Autonomic Dysfunction

Has anyone ever seen the health commercial. A woman goes throughout her day and she holds up a paper mask with a drawn on smile, while hiding behind the mask on the realness of what was going on with her. Felt like this was such a important commercial because it shows a true reality.

No matter what your diagnosis is I feel like this can be applied.

I know I am for sure pretty much have done it my whole life and almost feel like it’s gotten worse sense being diagnosed with a slew of diagnoses.

Anyone else ?

#RaynaudsPhenomenon #RheumatoidArthritis #AutonomicDysfunction #MixedConnectiveTissueDiseaseMCTD #MentalHealth #Anxiety

The questioning and constant assumption of “well you look normal”.

Just because I look like I am in my 20’s yet am actually in my 30’s but internally feel like I’m in my 80’s. (Just an expression, mean no disrespect ) . If I feel internally like I do what will I feel like in a year, maybe two or longer.

Sense being diagnosed I just feel like my world has been turned upside down. Not just one diagnoses but multiple and still having 0 clear understanding of any of it and why ? How ? When ? What ? Where ? Etc

I am used to being everyone’s go to person the fixer. Now I just feel like a rock stuck in a river as everyone else keeps flowing on by with life.

How do you navigate the difficult question of but you look normal, you must be healthy. Trying to explain…

Having autoimmune diseases that aren’t physically always obvious can add to our taxing days already .

#MixedConnectiveTissueDiseaseMCTD #RaynaudsPhenomenon #MentalHealth #RheumatoidArthritis #Anxiety #ChronicFatigue #Depression #AutonomicDysfunction

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

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

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