Autonomic Dysfunction

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Autonomic Dysfunction
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Needing some support #ChronicIllness #MentalHealth #AutonomicDysfunction #ChronicFatigue #Anxiety

So, I decided a little bit ago that I would change universities and try to finish my psychology degree. Well, now that things grow closer and dates are due for important things, I find myself stressing out and causing some mild flares. On top of trying to go back to school, the debt from loans and books is weighing on me a little mentally. I’m also trying to plan me and my fiancés wedding; admittedly thats more fun than stress, but it’s still on my mind. I feel like my head is so full I can’t think. Any advice on how to break up some of the stress and help the brain fog from the mild and more mental flares? Any small activities I could do seated to try and de-stress?

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Does your illness(es) change with the seasons?

Spring has sprung! I know it can be difficult to feel excited like the majority of people when the weather changes. While most are welcoming the warmer temperatures it can be a trying time for those of us with chronic illnesses. For instance, the heat can oftentimes exacerbate symptoms. What are some of the tricks you employ to keep cool and stay safe? Remember to keep hydrated! #Spoonie #ChronicIllness #ChronicFatigue #ChronicFatigueSyndrome #MyalgicEncephalomyelitis #Fibromyalgia #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #Dysautonomia #MastCellActivationDisorder #MultipleChemicalSensitivity

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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:⁠




Shortness of breath⁠


Chest pain⁠

Low blood pressure⁠


GI issues⁠


Brain fog⁠


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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Hip Impingement

For years and years I’ve had problems with my joints, but the worst ones have always been my hips, knees, shoulders and fingers. Last year I was going to sit with my legs crossed, and as I did so I felt something hard in my right hip grind and I actually screamed. The pain literally blinded me for a good 10 seconds. After straightening my leg slowly, it eased up. But any time I turned my leg or lifted it, that same pain came back with a vengeance.

Naturally, I went to my GP and she and a colleague had me moving my leg in different ways and angles, which really really hurt, and said it was definitely an arthritic pain. They gave me some kick-ass anti inflammatory meds primarily used for arthritis (Meloxicam), and said they’d send me for an urgent x-ray of my pelvis.

A few days later I had the x-ray, even though the technician kept making me move my leg in different angles again.

And a week after that, my doctor called me with the results. Apparently I have something called a hip impingement? There’s a deformity in the ball of the joint that fits into the socket of my pelvis. Like an extra lip of bone. And over the years it’s been grinding in the socket so much it’s worn it down, and now I have arthritis. She said my left hip has a similar deformity but nowhere near as bad.

So, I’ve got to try and take it easy. I’m still going for very slow and short walks to get me out of the house. But it’s so damn frustrating that I have to slow down! And I know if I go against what she suggested, I’m going to seriously pay for it. Ugh.

So, I’ve done a lot of reading in the last few weeks. Yesterday I picked up A Court of Thorns And Roses (ACOTAR), and this morning I was sat in my mum’s room just quietly reading… Until Loki jumped up and stared at me. 😂 I don’t think he approves of me reading instead of giving him cuddles. He’s such a jelly-belly!

Anyway… I hope you’re all doing okay and having a good year so far. 🌺

#ChronicPain #chronicillnesswarrior #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #EDS #hipimpingement #Arthritis #ArthriticPain #InterstitialCystitis #LiverDisease #BPD #ComplexPTSD #Depression #Anxiety #resting #Reading

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Water Intake???

Does anybody have any suggestions on ways to increase my water intake? I have POTS and I don’t like drinking water but I’m supposed to drink like 2-2.5 liters a day. #POTS #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome

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How do you explain POTS to other people?

Edited to make it shorter:

I’d really appreciate advice on how to explain POTS to (a) close friends who don’t understand/ accomodate (b) strangers in public transport who don’t believe bc of age / appearance (c) bosses who seem troubled by requests for accommodations.

I’ve thought of getting a visible pin or something but I do not like drawing attention to myself because of my condition

Thanks in advance!! ♥️

#AutonomicDysfunction #Spoonie #PosturalOrthostaticTachycardiaSyndrome #POTS #LivingWithPOTS

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Flare up cart ideas!

Do you have a flare up cart? If so what do you put in it so it’s easily accessible to you during bad days and flare days? #Flareup #Fibromyalgia #UCTD #AutonomicDysfunction

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POTS (or other Chronic Illnesses) and Wegovy/Ozempic?

Hello - it’s been a while since I’ve been on. My name is Lauren (she/her), I’m 20, I’m from Minneapolis, MN. I was diagnosed with #AutonomicDysfunction (#POTS ), EDS, Hashimoto Thyroidits, and CFS in Jan 2019 and have been on treatment with medications and lifestyle changes. Things have been working well but because of a mix of genetics, thyroid disease, inability to exercise regularly, and a busy college schedule, weight gain has been inevitable over the past 4 years. My PCP brought up the idea of #Wegovy (aka #Ozempic ) for weight loss. My mother has had success with it but I wonder if it is safe for use with POTS. I already get lightheaded if I don’t eat enough and I know it causes you to eat less and feel full sooner and longer. In addition, I have #Gastroparesis so I wonder if it’s a good idea.

Wondering if anyone has experience with POTS (or similar chronic illnesses) and being on Wegovy? If so, willing to share some thoughts? I’ve done some preliminary research and have seen it can be helpful and may become more mainstream for POTS treatment, but also have seen patients report it causes flares and they had to stop. Need advice. Happy Holidays!

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I'm new here!

Hi, my name is RedKiwi. I'm here because my daughter has been unwell for 18 months and been told she has POTS, Autonomic dysfunction and potentially EDS. I need to learn more about all this and how yo help her.


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