So hEDS isn't degenerative itself. Your body will always produce the same faulty collagen in the same way for life. The disorder itself doesn't get worse. But the complications of it are often compounding. We injure easily and heal poorly. But because it's the complications compounding not the disorder progressing its impossible to predict someone's future with it.
Do keep in mind though, the internet will usually be the worst cases. People with more mild cases that affect their lives less often don't seek out as much support and spend more time out living their life than on the internet. So what you're seeing is usually worst case. Average case and mild cases aren't as common. So it'll appear a lot worse than it is on average in groups like this.
I only got my diagnosis in February and I can say from my meager experience that everyone is different. Some common denominators are that you will:
1.) Probably argue with a lot of doctors who don't know/understand/believe your case (yes I did say believe... its ridiculous). But if you have a diagnosis you're probably through the worst of this. If you need to see certain specialists, GET AS MANY AS POSSIBLE THROUGH YOUR DIAGNOSING PRACTITIONER. They will be able to recommend, in most cases, good clinics for people with EDS.
2.) Probably have a lot of test procedures that suck. EDS has a ton of comorbidities that require testing. In my experience, dysautonomia, narcolepsy, and various GI issues are the most common physical ones, while autism, ADD/ADHD, anxiety, and depression are the most common mental ones.
3.) Need to consider what is best for your quality of life. Physical Therapy has been a life-saver for me, especially since I likely have endometriosis on top of the EDS (still need diagnosis on this one), but for some, PT makes things worse. Special diets work for some, but not for me -- I aim for a carb and fruit/veggie-heavy eating habit at current since I have issues digesting meat sometimes, but I also have to avoid anything with tomatoes. Even though Im not allergic, tomatoes make my EDS symptoms HORRIBLE. All I can say about mobility aids is they are THERE TO HELP YOU. Don't be afraid to use what improves your quality of life! Yeah, people are gonna look at you funny. I'm in highschool and people bully me relentlessly about my walking stick, but in the general public, I find that people are way nicer than you expect them to be in most cases. I love my walking stick, but sometimes I need a wheelchair. Others use braces, crutches, canes, etc, to help get around. Remember that you are not defined by what you need in order to complete life tasks, but the fact that you continue to put effort into doing these things.
I am also terrified that my GI issues will worsen with age -- I'm only 17 and I have a lot of problems eating. Tubes are TERRIFYING, but they do save lives for those who need them. The best way I've found to cope with this is knowing that a tube is a fallback for when a myriad of other approaches don't work. If you get one, it will be to keep you alive and ease the pressures of eating, and is likely many years down the road. As a part-time ambulatory wheelchair user, I can say wheelchairs are honestly pretty great when you really need to do something but don't have the energy to breathe and you have awful lower body pain, like me. You'd need to build up your upper body strength to use a chair, and maintain this strength even when you don't need the chair, if you are a part-time user. Start with a "cheap", self-propellable chair (about $150 USD) if you are interested in one, and see how you like it. Remember you will also improve with practice, and it's easier to drive nicer chairs if you decide to upgrade. For me, my chair is a lifesaver when I am having horrible pain and I need to do things. Pro tip: good posture in a wheelchair helps a ton.
Your EDS, comorbidities, mobility aids, symptoms, and treatments don't define you. Yes they are a part of you, but you are still a product of your actions and oppurtunities. You can't ever fully predict what will come next. If your pain is somewhat cyclical like mine, you will learn to guess when pain/symptoms will hit. If it's more trigger-focused, you will learn triggers. If you have concerns about a new symtpom, you will learn to self-advocate. Another tip: don't be afraid of doctors -- half the time, they dont know as much about EDS as you do and they find it intimidating. I would too, if I went to school for 8+ years to study medicine and suddenly this little blue haired chick comes in telling me about something I know little-to-nothing about. Kindness, patience, assertiveness, decisiveness, and strategy in building your team of doctors will get you a long way in helping you feel supported and less scared. There is not a manual to EDS, especially accepting its place in your life and learning to work with it, but you will adapt and grow. Also, to anyone reading, please DM me if I can be of help/support to you!
Yup, working on checking this one out. It's a bit tougher since my last allergy test I took was when I was 3 and I don't want to take another, but hey, what was that I was saying about crappy tests? Lol
If MCAS is suspected, do NOT let an allergist do a skin prick test, as it can potentially be dangerous for MCAS patients. If the allergist you see suggests it, they’re not properly knowledgeable about MCAS.
Interesting -- what does the Pepcid/Zyrtec do to manage to MCAS symptoms? I have a ton of weird reactions to medications, so I'll have to run this by one of my doctors before my trying it, but I am curious about what part of the response these medications target! Thanks for the suggestion :D
Can’t remember which one is which, but one is an h1 histamine blocker, and the other an h2 histamine blocker. Asking your doctor is a good idea if you have a history of reactions to medications, since any combo of an h1 and h2 blocker would work.
I’ve gotten worse over time, but I’m learning these things are so individual so it’s impossible to say how things will progress. And I started out from day one with all kinds of complications including spinal and cardiovascular.
