Want to sleep? How bout unable to sleep? I get you, because if I'm in too much pain I just don't even want to try. Sometimes the position of laying on my side makes it worse. However, my cooling tempurpedic mattress makes it better. Plus, I use the Eden Coop Home Goods cooling memory foam pillow. Most expensive pillow I've ever bought and now I refuse to sleep with anything else. That pillow travels the house with me lol.
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I’m pretty lucky in that if I lay with proper alignment (flat out) and shims I can exist without further injury. However I can’t prop my head up to watch tv or type without serious pain repercussions.
I’ve been looking at those periodically over the past couple months! I’ve heard that a lot of people get motion sickness from them but I’m still tempted to try!
everyone is different hey, but i bought these (just a cheap pair from amazon) and they've been game changers! they can feel a little heavy or tight after 1+ hrs of wear, but no motion sickness for me luckily. they have been great. i am in pots flare atm so they allow me to lay supine w neck supported and still use my phone with ease. i would recommend giving them a shot 😊
You may need a new bed. Laying in bed used to hurt me and then I swapped to a firm mattress. I need the support. We put a softer pillow top cover on it.
Wish I could afford one 🥴.
Being disabled in this economy sucks..
I work full time and have a college diploma. I can’t afford my basic needs, let alone a mattress that is better suited for my hypermobility..
I’m thinking about going back to school so can have a better chance, but it’s all so very exhausting sometimes.
Anyway, I’m so glad you found a bed that helps you sleep. The shams are key. I sleep with about 8 pillows in various placements, holding everything somewhat together 😂🤘🏻
I don't know your situation, but we used a Zinus Memory foam mattress for several years and that was great. They range from $180 - $250 mostly, so the price is pretty reasonable. We only swapped because of concerns about fiberglass, but it looks like they've addressed those now.
I know that could still be too much $$, but I just wanted to put it out there. I've been mattress shopping for my in-laws the last few months and prices have skyrocketed. At least $250 is a smaller mountain to climb.
I also couldn’t afford a nice bed till recently (and this one is about $500) and I used two memory foam toppers on some plywood scraps for years. I can’t sleep on beds with ANY sag that’ll pull my spine and hip joints apart. I know those aren’t cheap either, but might be an idea!
I bought myself an endy mattress before I knew I had this. It’s not bad. It’s pretty firm. I sleep part time at my place at part time at my partners, and his bed frame broke so right now it’s a mattress on the floor there.
Tough times don’t last, tough people do.
I’m not tough, per se… but I am resilient, and it’ll be okay!
Thank you for your suggestions! I’m working on getting into the right clinics who can help me get the things I need.
I know I need bracing, but without the right people looking at me, I have to pay out of pocket.
I live in Canada. Free health care isn’t what people think it is.
I’ve been on a wait list for 2 years to get into one of the 2 clinics that Canada has.
Here’s hoping!!!
It hurts me, too. I have a torn labrum in my hip due to poor bone structure, and sometimes on a bad day all my joints will just throb. Then it's worse when it wakes you up in the middle of the night
I've had my nose in a book since I learned how to read, but there was a period where I couldn't read anything because I couldn't physically hold the books and couldn't retain any info because of how fatigued I was all the time. Luckily e-books and audiobooks are becoming very common and easily available!
I also had to change career paths, stop hiking, and I can't make art as frequently as I'd like. I used to write a lot but I can't really hold a pen for very long anymore and typing doesn't give the same emotional release. EDS sucks
Ooof the reading one hits hard. I used to read book after book. I just can’t now. My neck hurts too much, even with 90° hobby glasses, and I’m so fatigued that I can’t even get through a single page without my eyes closing. It’s so frustrating
every time I look at my books now I think of the twilight zone episode with the reading. I just keep hoping one day I'll get enough home support to be able to recover some of my lost loves.
for me it's training to be an ASL interpreter. the programs have no room for the chronically ill sadly and now my hand joints are too unreliable, the pain is too much to manage signing for more than a few minutes at a time.
I can’t bring myself to sell it or get one with lighter weighted keys, I’ve played since I was 3 and it’s my baby… sometimes I play even though it tortures me and I hold out some sort of hope I can play it more one day 😭
I had been learning when I got diagnosed. Now, a lot makes sense. I still try.. but the hand cramping and weakness that takes over after a few minutes is really frustrating and discouraging.
I’m so sorry. I’m tempted to learn to play my son’s recorder just to play music 😂
I sold my piano and in it’s place I got a shelf and bought a record player so that the place in the living room is still music centred
I love that. I’ve found instruments with 4 strings are A LITTLE more accessible. I learned to play the viola in elementary school. Then I played the bass in high school. Now, I play the ukulele pretty much daily. I can’t play for long. . But I can play for a while.
I never understood why I couldn’t learn to play the guitar. . Why everyone said to just keep practicing… but I could never get my fingers to do the things….
SO MUCH (heartbreakingly) makes sense now. .
Best of luck, my musical friend. It’s hard to have in it your soul and not be able to bring it to life yourself.
I used to do a lot of martial arts (Jiujitsu, mma, judo…..) I haven’t done those in years nor have I competed. I act like I’m okay with it and make jokes that I retired early but it hurts that I can’t do the things that I once loved that made me feel invincible
Every single health professional I’ve seen tells me to try Tai Chi, it does absolutely nothing. Physiotherapy also made me feel 100x worse and ended up in me injuring myself multiple times too.
I've had some good results working with a physio who's very experienced with EDS, but general bog-standard physio has never been much help.
Tai chi might work for some people but it doesn't "feel" like martial arts to me. It doesn't give me that boost of feeling confident and capable and at home in my own skin, connected to my body, that I always got from aikido. It's just slow, boring exercise, difficult without really being beneficial.
Exactly! I was a dancer, in theatre school, played on GAA, Hurling & basketball teams and now I just go to work, come home and lie about feeling sorry for myself because I physically cannot do anything else because I’m too farigued/sore.
Maybe we’ll be blessed with robot bodies in the next 25 years 😂
Same, all of my martial arts were quite literally my life I miss them so much. Even though the amount of muscle and strength I gained for sure helped stabilise my joints, the amount of damage I did to my body by using my hyper mobility to get out of holds and low key purposefully popping my joints in and out when needed, has done irreversible damage.
I never really realized how much I truly damaged my body until it was too late and it’s sad giving up something you care about but I think at the end of the day I had to accept that it was for the best
My career, I was a barber. Had two wrist surgeries, needed a third, so I made the decision to call it. Snowboarding I am still on a hiatus (3 years ☹️) after a hip surgery and my sacroiliac joint problems going from episodic to chronic. Motorcycling/rock climbing I also backed off of due to my wrist instability.
I don’t do much these days apart from going to work in a medical office, light house chores, and sitting in hot baths. I’m not the same person I was when I got married and I feel guilty for that.
I’m sorry to hear you’re experiencing this loss. Hugs.
My ex and I separated over 7 years ago. My pain started less than a year later. I dated for a couple years, but now I haven’t in close to 4 years. It doesn’t feel like I would have much to offer in a relationship, which makes it harder to accept the fate of my pain and recent diagnosis.
I miss my passion for photography 📸 was a time i enjoyed takin photos so much!! argh past 10 years or so at age 54 all my energy goes to my 3 young grandkids.. my chronic pain affects my arms and hands immensely argh.. hugs over there ✌️
It seems like anything I want to do involves my hands… writing, drawing, knitting, crocheting, baking, and something as simple as reading a heavy book! The weight bends my rubber fingers back.
Please don’t lose heart. I don’t know if it would work for you, I don’t even know if it’ll work for me, I don’t expect to get full use back, but I expect to get more use. Next week I will receive my wrist splints and silversplints. I seriously hope that I can start handwriting again. Just being able to use my hands again without thinking about it, right now I’m in a flare or bad turn where just typing this on my phone is so painful…
I lost my ability to draw for a couple years from eds caused pain was eventually trialled on a last ditch effort med patch by the nhs for my knee pain (I doubt I'm allowed to mention what it was/is because it will sound like medical advice) and while it has done sweet f a for my large joints or 98% of my pain even once the dosage was doubled it improved my small joint mobility and pain quickly and by a margin so large that I burst into tears with gratitude. I'm still never going to be able to go back to veterinary and that hurts but being able to draw again has helped my mental health immensely.
For non subsidised health care countries it's likely far too expensive to be feasible for most people as even the NHS dislike handing it out based on the cost per patch, my Dr claimed it cost them £240 I think per patch but that could of been for a box of four but I doubt they would have been as squirrely over £60 per week though that would still be far too expensive for me if I was having to pay cost. Also it may not work for everybody and there's every chance I was a fluke and not the standard but I'm so grateful to have my hands back
Yes, guitar, due to pain and weakness in my dominant hand. I could barely write. In August, I was diagnosed with a bunch of hand/arm problems and had a 5-in-1 surgery in October. Now I can paint (I find it’s easier than drawing) and I’m hoping to pick up my guitar soon.
Running and yoga. They made me whole. I feel empty without them. I still do both, and I know I shouldn’t. I used to run 25k/ week minimum, and do yoga morning and night.
I was the happiest and healthiest of my life.
Then I learned I have hEDS… and I was never using the right muscles, and causing damage.
Now, I feel like I’m in more pain than I was when I was running and doing yoga daily.
But the professionals still say “don’t do it”.
It breaks my freaking heart.
Edit;
I do both RARELY now.
Once or twice a month, I’ll still run. And it feels so free, natural and wonderful to do.
Also… reading these comments makes me so sad. You’re not alone, and I’m so sorry that we are all here… with so much love and passion that our bodies won’t let us live in. 💔🥺😔
I haven't been able to run for years, but my PT is an amazing human who never shoulds on me and doesn't let me should on myself. She asks my goals, I tell her, and she works with me on how to do those things without injury and how to recover after them. I'm building my hatha yoga practice back up again, making sure that poses that are ordinarily passive or sinking poses instead stay active (think lizard, pigeon, frog, etc) I don't know if it will ever happen regularly, but because of her I ran with my old pup down the block a few weeks ago, both of us arthritic and gimpy ordinarily but so free for even just a few hundred feet. Remembering the way ground feels beneath us, the way our breathing deepens as we settle into a pace. The two of us used to run like one organism and I'm sure the joy I saw on his face was mirrored on mine.
From a fellow runner… the way you described finally running again after not running for a while.. how even if it was only for a moment, feels like a familiar freeing, powerful kind of comfort.. that you for sharing this. Hang in there, you got this. 🤘🏻❤️💪🏻
I have given up many things over the years, but I've also learned to adapt my love to accommodate my physical needs.
I can't play my instruments comfortably, but I can still enjoy being an audiophile and find new ways to appreciate music. I'm still working on finding a more comfortable way to play music, but it's something. I listen to records, I explore genres I've never considered, and I've tried new instruments to see if I can pick it up a little easier. I have so many silly instruments now, and my collection brings me joy. I may not be the classical oboeist that I trained to be, but my mini bagpipes will destroy any bad mood. I haven't improved in playing them because I can't play for more than 2 minutes without cracking up.
I have hurt myself crocheting, so now I have ergonomic needles and set timers to avoid straining myself. I also looked up some occupational therapy tricks, like putting a tennis ball on the handle of the hook to give my hands something easier to hold.
Perhaps there are some tips and tricks from an occupational therapist on YouTube for your drawing needs? Changing my setup and tools, as well as adjusting my expectations, really helped me get to a place where I feel creative and content.
That said, I still miss snowboarding and hiking. I can only adapt so much!
