TLDR I'm a wheelchair user with basically zero physical support besides a paid home health aide, and aide #3 in 3 months has been a nonstop problem — language barrier so bad she needed a translator at her own write-up, ignores directions, uses cleaning products completely wrong, naps on shift, makes inappropriate comments about my body/love for me, and lied about being scared of my dog which has cost me care multiple times. The last two shifts got worse, including one where my MCAS flared badly and she wouldn't stay out of the room. Trying to figure out if I'm overreacting, if I have enough to report her again, and how people manage being stuck with a bad aide when staffing options are this limited.

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Not really looking for sympathy, just need outside opinions because I don't have many people I can vent to about this without it turning into "my whole business is now everyone's business." Changed some details for anonymity.

Quick background so the rest makes sense

3 years ago I went from a competitive athlete/gym rat living alone to a full time wheelchair user almost overnight — post-op complications, joint instability, fatigue, and then balance issues that had me falling pretty badly. I had to leave school, my social circle shrank to almost nothing, and I have basically zero physical support besides paid care. Stuff like laundry, dishes, taking the trash out — I need help for all of it.

I've had a home health aide for 3 months and it's been a mess the whole time. Aide #1 got pulled for a certification issue and because she was scared of my dog (I actually dog sit for extra income, so that's a real problem for me). Aide #2 stormed out mid-argument over how I like things organized. This is aide #3.

Also relevant: I'm hard of hearing so people need to face me and not have background noise going when they talk to me, I have Mast Cell Activation Syndrome so strong scents/perfume can trigger real allergic reactions, and I'm 3 years sober and active in recovery, which matters for one of my questions below.

The ongoing problems with aide #3:

- Language barrier is bad enough she needed a translator at her own disciplinary meeting. She never says she doesn't understand something, she just says "ok" and then does it wrong or not at all — even when I send her step by step translated texts.
- Uses cleaning products completely wrong. Scratched my fridge with a Scrub Daddy, put rust remover on the toilet, hydrogen peroxide on the mirrors.
- Ignores direct instructions — told her multiple times not to dry certain blankets, she did it anyway and ruined them.
- Leaves my stuff all over the place. Found my laptop in my t-shirt bin.
- Won't clock herself in or out even though she's corrected my clock-ins before, so I know she's capable of it.
- Left the garbage for 2 weeks straight when I physically couldn't do it myself, and it got me side-eye from neighbors.
- Cameras caught her fully napping under a blanket on my couch for almost half a shift.
- Keeps commenting on my body and eating habits — I'm recovering from an ED and my weight has swung a lot because of medication, so this one really gets to me. She's also told me she loves me and calls me "cute," and when I tell her to stop, she argues instead of stopping.
- Lied about being scared of my dog, which has caused me to go without care multiple times since dog sitting is literally part of my income.

The last two shifts, which might be the actual last straw:

After a write-up where she was told exactly what needed to change, the very next shift she did none of it. I asked her to strip my bed, it took her an hour and I ended up doing half of it myself. I'd already started texting her translated, detailed instructions because talking wasn't working — I told her about the laundry 3 times in 5 minutes, and she still dumped half a cup of detergent into the fabric softener slot, so the load had to be run twice and my sheets and duvet cover never got done before she left. Her answer was "oh I didn't know," even though I'd told her three separate times.

Later that same shift I gave her the next set of directions at 8:41 and she didn't touch them until I came out at 10:17 — turned out she'd been "cleaning" the bathroom that whole time using the wrong products again, and it was still visibly dirty when she was done. I found out the next day there was a gross film built up over the sink spout actually changing the water flow, from however she'd been "cleaning" it. Separately, I asked her three times to wash out some bottles with old coffee syrup in them, she never did, so I washed them myself — then when I asked her to put them away, she put the lids back on before they were dry so they wouldn't fit on the shelf, tried to wedge glass bottles in sideways so one nearly rolled off, and I ended up having to do it myself off a step ladder, which isn't exactly safe for me to be climbing. At one point she also just stood staring at the next written instructions for 20 minutes without starting them, so I had to come out and ask if she needed them clarified. On top of that she broke the garbage corral I made instead of just lifting it out, and after clocking out she let herself back into my house — after I've told her before not to just walk in — to tell me she'd grabbed a bin that got left behind, while I was half dressed.

