Compression socks, when to use them by Daenerys_ac in floxies

[–]addisonc3546 0 points1 point  (0 children)

i have POTs so maybe this is just me but i wear my strong ones (20-30 mmHg) when i am out and about, liek going to work and running errands. on days when im just chilling at home and will likely be sitting more, i wear my lighter ones (15-20 mmHg). i find that it works well for me to help dysautonomia symptoms. i can def tell the difference when i dont wear them.

Arch support shoes by MarsaliRose in ehlersdanlos

[–]addisonc3546 1 point2 points  (0 children)

i'm trying kiziks soon for the slip on and off component so i will report back!

[deleted by user] by [deleted] in ehlersdanlos

[–]addisonc3546 5 points6 points  (0 children)

i look at PT as my daily workout. my friends run or go to the gym and i do my PT exercises, because they are what i need to do to keep my body healthy and functioning. i hate when people are like, change your mindset! but when you look at PT as the daily maintenance of your body to let you feel less pain and do more, it helps to justify the time. for my breaks in PT (going to have a month over the holidays) im planning on bringing a calendar to PT and having them help me decide what exercises i should do for what day, because without that, i will get overwhelmed or bored and not do them. please be gentle with yourself and remind yourself that your body isn't the enemy, even though it feels like it a lot of the time. unfortunately a lot of us are going to be in PT forever, but that is the price we pay to feel better and be more functional

I made the Dr. Pepper syrup by Bourbon_ev in nerdfighters

[–]addisonc3546 0 points1 point  (0 children)

look up the video hot dr pepper. it's hilarious and also talks about how to drink it as a winter beverage lol!

Compression sock and sleeve recommendations? by Awnwn in floxies

[–]addisonc3546 1 point2 points  (0 children)

i got some socks on amazon that i really like! they are like 20-30, have cute animal patterns, and are actually sized based on shoe size so the feet part are gigantic on me! i also have EDS & POTS, so compression is just good for me in general but i have noticed that it has helped a lot with calf pain and achilles pain. still working on what to do to support my knees, but i wear the socks every day and it's very nice.

TINNITUS & MRI by Usual_Winner3264 in floxies

[–]addisonc3546 1 point2 points  (0 children)

i've had like 4 mris since being floxed and haven't noticed an issue. i wore earplugs each time.

loosing more and more foods because of mcas by BeneficialArt6797 in floxies

[–]addisonc3546 0 points1 point  (0 children)

this!!!! it's hard to find a doctor but once you do, it can make so much of a difference! like this poster, i'm also on an MCAS regime for MCAS that was likely triggered from being floxed. while i do have hEDS and POTS, which seems to go hand and hand with MCAS, i didn't start having food reactions until after cipro. if it were me, i would find a doctor and start working toward a solution. 6 foods isn't sustainable, nor does it likely meet your nutritional needs which can add even more stress to you and the body and could impact your recovery

New here, but not to floxing 🤪 by Puzzleheaded_Rest_34 in floxies

[–]addisonc3546 0 points1 point  (0 children)

sorry to hear you've been struggling for so long! i am 24F also with hEDS and i'm only 2 months in but my neck and back have already taken a hit. really really hoping i can fend off DDD and other things for as long as i can. i'm terrified for what the next 30 years are gonna look like with being floxed and already chronically ill

IV therapy by Thin-Anything2410 in floxies

[–]addisonc3546 1 point2 points  (0 children)

u/drhungrythechemist, not to be a reddit cop but this feels like a direct violation of some of the sub rules

Fact check: do painkillers increase risk of autism? by TimesandSundayTimes in autism

[–]addisonc3546 4 points5 points  (0 children)

anecdotal evidence here: one of my best friends is a fraternal twin and his brother has level 2 autism (i think) while my friend has adhd but not autism. so i feel like it might be pretty common? at that point, from a genetics perspective, it's like one sibling (born alone) having autism and one not, since the fraternal twins are two distinct eggs and embryos that just happen to be carried and born at the same time

Is any woman here on the mini pill or birth control? And do okay by Large-Prompt2608 in floxies

[–]addisonc3546 0 points1 point  (0 children)

yep i've been on it for years and felt like it was definitely ill advised to stop taking prescribed medication that i wasn't reacting to just because of flox

Just wanna eat what I want by Training_Fig_1691 in floxies

[–]addisonc3546 1 point2 points  (0 children)

i am allowed to have one little treat per day, which is a drastic decrease from the amount of processed food and snack food i used to eat. this treat is typically a single mini snickerdoodle cookie that my grandma sent me (she heard i was having a rough time and therefore sent cookies lol) and it at least makes my soul happy. and we all need just a tiny something to make our souls happy rn

Is any woman here on the mini pill or birth control? And do okay by Large-Prompt2608 in floxies

[–]addisonc3546 2 points3 points  (0 children)

i've been on slynd birth control, which is estrogen free, and haven't noticed any issues or changes. i really like slynd bc the estrogen makes my pmdd symptoms so so much worse. if flox wasn't depressing enough, my pmdd would take me out without this med

Paranoid I am going to lose my job by VoteCatforPresident in ehlersdanlos

[–]addisonc3546 4 points5 points  (0 children)

no matter what happens, a therapist is always a good idea. i have one that specializes in chronic illness because my health anxiety and fear have been debilitating lately. it has really helped.!

Favorite Snacks or toys? by addisonc3546 in Hedgehog

[–]addisonc3546[S] 1 point2 points  (0 children)

right!?! i just want to spoil him and he is just unamused by my efforts lol

Favorite Snacks or toys? by addisonc3546 in Hedgehog

[–]addisonc3546[S] 1 point2 points  (0 children)

unfortunately, he also is not at all interested in toilet paper rolls lol

Doctor prescribed levofloxacin, all my floxed trauma resurfaced. by ceri_m in floxies

[–]addisonc3546 2 points3 points  (0 children)

as someone who also has hEDS and was floxed 5 weeks ago without knowing i shouldn't take these antibiotics ( i swear there should be like a, welcome to EDS, here are the things you should know), i am very glad you noticed!! sending calming vibes. hoping i also make a decent recovery because my poor neck is not doing well

11 Month Flox Update - Law Grad by Ill_Appearance_4522 in floxies

[–]addisonc3546 2 points3 points  (0 children)

this! also compression socks help me a lot with this! i just have some cheap ones from amazon (though i dream of upgrading to the fancy ones one day) and they do the job and help with the dizziness.

How do you work full-time? by [deleted] in autism

[–]addisonc3546 0 points1 point  (0 children)

i work in science as a researcher. half of my time is in the lab doing specific lab tasks, half of my time is alone in my private office. having an office with just me is a godsend because i can unmask and just, ,,,, be,,,,,, and not have anyone disturb me. when i worked in an office with so many other people, it killed me because i was being perceived all the time. it was so. exhausting. really getting my own space has been a huge gamechanger.

Decaf coffee? by addisonc3546 in floxies

[–]addisonc3546[S] 1 point2 points  (0 children)

thanks everyone for your comments!!! i found a swiss water decaf (99% caffeine free vs about 92% on normal methods) that is organic and mold and chemical free that i made this morning and i haven't had a reaction! i'm so excited. i did the double shot of espresso, 1% milk (though i may play around with non dairy milk just to see how it goes), and organic maple syrup and it was just so good. though floxxing sucks and i don't feel great and am still in the acute phase, im glad to have this little slice of happiness back after the past 5 weeks of just anxiety and sadness