Autonomic Dysfunction

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Little Victories

I’m actually pretty pleased with myself today.

This morning I went and had my flu and Covid vaccines done. Then I came home and I changed my sheets and bedding, followed by a lovely hot shower, and then I wrote two pages of my novel after being stuck with writer’s block for ages. I’m a little sore after all the movement, but I got through it. All over and done with now - I can rest. 😌😴

My GP is always telling me that I should celebrate every victory - even the itty bitty ones. I’ve made myself a lovely hot chocolate with a dash of Bailey’s Original as a treat, and I’m huddled up with my fluffy hoodie on now, all cosy like.

#chronicillnesswarrior #ChronicPain #POTS #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #EDS #EhlersDanlosSyndrome #Jointpain #jointhypermobility #InterstitialCystitis #BladderPain #Diabetes #NAFLD #LiverDisease #BPD #BorderlinePersonalityDisorder #Depression #Migraines #sciatica #BackPain #littlevictories

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What are your compression socks recommendations?

I haven’t talked about it too much yet, but I was diagnosed with lupus in July. I walked out of that rheumatology appointment feeling absolutely beside myself. Why had no one ever suspected that condition? Why did I have to go so many years before a specialist took enough time to help me piece the symptoms together? I’ve been presenting with symptoms for over a decade! 😅

I definitely have not accepted the diagnosis yet, in fact I’ve been bucking pretty hard against it, but I know that talking about it — especially here — will be a huge step for me in healing and moving forward. (Does this officially make me a Lupus Groupie? I think it does!)

As soon as I was diagnosed, my mom purchased some fun patterned compression socks for me. I didn’t realize how much they’d help me or how much I was swelling and didn’t even realize I was losing feeling in my calves/feet. One brand I’ve discovered is Comrad and ooooooh, their cozy compression socks are SO good.

🧦 P.S. You can shop them here (yes, they’re a little pricey but I consider it an investment in my health 💯):

#Lupus #CheckInWithMe #ChronicPain #ChronicIllness #MentalHealth #Disability #RareDisease #EhlersDanlosSyndrome #SjogrensSyndrome #RheumatoidArthritis #Dysautonomia #POTS #AutonomicDysfunction

Cozy Collection | Most Comfortable Compression Sock | Comrad Socks

Compression shouldn't be this Comfy. Introducing our Cozy Nylon knee-high comression sock, having all the benefits of a Comrad sock with the added benefit of being fuzzy & softer than a cloud.
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Mobility aid-is it time?

#HEDS #AutonomicDysfunction I find it hard to walk around and spend time with other people in their early 20s I need to sit and people stay with me which makes me feel like i need to push myself harder. I haven’t applied for a disabled parking permit or got a mobility aid because I don’t know when it’s time to get one. Do you get one when your life is heavily impacted and you need something to help you keep your life moving or after rehab?

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Never trust the smile of a spoonie

We are the strongest people you will ever meet. And don't you ever forget it.
We might look okay, but we seldomly are.

We can look like a thousand bucks but feel like we just fell 1000 feet from an airplane onto thousands of legos with oozing cuts and bruises all over but we'll be smiling and laughing.
Our smiles will fool even the ones closest to us. Why do we do this? Because we don't want to inconvencience anyone else with our pain. It's not like we can be crying, screaming and moaning 24/7.
The tears are reserved for the flares that are a 8/10.
So when you see our smile fade, just know we are doing even worse than you can imagine.

We are warriors.

Every single day we wake up and fight our bodies. While we also try to manage our relationships, career and social life - as if those things aren't complicated enough without chronic illness being involved.

Health is the biggest wealth. But only those who lose it can truly appreciate that fact.

Stay strong fellow spoonies. 🤍🤍
#AutonomicDysfunction #POTS #Migraine #Undiagnosed #ChronicFatigue #Spoonie #InvisibleIllness

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How do you manage your energy when you go grocery shopping?

Grocery shopping can be so draining — I know it is for me 🙋! I have to be really intentional with what time of day I go and how much I buy so I don’t exhaust myself too much, too fast. Chronic illness can also add a whole other dimension to the dynamic!

When you go grocery shopping, how do you manage your energy or spoons? What are some tips and advice you would give to someone who plans on taking a trip soon?

#ChronicPain #ChronicIllness #MentalHealth #Disability #Caregiving #RareDisease #Migraine #Stroke #CardiovascularDisease #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #Spoonie #Lupus #Endometriosis
#Cancer #Anxiety #PTSD #CheckInWithMe

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I’m new here!