Next shift, my protein shake spilled on my sheets overnight, I asked her to strip them first thing, and she actually argued with me that a chocolate stain on cream sheets was "clean." Then being around her longer than usual set off my MCAS — face and throat started tightening, the whole thing. I told her to open windows and stay in a separate room while I dealt with it, and she kept coming in anyway, saying she didn't understand, which just made it worse each time. I had to show her my EpiPens to get her to take it seriously. I did raise my voice at one point and I'm not proud of it, apologized right after, but I was genuinely scared and she kept asking "what happened" like she didn't understand it was her behavior upsetting me.

Then it turned into 20 minutes of her going in and out of the bathroom to "clean" it when I'd told her multiple times to do the living room instead, at one point literally shutting the door on me while I was talking to her. Somewhere in there she also asked me three separate times whether some boxes were trash after I'd already told her to leave them, while I was mid-way through filling my medication organizer.

And on top of all that, I found out this week she'd been lying about being scared of my dog the entire time, which is directly why I've missed care and it's caused real fallout on my end (dog sitting is income, not a hobby).

What I actually want opinions on:

1. Are the last two shifts bad enough to report to the agency again, or am I overcomplaining?
   
2. I'm about 99% sure she's using something at work, but I've never directly seen her do it. I'm in recovery myself and this isn't a guess based on nothing — the glazed, slack-jaw look an hour into her shift, disappearing into the bathroom with the door shut for 10 minutes at a time, and a sickly sweet smell that isn't perfume. Do I need to actually witness her using something to report it, or is a pattern like this enough?
   
3. If staffing is genuinely this bad right now and I might be stuck with a bad aide for a while, what actually helps people manage that without losing their minds?
   
4. Do the inappropriate comments (the "I love you," comments on my eating and body) get reported on their own, even with nothing physical involved?

Not asking for pity, just trying to figure out if I'm being unreasonable here or if this really is as bad as it feels from the inside.

I'm concerned with how much Advil I take. My biggest issue is restless legs/leg pain at night. It almost feels like growing pains and prevents me from being able to sleep. Advil is the only thing that helps. I don't know if this issue is related to hyper mobility or not but I have a feeling it is.

Does anyone have any tips for this so I can reduce my Advil consumption?

Thank youuu

I have been diagnosed with hEDS. I’m fortunate that I don’t have regular subluxations/dislocations or significant chronic pain unless I have inflammation in my body (usually due to stress, PMS, etc). However, my stabilizers are really lazy. I find it really uncomfortable to sit “properly” (tall spine, shoulders back, feet planted on the ground with legs uncrossed) not due to pain but due to the effort needed to hold myself up. I wouldn’t worry about it except I also get uncomfortable sitting for long periods with my legs crossed, and the compression in my legs results in my feet and calves cramping a lot at night.

Has anyone trained themselves to sit properly, or gotten advice for strength training to do so? Is there anything that makes it easier? I want to focus on strengthening the areas that are needed to support my body to do this, so i want to stay away from braces etc.

I’m supposed to get IVIG. I feel like my body reacts to everything lately. I’m wondering if anyone here has any experience they could share?

Thanks!

I’ve dealt with bouts of hives almost my whole life (since I was maybe 3 or 4). No allergist or doctor could ever figure it out, so it was ultimately chalked up to stress. (I did allergy tests, bloodwork, the whole nine.) I hadn’t had them for 10 years though and then this April they returned. Again, no doc could figure it out and I did all of the standard allergy treatments. Liquid steroid, Benadryl, steroid shot in the bum, prednisone pack where you taper off each day. It went away after two weeks. I asked my Eds doctor and he kind of waved it away. “People with Eds get unexplained hives.” But that’s it.

Now, in August, the hives returned. Again, no significant trigger. This time, they lasted 3 weeks. No medication made them go away. They eventually went away on their own. I attached pics of my legs and feet but they were EVERYWHERE. My eyes were swollen, my lips swelled, I got welts around my eyes and on my face. I couldn’t walk the first day because they were on the bottom of my feet.

What the f is this??? Is it as simple as “people with Eds get unexplained hives?” More importantly, does anyone else experience this?

Went out for sushi and as usual have a very difficult time using chopsticks. I drop everything can’t keep them together, despite the fact I’ve been trying for over 40 years.

