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#POTS vs Summer

Hey friends, it’s been awhile but I need your help. It is now summer where I live and I am severely struggling. I go outside in the heat for 5 minutes and I feel awful the rest of the day. I feel really dizzy and nauseous and my ears start ringing. My feet also have a fun habit of turning purple. I’ve been drinking a ton of water and I wear compression socks occasionally but it barely makes a dent in helping my symptoms. Sometimes I think the compression socks make the heat worse. Any tips on handling the summer? Any and all advice is welcome!
#PosturalOrthostaticTachycardiaSyndrome #Heat #ChronicIllness #Spoonie #SpoonieProblems #help #Advice #heatintolerance #bloodpooling #circulation #Summer #compressionsocks
#chronic #heatintolerance #Summer

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Road trip

So tomorrow I get to take a 999 mile trip from Georgia to Wisconsin. I'll get that extra 1 in there to make it even.

Anyone else absolutely hate long drive? My body aches so bad afterwards. Any tips for surviving? #ChronicPain #Endometriosis #diffuseAMPS #Fibromyaliga #InterstitialCystitis #HashimotosThyroiditis #heatintolerance #RoadTrip


Does anybody else experience chronic heat intolerance

#ChronicIllness #Disability #heatintolerance #medical my psychologist commented the other day that she doesn't know anybody else who hasvthe aame extreme reaction to heat that I do. It made me realize I never have either, even though my family doctor doesn't seem to think it is unusual at all. I've been heat intolerant for over 20 years. I get sick any time I'm in temperatures over 25 degrees Celsius, and anything 23-25 is borderline. Anything 20 degrees or over (or less earlier in the spring, especially if it heats up fast) requires copius amounts of electrolytes to keep me from getting really sick.

Even as careful as I am, which is a lot, (my doctor said the other day that I'm the most well hydrated person she knows), I still experience heat exhaustion a handful of times every summer. (And yes, those of you with stereotypical views of Canada, it does get hot up here during the summers, especially with the humidex. 😉 It may not be tropical, or as legendary as some of the US states, but it does get 30 degrees + sometimes.)

So, just wondering if there's anyone else on here who is heat intolerant? I've seen people who are photosensitive post, but no one with heat intolerance.

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Embr Wave

Has anyone tried this device? The #embrwave Apparently it’s a “personal thermostat”. It can cool you down or even warm you up with the push of a button. It is real pricey, around $300. It sounds real gimmicky to me but as someone who suffers from #Fibromyaliga with pretty intense #heatintolerance where I can even be too warm here in the Chicago winters. This is something I want to try but the price tag is holding me back.

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Do you struggle with the heat or doing outdoor activities/exercise? If so, what kind?

In Buffalo, it was 94 this past week!! WHAT is going on?!

For the past couple of years due to lupus and NCS I was unable to spend 15+ minutes outside if it was anything over 74 degrees...

Until this year.

I spent an entire afternoon soaking up the sun, laying by the pool, playing tennis (horrible at it, btw), and didn't feel like passing out, vomiting, itchy skin or get a heat rash!

Here are some things that have helped immensely.

1. ThermApparel cooling vest. This is a local, very sma business (Rochester, NY) that received a grant at RIT to create something that helps those with MS who can't stand outside in the heat.
I did a video review on this actually so you can see exactly what it looks like and how it feels on Lupus Health Shops YouTube channel.
🔵It can be covered by insurance because it's considered a DME and it's under the $500 threshold which means a doctor's note should be enough proof for approval.
🔵It prevents nausea, headache, and heat stroke symptoms
🔵The cooling packs can easily be refrozen in as little as 20-30 minutes if placed in a cooler, fridge, or ontop of the A/C fan in your car.
🔵it's unisex fit and is super thin and comfy
🔵It's worn under your shirt so that noone sees it on.
🔵You don't feel cold(common misconception)

Those that found it helpful:
Anyone who doesn't want to drop sweat bullets doing outdoor activities like mowing the lawn.

Cooling scarf: This is another wonderful idea and it's way cheaper.
🔵Cools you down
🔵Can be re-wet anywhere as long as you have access to water
🔵Way more affordable
🔵 You don't feel wet (common misconception)

Those that found it helpful:
Thyroid issues
Anyone who's hiking or doing outdoor activities

I don't have a specific brand because I prefer the incognito vest, but there are a few nice ones on Etsy to help support small and local business!

Diet change:
This is actually one of my biggest preventative factors for so many of my health issues, but it did take me months to figure out what's best for my bodytype. Just because I went "Paleo" doesn't mean it worked. I had to tailor it to me and then it reallllly kicked in. We're all different and it's best to work with a functional practioner to help.

Oh before I forget - drinking electrolytes first thing in the AM with a giant glass of water helps hydrate you. Another for when you'll be outside.

🔵Nuun, Go Ultima, Drip are all good ones!


Single Parenting with Chronic Pain w/ very active and independent child

I have multiple Chronic Illnesses and Chronic Pain associated.

As the title suggests, I’m also a single parent . Well, divorced parents with custody and majority parenting time.

My child is young (under 10), independent and very active. I’m looking for ideas on how to help give him what he needs (physical activity) while still caring for and being self-aware of my own physical challenges and not “pushing through” thus creating more pain and fatigue.

This social distancing and quarantine BS isn’t helping anything. The pool use to be an option, but with COVID even that’s taken from us as a fun summer outing. We live in a condo... so we have an outdoor green space but it’s shared with others in the community so things like a slip & slide are a bit trickier.

Does anybody have ideas?! Please Help!

#ChronicIllness #ChronicPain #singleparenting #EhlersDanlosSyndrome #hypermobileehlers-DanlosSyndrome(hEDS) #ChronicFatigue #MyalgicEncephalomyelitis #Fibromyalgia #heatintolerance #singleparent


When the summer heat makes you feel alone  #CheckInWithMe

I know that for many of us with conditions like #MS it makes it hard to go outside so here is a post both to check in and also to ask how do you keep cool I wear a cooling vest to hop between airconditioned places #heatintolerance #Thoughts

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Early Summer #heatintolerance #Dysautonomia #NeurocardiogenicSyncope #InappropriateSinusTachycardia

One of the worst things about this time of year is the heat. Dysautonomia, NCS, and ITS always make sure they rear their ugly little heads when it comes to the heat. Luckily, I found a cooling vest. Hopefully this will give me the freedom to actually be outdoors this summer and not die every time I go outside, or spend the rest of the day asleep after just going grocery shopping from the heat terrorizing me. When the walk from the car into target causes you to pass out, it’s way too much. So here’s to hoping I can enjoy summer. And these 100 degree days before the 1st of June. And all the naps I’ve taken to combat this.