Chronic Illness// Pots Symptoms & Progression **heat intolerance**
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- Опубліковано 10 вер 2024
- ** I didn’t mention in the video but salt and sodium help ease symptoms**
✨Here’s a little about me:
👉 I have been on this journey for several years. Although it took me a year to start realizing this was beyond my scope of care. I always hated Doctors, hospitals, & meds. When I finally sought help it took too long to get proper treatments and I went into a huge unforgiving flare that lasted at least two years.
🌟My formal diagnosis is Ehlers Danlos Syndrome (hEDS) w an overlay of Lupus. I also have the cormorbidies like PoTs, IBS, Fibro, Anxiety, and suspected MCAS (Phew, that was a mouthful).
To sum me up: ✨
🧿 I am cautiously optimistic, refusing to give in, but realistic in my approach. While documenting my journey💜
✨Let’s be friends!!
🌙I am on Insta: @_itscrazywonderful / _itscrazywonderful
🌟Twitter: @_crazywonderful / _crazywonderful
👉UA-cam: Crazy Wonderful / @crazywonderful
Blog: medium.com › @ItsCrazyWo...Crazy Wonderful - Medium
#chronicillness #disabled #lupus #ehlersdanlos #fibro #spoonie #pots #potssyndrome #heatwave #mentalhealth #hypermobility #chronicallyill
I live in Arizona too! We get long summers and its so awful. My husband had to take over with grocery shopping and errands because im house bound. It got to the point where he bought us a rv to get some nicer weather up in prescott for some breaks from all day flaming sun😢 I feel you girl
It’s brutal! It’s been so hot already. I go out at night but stay indoors for the most part during the day. That’s my dream having an RV & being able to escape! That’s so awesome. We have gone to Payson during three summer which is a relief. Hope you’re doing okay!
If you have a beta blocker you should be able to take at least a half of it to help you slow your heart rate down but not too much when you're laying down. Also try inhaling for 4 seconds can exhaling for 8. This will activate your parasympathetic nervous system and take you out of that fight or flight state. Hope this helps. Take care.❤️
I take propranolol and Ativan..i take HALF of each dosage and it stops the shortness of breath and the anxiety WHICH ALSO CAUSES THE FATIGUE because you are revved up. I take the beta blocker in the morning or early afternoon while im up doing things and it doesn't affect my blood pressure.
I will look into taking 1/2. Thank you for sharing. I do those breathing exercises regularly & they’ve always helped greatly. I appreciate all your advice!
You take good care. It must be so frustrating for you not being able to get out of the house! ❤
It is. I’ve gone out a couple times when the sun is down. I make sure I’m going into an air conditioned place though.
I'm in West Tennessee and the heat and especially the humidity is horrible! I don't have a Dr in the area that treats pots or disautonomia. I live by myself and have to stay in the ac as much as possible. I'm thinking about moving north just to be able to function.
I totally get it. I’m trying to deal the best I can. A lot of staying inside. I’ve played w the idea of moving but I have three kids & don’t want to disrupt their life.
What state are you in?
Arizona!
@@crazywonderful I lived in Palm Springs Ca for 15 years and felt so much better inThe dry heat, originally from east coast. I eventually moved back to east coast, NC. I cannot take the humidity here. It affects pain levels and cognitive abilities. I have since developed Pots symptoms, high hr dizziness etc. I tried beta blockers but that made my fatigue much worse. Unlike you, when I am sitting I have no problems. It’s only with standing and activities that my hr goes up to a lit 105 . I also,have a hiatal hernia which could be affecting my heart. Having surgery next month. All symptoms are so interconnected that it is difficult to know exactly what is going on. We all need to keep up our good work and keep moving the best that we can. I hope you ate doing better. That amount of heat for that many days is insane
@@premadimauro2691 humidity is torture! We have monsoon season here and I ache so much more in the weather. I’ll take the dry heat. Now excessive heat is a bit much tho. Lol I hope your surgery helps you. I totally get what you mean by everything being connected and it being hard to tell what symptom is from what diagnosis. I struggle w that way more than I’d like to admit. Today at the moment of me writing this it’s 114 degrees. I’m staying indoors for sure!
Sounds so awful. ❤
No fun 😕