Hi, my name is hippityroo. I've been diagnosed with Inappropriate Sinus Tachycardia, Cluster Headaches, Neuropathy, PCOS, lumbosacral transitional vertebrae (LSTV), IBS, Hashimoto's, Autism Spectrum Disorder, Bipolar Disorder, OCD, C-PTSD, and ADHD. I have a EMG/nerve test tomorrow afternoon and I'm scared out of my mind. Does anyone have any tips or advice? Maybe advice what to expect? Not knowing it driving me up the wall. Thank you in advance! We're testing for Myositis and Limb-Gurdle Muscular Dystrophy if that makes a difference on the testing?

#MightyTogether #Depression #AutismSpectrumDisorder #PTSD #ADHD #OCD #EatingDisorder #Osteoarthritis #AutonomicDysfunction #Myositis

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My doctors really thought I had dysautonomia (POTS)

Almost every doctor I went to other than my neurologist thought I had dysautonomia (POTS). I did my table tilt test and everything came back normal. I have the symptoms plus more which I didn't really think I had pots bc of this. I have sweats, lightheaded, dizzy, fatigue bodyaches, headaches, I have fainted once, brain fog, GI issues, fevers, night sweats, low blood pressure, face rash (comes and goes), joint pain (I woke up on night in extreme pain bc my shoulder popped), bodyaches, nausea, heart beat changes either fast or slow depending, my ankle as swelled as well as my hand and wrist, headaches. I have a positive ANA test. Is it possible that instead of having dysautonomia I could have an auto immune disease that's mimicking dysautonomia symptoms? I feel confused.. Everything just keeps coming back normal, and I'm getting no answers. I'm so exhausted and in pain everyday and lightheaded.. #AutonomicDysfunction #Lupus #ChronicFatigue #Dysautonomia #Ana

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When just surviving isn’t enough

Ever since I went back to work in September I’ve been looking forward to the weekends as times that I can relax and rejuvenate. But it seems that every weekend has its own complications and I push just a little harder to get through every day and the pain gets worse. Just when I think I can’t take it anymore and how am I going to possibly survive another day I do. And I should be proud of the fact that I do but I’m so tired. Every day I feel like the pain is getting worse and there’s no possible way I could survive and then I do … it does it make it fair that this appears to be the hand I was dealt and I wish that there was some sort of pain management that worked enough where I can live the the life I want too, not struggle everyday to just survive. I want to be able to live again not just survive one moment to the next. #Pain #PosturalOrthostaticTachycardiaSyndrome #POTS #AutonomicDysfunction

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My little mascot…

Last night I really struggled to get some sleep. On Friday, while walking from a shop to a taxi, I lifted my left leg to take a step and I felt a twinge in my lower back. Then, when I went to lift my right leg to do the same, I nearly crumpled to the floor as an intense cramp went through the entire of my lower back. I managed to hobble my way to the taxi and got myself home.

I’ve been using heat pads and an anti-inflammatory gel and it’s given very little relief, but I persevered. Then, last night at around midnight I had a POTS episode whilst I was on my way to the bathroom before bed. I fainted and hit the floor hard, according to my mum. I’m just glad I wasn’t conscious when I hit the floor because I can only imagine the pain I would’ve felt.

After the episode, I really struggled to get up, get to the bathroom and get to bed. But I managed it. I took extra painkillers but I just could not get comfortable. I tried lying on my side with a pillow between my knees, I tried lying on my back with a cushion under the curve of my spine. Nothing was working. Eventually, I gave up and pulled out my laptop to do some more notes on my novel.

As usual, Loki was sticking to my side. Like he normally does when I’m unwell or in pain. He came up for lots of cuddles and fusses. Until he settled behind my fan, and slowly crawled up until his head was peeking at me from behind the screen. He looked so cute, I had to take a photo. My little mascot. Somehow… He always makes me feel better. And I feel like he really does love me back.

Anyway, I spent the night just tapping away on my laptop, listening to quiet music while I made my notes and tweaks. I just wanted to show you all how much of a good boy he is. Don’t worry - he was given lots of treats and belly rubs.

#chronicillnesswarrior #ChronicPain #POTS #AutonomicDysfunction #EhlersDanlosSyndrome #EDS #PosturalOrthostaticTachycardiaSyndrome #Jointpain #Fainting #BackPain #cramps #Pain #InterstitialCystitis #BPD #NAFLD #LiverDisease #FattyLiverDisease #Diabetes #Migraines #Cats #Animals #TherapyPet #TherapyAnimal #therapycat

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