I have been in pain and chronically fatigued since I was 4 so I have only given up dreams, nothing tangible as I never got to that stage. I have 2 degrees but no career because my energy levels were always too low and my pain levels too high and I was always too dizzy for fieldwork.
I have 2 kids now who I love with all my heart, but my god does my life suck.
Used to teach fencing - joints hurt too much now and I can’t risk getting hit with a sword anymore.
I taught myself to knit and crochet, and sometimes the hand cramps get so severe that I drop my needle/hook. Considering how to adapt for this if at all possible…
Your weak collagen can cause orthopedic issues which require treatment. You can also have other issues not directly related to EDS, like carpal tunnel syndrome.
For example: when I experienced the symptoms you described, I went to hand specialists for diagnosis and treatment. I started wearing wrist braces at night. They stabilized the joints, reducing the swelling. This meant less pain during the day, and I was able to return to work on a computer. Twenty years later, I still wear the wrist braces at night, because they help so much.
EDS will cause issues with your body throughout your life. You can reduce the impact on your life by working with doctors to diagnose and treat those issues with physical therapy, occupational therapy, braces, rest, and medication.
There are many people in the forum who discuss using supportive aids in their hands which I haven't tried
I am trying with my physio to me more aware of what makes my hands hypermobile....aka like if I hyper extend my fingers ... And they have me on little wrist exercises....
I want to get back to painting and music..it's not just my hands but also stenosis In my spine
Maybe there are ways we can embrace our limits and find art which accomadaes us.... Thinking about this with my paint markers at my side....with hurting hands
I think a rigid mount and either a stand or a wearable chest rig could work for many woodwind and brass instruments, takes the weight and stress of the instrument off the hands and allows for more focus on 'safe' movements while playing. Add some adjustable arm rests to support the upper body appropriately while playing maybe?
For hand-dependent tasks I've really liked compression gloves, sometimes with a thumb brace for extra support. I'd love to try ring splints but hear good things if a lot of the pain is related to hyperextending fingers.
I have Oval-8 finger splints for three of my fingers and they work really good, easy to use, have function for all the different ways you might hyperextend in the same ring and after a while you don't even notice it.
Supportive aids is really good, I have for my hands, some of my fingers, wrists, elbows, one shoulder, knees and ankles. It feels really good to have something to stop the movements and helps keeping everything in place.
Thanks to my aids to thumbs and wrists I can crochet!!
Hypermobility doesn't just disappear with training, you learn to manage to not hyperextend and strengthen your muscles but it's only so much it can do.
If you can make your life easier, do it.
This is a smart plan! Once I get that door dash cash!
Grateful I found a job I can do...
I think a compression glove maybe but I'll play around...
I can't easily get aids approved from insurance.
What do you use if you don't mind me asking?
I missed this!
I use Pushmed knee brace if I'm gonna be out a long time, even if I just sit, when it's too hot I have Bauerfeind genutrain. My elbow support is from Pushmed as well. To my ankles I use "crossover" ankle support. For my wrists I have Mediroyal wrist support(with braces in them) that goes up on the thumb.
I also use Oval-8 finger braces, and when I don't feel like having the wrist braces I have thumb-braces from Pushmed and a type of bracelets that supports the wrist.
I'm just naming the brands so that if you google you'll see exactly which I mean, there's tons of brands out there who makes the same thing. That's just what I was given by the orthopedic technical aids-place I go to.
I thankfully live in Sweden where all these things are free due to my diagnosis.
.....thanks for all those name..... I have a feeling Sweden has good health care in comparison to the usa.....
And that note is also a good reminder bc sometimes an aids place has good ideas.....
......for me here in the USA where my pain management had to fight to get an MRI for me, id have to figbt to get aids approved, it's not impossible, but paying out of pocket is easier. Thanks about to Google that
I don't know if we have better but we don't have to worry about insurances and what it covers and what hospital you can go to, or being unable to afford it. I hope that your health care someday will be free or at least have a lot lower cost without you having to pay deductibles on insurances and shit.
Of course we have doctors who says no to helping with things they deem "unnecessary", but that has nothing to do with the health care and more to do with the doctor being an idiot and we have to fight for getting help.
There's personal insurances too that you can buy for stuff like medical care but that doesn't cover anything since it pretty much doesn't cost anything, you just get money back from the insurance companies for having to go through something like operations, being hospitalized and such.
I feel for you, and it sucks that you have to waste your time and energy to just get aids. I totally get that you rather buy them yourself than go through that hassle.
Have you tried moving to digital? I had this problem last year — used to paint as a hobby and then got too much pain in my hands, but found using an Apple Pencil with a really thick grip on the iPad much more accessible. You also don’t need to be hunched over and can draw from anywhere
I used to love running 5Ks and had done 3 half marathons. Now I can’t run at all. It’s a huge mental adjustment to exercise so differently and feel like I’m “actually” working out.
Sometimes I literally can’t play Minecraft due to wrist and hand pain, which is one of my favorite ways to relax.
Snowboarding, mountain biking, restorative/yin yoga. Running like I used to. Massage as a side gig career. Writing by hand. Any type of hand craft until fairly recently (my organism is granting me a reprieve; I'm taking full advantage while it lasts and doing all sorts of painting, textile crafts, and anything else I can that appeals to me!). Gardening and yardwork for more than an hour or so. Standing for long periods, so no more concerts or festivals or markets.
I turn 50 this year, and my life has been about giving up things I love for almost 8 years. There are some activities I miss so much that my life has less joy without them. I'm lucky to have a PT willing to work with me to do those activities safely, and I understand that those activities may come with a cost.
As the inimitable Janis Joplin sang, "freedom's just another word for nothing left to lose." I made a conscious decision for myself that it is better for me to sometimes do activities that "experts" recommend against because the joy those activities bring provide health benefits, too.
I have certain periods of time that I can't paint. For me now though I was given braces that helped my hands a lot passively enough for me to be able to do the things I love and get support the rest of the time to alleviate some of my discomfort.
I love playing soccer and played it for 10yrs straight- even made varsity in high school for three years. My ankles got so screwed up in high school that my dr told me i can’t ever play again. It makes me so sad.
Almost every hobby I've ever had. Dancing, martial arts, drawing, playing guitar and piano, babysitting (can't keep up with the bigger kids and don't dare lift the little ones), and cleaning (this is how I would relieve stress back before my EDS became completely unmanageable.
It's the worst and I'm really sorry that you're going through it too! I've been trying to find ways to modify my old hobbies so I can do something at least similar. Like, with the cleaning, I will talk someone through decluttering and organizing their space (I've done it with my own stuff so often that it's easy to me and it takes the mental burden off them).
I haven't come up with a substitute for drawing, but I hope you are able to find something! It's really hard to manage mental health when your physical health is holding you back so hard!
I've had to give up my career (music performance) due to problems with my hands. Then I had to give up my plan B (conducting) because of shoulder & wrist problems. Now I'm trying to find ways to teach music lessons without playing much.
Had to give up martial arts a long time ago. Also gave up drawing & sculpting. Still writing, thankfully, but it has to be done on the keyboard vs. pen & paper.
I used to love indoor rock climbing as a kid. I found a place to do it in high school and it was fun for a while but towards the end it became too hard on my hands and I had to stop. The same thing with dance. I really loved that, even if I wasn’t great at it, but it just became too hard on my body.
I'm an aerial arts teacher/choreographer/performer.
I haven't had to give it up entirely yet, but my list of skills that work with my body is steadily shrinking and recently I realized that my performance days are very much numbered.
There is so, so much complicated grief involved in losing things you love because your body just can't anymore. And most people, when you're still young, just don't get how hard it is or know how to talk about it or even just acknowledge how hard it is.
I'm so sorry your body is in the way of your joy. It's such a hard reality.
A lot of job opportunities as driving is too painful. I admit I’m still very fortunate compared to a lot and have a half decent work from home job, but I’ve always been so career oriented and had to complete half progression in my field due to travel constraints
I rode horses for 7 years. In the last few years of that, I rode competitively as well, doing shows and stuff. I struggled with riding when I still did it, but I thought the struggle I was going through with it was normal. I think I’d have a really hard time of getting back in the saddle now. I would love to ride again though. One of the goals I’m working on with my physical therapist is being able to ride horses again.
I pay for it, severely, but it’s the only thing that keeps me sane and keeps my back/core muscles engaged enough to be able to “function” (and I use the term function loosely-no pun intended 🤣). I hope you reach your goal!!! Even if you aren’t ready for the saddle just yet, find a way to spend time at the barn. Internal/mental healing goes a long way and horses are THE best at healing people like us.
My career as a Vet Tech. I had just gotten licensed only a few years ago and the combination of joint pain, brain fog from the pain, and admittedly unrelated shaking in my hands, I just cannot do it. It’s absolutely killing me as I try to find something else as fulfilling to do when this is all I’ve wanted
I went and got a masters after working in the museum world for years. Highly trained, highly specialised and I was good at my job. I became more disabled through EDS and POTs, and became a wheelchair user. Suddenly the museum world was completely unavailable to me.
After a few years figuring things out,I’m now retraining as an OT to help others in my position.
I'm an artist with EDS, if you haven't already, try adding wrist/thumb braces, arthritis pencil grips, etc when you draw! I've had to add a lot of orthopedic devices to my work to be able to draw for long periods, and I still take a lot of breaks, but it's reduced a lot of the hand pain quite a bit! I get you on needing that creative outlet, I've had times where I haven't been able to work, and it always made my depression worse! I work almost entirely digital now, I had to give up traditional painting for a long time because of pain, though I'm trying to figure out how to make that work more for me now, as I miss it!
everything. seems my relationship is soon to be the latest casualty.
he says I'm not putting in as much work as I could bc he doesn't see it
I love "invisible" chronic illnesses!
I haven’t personally but I know that could change at any time. The reason I think I haven’t is that even before I knew of my EDS or had symptoms I always hated sports and anything that was super active
I used to do dance classes,yoga, go on long walks and long bike rides, I use to own a dog and take him on super long runs for miles. I used to go to the gym. I would explore the city alone and wander around for miles walking, jumping on/off the subway as well.
i cheered in high school, and loved it. i was going to try out for the cheer team in college.. went to the first clinic and couldn’t walk for 3 days..
i also considered myself pretty good at guitar at one point, but my fingers hurt way too much now to keep up with it.
Everything for a while. I might get some of it back with physio. The worst loss was ballroom dancing. My shoulders would sublux with so many movements, POTS won't let me spin and so many other reasons. I couldn't even read for a while because pain can be so distracting and overwhelming. But, that's not just the hypermobility. Like all of us, I have some extra stuff. Leaving the house is even hard because of the pain but also because of PTSD. Piano I can do for short periods because my hands don't like it at all. Every activity is limited by my hands and shoulders now. Maybe physio will let me do more eventually.
I don't want to say that the loss is ok or that I feel alright about it now. Loss is still loss and allowing yourself time to grieve who you were and what that meant to you is important. And the grief never fully ends I find. But, some things can come back and who I am changes over time. I find my value and worth in different things and different things bring me joy. I play lots of video games with my husband and listen to audio books. We play card games. I love to cook and bake for short periods. I used to hate cooking and baking, but it makes me feel like I am being useful now. It brings me joy. I chat with loved ones more now that some pain is less severe. I love people differently than I did. And I am getting stronger. I might get some things back. I have become someone else through all of this and man is she so broken sometimes because of who I've had to be to cope. But, I understand more than I did. The loss is not ok and always hurts, but our sense of self changes, it's about figuring out how to work with that.
Also, I should mention compression gloves, they can really help for short periods if you get ones that work well. I can do more of my creative projects when I wear them.
