Dysautonomia

Hi, my name is SiennaBongo69511. I’m looking for information on symptom management for dysautonomia symptoms- POTS, gastrointestinal issues, bladder management, shaking hands, random headaches and pain.

#MightyTogether

Hi friends! I am desperately looking for a job I can do from home right now. With my POTS and EDS, I’m not able to work a normal job but all of the remote work I find is either AI or a scam! If anyone has any tips, please help a girl out! #Dysautonomia

Hey everyone, so right now I’m in need of some help. I’ve had multiple symptoms for years since 2013… palpitations, heart rate spikes during sleep, blood pressure spikes during the hr spikes, dry mouth especially in the morning, blood pooling in my hands and feet, livedo, unexplained bruises( the first few years) little to no sweating, and when I do sweat it’s in my hands and feet, feeling heavy, like I have weights tied to my ankles and chest, a constant head tightness but it’s more uncomfortable than painful, but so bad that I have to grit my teeth( might be nerve related ) can’t lie flat or bend down or even change positions too quickly I get an instant head rush, like the blood is rushing through my veins. Constant chronic back pain and stomach pain…. Got worse over the years, chronic neck pain….low bp at night , sometimes 90/57 however tonight it was 153/92 with my hr of 160 this was a spike and it came down after I calmed down and took the propanalol
My resting hr is mostly on the 90s if I’m lucky
I also get random rashes on my lips when I’m in a really bad episode, but it doesn’t happen often
No doctor has been able to really help me except suggest I might have a form of dysautonomia. I’m actually pushing to get some blood work done for autoimmune disease but I have done an inflammation marker in the past and it was normal, so I think that’s why they are hesitant to retake it again, however my symptoms have gotten more intense over the last year
I’ve been on Zoloft for 11 years but took myself off of it as I still had these same symptoms on it. Right now I’m taking apo propanalol 10mg to help with the adrenaline rush I get through the day, my hr gets up to 172, but I’m sure it was higher at one point. And it’s always together with a high bp. I’m wondering if anyone has a similar history and symptoms…and maybe what helped you feel better. whoever reads this fully thank you for your patience…..

My TPO is almost 400 and thyrogobliun like double. Anyone has severe heat intolerance and get treated for an autoimmune thyroid disease and dysautonomia and get better?

I have kids and can't even go to the mailbox unless it's cool enough. I want to go on school trips and go places with my kids. If they have something outside for a sport or event, I want to go. Right now I can't. I'd pass out.

Hi Guys, I'm a disabled teenager and I've had a lot of experiences with people calling me inspirational and saying they could never live with my conditions which I'm sure you understand is a bit of a downer.

Anyway, I'm currently doing a research project for my English Language A-Level into inspiration porn and the use of words like inspirational which objectify people with disabilities to raise awareness (partially to my teacher who said she was just so amazed by my persistence and strength for travelling to a different country). Could anyone offer any anecdotes or quotes about their own experiences with this issue for me to submit?

Thank you for any help!!

#Disability #ChronicIllness #EhlersDanlosSyndrome #ChronicPain #LivingWithPOTS #Dysautonomia #PosturalOrthostaticTachycardiaSyndrome #MightyTogether #CheckInWithMe #BackPain

My daughter and I both were diagnosed with EDS but my daughter was also diagnosed with SIBO. She has these intermittent episodes only at night that she can feel “coming on”. They consist of: chills, body tremors, muscle stiffness, nausea (has thrown up during), excessive yawning but putting her arms above her head and raising her legs up high with pillows lessen the intensity. She will wake up from a sound sleep due the symptoms, it can last hours. She’s asking if there are other kids out there that have the same thing because no one understands what she’s going through. It sounds like dysautonomia but she has not been diagnosed.

Hi, my name is Jen. I have EDS and my 11 year old has EDS. I’m looking for a support group for her, specifically with intermittent episodes at night that sounds like dysautonomia.

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Hi, my name is Loren. I'm here because

#MightyTogether #Gastroparesis #ADHD #PosturalOrthostaticTachycardiaSyndrome #Dysautonomia #LynchSyndrome

Hi, my name is doglover76.

#MightyTogether #Fibromyalgia #Dysautonomia