Sleeping more during a flare up: helpful or harmful?

Do you guys find sleeping more during a flare up helps? I genuinely can't tell if it's making it better or worse lol

Looking for a Heart Rate Tracker without Subscription and Bells and Whistles

Does anyone know of a heart rate tracker watch that isn't subscription based and doesn't have all the bells and whistles?? I literally just want something to track my heart rate, I don't need to have it also show my texts, tell me how to exercise, track my location, and have Alexa on it plus I need to pay $80 a year to use anything useful. Does such a thing exist or do I have to just take the loss and buy a fitness tracker?? If anyone has suggestions I'd love to hear your experiences with trackers

Finally Found a Care Plan That Works for Me!

For once I feel really good about my care plan!! I was misdiagnosed for 4 years because local doctors didn't understand what was wrong with me and some of the things they had me doing were actually more harmful than helpful because they thought I had something else. But now that I know I have ME/CFS and orthostatic intolerance instead of any number of vague other dysautonomic diagnoses I've had, I finally know how to care for myself. Got some new med suggestions as well as physical therapy (vestibular rehabilitation for persistent postural dizziness) I'm trying to line up and it feels so so good to finally have a plan that sounds like it will work!!

Misdiagnosed with Dysautonomia for 4 Years

It seems I may have been misdiagnosed and therefore incorrectly treated for dysautonomia for the last 4 years, the new suspect (chronic fatigue syndrome) makes a lot more sense and the potential of it has answered a lot of unknowns and questions regarding my health and why I am such an unusual dysautonomic patient. I think because of my young age doctors in the past haven't brought CFS up but it can affect all ages, even children, so maybe my local doctors just suck lol I'll be returning to Mayo in a few weeks for an evaluation at their chronic fatigue clinic and am feeling pretty good about it, I've never had a doctor listen to me so thoroughly and openly before without dismissal. Highly recommend their care if it's an option for you! I'm feeling a little lost knowing the illness I've learned so much about and have attatched to my identity may not be accurate. I know that it was, for all I knew at the time, and that CFS feels like a much better fit, but it's strange. I'm elated but also in mourning a bit. Very strange feeling. There is, of course, the potential of me having both but right now I don't know, my symptoms fit the bill of both illnesses, so I'll just have to wait and see I suppose

Autistic Peeps, Let's Talk Dysautonomia!

Autistic peeps, let's talk dysautonomia! The most common seems to be POTS, but there are roughly 15 types of dysautonomia. Personally, I think there is a ton of overlap between symptoms with autistic experiences and the more I think about it the more so many of my common complaints and behaviors are related to this. Common complaints (apart from the obvious heart rate regulation difficulties) I have that I'm wondering if you relate to: -difficulty swallowing, especially medicine or food that aren't soft are painful to swallow. -preferring soft and easy to eat foods -dry eyes and mouth when hydrated -excessive sweating even in winter -coughing in the morning and after meals from access phylum. -mild difficulty regulating body temperature -dizziness and easily car sick bonus question: do you struggle to know what dysautonomia symptoms you lack because of your low interoception?

Dealing with Back Pain and Fatigue

this past week i’ve been in a small pain flaire in my entire back and have been completely fatigued. most ibuprofens don’t help me at all and the only thing that ever helps is laying down but i can’t lay down most of the time so it makes the pain worse. anyone have any tips or suggestions for what they’ve tried to make the pain and fatigue more tolerable? my body just feels so bad which makes me feel bad mentally too. it’s so exhausting and i never know what to do when i feel like this.

Learning to Listen to My Body: A Journey with Chronic Illness

Having been chronically ill for a decade now, I have always pushed myself to keep up with those around me who are healthy. Starting at age 12 my mantra became 'I can do hard things'. Recently, I have been encouraged by my doctors to work on listening to my body and resting when I need to, but years of that mantra came with automatic guilt if I choose NOT to do hard things. Today is a bad fatigue day and I've been laying down in compression leggings most of it. I am not lazy, I am not a bad person, I am disabled. My body needs extra rest and that is okay. If nothing else, I hope someone else sees this and is reminded that it's okay to give yourself a break. ❤️

Tips for Tilt Table Test Tomorrow

Having my tilt table test tomorrow! Any tips? During today’s physical exam with the laying and standing bp check, my bp dropped 20 points when standing. He said that was interesting because it did not fit the POTS criteria as well having a high heart rate while sitting did not fit the criteria. Any thoughts of what it could be or questions I should ask him tomorrow?