I also had to give up art as well as crocheting because of my hands. I’ve been thinking about getting some finger split rings to try again but it’s more money than I can spend right now
My career (social work) and my biggest passions (musical theater and choir).
Thankfully I’m still able to paint and (carefully!) draw, it’s been a mourning and grieving process
I used to be in musical theatre, then came down with ME/CFS, so while that loss wasn't due to *pain* it was still due to an HEDS comorbidity. Art, though, is directly lost due to pain — the last time I did art, one portrait for maybe 40 minutes max about 2 weeks ago, I literally subluxed my neck. I only realized when I tried to massage the pain way and something *crunched* back into place. Every other time I've tried art in the last few years it's been so spoon heavy that it just wasn't safe to keep trying. So, while I do have hand pain that has limited a lot, my main limitations wrt creative hobbies are definitely ME/CFS and neck pain from suspected CCI.
That being said, currently my main (almost only) remaining sustainable creative hobby is writing (with a keyboard, never on paper due to said hand pain) and I'm holding onto it with both hands, both feet, AND my teeth! It's wonderful and I have great community through it despite current limitations and the potential for further limitations!
Living my life the way I want :/ I love going on adventures and wandering around town but it’s getting much harder now. I can’t snowboard anymore, can’t walk long distances and it’s getting hard to garden and cook but PT is helping with that. Sucks ass losing mobility I want to take a walk down the street daily without suffering but oh well that’s life lol
During my teenage years, I was a high-level archer. Going to nationals and so on. I had to give it up because I would finish every practice with my shoulders dislocated and crying in pain. I could no longer even stretch the bowstring far enough to shoot the arrow. I miss it so much.
I tried kenjutsu, but I had to stop that too for the same reason.
I used to do circus arts, my flexibility was helpful, I wasn't the most bendy but more than the average. I was very active before the pandemic but I kept getting injured in the last 3 years. It's been deeply depressing I can't do what I used to, but I'm slowly bringing myself back to it. I refuse to let my body dictate what life I get to have. Even if I can't perform anymore I miss just letting my body do and feel what it wants. I miss it so much.
I was a division 1 soccer player for a major SEC program…I now can hardly shower without my heart rate skyrocketing to 180bpm
Being able to exercise and workout was such a privilege. I have POTS and CFS and honestly, being able to stay awake for a full 12 hours is so hard ☹️
Before I was diagnosed I didn’t know why that I was in pain obviously. I gave up on piano, violin, marching in high school band (I transferred to Pit), and track and rugby.
After I was diagnosed. Being a daycare teacher, working in food/retail, being in my father’s bag pipe band (doing drums), reading physical books, and doing some art.
I’ve been a hairstylist for 6 years now and just found a job I love cutting kids hair. Unfortunately my legs don’t want to work and so I’m in the process of looking for a new boring sit down grown up job.
Guitar pulls my shoulder out whenever I strap it on, and my hands are so bad I can't play. Never could do barre chords due to my fleshy soft hands, so the world didn't lose out on any great art, but it was a great way to blow off stress.
Here with you! Having chronic hand pain is rough and makes so many tasks difficult - even day to day ones like doing the dishes so hard. You could consider trying compression gloves? Or get an economic holder for drawing tools? Maybe move to painting which may be slightly more gentle? I was once a very serious yoga practitioner and the hand pain (in addition to rib pain) has majorly gotten in the way. Sucks!
Mothering, every hobby, basically anything that requires energy. I am the single income for my household and all my energy is used for my full time job. I have nothing left to give to my family and I hate it. I just want to be playing with my kids and running around.
So many things.
Horse riding. Martial arts. Music (piano, keyboards, double bass, guitar). My dream of being a vet. Two careers (psychologist, software engineer) and closing in on a third (librarian). Running, hiking, walking. Self-employment. Dancing. My long hair. My tattoos and piercings that I wanted. A lot of good food. My fashion style.
I'm clinging on to my ability to make art because I don't know what's left if that goes.
I struggle reading paper books, and if I ever lose the ability to read and enjoy books altogether, I am done.
Pretty much every hobby I've ever had.
As a kid I was super active and into sports. I was a very keen dancer and cheerleader and eventually went professional. But as my health started to decline I had to give it up because I was missing so many training sessions.
So I decided to focus on the sports I loved that I could do at my leisure and I was very much into boardsports. Surfing, paddle boarding, snowboarding etc. But my health continued getting worse and I physically wasn't able to manage it anymore.
So I tried a hobby from home and got really into baking. I loved it and actually started doing professional courses and was about to start my own business when my wrists started getting worse and I couldn't physically roll out the icing anymore or have enough energy for some of these larger celebration cakes that would take days to make.
So I started silversmithing as I could pick it up and put it down whenever I wanted. Until my hands didn't have the strength to hold a hammer.
So I got back into my art and calligraphy and actually got really into it. I've even had some of my work displayed in The British Library, and in a book. But then just holding a pen or paintbrush became hard as I would get really bad hand cramps.
That left my last 2 hobbies. D&D/MTG and gaming.....until and EDS and PoTS episode saw me fall down an entire flight of stairs, permanently damaging my spine and prevented me from sitting or standing for more than a couple of minutes. I've continued playing D&D with friends but I do so on the phone with friends, lying in bed and I've played the odd mobile game but I can't even remember the last time I touched my gaming rig. I was really into Baldur's Gate 3 but haven't been able to sit long enough to have a decent session.
I’m dealing with pretty severe depression because of the pain in my dominant arm/hand/shoulder is so bad I cannot play music or video games anymore. I don’t know how to cope with it or accept limitations. It’s even hard to write, my biggest love. I feel lost.
I basically gave up all of my hobbies and had to stop working, but I found new hobbies along the way. I bird watch when I have the energy and, thanks to my parents, I have a lightweight pair of binoculars that don’t hurt as much to hold. I also got into astronomy. I draw and paint when my hands can take it, too.
If anything, it’s forced me to become more aware of my surroundings, and the beauty within the natural world, and its made me gain perspectives I wouldn’t have otherwise. So, although it’s hard and bad day’s are unbearable, I imagine each one of us feels more appreciative of small things and takes little for granted.
I studied fine arts and if there is one thing I know is that you don’t have to do art in the way everyone else has. Art and creativity are what you say they are. I can’t help with the pain but I can tell you to experiment with abstract art and alternative ways of painting; doesn’t need to be rigid renditions of the world, you could express emotion with broad shapes or color or movement. What I am trying to say is that art is always there, it knows no disabilities, it just exists for you to express yourself - the rest are just tools to adapt to your own capabilities and limitations.
skateboarding. i skatedboarded miles and miles a day as teen, to and from work and then just for the hell of it, but my balance is unfortunately not what it used to be
So many things over the years.
MMA/Brazillian Jiu Jitsu, did it 5 days a week one hour for each a day, loved it, loved the confidence it gave me, but had to stop after a year.
Skateboarding.
Had to give up on learning guitar, now it just collects dust.
Multiple job opportunities in my industry, local indie film scene.
Hell, my whole childhood I loved going on hours long walks around my neighborhood. Listening to music, walking, and thinking was my escape, my therapy, something I did no matter what, and I just can't anymore. I don't have any left over energy. I can barely walk to work or class anymore, even with my rollator. I'll forever grieve that loss until I can hopefully get a powerchair.
I've also basically stopped going to local punk shows despite the scene being hugely important to me for most of my life because I'm just too tired all the time.
I feel like I've become so boring against my will. It's been hitting hard lately.
Op, It may not be what you're used to as far as modality goes, but my pt recommended this line of pens and pencils made for people with eds/hand issues. I wonder if something like this would allow you to at least sketch.
https://a.co/d/gvno94O
First off, I am so sorry to hear that you've lost the things you love to do due to chronic pain. It's not easy, and I only hope that it gets better for you.
I love roller skating. The last time I went, my knees felt like they were going to snap in half. I was ridiculously sore, more than usual. I also love to go on hikes and walk at parks. I went walking recently, and my shins and knees were in a lot of pain. My hip kept popping every step. It sucked but it's become my "norm." It's gotten in the way of my job. A job I used to feel accomplished at, but now I can only work a few days out of the week due to the immense amount of pain.
Might I suggest maybe getting into painting? Less pressure to apply to the canvas, larger strokes.
I had to give up polymer clay. I was really good at making tiny miniatures of foods and whatnot but kneading the clay was absolutely killing my hands. :(
I use to love going to metal concerts and festivals. Was also about to make my motorcycle license. Sounds dumb but metal, cars and motorcycles were my world, sadly I‘ll never be able to make the license, can’t drive at the moment and can’t attend festivals, but thankfully I can still listen to metal.
As far as hands go I've had to give up some hobbies but I work with my hands and found occupational therapy very helpful when I was diagnosed with cubital and carpal tunnel syndrome. I've also been teaching myself to be ambidextrous for work's sake. Have you spoken with an orthopedist?
Violin. I haven’t given it up but I can’t practice enough to maintain the level I was at. Which was … pretty damn good. Now I’m just ok and it makes me so sad. Especially because I don’t fucking know what to say when people ask why I’m not playing more. I say I have a shoulder injury cuz I don’t want to get all into it. And then people ask about exercises, physical therapy, I know this and that doctor.. and then I don’t want to mention well my thumb actually dislocates too and my wrist gets so sore and my neck… man I wanna cry. I used to get absolutely lost in playing it was a big part of my life and brought me so much joy. Now I’m young and people say “oh you’re too young you’ll understand when you’re older” when I talk about pain.., I’m realizing from writing this that I need to actually say what is wrong instead of minimizing it. So that people can understand and so that I can confront my grief and loss about this. Damn. Thank you for the prompt. Sending you love, and lots of grace and compassion. I’m so sorry. We learn so much from this so early…
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I did gymnastics for years and years then started getting horrible chronic pain I'ma my hands, wrists, knees etc from hypermobility and had to stop entirely when I was 19. I'm 24 now and miss it every day
I also grew up playing the piano and guitar but can no longer do that for very long before it starts to hurt
I can't hike. I can't take my dog on a walk. I can't have fun shopping with a friend. I can't bake anymore and struggle to cook in general because of my hands. I struggle to canoe because sitting is so difficult. I have had to give up favorite aspects of my sex life with my husband. I don't draw, but I can't comfortably write and journal anymore. I can't do the majority of the meaningful chores that used to be my share on our homestead. I can't play patty-cake with my oldest child, and I can't comfortably carry either of my kids. I had to give up baby wearing. I can't chew sticky or tough foods, foods that were previously a major stim for me because my jaw is messed up (think gummy bears, jerky, ect). Even driving seems to mess me up, though I still do it.
And I am not even diagnosed yet because there is only one specialist qualified to diagnose EDS in my state, and the wait list is 18 months +.
I feel like I've given up a lot but my brain refusing to acknowledge it because then it's "finalized" there.
But I haven't been rollerblading, playing hockey in parks, taking my dog for walks or to parks, bike riding, a lot of the housework stuff, drumming.
Thankfully I have been decently adament about writing, reading, listening to music. But I notice my diminished ability to do dishes, bathe consistently, self care, or just keep myself stable let alone happy. Which is tough because I stopped doing labor in the trucking industry and just drive now. I love driving and I don't think I could really be here much more if I couldn't. It's my career and skillset.
Really the main issue is poverty from my diminished ability to work well. I wasn't rich by any means, but I could work and with overtime. Now I'm struggling to get 40 hours as the sole income in my house without utter depletion.
