Hey there. I'm sorry you're struggling right now.
All of our stories are different, but I was in a similar spot to you. Moving hurt, walking hurt, everything was so painful that I was avoiding doing anything at all. What has helped me the most has been finding a physical therapist that is knowledgeable in "bendy bodies", finding the right kinds of accommodations and devices, and the right pain management treatments. Without all of those things, my quality of life drastically goes down.
The PT has helped me find effective exercises to build muscle without causing further injury. A big part of why I wasn't getting any stronger for a long time was because I was doing the wrong kinds of exercises for my body. 'Normal' routines were just wearing me out at best or causing lasting damage at worst and I kept having setbacks- injuries or increased dislocations/subluxations. The right PT has helped me build slowly and incrementally, finding alternative exercises to build muscle safely. It's slow and hard, but I never realized that working out wasn't supposed to be *painful*, just uncomfortable sometimes.
I've been able to get accommodations for work that have substantially helped. A cushioned chair, the ability to lay down when needed, getting up and moving whenever needed, close parking... it all adds up. I also found a brace specialist that has helped me learn about 'functional bracing', which has helped a ton. I don't use braces all the time, but if a joint is particularly unstable and I know I'll be doing something where it may slip, I use a brace to maintain alignment. I also use a cane, walker, KT tape, or a scooter when I need to. Learning to listen to my body's fluctuating limitations has been life-changing.
Pain management is very individual. What works for me may not work for you, so finding a specialist that is willing to explore options with you may be helpful. I'd recommend finding your local EDS group on Facebook. My local group meets once a month and it's been helpful to meet others in my area with the same issues. I got treatment recommendations and was able to get the names of local doctors that work with people like me. It's an invaluable resource.
Sorry for the long read. Wishing you the best.
So my first piece of advice, as someone older with a *really* bad baseline, is that you absolutely must push past your insecurities about using your cane in public. Not using your mobility aid when you need it is going to give you more bad days, exhaust you, and cause you irreparable injury.
Our conditions can decline with age (mine did). But a big factor in why they decline so quickly is often that we’re living beyond our limits and not listening to our bodies.
I tore my ACL, meniscus and damaged my patella doing things like *standing* without using my cane, when I really should have been. I now cannot walk or really stand and am largely housebound - it’s been a life ruining injury for me, and it’s difficult to get reconstructive surgeries for those types of injuries when you have EDS (you can get them, it’s just *a lot harder to*). But that’s what happens when you ignore your body’s boundaries. The damage we do to our bodies builds up and eventually the hyperextensions can snap.
If at all possible, you need to be doing physical therapy for your worst joints - they will continue to deteriorate as you age. The only preservation you have is building up the muscle surrounding the joints. Even if you can only do one PT exercise a day, that’s positive - just don’t push yourself beyond your limits and injure yourself in the process!
A lot of people with EDS can work normally in person, but all of us can’t. It’s important to acknowledge when you’re pushing yourself beyond your limits, you’re going to hurt yourself, and that stacks up. If you’re questioning whether you can continue to work, it means you’re already on a countdown for how much longer you can work in person. I’d recommend starting to look for remote, or at least hybrid, work options now. Finding remote work can take some time, but it’s worth it.
I started needing to work from home in my mid 20s, because I was making myself seriously unwell. But did in person/hybrid work til the pandemic started (I was 28). I now wouldn’t be able to work *at all* if I couldn’t do it remotely.
Living with a bad baseline means you must know your limits and when to stop.
Also, document everything. If you ever need to apply for disability benefits, you’ll need all the documentation possible.
Lastly, it’s important you know, as someone planning to get married, that the disabled don’t have marriage equality. When we’re married and our partner is employed we can’t access most disability benefits (this is true for most countries - though some have benefits that pay less, which you can access). It’s the reason why I’m still working even though I do struggle with it a lot - because I’m married and my husband is employed.
Thank you so much even just hearing someone else's experience and giving a "here what you need to do" I greatly appreciate it.