Finally Got a Diagnosis for My Long List of Symptoms

This week, for the first time in my life, I had a doctor look at ALL my symptoms and realize they were almost all connected. I have had swelling issues, cardiac arrhythmia, tachycardia, issues swallowing, fatigue, headaches, the list is long and tedious. But my cardiologist looked at all of it and said to me "Huh, has anyone ever told you it's not your heart that's the problem?". I was incredulous as I've always been told I just shouldn't drink caffeine and try to lose weight. She went on to say that all of the issues I have are regulation issues (other than the hypermobility) and that I actually have dysautonomia. The treatments for the symptoms are the same, but to realize that, at 22 years old I don't actually have multiple different issues, but one overarching disorder is somewhat relieving.

Looking for others with Autonomic Dysfunction

heyo! got this app to see if other people who have autonomic dysfunction exist, my doctors know I have it they just dunno which specific type. I'm trying to get a service dog too rn

Feeling like a fake with dysautonomia symptoms

today for the first time in awhile i did some mild exercise to see how my body will react. it was basically what i expected and similar to before. i sometimes make myself think i’m faking having dysautonomia(even though im definitely not) because so many of my symptoms don’t show on medical tests and very few believe me. does anyone else feel the same or have the same experience regarding their symptoms and medical tests?

Managing Dysautonomia Symptoms in School Sports

if anyone had Dysautonomia or POTS-like symptoms while in middle or highschool, how did u manage your symptoms regarding sports or gym class? it was always a big struggle for me, especially when i had to do certain exercises which raised my symptoms. one of my main issues growing up with dysaugonomia was exercise intolerance.

Managing Dysautonomia Symptoms: Tips and Tricks

how does everyone better manage their Dysautonomia symptoms on the daily? my main ones are heat and exercise intolerance and dizziness… they’ve gotten worse recently and i want to find more ways to accommodate myself at least at home.

Unsatisfied Hunger: Anyone Else?

does anyone else have random days where they’re very hungry throughout the day and never fully satisfied?

Worsening Dysautonomia Symptoms: Seeking Answers

i have Dysautonomia and for the past month my symptoms have been worse and i’ve been more dizzy and felt out of reality. anyone know why this may be?

Living with Dysautonomia in a Hot Climate

Hello Fellow Alikes. I have been chronically I’ll for decades but I was only recently diagnosed with dysautonomia in the form of “hyperandronergic POTS” and vasovagal syncope. It’s hard living with this condition in a super hot climate. It’s completely disabling for me & battling constant dehydration is exhausting. Does anyone know what caused their particular case of dysautonomia? And does anyone here have hyperandronergic POTS?

Undiagnosed Symptoms and Normal BPM Rate

so I haven't been diagnosed yet- but I've been experiencing symptoms for years. mostly stomach issues and migraines since I was like 14 but about a year ago I started fainting. had to stop seeing doctors for a bit. long story. anyways my question is- anyone have a fairly normal BPM rate? like my doesn't ever get too high not like I've seen some people with POTS for example get. the highest I've measured is 127 and that's when walking to the kitchen.

Exercising with Chronic Illness: How Much is Too Much?

Are you able to exercise? If yes, how often and how intense? Do you crash after a workout?

Tips for Managing a Chronic Condition

what has helped with this condition

Overcoming Alcoholism and Injuries: My Journey to Recovery

I've had over 35 broken bones 10 orthopedic operations I was a terrible alcoholic nearly died once I was found 71° body temperature and life support for 11 days I'm sober now for about 2 years and then neuropathy is my biggest problem I have 17 screws in my spine several months ago and rods and many other devices fake right knee but the neuropathy is my biggest problem at this moment I'm wondering where do you really go for this sort of thing