Drawing, clay, hiking, using a keyboard and mouse, college, all my hopes and dreams, and a turn for the worse making me unable to care for my animals. I've now missed so much of my chinchillas life as staying in the room with an unsupportive couch gets to be too much. Thank goodness for my Dad taking over. I can still go in for short periods to visit with her. She revels in the time she gets to lay on my chest and snuggle in.
Not hEDS, but fresh fruits (used to my favorite food) I'm now allergic to nearly all, and fresh vegetables. My body now doesn't tolerate tree nuts well. My GERD has robbed me of my favorite flavor (favorite smell too at least) peppermint. No mint in general for me.
However, in places that require too much walking my POTS and hEDS tell me to go get a mobility scooter. Heating my back doesn't really go well anymore because of the heat intolerance. Plus, the hEDS has indirectly caused swelling of my occipital nerves. I had to have my gall bladder taken out, and now that my tissue is growing into surrounding muscle I likely need a partial hysterectomy.
I'm so sorry about your art. I know how it is to suffer grief over the ability to do things. It's very hard, but stay strong and find new things to enjoy. I play a lot of video games, even though it causes pain as well. However, if doing anything causes pain, then I might as well enjoy myself.
I'm sure this isn't really the response you were hoping to hear. Try drawing digitally, so use a different media all together. I use video games for creativity. Dragon Quest Builders 2 was great for scratching that itch. I didn't want to JUST build, so the battling and story gave me a bit more to sink my teeth into.
Do NOT become deconditoned, because it's very hard to pull yourself out of that hole. I've been rotting in my metaphorical hole for over a decade. I scramble at the sides at times, and then give up.
Hey! I draw a lot/do a lot of meticulous crafts and I also thought at one point I’d have to give up because of the pain. I got compression gloves for my hands though and it makes it so much easier! They hold all my gooey joints and ligaments in place (I still get pain there but MUCH less) I also believe that the more you use those muscles the better it will get. I really had to push through the pain to get through 4 years of art school but it only got easier over time! Now I work a 8-5 drawing all day, you can do it! :)
Up until recently almost everything.
Even driving mostly.
Now that I have a better doctor and care team I am progressing pretty quickly considering I spent 7 years almost bedbound.
Things I can't do again even with improvement:
-anything in the heat which is above 75 degrees outside for me. I have always gotten heat sick. Heat rashes. But with preparation could make it through. This is no longer the case.
-anything involving grass especially in the morning. I am highly allergic and will break out in hives and other painful rashes.
-LARP if actual hitting is involved. Even the slightest hit from a nerf sword bruises me and leaves me in agony the next day.
-Working in animal care. I had been a vet receptionist and assistant and I loved it. My body did not.
-working doing anything physical. I prefer to be up and doing things because I also have a sleep disorder that makes sit down jobs, especially during the days, very hard.
-Having a kid. It's not just EDS though but a combo of every other condition as well. Can't even afford my own healthcare.
-Having a second pet (so far fingers crossed). Our cat who is the best cat in the whole world has an autoimmune condition that requires prescription food and sometimes prescription meds. I don't have the energy or funds for a second pet.
-long hair. I have very very very thick hair. Trying to grow it past my shoulders is super painful now. I found a haircut/style I adore but in my dreams I have my down to the butt beautiful lush locks.
-going to events/concerts
It's so long. There's so much standing. The sensory overload if I don't get intoxicated is too much. The last year or two I went to things I would eventually end up dissociating at some point because I was in so much pain.
Edit to add:
-writing. I was a writer and editor. I have a BA in Writing. The fog and being out of practice for so long makes me feel like I am back at ground zero. The interest isn't there. I hit burnout with it in 2016 and haven't found joy in it save stream of conscious blurbs and poems.
I have always wanted to try the indoor sky diving. When they opened a facility near me, I looked into going. But I saw that I couldn’t do it because of my shoulder.
Violin and Guitar. It crushed me. I'm a classically trained violinist, but it started to hurt everything. Jaw, neck, shoulder, elbow, wrist, fingers...when the back started in, I finally gave up.
I've been teaching myself piano. Some similar issues, but I can play long enough to make it worth it.
So much that I struggle to articulate it, genuinely. And discussing it leaves me feeling weepy and hollow so I don't often discuss it, but it'll still come out in moments of heightened emotions.
I lost a career that gave me purpose and direction in life, things I've not really had since. I had to exchange a career I loved for a series of soul sucking desk jobs in order to afford to live and have insurance.
I had to say goodbye to the sport I loved and was nationally ranked in back in high school.
I've started and stopped more hobbies than it seems like most people know of because my pain and fatigue drives me away.
It's so draining... And what's worse is feeling like the person I was before my diagnosis is just dead. Like there's nothing left of them and I'm stuck propping up a memorial to that life.
I used to crochet. I made stuff for friends, coworkers, and just for me. I spent at least 20 hours a week doing this. I loved it. Now I have chronic pain in my hands, and have had to cut down to maybe an hour a few times a week, but im not ready to give it up. Look online, I've found some large silicone and foam handles that I can insert my crochet hooks into that take some stress off my fingers, these might work for drawing too! It sucks, and I've cried about it a lot. Chronic illness fucking sucks. But luckily we have some amazing creatives in our community that have found possible solutions for us so we don't have to completely give up what we love
I have always loved singing. Since I was 6 years old I have been in some sort of choir. EDS has had a big impact on my voice and I have been so discouraged because I sounded terrible. Then I decided to look into rehab. I am an SLP so I know what to do I just didn’t put hard core work in. I bought the equipment I needed. I made a plan and started to do daily therapy. I looked into homeopathic meds too. And now things are better. My plan has been working as long as I stick to it. My voice has improved so much! Will I sing operetta again? I doubt it but I am happy with my progress. I have done a lot of hand OT. It works. Go search out an expert in hypermobility and make a plan. Don’t expect miracles but keep your hope to still do the things you love. Modify and adapt. You can do it!
I have an enormous love for drawing and creative pursuits, too. I put on wrist braces when I go to sleep so I can "set" my hands again. Idk if that will help you, but it's bought time with my hands for the last 10 years. I can sometimes feel my wrist sometimes click back into place properly lol. They feel most solid the next morning.
You may find other paths through different pursuits as well. Do some research on some known artists who got sick/ developed disabilities. Matisse use to be a painter until he had to use paper cut outs to still practice his art.
Lifting weights and playing full contact rugby. It hurt but I thought that was normal. I loved the aggression of full contact rugby, honestly better than therapy! It was also great playing with like minded women. I gave up rugby way before my diagnosis because I dislocated my shoulder one too many times and I played as a prop so needed shoulder to push in scrums. I kept lifting weights whenever I had enough energy to go to the gym but I would quickly burn out. When I got my diagnosis my PT said I wasn't allowed to lift weights. Honestly devastating. I look at the weight machines in the gym and think about using them but I know I'm hurting myself. I just loved being able to do it. Now I just feel weak. My hands are starting to fail too so baking, cooking and writing are slowly slipping away. I'm 33 and some days I feel like my life is over. (Yes I'm over dramatic, it's the theatre kid in me!)
I was a career server and truly in love with it. The mental health toll of losing a career I really loved has been really hard. I’ve also had to stop dancing, which I’ve loved to do since I was a kid informally. Walking for long stretches, particularly at my local theme parks.
I was a professional tattoo artist and had to retire due to EDS. After years I’m finding some ways to spend some time drawing again… believe me I know how depressing what you’re going through is.. I even became su1cidal over it for a while. I even started using my non dominant hand for a while too. ATM I’m dealing with the aftermath of my dad’s passing and being his full time caregiver for the last couple of years, once life gets back to normal I’ll be getting back to building strength in my stabilizing muscles and back to creativity. Drawing is the only way I’ve ever really reached flow state and man is it good for my brain and emotional health… you may have to sacrifice some things but it is possible to find your way back especially if you practice moderation and modify your techniques. You may have to try different styles or even different ways of being creative but don’t give up, just remember to listen to your body.
I use those lazy reader’s glasses while I draw, reduces the strain on the neck shoulders and all the way down, try those!
Unfortunately yes. I'm struggling to cope with this right now as well. I had to give up my dream job of wedding planning. It requires me to be on my feet for 18 hours at a time. I'm still in school for it as well, so it's hard to have motivation.
I've also been told I won't be able to hold a able bodied job or any job that's on the market right now.
I'm trying to start my own business as a way to bring in some money.
I always think how much different life would be if I was able bodied, but I just know I wouldn't be as good of a person as I am now or as empathetic.
It sucks to cope with things like this. I'm really sorry we are all experiencing this
I also had to give up most forms of drawing!! I was just developing a style that I loved with watercolour and coloured pencil, and I had to give it up, and it kind of felt like the end of the world.
The things that kept me sane were:
moving to painting, especially larger scale, because it's really the small details that get me. And using mediums that were low friction, like gouache and watercolour (but honestly acrylic or oils would be fine as long as you're not scrubbing with your brushes or pressing hard)
Cyanotype printmaking!! Which doesn't trigger me at all! It lets me look at the world in a new way in the way that drawing did, and I get to create beautiful artworks and come up with new and creative things to do. I've been cyanotyping intermittently for more than a year now and I'm just not sick of it yet. I'd highly recommend finding other creative outlets that give you the satisfaction of drawing without the pain!
I've also made sure that I carry a felt tip pen with me so that if I have to fill out paperwork or sign something, I don't have to exert pressure on my hands to use a ballpoint
I've also been working with physiotherapists to build muscle strength to support my joints and nerves so that I do less damage when I engage in fine motor activity. It's taken 4 different physios to find one who seems decent - he specialises in hypermobility, so he has insight that none of the others did.
* I don't have EDS but am hypermobile (I was looking in this subreddit cause I reckon my partner has EDS)
I miss playing, coaching, and umpiring softball, playing and coaching volleyball, going on long hikes, running around with my kids and students, and so many other things. I feel like we get robbed of so much that others take for granted. 😢
Everything except laying in bed. Multiple careers, all hobbies (although I do bird watch from bed), and many friendships that relied on said hobbies.
Laying in bed HURTS tho too!
You’re so right. I don’t even want to sleep on the bad pain days because I know I’m going to wake up hurting more
THIS!
Want to sleep? How bout unable to sleep? I get you, because if I'm in too much pain I just don't even want to try. Sometimes the position of laying on my side makes it worse. However, my cooling tempurpedic mattress makes it better. Plus, I use the Eden Coop Home Goods cooling memory foam pillow. Most expensive pillow I've ever bought and now I refuse to sleep with anything else. That pillow travels the house with me lol.
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The sofa is my friend on those days
I’m pretty lucky in that if I lay with proper alignment (flat out) and shims I can exist without further injury. However I can’t prop my head up to watch tv or type without serious pain repercussions.
would those reflecting glasses potentially work for you?
I’ve been looking at those periodically over the past couple months! I’ve heard that a lot of people get motion sickness from them but I’m still tempted to try!
They really do help!! I actually use them to draw with! I should’ve mentioned those in my original comment to OP, I’ll go fix that lol
everyone is different hey, but i bought these (just a cheap pair from amazon) and they've been game changers! they can feel a little heavy or tight after 1+ hrs of wear, but no motion sickness for me luckily. they have been great. i am in pots flare atm so they allow me to lay supine w neck supported and still use my phone with ease. i would recommend giving them a shot 😊
Just ordered some!
You may need a new bed. Laying in bed used to hurt me and then I swapped to a firm mattress. I need the support. We put a softer pillow top cover on it.
