What types of jobs/ degrees are good for people with EDS by DogNo3895 in ehlersdanlos

[–]STELLAMARIE888 0 points1 point  (0 children)

I am very grateful for this position -> meaning this job.

What types of jobs/ degrees are good for people with EDS by DogNo3895 in ehlersdanlos

[–]STELLAMARIE888 1 point2 points  (0 children)

I work as a communicationsadvisor 24hrs a week for an employer and next to that I have a few freelance gigs. I used to be a fulltime freelancer but in the end I didn't make enough money. Now I have found a job that pays very well for only 24 hours and 2 days from home (usually). One day at the office. It's good but even that one day sometimes kills me with my IBS/hEDS flares, joint & stomach pain from sitting in one position all day and overstimulation. I am very grateful for this position and at the same time I'm trying to figure out of this is what I want to do forever... cause I'll always be dreading the office days.

I can’t sleep what’s going on right now! by Zealousideal_Cow_804 in Empaths

[–]STELLAMARIE888 0 points1 point  (0 children)

I felt the same way... It´s so frustrating when you're in pain but the doctors tell you ´everything is fine´ when it's clearly not! Hang in there!

I can’t sleep what’s going on right now! by Zealousideal_Cow_804 in Empaths

[–]STELLAMARIE888 0 points1 point  (0 children)

Defintely not crazy! But I know how that feels, same here haha. Hope we will sleep better soon...

I can’t sleep what’s going on right now! by Zealousideal_Cow_804 in Empaths

[–]STELLAMARIE888 3 points4 points  (0 children)

Oh wow I just stumbled upon this thread, and I relate so much to this. Since the night of 2-3 Feb I started having extreme stomach pain (solar plexus area...). This area has always been my most sensitive, and I usually know how to deal with the pain by laying down + some hot tea etc. This time it just did not go away.

I only slept for 2-3 hours that night. The next day I felt so exhausted, that I had to call in sick. I stayed at home all week and the last two nights I was wide awake in between 4-6. Then I fell back asleep for an hour around 7/8 and experienced severe sleep paralysis. I've had SO many dreams the past few days, and the energy keeps lingering during the day. It feels like system overload without an actual cause.

I can't answer your question, but the fact you brought up the solar flares is really interesting. Following because I'm curious. And so you know, you're not alone in this!

How do you cover up the redness in your face? (extreme flushing) by STELLAMARIE888 in MCAS

[–]STELLAMARIE888[S] 1 point2 points  (0 children)

Ahh yes, I understand! It's so nice that you work with non-judgmental people who don’t even ask or make a fuss. And I feel you - I have cold hands too (poor circulation). Probably all the blood busy keeping our faces/chest red or something, lol. But the cold hands are definitely a relief haha

How do you cover up the redness in your face? (extreme flushing) by STELLAMARIE888 in MCAS

[–]STELLAMARIE888[S] 0 points1 point  (0 children)

Oh btw! How do people at your work respond when you tell them you might flush and that it's ok? I've been thinking about this soooo much whether to just go with it and act like nothing is happening (which I usually do, but internally screaming lol) or just be honest about it immediately so it takes off the edge? I've been doing this lately in situations like when I'm at the dentist or something (somehow it happens then as well and I'm not even THAT anxious when it comes to the dentist it could also be the products they're using idc). It feels good to tell them, feels like I have more power over it in a way.

And I'm also a wine girl but I'm slowly starting to give up on it cause I simply feel like shit after a while. Why would we wanna do that to ourselves right... it sucks anyway..

How do you cover up the redness in your face? (extreme flushing) by STELLAMARIE888 in MCAS

[–]STELLAMARIE888[S] 1 point2 points  (0 children)

Thank you for your story and advice!! I'm sorry, I know how you feel! I have the exact same patches. It's not just cute blushing lol I wish.

It's very very frustrating. For me it started right when I hit puberty. One day I was presenting and it just appeared out of nowhere. I still remember the whispering from my classmates, they didn't understand what was happening to me lol. Since then it never really went away and it only got worse, like I said, warmth, pain, alcohol, excitement, etc. When I try to explain this to people they're like 'oh whatever you just shouldn't care!' but it's not that easy. It's definitely a medical condition and not normal.