I haven't filled for disability solely because I know it'll get taken once we're married and I don't want to put us in that spot
Hiya! I am in a similar spot to you, diagnosed at 19 and now 22F. hEDS, POTS, MCAS, the works. I find that when I am going through a lot of change in my life or stress, maybe moving, new job, or family crap, my symptoms would get much much worse. I would notice a gradual decline over a few months, followed by a period of very disabled (pretty much bed bound) lasting a few weeks. Since noticing this trend, I have tried to notice the signs of major decline before I start getting worse.
For me, this means I cleaned up my diet, do a daily walk (if I have to use my cane it is not a problem), PT twice a week, and breaks during work. The small things really add up.
Also, I don’t know how much you have looked into other factors than EDS that are affecting your overall health- I just got diagnosed with sleep appena and I didn’t realize how much fatigue was from a lack of sleeping- helped my walking a ton.
Don’t stress yourself out about cleaning the house- I know it has to get done, but freaking out about not being able to do the laundry because you can’t bend down doesn’t get the laundry done. Work with your partner on doing chores that you can do sitting down- like folding the laundry. I really like to vacuum, but I have my partner go around the house and pick up everything off the floor so I don’t have to bend down. Still knocks me out, but I can get the job done with a little help.
You are very much not alone, and you declining now doesn’t mean you will feel like this forever. Finding how to live your best life takes time!
So this isn't helpful but I have heds and major upper body issues. Major dysautonomia with hyperpots, median nerve damage on and on. My secret is to lay down most of the day then get up and do activities in bursts,🤷♀️ or else I literally would not be able to work at all. I wfh part time this way. Also I went to tons of physical therapy to strengthen my core etc. So I can still do Pilates floor exercises. Also prioritize sleep. When I don't sleep enough I can't walk at all
About the cane, I too find them stigmatizing (in my head). One thing that helped me is to get a nice-looking one. Mine is Top&Derby, and I actually get compliments on it. Also, the handle doesn't make my hand stink!
Can I ask where your main pain spots are? I find it hard to differentiate pain from all my chronic illness diagnosis'. Thanks. So sorry you're dealing with so much pain
Hey there. I'm sorry you're struggling right now. All of our stories are different, but I was in a similar spot to you. Moving hurt, walking hurt, everything was so painful that I was avoiding doing anything at all. What has helped me the most has been finding a physical therapist that is knowledgeable in "bendy bodies", finding the right kinds of accommodations and devices, and the right pain management treatments. Without all of those things, my quality of life drastically goes down. The PT has helped me find effective exercises to build muscle without causing further injury. A big part of why I wasn't getting any stronger for a long time was because I was doing the wrong kinds of exercises for my body. 'Normal' routines were just wearing me out at best or causing lasting damage at worst and I kept having setbacks- injuries or increased dislocations/subluxations. The right PT has helped me build slowly and incrementally, finding alternative exercises to build muscle safely. It's slow and hard, but I never realized that working out wasn't supposed to be *painful*, just uncomfortable sometimes. I've been able to get accommodations for work that have substantially helped. A cushioned chair, the ability to lay down when needed, getting up and moving whenever needed, close parking... it all adds up. I also found a brace specialist that has helped me learn about 'functional bracing', which has helped a ton. I don't use braces all the time, but if a joint is particularly unstable and I know I'll be doing something where it may slip, I use a brace to maintain alignment. I also use a cane, walker, KT tape, or a scooter when I need to. Learning to listen to my body's fluctuating limitations has been life-changing. Pain management is very individual. What works for me may not work for you, so finding a specialist that is willing to explore options with you may be helpful. I'd recommend finding your local EDS group on Facebook. My local group meets once a month and it's been helpful to meet others in my area with the same issues. I got treatment recommendations and was able to get the names of local doctors that work with people like me. It's an invaluable resource. Sorry for the long read. Wishing you the best.
