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Community Voices

advice on healthily loosing weight with an ED, HEDS, PCOS, Depression etc. ??

I am currently quite overweight and I want to get into better shape and loose weight for myself and was told to by my doctors. but that seems almost impossible with all of my illnesses. First of all I have an Eating disorder (not specified, more binge eating) which makes food and body image very complicated and then I have PCOS, hashimoto’s and hypothyroidism which is already hard to loose weight with on top of hypermobile EDS which makes getting active and moving physically very hard and painful and to top it off low energy and motivation with depression. I’m trying to do this to just slightly feel better but I don’t exactly how. How do you stay in shape with these kinds of setbacks? i’m open to any advice! Thank you <3 #BingeEatingDisorder #PolycysticOvarySyndrome #HypothyroidismUnderactiveThyroidDisease #HashimotosThyroiditis #HEDS #hypermobileehlers-DanlosSyndrome(hEDS) #EhlersDanlosSociety #EhlersDanlosSyndrome #Depression

31 people are talking about this
Community Voices

Independence with Chronic and Mental Illness (advice appreciated!) #ChronicIllness #MentalHealth #ChronicDepression

I’m struggling so hard with being able to get and hold a job with my illnesses. I just got an awesome job with only weekend hours that paige $40 an hour and I worked one shift and then the next weekend I couldn’t work so they fired me saying I didn’t let them know in advance that I wasn’t doing well and might not be able to make it and that I cancelled with not enough time.😭 I’m 22 and I just want to get some independence like so many people my age have. I can’t drive or hold a job to eventually make money to buy a car and an apartment or be able to live in my own and it’s just so crushing. i’m so sick of it and I just want to be more independent but I don’t know how😩🥺 any suggestions, tips, words of encouragement, or ideas are greatly appreciated! thanks🥹 #ChronicDepression #ChronicIllness #HEDS

31 people are talking about this
Community Voices

Summer = more pain, injuries, and fatigue

So I’m in the process of getting a hEDS diagnosis and I’m looking to be tested for POTS soon as well.

Does anyone relate to the heat making their symptoms for these conditions worse? For me, I get more pain flares and more injuries like dislocations and sprains in the summer. I’ve had some bad dislocations the last few summers that left me bed ridden for a couple months. I also get fatigued and dizzy a lot faster and more often.

Do you have any tips for managing symptoms and preventing too many injuries in hot weather? #HEDS #POTS

11 people are talking about this
Community Voices

How to get POTs diagnosed

My doctors are ineffective, only follow Kaiser protocols which do not support patients with symptoms that fall outside that.

Collapsed twice yesterday-pretty sure I have POTs, but as usual uphill exhausting battle trying to get tested and treated. Went to ER because my autonomic nervous system keeps freaking out, and all tests negative (would not check for POTs of course-that would be to logical for a patient with EDS & chronic gastric issues).hEDs Pretty convinced now that Kaiser is EVIL & just about $$$ not patient care or welfare.

Any suggestions welcome-so far all I have is avoid heat, rest, increase fluids & electrolytes/salts.
#HEDS #POTS ?#Incompetentmedicalcare

12 people are talking about this
Community Voices

Oh lol

Cardiologist says I have tachycardia, so that's fun.
Also did a breath test and it turns out I have SIBO so I'm currently getting treated for that (icky tho).

They did an abdominal ultrasound that showed mild enlargement of my liver (benign so my doc isn't worried about it) and a small non-obstructive kidney stone.

It's been a while since I've been on antibiotics so I gotta ask - while I'm on antibiotics (doxycycline and flagyl), can I eat normally throughout the day (when my appetite exists)?

