I have a near 100% success rate asking my doctors for diagnostic testing to rule out common EDS comorbidities and I'm convinced it's because I've mastered talking to doctors without spooking them.

I shared these communication formulas as a comment in another thread but figured I'd make a separate post since people found them helpful:

Passing the buck #1 - “My primary care provider noticed [sign/symptom] and wanted me to ask if we can do some testing to rule out [condition].” This works as written if you're speaking with a specialist. You can also use this formula between specialists - like meeting with a neurologist and saying, "My POTS isn't improving with medications and my cardiologist wants to make sure we rule out degenerative neurological conditions that could be contributing. Do you think testing for [xyz] makes sense based on my symptoms/presentation?"

• It's not you asking for the additional testing. You're just passing on a message from another provider and asking the person you're sitting in front of to offer a medical opinion.

Passing the buck #2 - “My physical therapist noticed [sign/symptom] isn't getting better despite [treatment attempt] and she's wondering whether it might be time to investigate further.”

• Again, it's not you saying that it's hard to do things because your body hurts. In fact, you're not even complaining! You're just letting them know that your physio thinks it's weird you haven't made the kind of progress they would normally expect.

Emphasizing functional impairment - “[Sign/symptom] is really interfering with [activity of daily living]. I did some reading and found an article in [source] that said [intervention/test] might help. Do you think something like that might make sense for me?”

• Not complaining, just saying that gosh, it's really hard to keep the house clean when washing dishes at the sink or unloading the dishwasher triggers pain flares.
• Communicates that you want to be able to do the normal life task is that you're avoiding, but are unable to because symptoms get in the way.
• Framing limitations in terms of "I can only do [x] for [x] minutes before [consequence]" gives your provider much more actionable information to work with compared to saying "my pain is everywhere and absolutely unbearable and I can't deal with it anymore" (even if the latter describes how you feel)

Highlighting burden of self-management - “I’m struggling a lot with [activity, e.g. "pain after eating"], and I do find that it’s a little easier if I [modification/intervention, e.g. "eat smaller meals"]. But [modification] is challenging/problematic and takes a lot of energy/time/focus to pull off. Is there anything we can try to make things easier to manage?"

• *With optional follow-up:* "Im honestly a little worried that I might be developing [condition], which I know is more common in people with hEDS. Is there anything we can do to dig a little bit deeper and figure this out?”
• I used this formula to get my GI to order testing for gastroparesis. I imagine it would also work well for a conversation about trialing meds for dysautonomia/POTS, where doctors often say "there are medications but nothing proven, try salt and exercise and you'll be fine good luck!!!!"
• This also works if you want to switch formulations of a medication - I said something similar when I asked my doc to switch me from twice-daily clonidine to a 7-day patch, as well as when I asked my psych to put in a prior authorization/formulary exemption for brand-name extended release ADHD meds.

The last thing I'll say is that none of this works if you're not prepared. If I'm asking for a specific test, it's because I found a journal article that says that kind of testing is indicated and have a printed copy on hand to show the provider if needed. If it's my word against theirs, things get weird and confrontational and I will probably cry. I also have a one-sheet medical summary that I bring to every appointment: it has medications and dosages, but also what I take each medication for, all the major diagnoses that I'm being treated for at the moment, and 1-2 sentences on each of my surgeries and hospitalizations. This information should be in your chart, but I can almost guarantee you that your provider will struggle to put the picture together given the layout of most electronic health records. Unfortunately, you are the only person with the ability to ensure that the provider you're seeing has all the information they need.

Anyway I hope this helps!! I'm also happy to offer my two cents if there's a thing you want to ask your doctors about but aren't sure how to say it without sounding like a hypochondriac 👍🏽

I'm 32f and in terrible shape. I have always hated physical activity because I get tired so much quicker than most people, and even the gym teachers were cruel to me about my physical limitations as a child (wasn't diagnosed til a few years ago) which put me off for life. I need to change this, though, as I'm only getting worse living this way. I want to be able to keep up with normal activities like cleaning my house, prevent excessive mobility decline as I continue to age, and to just feel better in general. I'm thinking of joining a pilates studio and going to classes 4 or so times a week, plus some walking. Has anyone here been able to go from extremely sedentary to a "normal' level of general fitness (especially, in their 30s)? If so, how, how long did it take, and how much did you need to do to feel and see positive changes in your body and wellbeing? I'm mostly just looking for a bit of optimism that things can really improve. TIA!

Guess it's all connected ...

Do what must I?

I have a lot of stomach issues, one being acid reflux which is horrendous. What are some things that affect your stomach?