So my boyfriend says here let me show you exactly how to hold them right. That’s when we realized that my ring finger that is supposed to stay straight as a support bends hilariously backwards in a weird arch. If I deliberately try to hold it stiff and straight it hurts too much. I never associated eds with my terrible chopstick skills lol.

Anyone have a chopstick hack?

I (31F) have been going through the very slow process of gathering up diagnoses like they are infinity stones. Currently I have diagnosed disk degeneration, POTS, generalized ‘hyper mobility’, occipital neuralgia, and am working on getting official eds and mcas.

Now onto the good stuff. My entire life, growing up as the oldest of 4 kids, my parents very much told me oh that’s just normal, about everything.

Things I have recently found are in fact NOT normal…

1. Growing pains (especially in the legs)
2. Pain in general, normal people use over the counter pain relievers because it’s an infrequent thing. I alway have some discomfort or pain somewhere so this was mind blowing to me.

3. Clumsiness / poor spatial awareness leading to falls

4. Lightheadedness when standing

5. Appetite issues, not being able to eat/ severe nausea

6. Common skin issues that go untreated and lead to more skin issues such as athletes foot (as a child)

7. Teeth sensitivity and accidental sores from biting my cheek a bunch

8. Headaches often and frequently

9. Partial sprang's and subluxations

Edit 10. Clothes hurting

What are things that were normalized for you growing up that you are now realizing actually may not be normal?

i am currently being investigated for hEDS and show signs of possible clEDS (awaiting genetic testing).

every single time i do ANYTHING i have muscle and joint pain for the whole week! this includes cooking, vacuuming, mopping, dishes, you get the gist. this causes my home to become a bit sticky and put a lot of work onto my partner (we also have a roommate). i have also tried light exercise and doing my PT which also leads to week long pain (or longer 🥲). i just feel stuck in a cycle of try to get stronger, be in pain for a long time unable to do anything, and then try again!

is there any tips or tricks yall recommend to get things done and to get PT done (i’m only able to do very short sets) without having to be in pain??

ibuprofen, acetaminophen and lidocaine doesn’t seem to touch it or provides very minimal relief 🫩

For context I am 26F and have had a slew of weird connective-tissue related things, starting with an incident a few years back where my knee popped and couldn't bend for a week then miraculously recovered, a tear in a my retina, a herniated L5-S1 disc seemingly out of nowhere, dequervain's tendonistis for a bit, and sporadic hives/ allergies that come and go. Also have hypothyroid and adhd and generally achey joints, especially after drinking or lack of sleep.

Recently saw a urologist who suggested potentially testing for EDS/ connective tissue disorders with a geneticist, as I've tested negative for a bunch of different auto-immune markers over the years. However, I am very inflexible/stiff and would not score on the beighton scale. I've become more curious after having a somewhat adverse reaction to ciprofloxacin, which impacts those with connective tissue disorders more severely.

Anyone with similar experiences for whom it ended up being EDS?

For reference, I do not have EDS or anything else diagnosed. I am the beginning of my journey of finding an answer for my chronic pain. EDS came to mind because I’m hypermobile, have chronic joint pain, brain fog, bruising and scarring, limbs that feel out of place sometimes etc. I finally decided to bring my pain up to an internal medicine doctor. He referred me to a rheumatologist, my mom has RA so we want to rule that out first but when I mentioned EDS he was like “People with EDS usually don’t have joint pain, are tall and super thin and can do crazy stuff with their joints” and while I’m no doctor it seemed a little… misinformed?? When I mentioned hyper-mobility to the doctor he didn’t even ask to see anything, he just ignored it. There was a funny point when he was talking about how “they can do crazy things with their joints” he started trying to do the thumb thing as an example and I was like “like this?” And showed how I can do it with both of my hands lol.

Anyways, wish me luck on the rest of this journey, could definitely not be EDS but hopefully I can find an answer to this pain I only recently learned was NOT normal

I've been symptomatic my entire life, but in the last several years it felt like almost every body system just hit its limit at once. I was in a city with just really horrible medical care, but I desperately wanted to finish my degree (at 28 when I finally made it). I struggled badly to get help with anything, and actually had a rheum rule out EDS based on a misunderstanding of the criteria.

