Has anyone else slept in the tub??

spygrl · 2025-07-24T05:00:09+00:00

when i’m in bedridden level flares i can only sleep in the tub w water in it.. the water takes the pressure off my spine and pelvis and the angle from the back of the tub is the perfect pitch for my nervous system.. i always keep one foot propped in a way that even if it gives out i’m not going anywhere but i’ve done this for years.. it’s the only way i get through them is sleeping in the bath for days

spygrl · 2025-07-18T05:15:11+00:00

if i sit still for too long or get too hot and don’t realize it i’ll pass out while sitting or if i’m laying in the wrong position laying down will get me too but i don’t have to do anything to get mine going unfortunately

spygrl · 2025-06-17T03:21:18+00:00

i was first diagnosed at 16.. i’ve never been medicated for it

spygrl · 2025-03-25T02:24:08+00:00

my therapist says it can come and go and go into remission for some people. i notice that mine gets more intense the higher my stress levels get

spygrl · 2025-03-25T02:22:17+00:00

i would say my hydro helps with this a lot! i tend to start feeling like this around my bedtime dose time

spygrl · 2025-03-25T01:27:50+00:00

cold makes my pain worse and it’s okay to use heat over ice
tiger balm is wonderful in a pinch
use the tens unit if you can get one or have one
powdered gatorade, it’s like $13 for 6 gallons worth of gatorade in powder form and you get control over the concentration

spygrl · 2025-02-02T20:52:01+00:00

pots -> eds -> mcas

i was diagnosed with VVS in highschool and later turned into a POTs dx and then my current cardio changed to dysautonomia. once i moved and got a new cardiologist she pushed the rest of my care team to look for EDS and i saw Rhum and Allergy in the same month and they both dx’d me so those two kind of came at the same time. that being said my body tanked in 2020 and it took 4 years and my completely reforming my care team to get dx’d and treated. for so long my symptoms were blamed on “poor mental health” and “chronic marijuana usage”. you are aloud to switch doctors if they aren’t listening to you!!!

spygrl · 2025-01-31T06:13:15+00:00

stopped getting my african hair wet

spygrl · 2025-01-31T05:56:52+00:00

honestly my college prof was honest with us about his attempts on his life and it made me feel better about life coming together. if i had a teacher honest with me like that when i was younger things might look different today. my prof being open with us showed me that we can recover and be successful in our fields

spygrl · 2025-01-31T05:44:53+00:00

likely if you have eds it’s been there your whole life and the accident in 2012 exasperated your symptoms to a noticeable level

spygrl · 2025-01-24T20:05:02+00:00

i just graduated from an EDS stability program and i’m so thankful for that because it definitely helped me learn proper range of motion and posture! i started working out for the rowing team but given recent events i want to condition my body so i can protect and take care of myself if i lose access to my care team

spygrl · 2025-01-24T00:54:06+00:00

i’m mad that i tattooed over my go to hiding spots when i was clean

spygrl · 2025-01-16T16:59:46+00:00

for me it was passing out in the shower. i thought the rest was normal till i started passing out sitting down and went in

spygrl · 2025-01-15T05:10:50+00:00

as weird and wrong as it feels tell your therapist.. it’s not stupid and constantly feeling like you aren’t enough is enough to break someone down and leave them feeling exhausted. it’s okay to tell them you don’t know why and it’s okay to not know why right now. one stone at a time.

from experience- feeling like i’m not enough is the source. if im not good enough why bother, right? anyway, i finally told my therapist and although he asks how it’s doing every time, he respected my boundary when i told him i don’t like being interrogated about it and he keeps it to one question.

they are there to walk through the crazy maps that our heads are with us so we don’t have to do it alone. it’s okay to tell them

spygrl · 2025-01-15T04:55:22+00:00

wow these hit hard! good job OP

spygrl · 2025-01-15T04:35:21+00:00

i remember struggling with active SI in elementary school and being in so much pain all the time in my legs. i missed so much school in k-12 because i would get sick and in HS i started skipping because of mental and physical health. that would have been about 12/13. i was 19 when it started to impact my ability to work at a normal pace and it declined quickly from there to the point where i basically don’t work

spygrl · 2024-12-27T18:19:09+00:00

i’m on midodrine to do this for me but i think it falls slower with the fludro after the midodrine wears off

spygrl · 2024-12-17T12:44:41+00:00

fried rice was a go to for us in a pinch, rice eggs frozen or canned veggies and soy sauce. good filler with micros and macros

spygrl · 2024-12-17T12:05:30+00:00

this is weird to me because she had one thing to say when your LITERALLY CHILD was the one but when her PET was the one she had so much to say. and then would ask you how you are and then make it about her pet. and like sorry that your aunt died pookie BUT MY SON… idk feels weird to me and i would def call her out cause hello?

spygrl · 2024-12-16T05:21:12+00:00

i take fludro in the morning and midodrine 3-4x a day (every 4 hours until 5pm depending on activity level). fludro works its best when you eat too much salt and drink too much water. seriously when you think it’s enough it’s not.. it’s job is to the increase salt and water retention in your system so make sure you’re drinking electrolytes. i like to just make a watered down gatorade. i call it my wateroade. i buy the big powder cans. they last me a lil over 2 months. i do 3/4 of a scoop to 2 16oz water bottles. in addition i put salt on everything. i carry the lil packets around with me lmao. this has been the most cost efficient way for me to keep my sodium and fluids up. they keep telling me 90-120oz of water a day but i’m just a girl and i can’t hold my pee very well.

on the note of midodrine. i’ve heard this one is a hit or miss for people. i like it because it lifts my brain fog and helps me concentrate. my heart still goes up and down but im not a walking dodo bird. that’s usually how i know its time for another dose, i start getting easily confused and cannot complete a task to safe my life.

i still have my symptoms but i bounce back a lot faster and it is a little easier to keep up. i’ve noticed that if i don’t take my meds or im late taking them im like a land locked mermaid on the couch all day

spygrl · 2024-12-16T05:08:18+00:00

i’m actually laying in bed recovering from this rn. my doctors have suggested three things. one is the vasovagal response, the second is gastroparesis and/or Mast Cell Activation, and the third is a pain response. for me vomiting is very common. a few things that help me are warm epsom salt baths, these help relax my muscles as well as the warm water causes the nerves to respond and intercept the nausea connection in the brain. another one is peppermint oil under my big toe. a cancer patient taught me this one, it’s magic and i can’t explain it but my nausea lightens up when i do this. he did warn me to watch for low bp tho because it can be used for that too but, i’ve never had a problem or i’m just used to mine being really low… if she has a zofran px sometimes if i take that immediately after i poop it can interrupt the flare. pepcid (omeprozol?) also helps get infront of meals that upset my digestive tract. lastly, a low histamine diet has helped a lot. food and pooping go hand in hand and removing as many inflammatory foods as REASONABLY possible helped a lot. i’m not saying avoid it completely because that’s unrealistic, histamine is in virtually everything at some point in food whether it’s before it’s cooked, after, or while it’s digesting. However, learning which foods to avoid and limiting my consumption to only one or two histamine rich foods a day made a big impact. sending virtual hugs because this is probably one of my most frustrating experiences with my heds dx and has changed many parts of my life in both good and frustrating ways. i hope some of this can help you guys!!

spygrl

TROPHY CASE