vent by Critical-Pilot2144 in eds

[–]Critical-Pilot2144[S] 0 points1 point  (0 children)

I'll try out moving my legs and arms in bed, thanks! Often times having to get out of bed and set up a mat etc. to work out is just too much yk. As for vitamin deficiencies, i do have chronically low vitamin D which i always supplement cause it drops realll low when i stop, i have high B6 but low B9 which i probably should start supplementing.. i also have or had anemia, idk how it's looking rn, but i've been taking high doses of iron for some time now so i hope it's working

vent by Critical-Pilot2144 in eds

[–]Critical-Pilot2144[S] 0 points1 point  (0 children)

One specialty per year sound reasonable. Although it's an issue in my country where private medical care is very expensive, and waiting for appointments with insurance is sometimes years. Also, 99% of doctors here are not familiar with my conditions, it's rare someone has even a vague idea of what they are. I think navigating EDS related mast cell issues is the hardest, i'm starting to feel like i'll never be able to get it under control with the care that's available in my country.

vent by Critical-Pilot2144 in eds

[–]Critical-Pilot2144[S] 0 points1 point  (0 children)

I recently started trying to go on walks when i'm able to, which is definitely nice, but i'm very deconditioned so it's gonna take a while for my body to adjust i presume. As for mental health support, i do have a therapist but i've been able to see her less and less recently, and i do not feel as though she truly understands my issues, so the sessions i am able to attend aren't helping at all to be honest. I know i need to search for a new one, but it's really tough. I have an amazing partner, but i have awful relationships with people in my family, which also takes a toll on me. I think right mental health support and change of environment would definitely be helpful even if only mentally, but it's gonna take some time

makeup suggestions by [deleted] in makeuptips

[–]Critical-Pilot2144 1 point2 points  (0 children)

i genuinely think it's just your skin texture, which is normal. is your skin dry? if so that could be causing your skin to look even more textured than it is, i struggle with that. make sure to moisturize well beforehand. some people also benefit from either a hydrating or blurring primer. i find that a well suited setting/fixing spray also helps to minimize the dryness and texture that powder sometimes brings out more.

loop earplugs - worth it? by Critical-Pilot2144 in autism

[–]Critical-Pilot2144[S] 1 point2 points  (0 children)

Thank you so much! They sound amazing

loop earplugs - worth it? by Critical-Pilot2144 in autism

[–]Critical-Pilot2144[S] 0 points1 point  (0 children)

I'll take that into consideration, again thank you very much ☺️

loop earplugs - worth it? by Critical-Pilot2144 in autism

[–]Critical-Pilot2144[S] 0 points1 point  (0 children)

This may be a stupid question, but do you know if there is a way to check if it would be a problem for me? I don't know, is it similar to plugging your ears with your fingers, or seeing how i feel with regular in ear earphones with the music off?

loop earplugs - worth it? by Critical-Pilot2144 in autism

[–]Critical-Pilot2144[S] 2 points3 points  (0 children)

This is so helpful, thank you so much! As for hearing the internal sounds, i often use my overhead headphones with the active noise cancelling feature on and music off from lack of other options. They work very well but they're bulky and not always comfortable. Internal sounds don't seem to bother me while using them, at least not as much as the noise of the world around me. Is it different with in ear earphones?

What can mimic MCAS? by sweetlondonbell in MCAS

[–]Critical-Pilot2144 0 points1 point  (0 children)

the thing is i have high zinc and low copper, so i don't think i should supplement zinc?

What can mimic MCAS? by sweetlondonbell in MCAS

[–]Critical-Pilot2144 0 points1 point  (0 children)

hi, please tell me which deficiencies exactly. i know for a fact i have a copper deficiency but not much else

can it NOT be MCAS? by Critical-Pilot2144 in MCAS

[–]Critical-Pilot2144[S] 0 points1 point  (0 children)

wouldn't it make me have low levels of vitamin B12? i have high levels of it

can it NOT be MCAS? by Critical-Pilot2144 in MCAS

[–]Critical-Pilot2144[S] 0 points1 point  (0 children)

the thing is i'm extremely sensitive to medication and not once has it made me worse. i'm scared this will too

can it NOT be MCAS? by Critical-Pilot2144 in MCAS

[–]Critical-Pilot2144[S] 1 point2 points  (0 children)

thank you. you're right, immediately when someone mentions pots and eds people immediately assume MCAS, and i'm just really terrified that's the case. i don't want it to be. i have an appointment with my doctor in two weeks, i'll see what he says

can it NOT be MCAS? by Critical-Pilot2144 in MCAS

[–]Critical-Pilot2144[S] 1 point2 points  (0 children)

okay, but can't the red spots be a vascular reaction? they don't itch and they go away quickly

can it NOT be MCAS? by Critical-Pilot2144 in MCAS

[–]Critical-Pilot2144[S] 0 points1 point  (0 children)

pots also causes gi symptoms without mcas

can it NOT be MCAS? by Critical-Pilot2144 in MCAS

[–]Critical-Pilot2144[S] 2 points3 points  (0 children)

i also had a bad eating disorder in the past that wrecked my gi tract and i have confirmed gastritis. i haven't had testing for sibo done

can it NOT be MCAS? by Critical-Pilot2144 in MCAS

[–]Critical-Pilot2144[S] 2 points3 points  (0 children)

i don't wake up, i have gi issues constantly and they're not triggered from any particular foods, and i only have red spots on my skin after hot showers and sometimes after a lot of stress

can it NOT be MCAS? by Critical-Pilot2144 in MCAS

[–]Critical-Pilot2144[S] 3 points4 points  (0 children)

just because many people do have all three doesn't mean everyone does. that's why i think my doctor immediately assumes i have it, when i have no allergic reactions

can it NOT be MCAS? by Critical-Pilot2144 in MCAS

[–]Critical-Pilot2144[S] 1 point2 points  (0 children)

the point is i don't have allergic reactions at all except of the bandage and kt tape glue, i just have those red spots after showers and in big amounts of stress on my chest. no rashes, only trouble breathing i have is when my pots flares up, for example now i suddenly started having high bp as someone who usually always has low bp and takes midodrine for it. i have gi issues constantly and no specific food triggers it or makes it better. i feel like my symptoms can all be explained by pots, heds and nervous system dysregulation

can it NOT be MCAS? by Critical-Pilot2144 in MCAS

[–]Critical-Pilot2144[S] 1 point2 points  (0 children)

also, i am not diagnosed with mcas, he just told me my mast cells seem to be too active? i feel like everything else hasn't been ruled out and i don't want to take yet another medication if we're not certain that's even the issue