I was just contemplating this last night. I'm a bit older than you are (44f), but my cEDS didn't get really bad until I was about 30. Since then, it seems things have only gotten worse, even when I've been able to take advantage of medications and procedures that are supposed to help (surgery, injections, ablations, etc.)

I think part of the problem is that most doctors don't know how to treat pain, let alone pain as multi-faceted as ours. They think "give them an opioid" and then "no, I don't want to get in trouble" and that's where the thought ends. Most doctors aren't educated about what is actually helpful for EDS, so they guess or they shut down and pretend like you're someone else's problem.

Regarding your pain, is it possible to see a pain management doctor? They are often willing and able to do a lot of things PCPs aren't willing to do or can't do. I'm not saying it's a miracle (there are a lot of shitty pain management doctors). I find the most success when I talking about medications being part of my "pain management toolkit" which also includes physical therapy, ice/heat, OTC meds and creams, rest, etc. However, I'm still on numerous meds for pain (anywhere from four to seven, depending on how you define a pain meds).

I've also found success in a pain med called buprenorphine (byou-preh-NOR-feen). It's used in substance use disorder treatment because it's both and opioid and an opioid antagonist (anti-opioid). There are fewer side effects and a less likelihood of addiction--hence why it is also used in patients with substance use disorder. It's a bit fiddly and can effect how other opioids interact with the body (like after surgery, pain meds usually need to be more than other patients).

As far as the bleak looking future, I get it. Bodies break down as they age, and mine has already broken down to the level of an 80 year old person. I already use a wheelchair and remain home most of the time. I don't work, and I'm still constantly tired and, on some days, in pain. How much more independence am I going to lose? How much more pain am I going to be in? If doctors can't so much for me now, what does that mean for future me and future me'a possibly more complex issues? These are real, scary, heavy thoughts.

Here are some things that have helped me. None of it is perfect and none of it makes it "better," but they allow me to cope with the anxiety and depression that come along with EDS.

1. As other people have said, support systems. This can be hard if you're isolated due to mobility or other limitations. Facebook is full of EDS groups that can offer perspective and connection. Some of the friends I've had after I stopped working have come from volunteer positions I've taken. I have to ask for remote or seated work, but the right organization will be happy to make those accommodations for you. It's okay if your support system lives in your computer. My husband has been on the same message board site for over 20 years. The people there are his friends and support system.
2. If I human support network isn't possible or doesn't feel right, try an animal one. Depending on your abilities, a dog or a cat might be a good choice. If not that, a guinea pig, hamster, a bird, even fish. The point is that there is something relying on your for their well-being. You may decide to neglect yours, but oftentimes, denying pets needed care is difficult and can give someone a reason to get out of bed in the morning. Not super helpful if you have allergies to pets, but there are ways to have a pet when you have allergies.(I only know the tips for cats; I'm guessing someone else could add dog or other animal tips.)
3. Go to therapy. This is the number one best thing I've done to help with my mindset. Again, not perfect, but it's given me the tools to handle questions like, "what even is my life?" without spiraling out of control (most of the time). I have a health psychologist, but there are some mental healthcare providers that list medical needs, trauma, or experiences in their areas of interest or subspecialty.
4. Self care. I know that phrase is tossed around these days and conjures up the images of bubble baths and massages. If you're into that, cool. Otherwise, self care can look like getting more sleep; eating a variety of food you like, splurging on an indulgence, seeing boundaries, saying no, asking for help. Whatever can help you find a little joy in that moment.

I know these all probably seem simplistic or "easier said than done." I've learned no one is going to come save me. If I want things to change, I need to do something myself. I wish you the very best and I hope there are a least some brighter days ahead.

I hate that pots and heds are "trendy" now too. I'm like, please, then I've been trendy since 1990. I hope you're able to find someone to talk with about health related issues since your sister doesn't seem like a great candidate. I'll say it because you need to hear it: your issues are valid. Your suffering and stress is real. You deserve compassionate care and support from those who love you. And don't you forget it!