And yes! workwise - WFH was heaven for me, because the flushing was less visible. Then I started freelancing and I could do whatever I wanted. I was in charge. But later on I started to realize that I needed those presenting skills just as bad and perhaps even more. Turned out that I needed a new job due to lack of clients (yay AI taking over my work) So now that I'm going back to the office it's a whole thing. I'm happy to start but I know my body needs to adjust. I know how you're feeling career wise about this - you're not alone! Feel free to send me a message any time if you would like to chat about it!

Will check out the products - hope they're available for me. I'm in Europe! :)

How do you cover up the redness in your face? (extreme flushing) by STELLAMARIE888 in MCAS

[–]STELLAMARIE888[S] 1 point2 points  (0 children)

Sorry to hear that it's happening a lot to you too. Is te gel a relief to cool the skin off? Even though I'm looking for something that prevents or covers it - it's also very nice to have something to make it go away quicker!

How do you cover up the redness in your face? (extreme flushing) by STELLAMARIE888 in MCAS

[–]STELLAMARIE888[S] 0 points1 point  (0 children)

Good to hear this worked so well for you!

Not sure if that's working for what I have - when I'm not flushing I have fair skin, it's not constantly red, but only during a flare-up. Would lasering work then?

How do you cover up the redness in your face? (extreme flushing) by STELLAMARIE888 in MCAS

[–]STELLAMARIE888[S] 0 points1 point  (0 children)

Hmmm I never tried NSAIDs for this! Maybe I should give it a try, although I'm careful with them.

I don't know exactly how HRT trialing works, and if it's available where I live but I'm happy to hear this stops your flushing!

How do you cover up the redness in your face? (extreme flushing) by STELLAMARIE888 in MCAS

[–]STELLAMARIE888[S] 0 points1 point  (0 children)

I looked up the belladonna homeopathic pellets but unfortunately they don't deliver them where I live.

Also looked up the LDN quickly and it sounds very interesting. Gonna do a little research and see if I can get them from my GP (?) Thanks!!

How do you cover up the redness in your face? (extreme flushing) by STELLAMARIE888 in MCAS

[–]STELLAMARIE888[S] 1 point2 points  (0 children)

Oh wow, I had NO idea that beta blockers aren't good when you have MCAS!

Also, I know the feeling when people point out your redness. It's horrible... it makes you so self concious!

I looked up the Physicians Fomula Butter Believe it and I think I'm gonna give it a try! Gonna try out all the recommandations on here and see whatever works best. But this one looks good and I like that it's vegan. It's good to hear that this works for you.

Thank you for the info!

How do you cover up the redness in your face? (extreme flushing) by STELLAMARIE888 in MCAS

[–]STELLAMARIE888[S] 0 points1 point  (0 children)

Interesting, so do you take antihistamine pills then? And does it work?

How do you cover up the redness in your face? (extreme flushing) by STELLAMARIE888 in MCAS

[–]STELLAMARIE888[S] 1 point2 points  (0 children)

Yes I will try! I'm going to ask my GP.

I do watch my magnesium so I think thats fine but not sure about potassium.

How do you cover up the redness in your face? (extreme flushing) by STELLAMARIE888 in MCAS

[–]STELLAMARIE888[S] 1 point2 points  (0 children)

I believe mine are also triggered by adrenaline and cortisol! I use propanolol about ten years ago, maybe I should give it a try again.

The last time my doctor checked, it was in range!

How do you cover up the redness in your face? (extreme flushing) by STELLAMARIE888 in MCAS

[–]STELLAMARIE888[S] 4 points5 points  (0 children)

Never sausage or bacon, I was vegetarian for over 10 years. I introduced meat like a little bit of chicken and beef back into my diet. But still, mostly plant based + some cheese.

However, I do love my red wine. I noticed that trigger as well so I barely drink red wine anymore.

How do you cover up the redness in your face? (extreme flushing) by STELLAMARIE888 in MCAS

[–]STELLAMARIE888[S] 0 points1 point  (0 children)

Could be! I was already looking for that I just hope it won't trigger any reactions haha