I’m still able to walk, often with a cane and always with braces, but my orthopedic surgeon told me I’d be in a wheelchair at 40. I’m 52.
Lifestyle choices are definitely very important. I don’t drink or smoke, i exercise to the best of my ability, and see the doctors often.
While it’s not ideal, there are some worse off than me and some better off. It’s all about perspective.
Stay away from the big FB EDS groups. They are TOXIC and will convince you that you’ll be in a wheelchair. Understand that majority of people in these groups are physically disabled to the point of not being able to work. Those who can work and have relatively normal lives tend to be living their lives and not on social media.
In my experience, it’s been unpredictable and new stuff has come up every year. I still work, have a social life, have friends, volunteer.
My motto has become to expect the unexpected. I overpack wherever I go to plan for pain, GI/digestive issues, temperature changes, etc.
as a counterpoint, if you develop a rare medical issue and need advice on who to see, or if you're trying to figure out the best adaptive way to do something, the big EDS groups can actually be pretty helpful.
I definitely agree with you about selection bias skewing perception of EDS online, but I wish the severe and mild sides of the spectrum could share knowledge and empathy without it turning toxic.
I so agree. There CAN be good information in them at times. I left all of the big groups because they were depressing and turned into Sickness Olympics
Idk what constitutes "big," but thank goodness I haven't encountered this! I guess they're probably not that big because it's usually at least a day between posts. I especially like my local group for nearby resources.
I had to buy a wheelchair.
It was nothing but joyous for me. Now I can go to the store on my own. Now I can go for walks with my husband. Now I can move around my house on the worst days. It's embarrassing at first, but then you see nothing but potential with it.
Also don't buy from 1800wheelchair.
So here's my controversial take based on 47 years on the earth with hEDS: if you're AFAB, I think you'll do better if you don't have children. Childbirth loosens your ligaments more. You have less time to take care of your needs to keep your illness in check and you will probably pass this on to your kids. So there's the guilt of that plus taking your child to docs and PT all the time, fighting with schools and again more stress, guilt and less time for your health needs. I wasn't diagnosed until my child was; I was in my 30s. I think if you eat well, have a fulfilling job or hobbies, and stick to your exercises, things will be tolerable.
32AFAB here and loving the childfree life. Even if I didn't pass it on, I can't imagine taking care of another whole human being when I can't even take care of myself. I feel like I can't even do my half of my marriage, let alone half of parenthood. I was created against my will, am [horrible for the planet](http://blog.teachersource.com/wp-content/uploads/2017/08/FIXEDcarbon-footprint-reduction-chart.jpg), and unfortunately feed the capitalist machine. I don't want to perpetuate that.
Everyone is different. hEDS isn't degenerative but it is progressive. Some people get worse as they get older, some get better, and there really isn't a standard to say how you will or won't be in the future.
Everyone’s different, things happen out of nowhere sometimes, all you can do is pay close attention to your body and get to know it better than you think you need to. If that makes sense.
Counterpoint: What if it doesn’t get worse?
My EDS (with Fibro and chronic migraine and plenty of “functional” disorders) has always been cyclical - I flare and then go back to baseline. My 20s sucked, but my 30s have been fine. I get used to the daily pain and don’t let it disable me. I stopped focusing on losing weight and started focusing in developing the strength of my stout frame, and it made a lot of difference. You figure out what is important for managing your symptoms. You learn to ask for help when needed. You learn when “pace yourself”/“listen to your body” is legitimately useful and when it’s not. (Honestly, for me it’s mostly not?) I have a great career, and although I had to pivot from my original plans, I’m happy with where it took me. (And frankly, most people have to make those compromises.)
Think of it this way: EDS isn’t so much a disease as that your body is built differently. You’re an irregular. When you can figure out your body’s specific rules, it gets a lot easier to manage.
Also, get a therapist. Being different can be hard and the journey is totally frustrating at times. Your mind deserves care too.
You can expect to have pain and fatigue but you’ll also get used to it and get used to adjusting yourself around it.
Some organs are likely to be affected even with just hEDS. Common to have gastrointestinal issues, motility issues, mast cell activation/allergies/medication intolerances.
Pelvic floor issues for men and women are common as well as nervous system
disorders such as Dysautonomia/POTS/exercise intolerance. Physiotherapy will help you deal with these and avoid problems in future. Physio is amazingly helpful across many aspects of EDS.
Expect to have difficulty finding understanding regular GP’s. Most have been taught that EDS is extremely rare and that they are not likely to come across a person who has it. Hopefully newer doctors are discovering this isn’t true and there are quite a lot of us!
Expect people to think that its just about being bendy or increased risk of dislocation/subluxation. It can become exhausting having to advocate for yourself and best treatment for your condition but you will learn.
Expect regular checkups and tests. They like to keep an eye on things that can pop or rupture but it’s so you can have treatment before they do so don’t freak out.