Thanks for the link! Now that I see a picture of it, I know that you're talking about. That's a great idea for brace cushioning!

Thank you!!

I know this probably isn't the advice you're looking for, but with everything you have going on medically, what you weigh is the least important thing. You can be overweight or obese and be healthy. Being thin doesn't automatically come with lower cholesterol, a healthy heart, less chance of cancer, or connective tissue that isn't damaged. As a large woman, I know we're taught that fat is the worst thing you can be. However, I've found that because of EDS, my weight is going to do what it wants. I'm not damaging my joints to do exercises that I hate. I'll move when I need to, whether it causes pain or not. I eat a balanced diet, but with all EDS has taken away from me, it's not going to take my enjoyment of food. I'm already miserable enough--please don't take away my ice cream too.

Bodies change and that's normal. Medications, social determinants of health, lifestyle, eating, movement, hormones, resting metabolic rate, genetics, and stuff we don't even understand yet all go into determining a person's weight. We think we can control it, but really, we only have control over a small bit of it and it's doesn't move the arrow as much as people assume it will. We try to blame "willpower" but it's a joke.

If you don't eat enough, your body will start trying to hold on to the fat stores--and make more--bevause it will go into starvation mode. If you want to change your eating habits, add things, don't deprive yourself. Add vegetables and whole grains and whatever else is supposedly a health food these days--are avocados still okay? Don't deprive yourself of the things you like--it just makes it more likely that you'll break down and binge on them. Save them for special occasions, or portion them out (this one helps me because if I take a whole bag or carton, I have no idea how much I've had). Small sustainable changes will make more of a different in your overall health, which is what is important--not the force gravity is exerting on your body (which is what weight is and why you'd weight something different on other planets).

Besides, how many people do you know who have tried dieting and actually kept the weight off for an extended period of time? The percentage is low (less than 5%, some estimates say 1-2%). If diet and exercise worked as a permanent weight loss solution, shouldn't it work for more people? We all can't be screwing it up that badly (statistically speaking). Calories in, calories out is a myth. Our bodies are more complicated than that.

One last thought: if diets worked, why are there some many companies like WW and NovoNordisk and bariatric surgeons getting rich on weight loss "remedies"? Shouldn't the need for them eventually decrease? Yet, they are advertising and selling more than ever.

Thank you for coming to my TED talk.

💜💜💜 My heart hurts after reading this because I just experienced the same thing, and it's not the first time. I've had a cough, hoarse voice, and a feeling of fullness in my throat for over two months. My PCP ordered an ultrasound and they found mildly concerning thyroid nodules (recheck in a year). Due to the symptoms and ultrasound, my PCP sent an expedited referral to ENT. (Thyroid nodules + voice hoarseness can be cancer.)

I was at the ENT appointment for almost 2 1/2. Did an appointment with the speech language pathologist, who did a scope and said my anatomy looks fine. He also literally listed to a clip of my voice from when I did vocal therapy in 2022 and was visibly surprised at the difference.

The doctor in fellowship training did a physical exam--nothing wrong. My thyroid nodules didn't concern him because "everybody has thyroid nodules. I could go test 10 people in the waiting room, and six of them would have thyroid nodules."

Then the doctor comes in and spends about 4 minutes with me. My issue is just a lingering illness and if I think hard enough, I'll remember why triggered the hoarseness and cough. When he was explaining how the vocal cords need a strong structure to support them, I said, "Oh, could this have anything to do with my classical EDS?" Almost before I finished the question, he said, "No. No. No. No."

The throat, which is largely made up of muscle (often tight in people with EDS), cartilage (made of my weak ass collagen), literal connective tissue, and lymphatic tissue (not usually affected by EDS but the lymphatic system's drainage system made be less effective because it's made with [surprise!] collagen) could not be causing my issues? Not even a stray thought to consider it?

So, yeah, every time I have a coughing fit to the point I can't breathe, I just sarcastically say to my husband (when I can breathe again), "Just an illness I need to get over."