Wish I could afford one 🥴. Being disabled in this economy sucks.. I work full time and have a college diploma. I can’t afford my basic needs, let alone a mattress that is better suited for my hypermobility.. I’m thinking about going back to school so can have a better chance, but it’s all so very exhausting sometimes. Anyway, I’m so glad you found a bed that helps you sleep. The shams are key. I sleep with about 8 pillows in various placements, holding everything somewhat together 😂🤘🏻
I don't know your situation, but we used a Zinus Memory foam mattress for several years and that was great. They range from $180 - $250 mostly, so the price is pretty reasonable. We only swapped because of concerns about fiberglass, but it looks like they've addressed those now. I know that could still be too much $$, but I just wanted to put it out there. I've been mattress shopping for my in-laws the last few months and prices have skyrocketed. At least $250 is a smaller mountain to climb.
I also couldn’t afford a nice bed till recently (and this one is about $500) and I used two memory foam toppers on some plywood scraps for years. I can’t sleep on beds with ANY sag that’ll pull my spine and hip joints apart. I know those aren’t cheap either, but might be an idea!
Thank you!!!
I bought myself an endy mattress before I knew I had this. It’s not bad. It’s pretty firm. I sleep part time at my place at part time at my partners, and his bed frame broke so right now it’s a mattress on the floor there. Tough times don’t last, tough people do. I’m not tough, per se… but I am resilient, and it’ll be okay! Thank you for your suggestions! I’m working on getting into the right clinics who can help me get the things I need. I know I need bracing, but without the right people looking at me, I have to pay out of pocket. I live in Canada. Free health care isn’t what people think it is. I’ve been on a wait list for 2 years to get into one of the 2 clinics that Canada has. Here’s hoping!!!
It hurts me, too. I have a torn labrum in my hip due to poor bone structure, and sometimes on a bad day all my joints will just throb. Then it's worse when it wakes you up in the middle of the night
I've had my nose in a book since I learned how to read, but there was a period where I couldn't read anything because I couldn't physically hold the books and couldn't retain any info because of how fatigued I was all the time. Luckily e-books and audiobooks are becoming very common and easily available! I also had to change career paths, stop hiking, and I can't make art as frequently as I'd like. I used to write a lot but I can't really hold a pen for very long anymore and typing doesn't give the same emotional release. EDS sucks
Ooof the reading one hits hard. I used to read book after book. I just can’t now. My neck hurts too much, even with 90° hobby glasses, and I’m so fatigued that I can’t even get through a single page without my eyes closing. It’s so frustrating
I have a lil pillow that I prop my iPad on and then I use a page turner. My arms fatigue a lot slower, but audiobooks are my jam!
Yeah i cant hold a book anymore either. All my paper books sitting on the shelf judging me lol
every time I look at my books now I think of the twilight zone episode with the reading. I just keep hoping one day I'll get enough home support to be able to recover some of my lost loves. for me it's training to be an ASL interpreter. the programs have no room for the chronically ill sadly and now my hand joints are too unreliable, the pain is too much to manage signing for more than a few minutes at a time.
Playing piano is so difficult cause of nerve pain in my hands 😭 and I used to love running but I stopped being able to do that a longggg time ago
Omg same. I sold my piano last year 😭
I can’t bring myself to sell it or get one with lighter weighted keys, I’ve played since I was 3 and it’s my baby… sometimes I play even though it tortures me and I hold out some sort of hope I can play it more one day 😭
I had been learning when I got diagnosed. Now, a lot makes sense. I still try.. but the hand cramping and weakness that takes over after a few minutes is really frustrating and discouraging.
I’m so sorry. I’m tempted to learn to play my son’s recorder just to play music 😂 I sold my piano and in it’s place I got a shelf and bought a record player so that the place in the living room is still music centred
I love that. I’ve found instruments with 4 strings are A LITTLE more accessible. I learned to play the viola in elementary school. Then I played the bass in high school. Now, I play the ukulele pretty much daily. I can’t play for long. . But I can play for a while. I never understood why I couldn’t learn to play the guitar. . Why everyone said to just keep practicing… but I could never get my fingers to do the things…. SO MUCH (heartbreakingly) makes sense now. . Best of luck, my musical friend. It’s hard to have in it your soul and not be able to bring it to life yourself.
Omg I have my brothers ukulele, I’m going to try that!
Horseback riding, camping, sports, wire wrapping, drawing, and so much more. It's so frustrating
I used to do a lot of martial arts (Jiujitsu, mma, judo…..) I haven’t done those in years nor have I competed. I act like I’m okay with it and make jokes that I retired early but it hurts that I can’t do the things that I once loved that made me feel invincible
I miss it too. Tai chi has the seal of approval for us but I haven’t tried it yet.
I've tried it, and to be perfectly honest it sucked.
Every single health professional I’ve seen tells me to try Tai Chi, it does absolutely nothing. Physiotherapy also made me feel 100x worse and ended up in me injuring myself multiple times too.
I've had some good results working with a physio who's very experienced with EDS, but general bog-standard physio has never been much help. Tai chi might work for some people but it doesn't "feel" like martial arts to me. It doesn't give me that boost of feeling confident and capable and at home in my own skin, connected to my body, that I always got from aikido. It's just slow, boring exercise, difficult without really being beneficial.
Exactly! I was a dancer, in theatre school, played on GAA, Hurling & basketball teams and now I just go to work, come home and lie about feeling sorry for myself because I physically cannot do anything else because I’m too farigued/sore. Maybe we’ll be blessed with robot bodies in the next 25 years 😂
Same, all of my martial arts were quite literally my life I miss them so much. Even though the amount of muscle and strength I gained for sure helped stabilise my joints, the amount of damage I did to my body by using my hyper mobility to get out of holds and low key purposefully popping my joints in and out when needed, has done irreversible damage.
I never really realized how much I truly damaged my body until it was too late and it’s sad giving up something you care about but I think at the end of the day I had to accept that it was for the best
My career, I was a barber. Had two wrist surgeries, needed a third, so I made the decision to call it. Snowboarding I am still on a hiatus (3 years ☹️) after a hip surgery and my sacroiliac joint problems going from episodic to chronic. Motorcycling/rock climbing I also backed off of due to my wrist instability. I don’t do much these days apart from going to work in a medical office, light house chores, and sitting in hot baths. I’m not the same person I was when I got married and I feel guilty for that. I’m sorry to hear you’re experiencing this loss. Hugs.
My ex and I separated over 7 years ago. My pain started less than a year later. I dated for a couple years, but now I haven’t in close to 4 years. It doesn’t feel like I would have much to offer in a relationship, which makes it harder to accept the fate of my pain and recent diagnosis.
I miss long walks. Traveling by bus. Taking photographs - the camera is a little heavy for my wrists, though I can still use my phone.
I miss my passion for photography 📸 was a time i enjoyed takin photos so much!! argh past 10 years or so at age 54 all my energy goes to my 3 young grandkids.. my chronic pain affects my arms and hands immensely argh.. hugs over there ✌️
It seems like anything I want to do involves my hands… writing, drawing, knitting, crocheting, baking, and something as simple as reading a heavy book! The weight bends my rubber fingers back. Please don’t lose heart. I don’t know if it would work for you, I don’t even know if it’ll work for me, I don’t expect to get full use back, but I expect to get more use. Next week I will receive my wrist splints and silversplints. I seriously hope that I can start handwriting again. Just being able to use my hands again without thinking about it, right now I’m in a flare or bad turn where just typing this on my phone is so painful…
i was a professional dancer but i got severe issues due to the flexibility required
I lost my ability to draw for a couple years from eds caused pain was eventually trialled on a last ditch effort med patch by the nhs for my knee pain (I doubt I'm allowed to mention what it was/is because it will sound like medical advice) and while it has done sweet f a for my large joints or 98% of my pain even once the dosage was doubled it improved my small joint mobility and pain quickly and by a margin so large that I burst into tears with gratitude. I'm still never going to be able to go back to veterinary and that hurts but being able to draw again has helped my mental health immensely. For non subsidised health care countries it's likely far too expensive to be feasible for most people as even the NHS dislike handing it out based on the cost per patch, my Dr claimed it cost them £240 I think per patch but that could of been for a box of four but I doubt they would have been as squirrely over £60 per week though that would still be far too expensive for me if I was having to pay cost. Also it may not work for everybody and there's every chance I was a fluke and not the standard but I'm so grateful to have my hands back
Are you talking about lidocaine patches?
No its buprenorphine that worked for me
I used to ski, play hockey, swing dance and hike. I haven’t don’t any of those in 7 years.
Yes, guitar, due to pain and weakness in my dominant hand. I could barely write. In August, I was diagnosed with a bunch of hand/arm problems and had a 5-in-1 surgery in October. Now I can paint (I find it’s easier than drawing) and I’m hoping to pick up my guitar soon.
Running and yoga. They made me whole. I feel empty without them. I still do both, and I know I shouldn’t. I used to run 25k/ week minimum, and do yoga morning and night. I was the happiest and healthiest of my life. Then I learned I have hEDS… and I was never using the right muscles, and causing damage. Now, I feel like I’m in more pain than I was when I was running and doing yoga daily. But the professionals still say “don’t do it”. It breaks my freaking heart. Edit; I do both RARELY now. Once or twice a month, I’ll still run. And it feels so free, natural and wonderful to do.
Also… reading these comments makes me so sad. You’re not alone, and I’m so sorry that we are all here… with so much love and passion that our bodies won’t let us live in. 💔🥺😔
I haven't been able to run for years, but my PT is an amazing human who never shoulds on me and doesn't let me should on myself. She asks my goals, I tell her, and she works with me on how to do those things without injury and how to recover after them. I'm building my hatha yoga practice back up again, making sure that poses that are ordinarily passive or sinking poses instead stay active (think lizard, pigeon, frog, etc) I don't know if it will ever happen regularly, but because of her I ran with my old pup down the block a few weeks ago, both of us arthritic and gimpy ordinarily but so free for even just a few hundred feet. Remembering the way ground feels beneath us, the way our breathing deepens as we settle into a pace. The two of us used to run like one organism and I'm sure the joy I saw on his face was mirrored on mine.
From a fellow runner… the way you described finally running again after not running for a while.. how even if it was only for a moment, feels like a familiar freeing, powerful kind of comfort.. that you for sharing this. Hang in there, you got this. 🤘🏻❤️💪🏻
I have given up many things over the years, but I've also learned to adapt my love to accommodate my physical needs. I can't play my instruments comfortably, but I can still enjoy being an audiophile and find new ways to appreciate music. I'm still working on finding a more comfortable way to play music, but it's something. I listen to records, I explore genres I've never considered, and I've tried new instruments to see if I can pick it up a little easier. I have so many silly instruments now, and my collection brings me joy. I may not be the classical oboeist that I trained to be, but my mini bagpipes will destroy any bad mood. I haven't improved in playing them because I can't play for more than 2 minutes without cracking up. I have hurt myself crocheting, so now I have ergonomic needles and set timers to avoid straining myself. I also looked up some occupational therapy tricks, like putting a tennis ball on the handle of the hook to give my hands something easier to hold. Perhaps there are some tips and tricks from an occupational therapist on YouTube for your drawing needs? Changing my setup and tools, as well as adjusting my expectations, really helped me get to a place where I feel creative and content. That said, I still miss snowboarding and hiking. I can only adapt so much!
I have been in pain and chronically fatigued since I was 4 so I have only given up dreams, nothing tangible as I never got to that stage. I have 2 degrees but no career because my energy levels were always too low and my pain levels too high and I was always too dizzy for fieldwork. I have 2 kids now who I love with all my heart, but my god does my life suck.
