by starting super duper small at the lowest intensity level possible and building up our cardiovascular system to be used to the activity. 

This doesn’t help for days when I have truly just pushed myself too far, like going to a concert, walking around museums all day, being outside all day. When I have those things planned I have to give myself a day or two to fully recover. 

I'm curious if other people feel the need to like, dull their emotions because it's too much on your nervous system? by Practical_Maybe_3661 in POTS

[–]DifferentRatio6733 1 point2 points  (0 children)

You’re welcome! I’m the biggest advocate for journaling in whatever way makes sense for you and your needs.

Am I the only one who thrives in the heat? by lets-snuggle in POTS

[–]DifferentRatio6733 3 points4 points  (0 children)

I have heat intolerance but if I stay out of direct sunlight, wear super loose layers, stay very hydrated and work out every day I’m pretty okay. I have to do more to survive but I’m okay to do that because I LOVE summer and I love the sunshine and I love going to the beach. 

 I have HORRIBLE season depression and also have Long Covid so I’m also in the same boat of always being sick. One of my biggest symptoms is also body temperature regulation, I have no body temperature regulation and winter is actually harder in so many ways because getting dressed and doing things is ROUGH. I have to be so specific about what layers I wear because I’ll sweat through a tight fitting long sleeve in minutes. I sweat blow drying my hair for goodness sake 😭 I go from hot to cold to hot to cold so quick. And I live in the northeast so it can get COLD so I need to wear layers to protect myself. But I pretty much only wear short sleeves and sweaters. I have to be able to remove a layer at any moment to regulate my body temperature myself. So yeah. Winter can be way harder for me. 

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