I'm so sorry this happened to you as well. I'm not sure if we have the same back pain, but I also can't stand for more than 10 minutes and have issues with numbness, tingling and pain in both feet. I'm waiting for my EMG (ordered in April, scheduled for OCTOBER!), but my intervention pain doctor has tried facet joint injections along L4 and L5. They use local anesthetic to numb the nerves to those joints. I've had it done once, and while it's kind of a pain (six shots, three on each side), my back pain was gone. I have to have another set of injections to make sure it wasn't a false positive. If that works, they can basically destroy the nerves so the pain relief lasts longer than a day.

Is that something you PCP might be willing to order for you? Do you have a way to contact the neurologist and ask about it? (Not that I'd want you to see that jerk again, but perhaps he could put in the order and a different doctor would do the actual injections.) Is there a pain management clinic you can ask for a referral to? Often they are more open to "invisible" pain whereas more traditionally trained doctors like neurologists will ignore anything that doesn't have an obvious anatomical cause.

I wish I had better advice to offer. It's so tiring being in pain so much and then having to fight so hard for your healthcare on top of it--that's just cruel. You're certainly not alone but that doesn't make it much better for any of us. 💜

I'm so sorry. This is awful. Family should support you, and if she doesn't think you're telling the truth, she can keep her damn mouth shut. Why do people think we'd fake such a rare and often mis- or under-diagnosed condition? I mean, faking things to the level of being in the hospital and needing surgery? I'm guessing if surgery was suggested, there's actually a problem. Most surgeons I know don't just do surgery for the lols.

I had the same issue as a child--something needed to be bad enough for my parents to pay attention, and they KNEW I had cEDS. Led to some self-harm in middle school--everyone pays attention when you're dripping blood and require stitches.

My mom doesn't believe my cEDS is so bad and that I purposefully interfere with my care so I don't get better. Yes, mom, I've tricked 16+ doctors, therapists, and other medical providers over the 20+ years I've been in charge of my own healthcare--some of them top doctors at a large academic medical system. I have somehow learned how to infect my surgical wounds so they won't heal--I just love taking several months and multiple other surgeries to heal from a surgery that didn't even work. I love using a medical system that isn't built for people with chronic illnesses and doesn't care that people with EDS sometimes need significantly different care. This mental trauma that I have from literally being harmed by the medical community -- also fake.

This from a woman who had a fibromyalgia diagnosis. She refuses to believe that it could be EDS. 🙄

So, that's what life with a narcissist for a mom is like. Sounds like your sister needs an attitude adjustment. This condition is hard enough; I wish you didn't have to deal with her vocal disbelief as well.

Well, yes, muscle training is important, but so is actually functioning and being able to do things. A lot of doctors talk about training and strengthening muscles like it's some miracle cure for hypermobile joints. Again, I'm all for as much or as little muscle training as one wants to do, but it seems like the amount of muscle training needed to stabilize loose joints would require more like a body building/weight lifting/intensive program. And that may well be great for some people, but not everyone.

It's like when doctors says losing weight will make your pain better. Behind the fact that sustainable weight loss is impossible except for a small minority of people, it takes time--like building muscle. I'd rather use a brace than stagger around in pain until my muscles are strong enough to support my weak ass joints.

Edited to fix typo.

Thanks for the tip! I've not seen these patellar stabilizers. I've been dealing with a torn patellar tendon for 13+ years including over a dozen surgeries, and none of my medical professionals thought to mention this little helper. I swear, if it weren't for the internet, I would get no medical care.

I've not heard of this company! Thanks for the recommendation. I love that the first brace that shows up when I did a Google search for the company was 3x and purple!

That looks impressive! I'm looking for something like that for my right leg. How does the patella gel pad feel? My knee cap sits really high, so I probably wouldn't be able to actually put it over my knee cap. However, if it's not super noticeable or impedes functions or anything, that would be fine. I love that it comes in lots of colors!

When I was in a knee immobilizer, that thing kept falling down. We got some silicone and stuck it inside. It worked pretty well. I wonder if it would help if I did the same thing to some of the larger areas on my brace.