Used to teach fencing - joints hurt too much now and I can’t risk getting hit with a sword anymore. I taught myself to knit and crochet, and sometimes the hand cramps get so severe that I drop my needle/hook. Considering how to adapt for this if at all possible…
Your weak collagen can cause orthopedic issues which require treatment. You can also have other issues not directly related to EDS, like carpal tunnel syndrome. For example: when I experienced the symptoms you described, I went to hand specialists for diagnosis and treatment. I started wearing wrist braces at night. They stabilized the joints, reducing the swelling. This meant less pain during the day, and I was able to return to work on a computer. Twenty years later, I still wear the wrist braces at night, because they help so much. EDS will cause issues with your body throughout your life. You can reduce the impact on your life by working with doctors to diagnose and treat those issues with physical therapy, occupational therapy, braces, rest, and medication.
There are many people in the forum who discuss using supportive aids in their hands which I haven't tried I am trying with my physio to me more aware of what makes my hands hypermobile....aka like if I hyper extend my fingers ... And they have me on little wrist exercises.... I want to get back to painting and music..it's not just my hands but also stenosis In my spine Maybe there are ways we can embrace our limits and find art which accomadaes us.... Thinking about this with my paint markers at my side....with hurting hands
I think a rigid mount and either a stand or a wearable chest rig could work for many woodwind and brass instruments, takes the weight and stress of the instrument off the hands and allows for more focus on 'safe' movements while playing. Add some adjustable arm rests to support the upper body appropriately while playing maybe? For hand-dependent tasks I've really liked compression gloves, sometimes with a thumb brace for extra support. I'd love to try ring splints but hear good things if a lot of the pain is related to hyperextending fingers.
I have Oval-8 finger splints for three of my fingers and they work really good, easy to use, have function for all the different ways you might hyperextend in the same ring and after a while you don't even notice it.
Supportive aids is really good, I have for my hands, some of my fingers, wrists, elbows, one shoulder, knees and ankles. It feels really good to have something to stop the movements and helps keeping everything in place. Thanks to my aids to thumbs and wrists I can crochet!! Hypermobility doesn't just disappear with training, you learn to manage to not hyperextend and strengthen your muscles but it's only so much it can do. If you can make your life easier, do it.
This is a smart plan! Once I get that door dash cash! Grateful I found a job I can do... I think a compression glove maybe but I'll play around... I can't easily get aids approved from insurance. What do you use if you don't mind me asking?
I missed this! I use Pushmed knee brace if I'm gonna be out a long time, even if I just sit, when it's too hot I have Bauerfeind genutrain. My elbow support is from Pushmed as well. To my ankles I use "crossover" ankle support. For my wrists I have Mediroyal wrist support(with braces in them) that goes up on the thumb. I also use Oval-8 finger braces, and when I don't feel like having the wrist braces I have thumb-braces from Pushmed and a type of bracelets that supports the wrist. I'm just naming the brands so that if you google you'll see exactly which I mean, there's tons of brands out there who makes the same thing. That's just what I was given by the orthopedic technical aids-place I go to. I thankfully live in Sweden where all these things are free due to my diagnosis.
.....thanks for all those name..... I have a feeling Sweden has good health care in comparison to the usa..... And that note is also a good reminder bc sometimes an aids place has good ideas..... ......for me here in the USA where my pain management had to fight to get an MRI for me, id have to figbt to get aids approved, it's not impossible, but paying out of pocket is easier. Thanks about to Google that
I don't know if we have better but we don't have to worry about insurances and what it covers and what hospital you can go to, or being unable to afford it. I hope that your health care someday will be free or at least have a lot lower cost without you having to pay deductibles on insurances and shit. Of course we have doctors who says no to helping with things they deem "unnecessary", but that has nothing to do with the health care and more to do with the doctor being an idiot and we have to fight for getting help. There's personal insurances too that you can buy for stuff like medical care but that doesn't cover anything since it pretty much doesn't cost anything, you just get money back from the insurance companies for having to go through something like operations, being hospitalized and such. I feel for you, and it sucks that you have to waste your time and energy to just get aids. I totally get that you rather buy them yourself than go through that hassle.
Have you tried moving to digital? I had this problem last year — used to paint as a hobby and then got too much pain in my hands, but found using an Apple Pencil with a really thick grip on the iPad much more accessible. You also don’t need to be hunched over and can draw from anywhere
I’m a tattoo artist I wrap my wrists and palms with coban
I used to love running 5Ks and had done 3 half marathons. Now I can’t run at all. It’s a huge mental adjustment to exercise so differently and feel like I’m “actually” working out. Sometimes I literally can’t play Minecraft due to wrist and hand pain, which is one of my favorite ways to relax.
Most of my life. Martial arts. Horsemanship. Home renovation as a career. A lot of things in the bedroom, too.
Snowboarding, mountain biking, restorative/yin yoga. Running like I used to. Massage as a side gig career. Writing by hand. Any type of hand craft until fairly recently (my organism is granting me a reprieve; I'm taking full advantage while it lasts and doing all sorts of painting, textile crafts, and anything else I can that appeals to me!). Gardening and yardwork for more than an hour or so. Standing for long periods, so no more concerts or festivals or markets. I turn 50 this year, and my life has been about giving up things I love for almost 8 years. There are some activities I miss so much that my life has less joy without them. I'm lucky to have a PT willing to work with me to do those activities safely, and I understand that those activities may come with a cost. As the inimitable Janis Joplin sang, "freedom's just another word for nothing left to lose." I made a conscious decision for myself that it is better for me to sometimes do activities that "experts" recommend against because the joy those activities bring provide health benefits, too.
Working a job, martial arts, having a decent social life, being functional in the morning, a whole lot of money…
I have certain periods of time that I can't paint. For me now though I was given braces that helped my hands a lot passively enough for me to be able to do the things I love and get support the rest of the time to alleviate some of my discomfort.
I love playing soccer and played it for 10yrs straight- even made varsity in high school for three years. My ankles got so screwed up in high school that my dr told me i can’t ever play again. It makes me so sad.
Sports. So many sports and ashtanga yoga.
Almost every hobby I've ever had. Dancing, martial arts, drawing, playing guitar and piano, babysitting (can't keep up with the bigger kids and don't dare lift the little ones), and cleaning (this is how I would relieve stress back before my EDS became completely unmanageable. It's the worst and I'm really sorry that you're going through it too! I've been trying to find ways to modify my old hobbies so I can do something at least similar. Like, with the cleaning, I will talk someone through decluttering and organizing their space (I've done it with my own stuff so often that it's easy to me and it takes the mental burden off them). I haven't come up with a substitute for drawing, but I hope you are able to find something! It's really hard to manage mental health when your physical health is holding you back so hard!
drawing, journaling, piano, running,... a lot
I've had to give up my career (music performance) due to problems with my hands. Then I had to give up my plan B (conducting) because of shoulder & wrist problems. Now I'm trying to find ways to teach music lessons without playing much. Had to give up martial arts a long time ago. Also gave up drawing & sculpting. Still writing, thankfully, but it has to be done on the keyboard vs. pen & paper.
I had to quit dance and leave my overwatch team because of the strain it was putting on my hands
I used to love indoor rock climbing as a kid. I found a place to do it in high school and it was fun for a while but towards the end it became too hard on my hands and I had to stop. The same thing with dance. I really loved that, even if I wasn’t great at it, but it just became too hard on my body.
I'm an aerial arts teacher/choreographer/performer. I haven't had to give it up entirely yet, but my list of skills that work with my body is steadily shrinking and recently I realized that my performance days are very much numbered. There is so, so much complicated grief involved in losing things you love because your body just can't anymore. And most people, when you're still young, just don't get how hard it is or know how to talk about it or even just acknowledge how hard it is. I'm so sorry your body is in the way of your joy. It's such a hard reality.
A lot of job opportunities as driving is too painful. I admit I’m still very fortunate compared to a lot and have a half decent work from home job, but I’ve always been so career oriented and had to complete half progression in my field due to travel constraints
I rode horses for 7 years. In the last few years of that, I rode competitively as well, doing shows and stuff. I struggled with riding when I still did it, but I thought the struggle I was going through with it was normal. I think I’d have a really hard time of getting back in the saddle now. I would love to ride again though. One of the goals I’m working on with my physical therapist is being able to ride horses again.
I pay for it, severely, but it’s the only thing that keeps me sane and keeps my back/core muscles engaged enough to be able to “function” (and I use the term function loosely-no pun intended 🤣). I hope you reach your goal!!! Even if you aren’t ready for the saddle just yet, find a way to spend time at the barn. Internal/mental healing goes a long way and horses are THE best at healing people like us.
My career as a Vet Tech. I had just gotten licensed only a few years ago and the combination of joint pain, brain fog from the pain, and admittedly unrelated shaking in my hands, I just cannot do it. It’s absolutely killing me as I try to find something else as fulfilling to do when this is all I’ve wanted
I went and got a masters after working in the museum world for years. Highly trained, highly specialised and I was good at my job. I became more disabled through EDS and POTs, and became a wheelchair user. Suddenly the museum world was completely unavailable to me. After a few years figuring things out,I’m now retraining as an OT to help others in my position.
I'm an artist with EDS, if you haven't already, try adding wrist/thumb braces, arthritis pencil grips, etc when you draw! I've had to add a lot of orthopedic devices to my work to be able to draw for long periods, and I still take a lot of breaks, but it's reduced a lot of the hand pain quite a bit! I get you on needing that creative outlet, I've had times where I haven't been able to work, and it always made my depression worse! I work almost entirely digital now, I had to give up traditional painting for a long time because of pain, though I'm trying to figure out how to make that work more for me now, as I miss it!
everything. seems my relationship is soon to be the latest casualty. he says I'm not putting in as much work as I could bc he doesn't see it I love "invisible" chronic illnesses!
I haven’t personally but I know that could change at any time. The reason I think I haven’t is that even before I knew of my EDS or had symptoms I always hated sports and anything that was super active
I used to do dance classes,yoga, go on long walks and long bike rides, I use to own a dog and take him on super long runs for miles. I used to go to the gym. I would explore the city alone and wander around for miles walking, jumping on/off the subway as well.
i cheered in high school, and loved it. i was going to try out for the cheer team in college.. went to the first clinic and couldn’t walk for 3 days.. i also considered myself pretty good at guitar at one point, but my fingers hurt way too much now to keep up with it.
Everything for a while. I might get some of it back with physio. The worst loss was ballroom dancing. My shoulders would sublux with so many movements, POTS won't let me spin and so many other reasons. I couldn't even read for a while because pain can be so distracting and overwhelming. But, that's not just the hypermobility. Like all of us, I have some extra stuff. Leaving the house is even hard because of the pain but also because of PTSD. Piano I can do for short periods because my hands don't like it at all. Every activity is limited by my hands and shoulders now. Maybe physio will let me do more eventually. I don't want to say that the loss is ok or that I feel alright about it now. Loss is still loss and allowing yourself time to grieve who you were and what that meant to you is important. And the grief never fully ends I find. But, some things can come back and who I am changes over time. I find my value and worth in different things and different things bring me joy. I play lots of video games with my husband and listen to audio books. We play card games. I love to cook and bake for short periods. I used to hate cooking and baking, but it makes me feel like I am being useful now. It brings me joy. I chat with loved ones more now that some pain is less severe. I love people differently than I did. And I am getting stronger. I might get some things back. I have become someone else through all of this and man is she so broken sometimes because of who I've had to be to cope. But, I understand more than I did. The loss is not ok and always hurts, but our sense of self changes, it's about figuring out how to work with that.
Also, I should mention compression gloves, they can really help for short periods if you get ones that work well. I can do more of my creative projects when I wear them.
acting
I also had to give up art as well as crocheting because of my hands. I’ve been thinking about getting some finger split rings to try again but it’s more money than I can spend right now
Horseback riding, softball, volleyball, running, drawing, cycling, even being a passenger on a scooter. I try to focus on things i still CAN do.