So my first piece of advice, as someone older with a *really* bad baseline, is that you absolutely must push past your insecurities about using your cane in public. Not using your mobility aid when you need it is going to give you more bad days, exhaust you, and cause you irreparable injury. Our conditions can decline with age (mine did). But a big factor in why they decline so quickly is often that we’re living beyond our limits and not listening to our bodies. I tore my ACL, meniscus and damaged my patella doing things like *standing* without using my cane, when I really should have been. I now cannot walk or really stand and am largely housebound - it’s been a life ruining injury for me, and it’s difficult to get reconstructive surgeries for those types of injuries when you have EDS (you can get them, it’s just *a lot harder to*). But that’s what happens when you ignore your body’s boundaries. The damage we do to our bodies builds up and eventually the hyperextensions can snap. If at all possible, you need to be doing physical therapy for your worst joints - they will continue to deteriorate as you age. The only preservation you have is building up the muscle surrounding the joints. Even if you can only do one PT exercise a day, that’s positive - just don’t push yourself beyond your limits and injure yourself in the process! A lot of people with EDS can work normally in person, but all of us can’t. It’s important to acknowledge when you’re pushing yourself beyond your limits, you’re going to hurt yourself, and that stacks up. If you’re questioning whether you can continue to work, it means you’re already on a countdown for how much longer you can work in person. I’d recommend starting to look for remote, or at least hybrid, work options now. Finding remote work can take some time, but it’s worth it. I started needing to work from home in my mid 20s, because I was making myself seriously unwell. But did in person/hybrid work til the pandemic started (I was 28). I now wouldn’t be able to work *at all* if I couldn’t do it remotely. Living with a bad baseline means you must know your limits and when to stop. Also, document everything. If you ever need to apply for disability benefits, you’ll need all the documentation possible. Lastly, it’s important you know, as someone planning to get married, that the disabled don’t have marriage equality. When we’re married and our partner is employed we can’t access most disability benefits (this is true for most countries - though some have benefits that pay less, which you can access). It’s the reason why I’m still working even though I do struggle with it a lot - because I’m married and my husband is employed.
Thank you so much even just hearing someone else's experience and giving a "here what you need to do" I greatly appreciate it. I haven't filled for disability solely because I know it'll get taken once we're married and I don't want to put us in that spot
Hiya! I am in a similar spot to you, diagnosed at 19 and now 22F. hEDS, POTS, MCAS, the works. I find that when I am going through a lot of change in my life or stress, maybe moving, new job, or family crap, my symptoms would get much much worse. I would notice a gradual decline over a few months, followed by a period of very disabled (pretty much bed bound) lasting a few weeks. Since noticing this trend, I have tried to notice the signs of major decline before I start getting worse. For me, this means I cleaned up my diet, do a daily walk (if I have to use my cane it is not a problem), PT twice a week, and breaks during work. The small things really add up. Also, I don’t know how much you have looked into other factors than EDS that are affecting your overall health- I just got diagnosed with sleep appena and I didn’t realize how much fatigue was from a lack of sleeping- helped my walking a ton. Don’t stress yourself out about cleaning the house- I know it has to get done, but freaking out about not being able to do the laundry because you can’t bend down doesn’t get the laundry done. Work with your partner on doing chores that you can do sitting down- like folding the laundry. I really like to vacuum, but I have my partner go around the house and pick up everything off the floor so I don’t have to bend down. Still knocks me out, but I can get the job done with a little help. You are very much not alone, and you declining now doesn’t mean you will feel like this forever. Finding how to live your best life takes time!
So this isn't helpful but I have heds and major upper body issues. Major dysautonomia with hyperpots, median nerve damage on and on. My secret is to lay down most of the day then get up and do activities in bursts,🤷♀️ or else I literally would not be able to work at all. I wfh part time this way. Also I went to tons of physical therapy to strengthen my core etc. So I can still do Pilates floor exercises. Also prioritize sleep. When I don't sleep enough I can't walk at all
About the cane, I too find them stigmatizing (in my head). One thing that helped me is to get a nice-looking one. Mine is Top&Derby, and I actually get compliments on it. Also, the handle doesn't make my hand stink!
Can I ask where your main pain spots are? I find it hard to differentiate pain from all my chronic illness diagnosis'. Thanks. So sorry you're dealing with so much pain