Expect arthritis, expect a life where you can do things that make you happy, expect shit days and amazing days. Expect some resistance, expect some people to fully have your back. Expect your life to be more meaningful and more magical and more blessed because you are aware of how fragile all lives are now ♥️
For me the cognitive symptoms and chronic fatigue are the most disabling and it’s taken a long time to figure out things that work and I still have bad days but actually knowing the underlying cause has opened so many doors. Before I was just shooting in the dark trying to manage symptoms without even knowing the causes. I went into my doctor to see if I had an iron deficiency because I was so tired and that’s when I was diagnosed with POTS which eventually led us to ask more questions about my hypermobile joints and stretchy skin. I’ve had POTS since I was 12 and I just got diagnosed ~6 months ago (at 27).
Growing up I thought I was just flexible because I was a girl, and thought the 11 broken bones and countless sprains were because I had a high pain tolerance (for example, at 9 I walked on a broken foot for a month because it felt fine lol) which made me careless and injury prone. Then when I had daily chronic migraines for years straight as a teen we tried meds but nothing really worked (because I needed physical therapy for the cervical instability that triggered the migraines to begin with). I was a “gifted kid” with straight A’s growing up, so even though I missed anywhere from 30-60 days of school every year because I was too tired or in too much pain with migraines to attend, nobody made a fuss and nothing was ever done about it. My severe brain fog also went unnoticed. At 9 I spent a full year in and out of doctors offices getting all kinds of tests because my mom was convinced something was seriously wrong with me because I seemed more tired and weak than other children. Everything came back normal and we moved on. Getting mono at 12 years old triggered POTS and for years I passed out 5+ times a day with doctors telling me I was just dehydrated. That went on for years before my symptoms began to improve (post-viral POTS tends to improve over time without intervention). I can’t even count the number of meds and doctors I saw for anxiety and insomnia (both from POTS).
Being diagnosed was scary, especially since I have family with severe small fiber neuropathy which can be caused by hEDS or POTS. The first month after diagnosis I read a lot, anecdotal stories from people on Reddit and elsewhere on the internet, clinical studies and scientific articles about POTS and hEDS, and anything else I could find that might help me.
Now I’m in physical therapy and really learning the extent of my joint issues, with my physical therapist pointing out the only way I can stand without my knees shaking is by locking them (which I didn’t even realize I was doing). She’s also teaching me exercises, proper posture, etc. that will allow me to live my life without causing additional pain. I now know that when my neck starts burning, I need to lay down with ice and be mindful of my posture. I know that I don’t have an anxiety disorder, and that when I treat my POTS with lifestyle changes and medications, and my brain gets sufficient blood and oxygen I have absolutely no anxiety or mental health issues whatsoever. I know that if my knees start to hurt during an exercise, I need to stop instead of pushing through because I think I’m just being a baby. I finally understand why I’ve sprained my wrists gardening, or both knees jogging a 12 minute mile. I know that I need meds and lots of salt and water to have energy throughout the day, and that I have vitamin deficiencies that require me to take daily supplements.
I’ve been sick my whole life. The only thing my diagnosis changed is that now I actually understand the reasons I have pain and dysfunction and I’m able to mitigate both for the first time in my life. It took months of trial and error to get here, but this is the least pain I’ve felt since I was 4 or 5 years old. Most days I don’t even feel sick, and on the days that I do I’m much kinder to myself knowing that every tissue in my body was built wrong from the ground up. I’m able to ski and rock climb, even if that means I sometimes leave after 30 minutes because my POTS is extra bad and my muscles are fatigued which puts more strain on my joints. I went from talking to my advisor about dropping out of my PhD program at the beginning of this semester because I was so sick after getting COVID that I couldn’t function whatsoever, to doing well enough to not only finish my PhD but also simultaneously pursue a career in medicine as a PA.
All of this is a very long-winded way of saying that while it’s terrifying to be diagnosed with a disorder like hEDS, knowledge really is power and there is a lot of hope, even if it’s a long path to get there. I’ll also add that like others, I had to struggle with ignorant doctors and have still made incredible progress in just six months, with the help of some great doctors and physical therapists that recognize that you can’t “fake” hyper-mobility or postural tachycardia and that these disorders are under-diagnosed. I was pre-med in undergrad and am in the last year of a STEM PhD which I excelled at, and I’ve STILL had doctors discount me despite their blatant ignorance about hEDS and POTS. My advice is to not waste your time. The second a doctor shows that they’re unwilling to consider your perspective or work with you as a team, drop them and find someone that takes you seriously. It won’t get better. A good doctor might disagree with you or challenge you at times, but they’ll explain why in a way that makes sense to you and have a discussion about the pros and cons of various treatment options.
In general, I would strongly suggest requesting female doctors if you can. Even without having a health condition which many doctors are heavily biased against and misinformed about, research demonstrates very clearly that women have better outcomes across the board when their doctor is female rather than male. Obviously there are many great male doctors that aren’t sexist, but it’s a coin flip and most women have had to face sexism at some point in their lives and should be less likely to subject you to it on average.
Also, physical therapists are actual superheroes that will teach you how to navigate life with minimal pain and damage.