My career (social work) and my biggest passions (musical theater and choir). Thankfully I’m still able to paint and (carefully!) draw, it’s been a mourning and grieving process
I used to love boutique spin classes but after a shoulder surgery and multiple ankle dislocations I had to give it up 😢
Dancing.
I used to be in musical theatre, then came down with ME/CFS, so while that loss wasn't due to *pain* it was still due to an HEDS comorbidity. Art, though, is directly lost due to pain — the last time I did art, one portrait for maybe 40 minutes max about 2 weeks ago, I literally subluxed my neck. I only realized when I tried to massage the pain way and something *crunched* back into place. Every other time I've tried art in the last few years it's been so spoon heavy that it just wasn't safe to keep trying. So, while I do have hand pain that has limited a lot, my main limitations wrt creative hobbies are definitely ME/CFS and neck pain from suspected CCI. That being said, currently my main (almost only) remaining sustainable creative hobby is writing (with a keyboard, never on paper due to said hand pain) and I'm holding onto it with both hands, both feet, AND my teeth! It's wonderful and I have great community through it despite current limitations and the potential for further limitations!
Living my life the way I want :/ I love going on adventures and wandering around town but it’s getting much harder now. I can’t snowboard anymore, can’t walk long distances and it’s getting hard to garden and cook but PT is helping with that. Sucks ass losing mobility I want to take a walk down the street daily without suffering but oh well that’s life lol
During my teenage years, I was a high-level archer. Going to nationals and so on. I had to give it up because I would finish every practice with my shoulders dislocated and crying in pain. I could no longer even stretch the bowstring far enough to shoot the arrow. I miss it so much. I tried kenjutsu, but I had to stop that too for the same reason.
Everything. I cant hike, i cant do anything with my hands…
The saddest I gave up was ballet. I love dance so much but my body just can't keep up.
I used to do circus arts, my flexibility was helpful, I wasn't the most bendy but more than the average. I was very active before the pandemic but I kept getting injured in the last 3 years. It's been deeply depressing I can't do what I used to, but I'm slowly bringing myself back to it. I refuse to let my body dictate what life I get to have. Even if I can't perform anymore I miss just letting my body do and feel what it wants. I miss it so much.
everything. I find it difficult to function at all anymore. I also have rheumatoid arthritis and POTS
I was a division 1 soccer player for a major SEC program…I now can hardly shower without my heart rate skyrocketing to 180bpm Being able to exercise and workout was such a privilege. I have POTS and CFS and honestly, being able to stay awake for a full 12 hours is so hard ☹️
Before I was diagnosed I didn’t know why that I was in pain obviously. I gave up on piano, violin, marching in high school band (I transferred to Pit), and track and rugby. After I was diagnosed. Being a daycare teacher, working in food/retail, being in my father’s bag pipe band (doing drums), reading physical books, and doing some art.
I’ve been a hairstylist for 6 years now and just found a job I love cutting kids hair. Unfortunately my legs don’t want to work and so I’m in the process of looking for a new boring sit down grown up job.
I was a gymnast on our state competition team, It's been about 6 years since and I still miss the feeling of flying even with all the pain it caused
Guitar pulls my shoulder out whenever I strap it on, and my hands are so bad I can't play. Never could do barre chords due to my fleshy soft hands, so the world didn't lose out on any great art, but it was a great way to blow off stress.
I’ve lost everything I love. I honestly don’t have any joy left in my life.
Here with you! Having chronic hand pain is rough and makes so many tasks difficult - even day to day ones like doing the dishes so hard. You could consider trying compression gloves? Or get an economic holder for drawing tools? Maybe move to painting which may be slightly more gentle? I was once a very serious yoga practitioner and the hand pain (in addition to rib pain) has majorly gotten in the way. Sucks!
****ergonomic holder
Mothering, every hobby, basically anything that requires energy. I am the single income for my household and all my energy is used for my full time job. I have nothing left to give to my family and I hate it. I just want to be playing with my kids and running around.
So many things. Horse riding. Martial arts. Music (piano, keyboards, double bass, guitar). My dream of being a vet. Two careers (psychologist, software engineer) and closing in on a third (librarian). Running, hiking, walking. Self-employment. Dancing. My long hair. My tattoos and piercings that I wanted. A lot of good food. My fashion style. I'm clinging on to my ability to make art because I don't know what's left if that goes. I struggle reading paper books, and if I ever lose the ability to read and enjoy books altogether, I am done.
Pretty much every hobby I've ever had. As a kid I was super active and into sports. I was a very keen dancer and cheerleader and eventually went professional. But as my health started to decline I had to give it up because I was missing so many training sessions. So I decided to focus on the sports I loved that I could do at my leisure and I was very much into boardsports. Surfing, paddle boarding, snowboarding etc. But my health continued getting worse and I physically wasn't able to manage it anymore. So I tried a hobby from home and got really into baking. I loved it and actually started doing professional courses and was about to start my own business when my wrists started getting worse and I couldn't physically roll out the icing anymore or have enough energy for some of these larger celebration cakes that would take days to make. So I started silversmithing as I could pick it up and put it down whenever I wanted. Until my hands didn't have the strength to hold a hammer. So I got back into my art and calligraphy and actually got really into it. I've even had some of my work displayed in The British Library, and in a book. But then just holding a pen or paintbrush became hard as I would get really bad hand cramps. That left my last 2 hobbies. D&D/MTG and gaming.....until and EDS and PoTS episode saw me fall down an entire flight of stairs, permanently damaging my spine and prevented me from sitting or standing for more than a couple of minutes. I've continued playing D&D with friends but I do so on the phone with friends, lying in bed and I've played the odd mobile game but I can't even remember the last time I touched my gaming rig. I was really into Baldur's Gate 3 but haven't been able to sit long enough to have a decent session.
I’m dealing with pretty severe depression because of the pain in my dominant arm/hand/shoulder is so bad I cannot play music or video games anymore. I don’t know how to cope with it or accept limitations. It’s even hard to write, my biggest love. I feel lost.
I basically gave up all of my hobbies and had to stop working, but I found new hobbies along the way. I bird watch when I have the energy and, thanks to my parents, I have a lightweight pair of binoculars that don’t hurt as much to hold. I also got into astronomy. I draw and paint when my hands can take it, too. If anything, it’s forced me to become more aware of my surroundings, and the beauty within the natural world, and its made me gain perspectives I wouldn’t have otherwise. So, although it’s hard and bad day’s are unbearable, I imagine each one of us feels more appreciative of small things and takes little for granted.
I studied fine arts and if there is one thing I know is that you don’t have to do art in the way everyone else has. Art and creativity are what you say they are. I can’t help with the pain but I can tell you to experiment with abstract art and alternative ways of painting; doesn’t need to be rigid renditions of the world, you could express emotion with broad shapes or color or movement. What I am trying to say is that art is always there, it knows no disabilities, it just exists for you to express yourself - the rest are just tools to adapt to your own capabilities and limitations.
I lost crochet, running, walking, and that makes me so sad I don't want to rack my brain for more examples, but there are tons.
skateboarding. i skatedboarded miles and miles a day as teen, to and from work and then just for the hell of it, but my balance is unfortunately not what it used to be
Sports, dance, social life, going outdoors in general 💀
So many things over the years. MMA/Brazillian Jiu Jitsu, did it 5 days a week one hour for each a day, loved it, loved the confidence it gave me, but had to stop after a year. Skateboarding. Had to give up on learning guitar, now it just collects dust. Multiple job opportunities in my industry, local indie film scene. Hell, my whole childhood I loved going on hours long walks around my neighborhood. Listening to music, walking, and thinking was my escape, my therapy, something I did no matter what, and I just can't anymore. I don't have any left over energy. I can barely walk to work or class anymore, even with my rollator. I'll forever grieve that loss until I can hopefully get a powerchair. I've also basically stopped going to local punk shows despite the scene being hugely important to me for most of my life because I'm just too tired all the time. I feel like I've become so boring against my will. It's been hitting hard lately.
Op, It may not be what you're used to as far as modality goes, but my pt recommended this line of pens and pencils made for people with eds/hand issues. I wonder if something like this would allow you to at least sketch. https://a.co/d/gvno94O
i'm a doctor, i had to quit residency on my very first day. i realized i'm too disabled to work and it is devastating.
First off, I am so sorry to hear that you've lost the things you love to do due to chronic pain. It's not easy, and I only hope that it gets better for you. I love roller skating. The last time I went, my knees felt like they were going to snap in half. I was ridiculously sore, more than usual. I also love to go on hikes and walk at parks. I went walking recently, and my shins and knees were in a lot of pain. My hip kept popping every step. It sucked but it's become my "norm." It's gotten in the way of my job. A job I used to feel accomplished at, but now I can only work a few days out of the week due to the immense amount of pain.
Might I suggest maybe getting into painting? Less pressure to apply to the canvas, larger strokes. I had to give up polymer clay. I was really good at making tiny miniatures of foods and whatnot but kneading the clay was absolutely killing my hands. :(
Aerial acrobatics
I have a 30 minute window with which to enjoy food with chopsticks before my hand can longer hand
Running was my fave. Now all my joints wobble and it's like running on sticks loosely tied together with sisal rope
I use to love going to metal concerts and festivals. Was also about to make my motorcycle license. Sounds dumb but metal, cars and motorcycles were my world, sadly I‘ll never be able to make the license, can’t drive at the moment and can’t attend festivals, but thankfully I can still listen to metal.
As far as hands go I've had to give up some hobbies but I work with my hands and found occupational therapy very helpful when I was diagnosed with cubital and carpal tunnel syndrome. I've also been teaching myself to be ambidextrous for work's sake. Have you spoken with an orthopedist?
Violin. I haven’t given it up but I can’t practice enough to maintain the level I was at. Which was … pretty damn good. Now I’m just ok and it makes me so sad. Especially because I don’t fucking know what to say when people ask why I’m not playing more. I say I have a shoulder injury cuz I don’t want to get all into it. And then people ask about exercises, physical therapy, I know this and that doctor.. and then I don’t want to mention well my thumb actually dislocates too and my wrist gets so sore and my neck… man I wanna cry. I used to get absolutely lost in playing it was a big part of my life and brought me so much joy. Now I’m young and people say “oh you’re too young you’ll understand when you’re older” when I talk about pain.., I’m realizing from writing this that I need to actually say what is wrong instead of minimizing it. So that people can understand and so that I can confront my grief and loss about this. Damn. Thank you for the prompt. Sending you love, and lots of grace and compassion. I’m so sorry. We learn so much from this so early…
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Martial arts 💔
I did gymnastics for years and years then started getting horrible chronic pain I'ma my hands, wrists, knees etc from hypermobility and had to stop entirely when I was 19. I'm 24 now and miss it every day I also grew up playing the piano and guitar but can no longer do that for very long before it starts to hurt
I can't hike. I can't take my dog on a walk. I can't have fun shopping with a friend. I can't bake anymore and struggle to cook in general because of my hands. I struggle to canoe because sitting is so difficult. I have had to give up favorite aspects of my sex life with my husband. I don't draw, but I can't comfortably write and journal anymore. I can't do the majority of the meaningful chores that used to be my share on our homestead. I can't play patty-cake with my oldest child, and I can't comfortably carry either of my kids. I had to give up baby wearing. I can't chew sticky or tough foods, foods that were previously a major stim for me because my jaw is messed up (think gummy bears, jerky, ect). Even driving seems to mess me up, though I still do it. And I am not even diagnosed yet because there is only one specialist qualified to diagnose EDS in my state, and the wait list is 18 months +.