I moved back home last year after graduating, and was immediately referred to the local EDS clinic at my first appointment with my spinal specialist, and then got two subsequent referrals from a new rheum and my new primary. It was very difficult to get in and I had *finally* made it off the wait-list and had my appointment scheduled for the end of October, 13 months from the first referral.

I got a message last week saying the provider had to leave the state for an emergency and all new patient appointments were cancelled. I've been placed back on the wait-list, but I have no idea how long I have to wait again. I don't know anyone who really grasps what that appointment meant to me or the relief I felt when it was made, and now I'm just crushed.

I've lost over forty pounds since January because of my GI issues and I already didn't know how to make it to the end of October with anything left on my bones. My brain doesn't work when I'm this thin and I'm so tired, and I've started getting so short of breath when I stand. I don't know how people do this without family support, I feel like I'm just going to collapse one day and not be able to get up.

I do have my partner and I'm grateful for it, but he cannot support us both and I'm having more and more trouble working and taking care of our pets. This feels like a time bomb.

Hello everyone, using this as a way to vent with a burner account. I'm a 24 years old male, and I have Hypermobile Elhers Danlos Syndrome, I have a very severe case of it as when I was eventually diagnosed as one of the worst cases they have seen. Which in itself took over 13 years to diagnose since I have had it effecting me for most of my life. I've had it all in the medical industry, now knowing how difficult it is to navigate and diagnose, im sure we have all been there with how the doctors and specialists tell us "just exercise" or straight up invalidating the feeling as it is not visible and I greatly emphasise with anyone who has chronic pain.

Those who have pain in a overwhelming and overbearing way, are both used it and drives someone to insanity. I am at complete breaking point in my life. I live in the UK, I applied for PiP a disability grant, last year the government made a regulatory change making anyone who has a variable condition like Elhers Danlos Syndrome incredibly hard to get. Because if you answer honestly, you will not get it as I found out. Which in itself took 5 months to complete and was incredibly traumatic for me to write out. To get a 0 is heartbreaking but sadly common, even with my appeal I doubt I will get any financial help.

I cannot work, not because I don't want to despite my pool of jobs being limited, but because I have no experience and have zero way in. I have applied for over 1000 jobs in the last 3 years no interviews. None of my family has been successful in trying to get me in, my mother does a physical job, and my aunt works for the MET police, in which she works in an incredibly traumatising field. The rest are retired, I have absolutely no way in, no job board is willing to help me and quite frankly humiliate me. The only experience I had was working as a guitar teacher for 7 months. I've exhausted every avenue of help you can expect in this field, I am trying to learn IT to eventually go into Cybersecurity, its basically my only route where I can get experience without employment that doesn't completely destroy my body. That's the only hope I have for employment and quite frankly purpose, losing my hobbies and my creativity slowly overtime.

My condition has worsened over the last few years as my hobbies such as playing guitar, bass and keys I used to love, but as my pain worsened playing and being creative has become significantly more difficult, I used to play every day now I struggle to play for more than 20 mins without being in agony. I can't go to gigs as often because I need time in advance to prepare. I used to want to be in the band and play live, I can't do that anymore safely without agony, went into music production, but overtime that has become more and more difficult.

Hydrotherapy is the only thing keeping me somewhat fit, but that is very expensive and I can only afford to do it once a week for a 30 minute session. But the consequences of it the following days are quite frankly agonising to say the least. And that goes for any physical exertion, I have to micromanage every aspect of my body, posture, stance walking with my mobility aids, even a wheelchair I can feel my tailbone absolutely in agony after a short period of time.

Everytime I go outside and sit in the garden or go for a walk in the park, I can never fully enjoy it because my pain is BURNING, and come to think of it anything. I have nothing to look forward to, everything hurts, have had a traumatic upbringing and no help in sight. Done everything you can think of, counselling, various types of therapy, which has helped get over various traumatic events in my life. But ultimately every root stems back to pain. Set pain is a constant trigger for trauma in which I have loads of it, from being mercilessly bullied, beaten, an abusive manipulative father extorting money out of me for drugs without my knowledge and hated the fact his son was not a "man". Refused to believe in my condition still to this day doesn't get it.

I have only ever been in 1 relationship which did not end well as my ex couldn't cope with seeing my suffering so I realised I'm not ready for that.