#sibo #Tachycardia #HEDS #antibiotics #questions

Community Voices

Four White Walls and Spoonie Things

I’ve been bedridden for 1 year 8 months and 9 days.
I’m on an indefinite pause while the world whirls past me.
It sucks not being a part of any of it. Being separated from everyone in the stale, dark, and yellowing rectangle room that I’ve memorized. While my friends, who have all moved on with their lives, eat, drink, and get married. (Pun intended).
I love them all so much. And still; I deleted all my social media accounts so I wouldn’t have to scroll through and be reminded of what I can’t have. At least for a time. It’s just too painful right now. (Plus I just downright do not have the energy whatsoever.) I wish I could confide in them about this but even they have told me that they don’t fully get it. (You know, my health stuff since I’ve gotten so sick). While watching a chronic illness tv show, it had a very apt quote which was about having a group of ppl who are sick go through the same thing, and other ppl, no matter how much they care will not fully get it unless it’s the same thing. So that’s why im here now. So Hi! Nice to meet you👋🏼 I’m Kay, a Spoonie like you. Sometimes I sleep 18-20 hrs a day because I’m up literally alll night long from severe pain, and simply because my body literally is dealing with 14+ diseases. And the elderly care home I’m at (despite the fact that I’m 25 yrs old) is not able to give me the care I really need to battle it. But im doing PT and trying to learn to walk again so I can be among the living again. I’m not sure what, how etc that will mean since this is my only place to live and I have no family to live with in the state, so it’s in Gods hands from here. Before I was bedridden I was a lab assistant and worked myself almost to the grave. I kept telling myself I wasn’t sick because I didn’t want to be. At the time I didn’t have any confirmed diagnosis’s other than Lyme and multiple forms of co infections so I felt like that wasn’t enough to stop working long and hard hours. I’ve always had 1-3 jobs and ALWAYS felt super terrible physically, I just told myself I was fine and pushed it down. I didn’t want to be sick, I wanted to live life.
Lol. Look how that turned out for me. 😂😆 YET, at the same time, I’ve learned a ton and although right now is an extra hard season, each season Jesus has taught me something, and always kept His promises to me. ♥️🤗
In closing, here’s the thing.
I don’t want to be on pause anymore. I’m doing my best to hit the reset button, but just as all you spoonies know, holy crap, does chronic illness kick butt. But keep going just like I am. (Not that I’m anything special). Don’t give up fellow spoonies. If I haven’t thrown in the spoons yet, after drs trying to literally kill me by illegal treatment, shaming me for losing my voice and saying I am faking it, refusing to read my text when it’s my only form of communication, and so SOOOOO much more that could fill a full series, and if other ppl, ppl I’ve read about and have endured much hardship can handle a lot, then so can you.
WE can. Together.
(You probably saw this the other day but I accidentally deleted it..technical difficulties😅.So here it is, again.😆💫✨)
#EhlersDanlos #EhlersDanlosSyndrome
#MastCellActivationDisorder #Viceralhyperalgeia #HypothyroidismUnderactiveThyroidDisease
#Fibromyalgia #raynaudssyndrome #TheBendyBunch
#hypermobileehlers-DanlosSyndrome(hEDS) #PainfulBladderSyndrome #ChronicPain

14 people are talking about this
Community Voices

Best Walker/Rollator for EDS

I've been having a lot of trouble walking without mobility aids recently. I have platform crutches that I use all the time and love, but they're a bit bulky. We have several weddings we're going to be traveling for in the near future. I'm thinking about getting a rollator, but I'm not really sure what to look for. Recommendations?

#Hypermobility #HEDS #EhlersDanlosSyndrome

2 people are talking about this
Community Voices

Mobility aids?

I’m struggling with deciding whether or not I should approach my parents about some kind of mobility aid. I have a school trip Tuesday/Wednesday and I don’t want to fixate on the pain and exhaustion. #MobilityAids #HSD #HEDS #ChronicPain

2 people are talking about this
Community Voices

TW: Self Harm

With chronic pain, I feel completely out of control. I have taken to biting the inside of my mouth because if I am cussing the pain, then I am in control of it. #HSD #HEDS #ChronicPain

2 people are talking about this
Community Voices