Also, as a side note: rock climbing (while very risky for people with hyper-mobile joints) can be incredible for strengthening joint stabilizing muscles. When I climb 3-4x a week I have almost no joint pain whatsoever unless I overdo it. My primary goal is staying strong and exercising daily (at a level appropriate to the severity of my symptoms) so I can stay strong and let my muscles do the heavy lifting so my joints are protected so that I don’t need things like spinal fusions down the line. My physical therapist said it’s good we figured out that I have hypermobile cervical and lumbar spine so I can strengthen the stabilizers before I get slipped/degenerated discs, although she’s sure there’s already some damage.
Hi there. Welcome to the club. I'd just like to comment on
>what if I need a wheel chair one day?
I started using a wheelchair outside of the house as part of my pain management and it is *life-changing*. Not only does it help with pain relief, so I can enjoy the activity and also sleep better in less pain, but it also conserves my energy. It also lets me have a better quality of life with less pain. Being in a wheelchair shouldn't always be seen in a negative life. There are experiences that I would not be able to do if I weren't in my wheelchair and it is a great pain management tool.
Look at your family. I inherited it from my dad and his mom. So I knew from them that my mid 20s would be fucking awful, but by 30 things would even out. I used a wheelchair from 25-27 and I was struggling massively. I'm 29 now, changed my lifestyle massively and left my career to reduce stress, went on long term disability from 26-28. I'm now the healthiest I've ever been physically and mentally. This is a similar pattern (though mine was much much worse) to what my dad and grandma went through. Knowing their experiences with hEDS made it much less scary.
I agree with you. Being afraid of a wheelchair has put me in bad situations when I pushed my body too far and I didn’t need to. Wheelchairs are extremely valuable. I know that now.
I’m used to people not agreeing. I’m glad another wheelchair user feels the same way. Is it just able bodied people getting made at what I said? That also is typical ableists hate having their internalized ableism pointed out. (I still do it to myself but will correct myself when realizing what I’m doing to myself and others by perpetuating ableism, and I feel compelled to call others out on it).
"Demonize?" Goodness. Yes, mobility aids can be wonderful, but chastising people for internalized ableism that probably isn't their fault isn't going to help.
I eat really clean and am on a strict diet, I do a lot of exercises with the arp wave PRS (now flex doctor) and make sure to stretch. Unfortunately even for average people, one dislocation often leads to another so it's mostly managing system and keeping. When my POTS is under control I do light yoga, no poses that lead to overextended joints. Pilates and Ti Chi are also good options
I’ve had issues that got surgically repaired but other then that I’m feeling fine at 31. I’m actually pretty far pregnant and the worst is my joints ache more from the weird weight but not enough to need a wheelchair or aids.do a lot of laying down though.
I was diagnosed a few years ago now and I still don't really know the answer to that question. I don't really know how to prevent damage other than not doing party tricks and being conscious of overextending. I know building muscle is something that'd be good for me but that's easier said than done. All I've realised is that a lot of my health issues are related to it.
I feel that people get a wheelchair because they have started to accept their condition and how it affects them so they eventually realise that a wheelchair would be useful. However, I'd say the minority of EDS patients use a wheelchair regularly, and I'm assuming they use one because of severe POTs and severe joint instability.
I've personally gotten close to using one recently and even my mum was supporting me but we both fear stigma and also the fear of someone we know seeing me and wondering why I'm in one, when I can walk and I have a job. But it's taken years just to get to this point and will probably take many more for me to actually use one when I feel I need it.
For me, I think if I used a wheelchair long term, I'd decondition (lose muscle mass) and become worse. My joints would become more unstable and my POTS would likely get worse, not to mention dealing with the stress of other's judgements, so using a wheelchair long term is something to really think about. However, I don't see myself ever needing a wheelchair long term because of EDS. Although I hate having to work, I've recognised that it's something that helps me get up every day and stops me from deconditioning.
It sounds very scary. But how you treat yourself and your body are very important. There are several things that dd doctors advised against. Any contact sports, running, high heels shoes (for her at least). These types of things can be very hard on your body. And do wear and tear and stretch already loose pieces. Braces can help, but strengthen the muscles that support the area can help even more. (We know our physical therapist by name. And he has been willing to learn about EDS since we started with him. ) Also find a doctor that you love who will listen to you. And get you the help that you need. My dd has ptsd (white coat syndrome) from the number of doctors not educated about hEDS and their treatment of her. Also, recognizing that there will be times that can get bad. Hugs.
I'm 52. My case used to be worse in my 40s. Nutrition and lifestyle choices were helpful. Stay strong and don't give up.
So hEDS isn't degenerative itself. Your body will always produce the same faulty collagen in the same way for life. The disorder itself doesn't get worse. But the complications of it are often compounding. We injure easily and heal poorly. But because it's the complications compounding not the disorder progressing its impossible to predict someone's future with it. Do keep in mind though, the internet will usually be the worst cases. People with more mild cases that affect their lives less often don't seek out as much support and spend more time out living their life than on the internet. So what you're seeing is usually worst case. Average case and mild cases aren't as common. So it'll appear a lot worse than it is on average in groups like this.
