Dysautonomia

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What is POTS?

Postural Orthostatic Tachycardia Syndrome (POTS) is a sustained increase in heart rate of at least 30 BPM (40 BPM for 12 to 19-year-olds) within 10 minutes of standing.⁠

⁠Symptoms may include:⁠

Lightheadedness⁠

Tachycardia⁠

Presyncope⁠

Shortness of breath⁠

Palpitations⁠

Chest pain⁠

Low blood pressure⁠

Syncope

GI issues⁠

Headache

Brain fog⁠

Fatigue⁠

Blurred vision⁠

Dry eyes and mouth⁠

Muscle pain and weakness⁠

Cold hands and feet⁠

Skin flushing⁠

Frequent urination⁠

+ more⁠

#POTS #AutonomicDysfunction #Dysautonomia

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I'm new here!

Hi! I’m Ashley and am new here! I suffer from severe mental health and physical health issues. I am excited to have joined this platform and officially be an “Mighty” lol. I’m pretty unfamiliar with this app/website but I am super hyped to learn the different things to do on here! Because I’m just getting started, does anyone have any tips, some cool things you can do on The Mighty and if you’re a fellow spoonie/dealing with similar issues I do too? Maybe I can make some friends that truly get these struggles…because we all know that nobody gets it like the ones that live it…aka US. I look forward to meeting any future friends!! Again please reply with any helpful information or to let me know of others on here dealing with the same things please!♡

#MightyTogether #Anxiety #Depression #BipolarDisorder #BorderlinePersonalityDisorder #ADHD #OCD #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #MastCellActivationDisorder #Gastroparesis #Dysautonomia #OrthostaticHypotension #ChronicPain #ChronicIllness #ChronicOrthostaticIntolerance #ChronicFatigueSyndrome #Migraine #Insomnia #Psychosis #PanicAttack #PanicDisorder

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EDS flare / Fibro soup = Full body faciitis

I had a flare last year - a lot of inflammation with preceding adrenal fatigue and treatment.
Pelvis was excuritiating and slipped significantly after being locked as long as I can remember.

Tension from my 10/11th rib down to my groin was so tight I had to lift the area and it snapped after a few weeks breaking the 10th rib off and dislocating two ribs

Following this my pelvis dislocated from the Pubic symphysis, coccyx twisted and was very mobile for a few weeks making my spine move around and I struggled to stand up.

Flare worsened and everything was subluxing and dislocating. I lost ability to walk, couldn’t eat or drink for 7 days ( lithium toxicity for bipolar treatment due to dehydration )

My neck became so mobile I couldn’t cold my head up and my ribs would splay when I would try to sleep,

‘ Recovering ‘ has been long - its 13 months since and I’m struggling with complications ( which as always ) seems to be a symptom no one knows.
I have fasciitis so the fascia is pulling muscles out of place and I can’t isolate or use the correct muscles so I could be walking and glute is inactive from restriction and another muscle compensates.

The ribs healed with bone spurs and one rib is stuck underneath the others, I can feel it’s stopping the movement and most definitely a large part of the problem.

I am in discomfort / mainly pain 24/7 which I have adjusted to mentally with 110 tachycardia resting heart rate and nausea 24/7 worsening when my pain gets to high,

The worst part is that the skin pills on my head and across my face it’s so uncomfortable it gives me anxiety and releasing anything only moves the restrictions, eg one hip is always very affected so I can’t walk without a flappy drop leg 😂

( diagnosis of DDD also worst on spine and neck & hernia c6/7 pushing “significantly onto the spinal cord restricting “ )

Does anyone relate to what I’m saying ??? I know it’s convoluted.

I have fibromyalgia and POTs so the lack of exercise is affecting my blood pressure and yet if I exercise I get fever and flare for days.

Any treatments for
Rib bone spur / bad break healing - rib trapped
Muscle relaxants that aren’t sedatives.
Treatment suggestions??? Or consultant specialiity
What the hell is going on and why is there no narrative on fasciitis affecting the whole body

Tagging eosinophic fasciitis in case anyone can shed light my symptoms don’t fit,

… hands swelling from pressure or lack of blood flow. Shoulders out and that fancied it.

#EhlersDanlosSyndrome #EosinophilicFasciitis #EDS #Dysautonomia #Fibromyalgia

1 reaction 1 comment
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I’m new here!

Hi, my name is Winter_and_lilac.
I've been diagnosed with Dysautonomia and POTS, and I am in the process of being tested and diagnosed with 4 genetic disorders.
#MightyTogether #PosturalOrthostaticTachycardiaSyndrome #Dysautonomia

3 reactions 1 comment
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Ketamine tourch (sublingual)

I saw my pain Dr this evening, I have some new symptoms that are what he called nervous system disorder or something like that, just can’t remember exactly. But he is putting me on Ketamine troches which are the sublingual tablets of ketamine. Has anyone tried this and if so how did it work for you?
Thank you for any input.
#ComplexRegionalPainSyndrome #EhlersDanlosSyndrome #Dysautonomia

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Dating with chronic illnesses.

Hey all. I'm currently going through a divorce, after almost 21 years of marriage. Considering I've already been grieving that relationship for a few years, I'd like to get back out there (while taking things slow). It's definitely a bit overwhelming though. I married when I was 19 and my ex is the only person I've had sex with (tmi, sorry). I never dated much. On top of that, I have Fibromyalgia, Dysautonomia, Celiac Disease (so no restaraunt dates for me), and Chronic Fatigue Sydrome. I have some mobility issues, can't be very active, don't have a car, etc etc.

Does anyone have any tips on how to handle these concerns? I don't want to blurt out all of my health issues and symptoms right away. But I also want to give some sort of heads up so they're not shocked when I show up with a cane or have my mom drop me off. Argh. Life.

18 reactions 5 comments