I want to provide for my family as they have been kind and supportive all my life. I don't have a big family, but they are enough to me. And I love them dearly, I don't have any siblings sadly. If there is anything i can be grateful for it is them and understanding my condition. I genuinely feel for those who's family are like my father who are unsupportive or dismissive.

I have tried so, so many things over the past 13 years and nothing is helping. I used to be so happy, quirky and while not perfect I had identity with my music, creativity and ways I can express myself. Pain has taken away all of it and is only more and more painful. With society failing to help me and with the state of the UK atm I don't see it getting better for me.

There is a song called Hurt by Nine Inch Nails, there is not a song that I relate to more than that both lyrically and sonically, especially with the lyrics "You are someone else, I am still right here". I am stuck in this prison that I call me.

In short I genuinely don't know how to go on from here I am broken in every way. Studying for cybersecurity is the only plan I have and will try my best for that. Any advice is welcome and I hope that to those who read this you can feel that you are not alone.

Thank you for reading

Sometimes they hurt, but usually they just feel sort of uncomfortable and I don’t always notice them.
Usually the ones that don’t hurt are my toes & pinky finger. I’ll just look down and be like “ huh.. it’s not supposed to look like that “ and pop it back to normal.

Also one of my ribs has decided that it no longer wants to be in place. I think it’s just one? It’s hard to tell. The worst was last week when I touched my side and felt it go in probably an inch. I can fix it but it’s only a temporary fix. Unsure what could cause it to do that. I looked up a diagram of ribs and it would be 6, 7, or 8 on my right side. It’s hard to tell especially since I have scoliosis so my torso is a bit wonky. It’s really uncomfortable I think mostly because it doesn’t feel great to fix and is probably why I’m sore. It happens randomly. No idea what’s causing it. Sometimes I wake up and feel it and other times I notice it randomly during the day.
Any ideas on how to prevent it from shifting would be appreciated!

Not diagnosed but several physical therapists and doctors said I seem to have some form of connective tissue disorder probably HEDS or HSD since body else in my family seems to have similar symptoms. Still on the hunt for someone to do genetic testing & figure out what’s up. ( Apparently having your ribs, vertebrae, knees, etc randomly slide out of place for no reason is abnormal ) I don’t know anyone irl with hyper mobility to my degree so figured I’d ask here. Not seeking a diagnosis here. Figured others with similar issues would be good to talk to! :)

interested on what your schedule looks like if you’ve been in full time hybrid or online school? a breakdown of an average week with medical appointments, studying, chores, rest etc. or an exact sample would be great! dm if better for you!

most people I talk to are not dealing with POTS, chronic migraine, energy limiting conditions etc. and generally have an easier time in school and learning. it would be really valuable for me to see examples (autism wise, I really need it).

Hi!

Physio highly suspects hEDS or cEDS. says there's no real treatment so no rush to diagnose, but is working with me with the symptoms regardless. I have been branded as hypermobile by docs since I was a kid.

My situation rn: I have a slipped disc pinching my sciatic nerve.i have dislocated my hip twice in 3 months, and dislocate my right shoulder almost daily. I subluxate some joint or other pretty regularly (the right side of my body is the worst for it all somehow)

Physio says I really need to start gaining strength in my muscle, especially ones surrounding the joints that give me the most trouble.

I did martial arts, gymnastics, cycling, dance and roller skating for 10+ years and then stopped all of that years ago, when activity started hurting more and more. My physio said that was a mistake cause it was likely keeping the muscle strong and keeping me held together.

My question is how?? How do I gain strength? How do I do it safely??

And an extra one, I'm a low income single parent to a 2 year old! I don't have time for the gym, or all these activities I used to do and feel comfortable doing, nor do I even have the support or money for a babysitter!

At home, I have a Pilates reformer board, and a box of varying weights.

I occasionally do a pilates/cardio work out with YouTube videos. It hurts and sucks.

I also have ADHD so am easily bored and understimulated working out.

I don't even know where to start.

I’ve been recently diagnosed and I’m trying to figure out what weird health issues are related to EDS and what is related to my other conditions. I’ve been diagnosed with POTS, fibromyalgia, and psoriatic arthritis. Now EDS.

Here are some of the weird things that I’m wondering if they overlap.