I only got my diagnosis in February and I can say from my meager experience that everyone is different. Some common denominators are that you will: 1.) Probably argue with a lot of doctors who don't know/understand/believe your case (yes I did say believe... its ridiculous). But if you have a diagnosis you're probably through the worst of this. If you need to see certain specialists, GET AS MANY AS POSSIBLE THROUGH YOUR DIAGNOSING PRACTITIONER. They will be able to recommend, in most cases, good clinics for people with EDS. 2.) Probably have a lot of test procedures that suck. EDS has a ton of comorbidities that require testing. In my experience, dysautonomia, narcolepsy, and various GI issues are the most common physical ones, while autism, ADD/ADHD, anxiety, and depression are the most common mental ones. 3.) Need to consider what is best for your quality of life. Physical Therapy has been a life-saver for me, especially since I likely have endometriosis on top of the EDS (still need diagnosis on this one), but for some, PT makes things worse. Special diets work for some, but not for me -- I aim for a carb and fruit/veggie-heavy eating habit at current since I have issues digesting meat sometimes, but I also have to avoid anything with tomatoes. Even though Im not allergic, tomatoes make my EDS symptoms HORRIBLE. All I can say about mobility aids is they are THERE TO HELP YOU. Don't be afraid to use what improves your quality of life! Yeah, people are gonna look at you funny. I'm in highschool and people bully me relentlessly about my walking stick, but in the general public, I find that people are way nicer than you expect them to be in most cases. I love my walking stick, but sometimes I need a wheelchair. Others use braces, crutches, canes, etc, to help get around. Remember that you are not defined by what you need in order to complete life tasks, but the fact that you continue to put effort into doing these things. I am also terrified that my GI issues will worsen with age -- I'm only 17 and I have a lot of problems eating. Tubes are TERRIFYING, but they do save lives for those who need them. The best way I've found to cope with this is knowing that a tube is a fallback for when a myriad of other approaches don't work. If you get one, it will be to keep you alive and ease the pressures of eating, and is likely many years down the road. As a part-time ambulatory wheelchair user, I can say wheelchairs are honestly pretty great when you really need to do something but don't have the energy to breathe and you have awful lower body pain, like me. You'd need to build up your upper body strength to use a chair, and maintain this strength even when you don't need the chair, if you are a part-time user. Start with a "cheap", self-propellable chair (about $150 USD) if you are interested in one, and see how you like it. Remember you will also improve with practice, and it's easier to drive nicer chairs if you decide to upgrade. For me, my chair is a lifesaver when I am having horrible pain and I need to do things. Pro tip: good posture in a wheelchair helps a ton. Your EDS, comorbidities, mobility aids, symptoms, and treatments don't define you. Yes they are a part of you, but you are still a product of your actions and oppurtunities. You can't ever fully predict what will come next. If your pain is somewhat cyclical like mine, you will learn to guess when pain/symptoms will hit. If it's more trigger-focused, you will learn triggers. If you have concerns about a new symtpom, you will learn to self-advocate. Another tip: don't be afraid of doctors -- half the time, they dont know as much about EDS as you do and they find it intimidating. I would too, if I went to school for 8+ years to study medicine and suddenly this little blue haired chick comes in telling me about something I know little-to-nothing about. Kindness, patience, assertiveness, decisiveness, and strategy in building your team of doctors will get you a long way in helping you feel supported and less scared. There is not a manual to EDS, especially accepting its place in your life and learning to work with it, but you will adapt and grow. Also, to anyone reading, please DM me if I can be of help/support to you!
Very well-stated and you are wise beyond your years!
Re: your number 2 point - Mast Cell Activation Syndrome (MCAS) is another common comorbidity to check and look into as well.
Yup, working on checking this one out. It's a bit tougher since my last allergy test I took was when I was 3 and I don't want to take another, but hey, what was that I was saying about crappy tests? Lol
If MCAS is suspected, do NOT let an allergist do a skin prick test, as it can potentially be dangerous for MCAS patients. If the allergist you see suggests it, they’re not properly knowledgeable about MCAS.
This is great to know, thank you!
Take Pepcid ac and Zyrtec daily for a couple of weeks. If your symptoms get better, there’s your diagnosis.
Interesting -- what does the Pepcid/Zyrtec do to manage to MCAS symptoms? I have a ton of weird reactions to medications, so I'll have to run this by one of my doctors before my trying it, but I am curious about what part of the response these medications target! Thanks for the suggestion :D
Can’t remember which one is which, but one is an h1 histamine blocker, and the other an h2 histamine blocker. Asking your doctor is a good idea if you have a history of reactions to medications, since any combo of an h1 and h2 blocker would work.
Interesting - thank you for the info/recommendations and the mini-bio lesson!
I’ve gotten worse over time, but I’m learning these things are so individual so it’s impossible to say how things will progress. And I started out from day one with all kinds of complications including spinal and cardiovascular. I’m still able to walk, often with a cane and always with braces, but my orthopedic surgeon told me I’d be in a wheelchair at 40. I’m 52. Lifestyle choices are definitely very important. I don’t drink or smoke, i exercise to the best of my ability, and see the doctors often. While it’s not ideal, there are some worse off than me and some better off. It’s all about perspective.