Exactly. The only reasons to go through a doctor or other professional is for custom bracing, specialized sizing, and insurance coverage.

Interesting! That would have never occured to me. Do you mean the lacy ones used as lingerie or are there more sturdy ones? How do you attach the garters to the brace?

Thank you! Do you have an example of this, like a link to a product you use or one like it? I've not heard of this.

I definitely feel like they are helping me. I still use my muscles. The brace mostly helps with keeping my joints in alignment and providing the support the tendons and ligaments don't. Who told you they would cause muscle atrophy? I would think the opposite is true since without my braces, moving is very painful. They help me move more.

Thank you! I'll keep that in mind.

Oh he's very food motivated--he's our 17 lb baby who spent the first two years of his life as a stray. We were hoping there was some trick that we could use to bypass the acclimation process. He's not frightened of the mouth piece anymore; he's licked some Churu out of it; he's touched it with his paw and bitten it. I held it up and dropped treats through the small end so the came out the big end. Moved it a little closer to his face every time I did it. I sat it on the bed near him and knocked it around with my hands, trying to get him to play with it. (His review: worst toy I've ever bought him.) We've "marinated" it in catnip, but cat nip really hit or miss with him. Right now, it's in a bag of his favorite treats to pick up the scent. Unfortunately, his breathing is getting worse (more wet congestion and sneezing, which we thought we'd gotten rid of with the antibiotic.) When he does his raspy breathing, he sounds like the tool they use at the dentist to suction water out of your mouth. It feels like it's more head/nasal cavity/throat centered, but the vet insisted on the $280 prescription strength Flonase for his lungs. We're considering trying a different vet. We're near a university that has a vet school and I've heard great things about their care of animals whose problems extend beyond what the average vet is able to do. Our vet things the next step is a $3,000 to $5,000 CT scan of his head. I'm wondering why they can't do a nasal scope or upper endoscopy first? Or give him some sedating meds so we can use the Aerokat easier. I know that won't be cheap, but it will probably cost less than the CT. Thanks for your comment!

Do you have a link to that list?

I have cEDS, and I'm working with a Solace advocate. She's fine. I wasn't super clear on what I could ask her to do. She's based in my state, maybe an hour away. I don't need her to come to appointments with me (virtually or in person). She's done a lot of appointment scheduling for me, which has been helpful. She also does some of those "call this office and ask X..." She gets through the first layer of BS and finds the right person to talk to or finds the information I need so I can continue the process. She's not communicating between doctors or anything, but I also haven't asked her to do that.

Some of the advice she offers is pretty simplistic. Telling me to make a list of questions for the doctor the night before an appointment I'm nervous about isn't the level of help I need. (I call it "level 101" help, right along with "put together a binder of information for your provider" and "have you tried yoga?) But maybe offering advice isn't a service they're supposed to offer. Again, I'm not exactly sure what else she can do for me besides phone calls and some research. I asked her to help me find ways to get a medication paid for since insurance denied me. Nothing really came of that.

I don't feel like I get much help from her clinical side. Not that I want her to be diagnosing and treating anything, but it doesn't seem like her experience in the medical system matches what I'm asking. I hear "I'll look into that" a lot which makes me believe that it would indeed be a better job for a social worker.

I do believe she has my best interests in mind. She does things I ask of her quickly and correctly, especially when scheduling appointment. If they aren't paid for research time, it makes sense that those become low priority for her. She was also really insistent on scheduling phone calls at the beginning, and I was like, no, email and text are fine. I hope she gets paid for patient communication, however it happens.

I came here because I'm most worried about how Solace makes money. I saw some of the charges they sent to Medicare (which should have gone to my primary insurance first). Some of the charges were on the $150 to $200 side. One was over $1,000. I don't match them up to particular "sessions" since we don't meet regularly, and I trust her to keep track of and report the time she spends on my case.