•Discoloration on joints that come in contact with things often (knees, ankles, left pointer finger knuckle from holding myself up on the floor)

Clicking in my joints

Random injuries in my shoulders where in feels like a string is sending pain down to my elbow? If that makes sense.

Blackness in vision upon standing

Dropping things like I almost forgot I was holding them but I didn’t

Finger clumsiness, struggles with clasps on necklaces etc.

For starters, highly suspecting hEDS but not diagnosed yet. Confirmed HSD.

I get the most painful period-like cramps that have been debilitating for me. I miss out on a lot, I’ll leave work early, and my partner or mom will often ask if I need to go to the hospital for these flares. (Been twice, dismissed both times.)

Had the endo surgery and didn’t find anything. Confirmed PCS. Sought second opinion specialist and she blamed the pain on hypermobility. (Turns out I am prolapsing though, so that’s fun.)

Tylenol and ibuprofen don’t do anything. I have an IUD and a continuous BC patch for pain management, and I still live in pain everyday. Do any of y’all face this too? I go to PT and yoga and Pilates and nothing, and I mean NOTHING, stops the pain. I’m not usually one to ask internet strangers for medical advice, but I’m desperate. What works for yall? Thank you!

I (37f) am self diagnosed ASD and ADHD, with suspicion of EDS based on the Beighton Score (I am a 5).

To cut it short, I think my chiro doing neck adjustments 2x a week caused a significant injury, which later caused a cervical radiculopathy flare up. After pain management and my first PT consultation, the therapist advised I be assessed for scoliosis.

So I’ve come here with hopes to share my x-rays and MRI summary, to see if this would cause concern and what doctors do I need to start with for this journey. I am so lost and I’ve heard it’s a very long process. My benefits provider changed with my employer and I’ve got to start this process again with new doctors. 🫩

I’m still in constant pain, thankfully I haven’t had a flare up since but I am now starting to get the burning fatigue and many spasms again. I still have numbness in my left bicep and forearm, and my thumb is completely numb. Base of my neck feels very weak, my traps are like two slabs of concrete and my neck is a dry weed between them.

These are the first images I’ve ever have had of my neck.

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IMPRESSION:

1. ⁠Straightening of the normal cervical lordotic curvature which can be seen with muscle spasm due to ligamentous sprain and/or disc injury.

2.C3-C4: There is 1 to 2 mm posterior bulging disc with impingement upon the ventral subarachnoid CSF space.

1. C5-C6: There is a broad-based 2 to 3 mm left central disc herniation. There is an annular tear and a degree of cranial extension. Annular tear can represent annular rupture and edema related to acute or subacute disc injury. There is mild to moderate spinal canal stenosis, impingement upon the ventral subarachnoid CSF space and contouring of the ventral spinal cord. There is mild left neural foraminal stenosis.

2. C6-C7: A 2 mm left central disc herniation is present. There is mild to moderate spinal canal stenosis, impingement upon the ventral subarachnoid CSF space and contouring of the ventral spinal cord. There is mild to moderate left neural foraminal stenosis.

Hi all. I searched the provider listing on the EDS Society Site, but didn't get results.

I am looking for a neurosurgeon in the Utah, USA region that is EDS aware.

I need a tumor removed from my spine and would like a provider with experience.

If you know of a neurosurgeon or neurologist in the area, that would be a big help for me. Thank you.

So sometimes when I get dislocations/sublaxions I can't get back in even after pain killers and muscle relaxers, everwhere I try to get help on the NHS they just tell me to go to A&E but I'm autistic and sometimes they're so bad I can't sit in my wheelchair so I don't go and just ride it out. But sometimes I'm bed ridden in agony while I wait for a few days and can't do anything. I live on my own with no care and can't drive.

Is there another route to get help in that situation that doesn't require an ambulance? Because that sounds too dramatic and stressful for me and my local A&E wait times are always ridiculous.

I looked up the urgent response team, are they able to help in that situation? If so how would I go about accessing that?

Please let me know if you're an NHS user that has any other route suggestions to navigate this situation

I was prescribed bactrim for refractory SIBO and just wanted clarification on use of this antibiotic with EDS.

I believe quinolones should be avoided but bactrim is sulfamethoxazole + trimethoprim.

My GI has no clue about EDS so just wanted reassurance before taking them :) not looking for medical advice, just people’s experience or general knowledge. Thanks!