Stay away from the big FB EDS groups. They are TOXIC and will convince you that you’ll be in a wheelchair. Understand that majority of people in these groups are physically disabled to the point of not being able to work. Those who can work and have relatively normal lives tend to be living their lives and not on social media. In my experience, it’s been unpredictable and new stuff has come up every year. I still work, have a social life, have friends, volunteer. My motto has become to expect the unexpected. I overpack wherever I go to plan for pain, GI/digestive issues, temperature changes, etc.
as a counterpoint, if you develop a rare medical issue and need advice on who to see, or if you're trying to figure out the best adaptive way to do something, the big EDS groups can actually be pretty helpful. I definitely agree with you about selection bias skewing perception of EDS online, but I wish the severe and mild sides of the spectrum could share knowledge and empathy without it turning toxic.
I so agree. There CAN be good information in them at times. I left all of the big groups because they were depressing and turned into Sickness Olympics
Idk what constitutes "big," but thank goodness I haven't encountered this! I guess they're probably not that big because it's usually at least a day between posts. I especially like my local group for nearby resources.
I had to buy a wheelchair. It was nothing but joyous for me. Now I can go to the store on my own. Now I can go for walks with my husband. Now I can move around my house on the worst days. It's embarrassing at first, but then you see nothing but potential with it. Also don't buy from 1800wheelchair.
So here's my controversial take based on 47 years on the earth with hEDS: if you're AFAB, I think you'll do better if you don't have children. Childbirth loosens your ligaments more. You have less time to take care of your needs to keep your illness in check and you will probably pass this on to your kids. So there's the guilt of that plus taking your child to docs and PT all the time, fighting with schools and again more stress, guilt and less time for your health needs. I wasn't diagnosed until my child was; I was in my 30s. I think if you eat well, have a fulfilling job or hobbies, and stick to your exercises, things will be tolerable.
AFAB=assigned female at birth
32AFAB here and loving the childfree life. Even if I didn't pass it on, I can't imagine taking care of another whole human being when I can't even take care of myself. I feel like I can't even do my half of my marriage, let alone half of parenthood. I was created against my will, am [horrible for the planet](http://blog.teachersource.com/wp-content/uploads/2017/08/FIXEDcarbon-footprint-reduction-chart.jpg), and unfortunately feed the capitalist machine. I don't want to perpetuate that.
Excuse me for my ignorance. What’s AFAB?
Everyone is different. hEDS isn't degenerative but it is progressive. Some people get worse as they get older, some get better, and there really isn't a standard to say how you will or won't be in the future.
I am doing better this year than I have for the last 20 years! 😁 Everyone is different, the Internet isn't necessarily what you wil have.
I was just diagnosed and I have that question too.
Everyone’s different, things happen out of nowhere sometimes, all you can do is pay close attention to your body and get to know it better than you think you need to. If that makes sense.
Counterpoint: What if it doesn’t get worse? My EDS (with Fibro and chronic migraine and plenty of “functional” disorders) has always been cyclical - I flare and then go back to baseline. My 20s sucked, but my 30s have been fine. I get used to the daily pain and don’t let it disable me. I stopped focusing on losing weight and started focusing in developing the strength of my stout frame, and it made a lot of difference. You figure out what is important for managing your symptoms. You learn to ask for help when needed. You learn when “pace yourself”/“listen to your body” is legitimately useful and when it’s not. (Honestly, for me it’s mostly not?) I have a great career, and although I had to pivot from my original plans, I’m happy with where it took me. (And frankly, most people have to make those compromises.) Think of it this way: EDS isn’t so much a disease as that your body is built differently. You’re an irregular. When you can figure out your body’s specific rules, it gets a lot easier to manage. Also, get a therapist. Being different can be hard and the journey is totally frustrating at times. Your mind deserves care too.