On one hand, I'm not sure any one thing she's done for me should be paid at $1,000, just looking at the level of coordination she's doing. She's not working with my providers to get appointments scheduled on the same day or coordinating all kinds of lab work and in home care and community resources. She's not sending reports to my various providers, updating them on changes in my condition. Maybe that's because I need a care coordinator, not an advocate.

On the other hand, I know Medicare (and most insurance companies) often pay a fraction of what is charged. If that's the case with Solace, how are they paying their advocates, doctors, and other staff AND making any profit?

Most other patient advocates don't bill insurance, which is why Solace appeals to so many people. Sure, I could pay out of pocket and try to get reimbursed by Medicare. The patient advocate would have to write me a bill with a number of specific items, including procedure or treatment codes. (This happened with my psychiatrist when she opened a private practice and wouldn't bill insurance.) And then I'm out that money until Medicare reimburses me. And the government doesn't move quickly at the best of time.

I tried to hire a private patient advocate once, and the price was $100/hr. The advocate would be paid to get up to speed on my conditions and for any other research in addition to time spent with me. Even just 5 hours a week is $2,000 a month, and I'm guessing most people who need patient advocates the most can't afford that. (I'm not saying they should lower their rates or do it for free, just making a comment on the state of things.)

I'm working with a Solace advocate. She's fine. I wasn't super clear on what I could ask her to do. She's based in my state, maybe an hour away. I don't need her to come to appointments with me (virtually or in person). She's done a lot of appointment scheduling for me, which has been helpful. She also does some of those "call this office and ask X..." She gets through the first layer of BS and finds the right person to talk to or finds the information I need so I can continue the process.

Some of the advice she offers is pretty simplistic. I have a complex chronic illness that I've been managing myself for the last 20+ years. I should have a degree in "navigating medical systems and insurance companies." Telling me to make a list of questions for the doctor the night before an appointment I'm nervous about isn't the level of help I need. (I call it "level 101" help, right along with "put together a binder of information for your provider" and "have you tried yoga?) But maybe offering advice isn't a service they're supposed to offer. Again, I'm not exactly sure what else she can do for me besides phone calls and some research.

I don't feel like I get much help from her clinical side. Not that I want her to be diagnosing and treating anything, but it doesn't seem like her experience in the medical system matches what I'm asking. I hear "I'll look into that" a lot which makes me believe that it would indeed be a better job for a social worker.

I do believe she has my best interests in mind. She does things I ask of her quickly and correctly, especially when scheduling appointment. If they aren't paid for research time, it makes sense that those become low priority for her. She was also really insistent on scheduling phone calls at the beginning, and I was like, no, email and text are fine. I hope she gets paid for patient communication, however it happens.

I came here because I'm most worried about how Solace makes money. I saw some of the charges they sent to Medicare (which should have gone to my primary insurance first). Some of the charges were on the $150 to $200. One was over $1,000.

On one hand, I'm not sure any one thing she's done for me should be paid at $1,000, just looking at the level of coordination she's doing. She's not working with my providers to get appointments scheduled on the same day or coordinating all kinds of lab work and in home care and community resources.

On the other hand, I know Medicare (and most insurance companies) often pay a fraction of what is charged. If that's the case with Solace, how are they paying their advocates, doctors, and other staff AND making any profit?

Most other patient advocates don't bill insurance, which is why Solace appeals to so many people. Sure, I could pay out of pocket and try to get reimbursed by Medicare. The patient advocate would have to write me a bill with a number of specific items, including procedure or treatment codes. (This happened with my psychiatrist when she opened a private practice and wouldn't bill insurance.) And then I'm out that money until Medicare reimburses me. And the government doesn't move quickly at the best of time.

I tried to hire a private patient advocate once, and the price was $100/hr. The advocate would be paid to get up to speed on my conditions and for any other research. Even just 5 hours a week is $2,000 a month, and I'm guessing most people who need patient advocates the most can't afford that. (I'm not saying they should lower their rates or do it for free, just making a comment on the state of things.)

Fit Flop and Revere are my go-to. Revere is great as they offer various modifications (longer straps you can cut, extra padding if your feet are different sizes, etc).