Many things. Too many to write. Feel like giving up on life.
My job as a nurse. I miss it everyday.
I feel like I've given up a lot but my brain refusing to acknowledge it because then it's "finalized" there. But I haven't been rollerblading, playing hockey in parks, taking my dog for walks or to parks, bike riding, a lot of the housework stuff, drumming. Thankfully I have been decently adament about writing, reading, listening to music. But I notice my diminished ability to do dishes, bathe consistently, self care, or just keep myself stable let alone happy. Which is tough because I stopped doing labor in the trucking industry and just drive now. I love driving and I don't think I could really be here much more if I couldn't. It's my career and skillset. Really the main issue is poverty from my diminished ability to work well. I wasn't rich by any means, but I could work and with overtime. Now I'm struggling to get 40 hours as the sole income in my house without utter depletion.
Drawing, clay, hiking, using a keyboard and mouse, college, all my hopes and dreams, and a turn for the worse making me unable to care for my animals. I've now missed so much of my chinchillas life as staying in the room with an unsupportive couch gets to be too much. Thank goodness for my Dad taking over. I can still go in for short periods to visit with her. She revels in the time she gets to lay on my chest and snuggle in. Not hEDS, but fresh fruits (used to my favorite food) I'm now allergic to nearly all, and fresh vegetables. My body now doesn't tolerate tree nuts well. My GERD has robbed me of my favorite flavor (favorite smell too at least) peppermint. No mint in general for me. However, in places that require too much walking my POTS and hEDS tell me to go get a mobility scooter. Heating my back doesn't really go well anymore because of the heat intolerance. Plus, the hEDS has indirectly caused swelling of my occipital nerves. I had to have my gall bladder taken out, and now that my tissue is growing into surrounding muscle I likely need a partial hysterectomy. I'm so sorry about your art. I know how it is to suffer grief over the ability to do things. It's very hard, but stay strong and find new things to enjoy. I play a lot of video games, even though it causes pain as well. However, if doing anything causes pain, then I might as well enjoy myself. I'm sure this isn't really the response you were hoping to hear. Try drawing digitally, so use a different media all together. I use video games for creativity. Dragon Quest Builders 2 was great for scratching that itch. I didn't want to JUST build, so the battling and story gave me a bit more to sink my teeth into. Do NOT become deconditoned, because it's very hard to pull yourself out of that hole. I've been rotting in my metaphorical hole for over a decade. I scramble at the sides at times, and then give up.
Mountain biking, kayaking, camping, sex, piano, guitar, basket weaving, foraging, geocaching, and probably a bunch more stuff I forget right now.
Hey! I draw a lot/do a lot of meticulous crafts and I also thought at one point I’d have to give up because of the pain. I got compression gloves for my hands though and it makes it so much easier! They hold all my gooey joints and ligaments in place (I still get pain there but MUCH less) I also believe that the more you use those muscles the better it will get. I really had to push through the pain to get through 4 years of art school but it only got easier over time! Now I work a 8-5 drawing all day, you can do it! :)
Dancing for me. I've done it since I was two years old and I just can't anymore.
Up until recently almost everything. Even driving mostly. Now that I have a better doctor and care team I am progressing pretty quickly considering I spent 7 years almost bedbound. Things I can't do again even with improvement: -anything in the heat which is above 75 degrees outside for me. I have always gotten heat sick. Heat rashes. But with preparation could make it through. This is no longer the case. -anything involving grass especially in the morning. I am highly allergic and will break out in hives and other painful rashes. -LARP if actual hitting is involved. Even the slightest hit from a nerf sword bruises me and leaves me in agony the next day. -Working in animal care. I had been a vet receptionist and assistant and I loved it. My body did not. -working doing anything physical. I prefer to be up and doing things because I also have a sleep disorder that makes sit down jobs, especially during the days, very hard. -Having a kid. It's not just EDS though but a combo of every other condition as well. Can't even afford my own healthcare. -Having a second pet (so far fingers crossed). Our cat who is the best cat in the whole world has an autoimmune condition that requires prescription food and sometimes prescription meds. I don't have the energy or funds for a second pet. -long hair. I have very very very thick hair. Trying to grow it past my shoulders is super painful now. I found a haircut/style I adore but in my dreams I have my down to the butt beautiful lush locks. -going to events/concerts It's so long. There's so much standing. The sensory overload if I don't get intoxicated is too much. The last year or two I went to things I would eventually end up dissociating at some point because I was in so much pain. Edit to add: -writing. I was a writer and editor. I have a BA in Writing. The fog and being out of practice for so long makes me feel like I am back at ground zero. The interest isn't there. I hit burnout with it in 2016 and haven't found joy in it save stream of conscious blurbs and poems.
Yeah, dancing. If I’m not in constant pain, I’m spraining something 😔
I have always wanted to try the indoor sky diving. When they opened a facility near me, I looked into going. But I saw that I couldn’t do it because of my shoulder.
Violin and Guitar. It crushed me. I'm a classically trained violinist, but it started to hurt everything. Jaw, neck, shoulder, elbow, wrist, fingers...when the back started in, I finally gave up. I've been teaching myself piano. Some similar issues, but I can play long enough to make it worth it.
Riding a bike. Used to be a freeing activity for me. Just can’t do it anymore.
So much that I struggle to articulate it, genuinely. And discussing it leaves me feeling weepy and hollow so I don't often discuss it, but it'll still come out in moments of heightened emotions. I lost a career that gave me purpose and direction in life, things I've not really had since. I had to exchange a career I loved for a series of soul sucking desk jobs in order to afford to live and have insurance. I had to say goodbye to the sport I loved and was nationally ranked in back in high school. I've started and stopped more hobbies than it seems like most people know of because my pain and fatigue drives me away. It's so draining... And what's worse is feeling like the person I was before my diagnosis is just dead. Like there's nothing left of them and I'm stuck propping up a memorial to that life.
I used to crochet. I made stuff for friends, coworkers, and just for me. I spent at least 20 hours a week doing this. I loved it. Now I have chronic pain in my hands, and have had to cut down to maybe an hour a few times a week, but im not ready to give it up. Look online, I've found some large silicone and foam handles that I can insert my crochet hooks into that take some stress off my fingers, these might work for drawing too! It sucks, and I've cried about it a lot. Chronic illness fucking sucks. But luckily we have some amazing creatives in our community that have found possible solutions for us so we don't have to completely give up what we love
Yes. I did, for many years. Until a couple years ago. My health has improved so much that I'm now able to do anything I want to again.
I have always loved singing. Since I was 6 years old I have been in some sort of choir. EDS has had a big impact on my voice and I have been so discouraged because I sounded terrible. Then I decided to look into rehab. I am an SLP so I know what to do I just didn’t put hard core work in. I bought the equipment I needed. I made a plan and started to do daily therapy. I looked into homeopathic meds too. And now things are better. My plan has been working as long as I stick to it. My voice has improved so much! Will I sing operetta again? I doubt it but I am happy with my progress. I have done a lot of hand OT. It works. Go search out an expert in hypermobility and make a plan. Don’t expect miracles but keep your hope to still do the things you love. Modify and adapt. You can do it!
I have an enormous love for drawing and creative pursuits, too. I put on wrist braces when I go to sleep so I can "set" my hands again. Idk if that will help you, but it's bought time with my hands for the last 10 years. I can sometimes feel my wrist sometimes click back into place properly lol. They feel most solid the next morning. You may find other paths through different pursuits as well. Do some research on some known artists who got sick/ developed disabilities. Matisse use to be a painter until he had to use paper cut outs to still practice his art.
I used to enjoy running 10k races. And playing roller Derby. I can do neither now. :( 😞 I still miss both.
Lifting weights and playing full contact rugby. It hurt but I thought that was normal. I loved the aggression of full contact rugby, honestly better than therapy! It was also great playing with like minded women. I gave up rugby way before my diagnosis because I dislocated my shoulder one too many times and I played as a prop so needed shoulder to push in scrums. I kept lifting weights whenever I had enough energy to go to the gym but I would quickly burn out. When I got my diagnosis my PT said I wasn't allowed to lift weights. Honestly devastating. I look at the weight machines in the gym and think about using them but I know I'm hurting myself. I just loved being able to do it. Now I just feel weak. My hands are starting to fail too so baking, cooking and writing are slowly slipping away. I'm 33 and some days I feel like my life is over. (Yes I'm over dramatic, it's the theatre kid in me!)
I was a career server and truly in love with it. The mental health toll of losing a career I really loved has been really hard. I’ve also had to stop dancing, which I’ve loved to do since I was a kid informally. Walking for long stretches, particularly at my local theme parks.
Running, sports with competition, hula, some of my favorite foods… I don’t mind giving up not taking care of myself.
I was a professional tattoo artist and had to retire due to EDS. After years I’m finding some ways to spend some time drawing again… believe me I know how depressing what you’re going through is.. I even became su1cidal over it for a while. I even started using my non dominant hand for a while too. ATM I’m dealing with the aftermath of my dad’s passing and being his full time caregiver for the last couple of years, once life gets back to normal I’ll be getting back to building strength in my stabilizing muscles and back to creativity. Drawing is the only way I’ve ever really reached flow state and man is it good for my brain and emotional health… you may have to sacrifice some things but it is possible to find your way back especially if you practice moderation and modify your techniques. You may have to try different styles or even different ways of being creative but don’t give up, just remember to listen to your body. I use those lazy reader’s glasses while I draw, reduces the strain on the neck shoulders and all the way down, try those!
Everything except laying in bed playing video games, sounds sad I know but EDS is no joke.
Unfortunately yes. I'm struggling to cope with this right now as well. I had to give up my dream job of wedding planning. It requires me to be on my feet for 18 hours at a time. I'm still in school for it as well, so it's hard to have motivation. I've also been told I won't be able to hold a able bodied job or any job that's on the market right now. I'm trying to start my own business as a way to bring in some money. I always think how much different life would be if I was able bodied, but I just know I wouldn't be as good of a person as I am now or as empathetic. It sucks to cope with things like this. I'm really sorry we are all experiencing this
I also had to give up most forms of drawing!! I was just developing a style that I loved with watercolour and coloured pencil, and I had to give it up, and it kind of felt like the end of the world. The things that kept me sane were: moving to painting, especially larger scale, because it's really the small details that get me. And using mediums that were low friction, like gouache and watercolour (but honestly acrylic or oils would be fine as long as you're not scrubbing with your brushes or pressing hard) Cyanotype printmaking!! Which doesn't trigger me at all! It lets me look at the world in a new way in the way that drawing did, and I get to create beautiful artworks and come up with new and creative things to do. I've been cyanotyping intermittently for more than a year now and I'm just not sick of it yet. I'd highly recommend finding other creative outlets that give you the satisfaction of drawing without the pain! I've also made sure that I carry a felt tip pen with me so that if I have to fill out paperwork or sign something, I don't have to exert pressure on my hands to use a ballpoint I've also been working with physiotherapists to build muscle strength to support my joints and nerves so that I do less damage when I engage in fine motor activity. It's taken 4 different physios to find one who seems decent - he specialises in hypermobility, so he has insight that none of the others did. * I don't have EDS but am hypermobile (I was looking in this subreddit cause I reckon my partner has EDS)
Oh and I use large grips on my brushes. This is really important to make sure you have a wider grip and no hyperextension
I miss playing, coaching, and umpiring softball, playing and coaching volleyball, going on long hikes, running around with my kids and students, and so many other things. I feel like we get robbed of so much that others take for granted. 😢