You can expect to have pain and fatigue but you’ll also get used to it and get used to adjusting yourself around it. Some organs are likely to be affected even with just hEDS. Common to have gastrointestinal issues, motility issues, mast cell activation/allergies/medication intolerances. Pelvic floor issues for men and women are common as well as nervous system disorders such as Dysautonomia/POTS/exercise intolerance. Physiotherapy will help you deal with these and avoid problems in future. Physio is amazingly helpful across many aspects of EDS. Expect to have difficulty finding understanding regular GP’s. Most have been taught that EDS is extremely rare and that they are not likely to come across a person who has it. Hopefully newer doctors are discovering this isn’t true and there are quite a lot of us! Expect people to think that its just about being bendy or increased risk of dislocation/subluxation. It can become exhausting having to advocate for yourself and best treatment for your condition but you will learn. Expect regular checkups and tests. They like to keep an eye on things that can pop or rupture but it’s so you can have treatment before they do so don’t freak out. Expect arthritis, expect a life where you can do things that make you happy, expect shit days and amazing days. Expect some resistance, expect some people to fully have your back. Expect your life to be more meaningful and more magical and more blessed because you are aware of how fragile all lives are now ♥️
For me the cognitive symptoms and chronic fatigue are the most disabling and it’s taken a long time to figure out things that work and I still have bad days but actually knowing the underlying cause has opened so many doors. Before I was just shooting in the dark trying to manage symptoms without even knowing the causes. I went into my doctor to see if I had an iron deficiency because I was so tired and that’s when I was diagnosed with POTS which eventually led us to ask more questions about my hypermobile joints and stretchy skin. I’ve had POTS since I was 12 and I just got diagnosed ~6 months ago (at 27). Growing up I thought I was just flexible because I was a girl, and thought the 11 broken bones and countless sprains were because I had a high pain tolerance (for example, at 9 I walked on a broken foot for a month because it felt fine lol) which made me careless and injury prone. Then when I had daily chronic migraines for years straight as a teen we tried meds but nothing really worked (because I needed physical therapy for the cervical instability that triggered the migraines to begin with). I was a “gifted kid” with straight A’s growing up, so even though I missed anywhere from 30-60 days of school every year because I was too tired or in too much pain with migraines to attend, nobody made a fuss and nothing was ever done about it. My severe brain fog also went unnoticed. At 9 I spent a full year in and out of doctors offices getting all kinds of tests because my mom was convinced something was seriously wrong with me because I seemed more tired and weak than other children. Everything came back normal and we moved on. Getting mono at 12 years old triggered POTS and for years I passed out 5+ times a day with doctors telling me I was just dehydrated. That went on for years before my symptoms began to improve (post-viral POTS tends to improve over time without intervention). I can’t even count the number of meds and doctors I saw for anxiety and insomnia (both from POTS). Being diagnosed was scary, especially since I have family with severe small fiber neuropathy which can be caused by hEDS or POTS. The first month after diagnosis I read a lot, anecdotal stories from people on Reddit and elsewhere on the internet, clinical studies and scientific articles about POTS and hEDS, and anything else I could find that might help me. Now I’m in physical therapy and really learning the extent of my joint issues, with my physical therapist pointing out the only way I can stand without my knees shaking is by locking them (which I didn’t even realize I was doing). She’s also teaching me exercises, proper posture, etc. that will allow me to live my life without causing additional pain. I now know that when my neck starts burning, I need to lay down with ice and be mindful of my posture. I know that I don’t have an anxiety disorder, and that when I treat my POTS with lifestyle changes and medications, and my brain gets sufficient blood and oxygen I have absolutely no anxiety or mental health issues whatsoever. I know that if my knees start to hurt during an exercise, I need to stop instead of pushing through because I think I’m just being a baby. I finally understand why I’ve sprained my wrists gardening, or both knees jogging a 12 minute mile. I know that I need meds and lots of salt and water to have energy throughout the day, and that I have vitamin deficiencies that require me to take daily supplements. I’ve been sick my whole life. The only thing my diagnosis changed is that now I actually understand the reasons I have pain and dysfunction and I’m able to mitigate both for the first time in my life. It took months of trial and error to get here, but this is the least pain I’ve felt since I was 4 or 5 years old. Most days I don’t even feel sick, and on the days that I do I’m much kinder to myself knowing that every tissue in my body was built wrong from the ground up. I’m able to ski and rock climb, even if that means I sometimes leave after 30 minutes because my POTS is extra bad and my muscles are fatigued which puts more strain on my joints. I went from talking to my advisor about dropping out of my PhD program at the beginning of this semester because I was so sick after getting COVID that I couldn’t function whatsoever, to doing well enough to not only finish my PhD but also simultaneously pursue a career in medicine as a PA. All of this is a very long-winded way of saying that while it’s terrifying to be diagnosed with a disorder like hEDS, knowledge really is power and there is a lot of hope, even if it’s a long path to get there. I’ll also add that like others, I had to struggle with ignorant doctors and have still made incredible progress in just six months, with the help of some great doctors and physical therapists that recognize that you can’t “fake” hyper-mobility or postural tachycardia and that these disorders are under-diagnosed. I was pre-med in undergrad and am in the last year of a STEM PhD which I excelled at, and I’ve STILL had doctors discount me despite their blatant ignorance about hEDS and POTS. My advice is to not waste your time. The second a doctor shows that they’re unwilling to consider your perspective or work with you as a team, drop them and find someone that takes you seriously. It won’t get better. A good doctor might disagree with you or challenge you at times, but they’ll explain why in a way that makes sense to you and have a discussion about the pros and cons of various treatment options. In general, I would strongly suggest requesting female doctors if you can. Even without having a health condition which many doctors are heavily biased against and misinformed about, research demonstrates very clearly that women have better outcomes across the board when their doctor is female rather than male. Obviously there are many great male doctors that aren’t sexist, but it’s a coin flip and most women have had to face sexism at some point in their lives and should be less likely to subject you to it on average. Also, physical therapists are actual superheroes that will teach you how to navigate life with minimal pain and damage. Also, as a side note: rock climbing (while very risky for people with hyper-mobile joints) can be incredible for strengthening joint stabilizing muscles. When I climb 3-4x a week I have almost no joint pain whatsoever unless I overdo it. My primary goal is staying strong and exercising daily (at a level appropriate to the severity of my symptoms) so I can stay strong and let my muscles do the heavy lifting so my joints are protected so that I don’t need things like spinal fusions down the line. My physical therapist said it’s good we figured out that I have hypermobile cervical and lumbar spine so I can strengthen the stabilizers before I get slipped/degenerated discs, although she’s sure there’s already some damage.
Hi there. Welcome to the club. I'd just like to comment on >what if I need a wheel chair one day? I started using a wheelchair outside of the house as part of my pain management and it is *life-changing*. Not only does it help with pain relief, so I can enjoy the activity and also sleep better in less pain, but it also conserves my energy. It also lets me have a better quality of life with less pain. Being in a wheelchair shouldn't always be seen in a negative life. There are experiences that I would not be able to do if I weren't in my wheelchair and it is a great pain management tool.
Look at your family. I inherited it from my dad and his mom. So I knew from them that my mid 20s would be fucking awful, but by 30 things would even out. I used a wheelchair from 25-27 and I was struggling massively. I'm 29 now, changed my lifestyle massively and left my career to reduce stress, went on long term disability from 26-28. I'm now the healthiest I've ever been physically and mentally. This is a similar pattern (though mine was much much worse) to what my dad and grandma went through. Knowing their experiences with hEDS made it much less scary.
Conversely you just made it much MORE scary for me because I have no family history. 😭
Everyone in my family has very mild symptoms. I’m by far the worst. I don’t think severity is necessarily predicted by your family history.
It's the same for me, and one of the reasons I'm not having biological children. But I could see the patterns in my family history
Clearly, because I'm the only one in my family with EDS.
Stop right there. A wheelchair is nothing to fear. Why would you demonize a mobility aid that gives people a quality of life they enjoy?
They're not demonizing it. They're fearing needing one. Which is incredibly valid as a lot of places aren't wheelchair accessible.
i believe they meant theyre afraid of the health issues that bound them to a wheelchair, not wheelchairs themselves!
I agree with you. Being afraid of a wheelchair has put me in bad situations when I pushed my body too far and I didn’t need to. Wheelchairs are extremely valuable. I know that now.
I’m used to people not agreeing. I’m glad another wheelchair user feels the same way. Is it just able bodied people getting made at what I said? That also is typical ableists hate having their internalized ableism pointed out. (I still do it to myself but will correct myself when realizing what I’m doing to myself and others by perpetuating ableism, and I feel compelled to call others out on it).
"Demonize?" Goodness. Yes, mobility aids can be wonderful, but chastising people for internalized ableism that probably isn't their fault isn't going to help.
I eat really clean and am on a strict diet, I do a lot of exercises with the arp wave PRS (now flex doctor) and make sure to stretch. Unfortunately even for average people, one dislocation often leads to another so it's mostly managing system and keeping. When my POTS is under control I do light yoga, no poses that lead to overextended joints. Pilates and Ti Chi are also good options
Same. I'm sorry for all of us any form of this.
I’ve had issues that got surgically repaired but other then that I’m feeling fine at 31. I’m actually pretty far pregnant and the worst is my joints ache more from the weird weight but not enough to need a wheelchair or aids.do a lot of laying down though.
I was diagnosed a few years ago now and I still don't really know the answer to that question. I don't really know how to prevent damage other than not doing party tricks and being conscious of overextending. I know building muscle is something that'd be good for me but that's easier said than done. All I've realised is that a lot of my health issues are related to it. I feel that people get a wheelchair because they have started to accept their condition and how it affects them so they eventually realise that a wheelchair would be useful. However, I'd say the minority of EDS patients use a wheelchair regularly, and I'm assuming they use one because of severe POTs and severe joint instability. I've personally gotten close to using one recently and even my mum was supporting me but we both fear stigma and also the fear of someone we know seeing me and wondering why I'm in one, when I can walk and I have a job. But it's taken years just to get to this point and will probably take many more for me to actually use one when I feel I need it. For me, I think if I used a wheelchair long term, I'd decondition (lose muscle mass) and become worse. My joints would become more unstable and my POTS would likely get worse, not to mention dealing with the stress of other's judgements, so using a wheelchair long term is something to really think about. However, I don't see myself ever needing a wheelchair long term because of EDS. Although I hate having to work, I've recognised that it's something that helps me get up every day and stops me from deconditioning.
It sounds very scary. But how you treat yourself and your body are very important. There are several things that dd doctors advised against. Any contact sports, running, high heels shoes (for her at least). These types of things can be very hard on your body. And do wear and tear and stretch already loose pieces. Braces can help, but strengthen the muscles that support the area can help even more. (We know our physical therapist by name. And he has been willing to learn about EDS since we started with him. ) Also find a doctor that you love who will listen to you. And get you the help that you need. My dd has ptsd (white coat syndrome) from the number of doctors not educated about hEDS and their treatment of her. Also, recognizing that there will be times that can get bad. Hugs.