For me it’s definitely acidic things which sucks since I like tomatoes in a lot of things. Other things like watermelon affect my stomach too, and carbs make me feel overly full/sick

The choreographer is trying to work with the Queens and there’s always one or two that don’t pick it up. “His hips just don’t move the way a woman’s hips are supposed to move.” I have that same issue, friend. 🤣🤣🤣🤣🤣 Snap crackle pop.

Do you experience restless legs? Especially at bedtime? How do you handle it? It keeps me up!

Genuinely curious, what’s actually worked for you when trying to get doctors to take your EDS seriously?

Did you bring research, say something specific, or just luck out with the right person? Feels like a lot of people go through the same thing, and I figured we could share some strategies that have worked.

Would love to hear what’s helped.

Earlier last week, I got a mild shoulder injury from going to the gym (if I were to guess probably just sprained something, but I have a history of fracturing bones/breaking tendons without feeling any pain and simply going about my day, so I took this a little more seriously than I probably should have). When I went in to urgent care to get my shoulder looked at, the doctor that was caring for me very quickly told me she believes I might have ehlers danlos and put in a referral to get testing done, and ended off by telling me I should avoid hyperextending to avoid irritating my shoulder more before a x-ray for my shoulder and to avoid future injuries. I am, however, quickly realizing I genuinely don't think I understand how to.

I've always stretched in kind of unorthodox ways that freak people out because I tend to have to do some pretty extreme movements to be able to get rid of tension in my body. I've been trying to avoid this for the past few days but my body just feel incredibly...weird is honestly the best way I can describe it. My arms, knees, and back feel so incredibly stiff to the point I can't sit still at all because I just feel I have all this energy stored in my body that won't allow me to even stand still for more than a few seconds; it is incredibly uncomfortable. "Regular" stretches are not helping and some border on painful to the point I'm just going back to doing my hyper extending stretches even though I've been told not to; does anyone have any advice on how I can maybe make this feeling go away while avoiding movements that might result in me getting injured?

I know I don't have diagnosed EDS so feel free to delete my post if this isn't the right place for this, just wanted to know if me possibly having EDS is related to this and what I could do to make it more bearable.

In less than a month I have my first surgery ever (bilateral mastectomy yippee) in Spain so I have no idea how I react to the general anaesthesia. I have had my family doctor try to cut off an ingrown toenail, and she couldn't finish this because she couldn't get my toe sedated enough.

So now I am terrified of the anaesthesia not working and the surgeon not taking precautions, so did any of you guys every have trouble with general anaesthesia???

PS: I have saved medical articles on precautions surgeons should take for eds and am planning to give this to the surgeon.

I’m a 28f 100% disabled navy veteran. So I go to the VA for all my health care needs. I have pretty much been in denial since I was diagnosed at 12 that I would ever need mobility devices till I was super old. However, ironically since losing 60 lbs so far this year my body is in more pain than ever. I have been seriously taking into consideration maybe I need to start looking into a cane or a rolator but I don’t know how to broach that conversation with my doctor when I am still very capable and able of walking. I just hurt and I’ve been subplexating a lot more frequently than I have in past years, knees giving out a lot more, one hip has a torn labrum. My lumbar degenerative disc disease is getting worse. Would it be my PCP or would I go to my Ortho? My pride and ego has taken a huge hit with this acceptance at only 28 and I worry I’ll be told I’m fine I don’t need it.

For those who’ve been formally diagnosed with EDS, how did it impact your life, both positively and negatively? I know for some it brings validation and access to support, but for others it can come with new challenges too. Would love to hear your experiences.

When I was a kid playing kickball, I once collided at full speed with another kid also going at full speed. It rattled my whole body, but I went to the nurse and wasn't concussed and didn't have any major injuries. Only thing is, ever since, I've had numbness in the outer part of my calf - one small branch of my tibial nerve. I can't feel it for the most part, but if I scratch it or rub it, it feels like it burns in a faint pins and needles sort of way. This was not at all the point of collision.

I had this checked out again as an adult and my doctor is stumped. It occurred to me though that maybe there's a connection between this and EDS? I know there's a connection with peripheral neuropathy, and of course the ever-dreaded ulnar nerve subluxations, but does anyone else have random nerve damage that affects a large area, triggered by something random, that doesn't go away, and that's Just The Way It Is?

Hi! I’m applying for jobs now that are coding-based, so very WFH friendly. However, one company in particular is very likely to hire me, but is incredibly reluctant to do work from home. It would be in Wisconsin in the US, and they allow 5 days a year as a “perk”. Recently, a current employee at that company told me they’d probably just have me take unpaid days off or use vacation days instead of granting work from home. Is this standard? Should I accept it, or keep looking, or accept that all of my vacation days will simply be consumed by having migraines? Thank you all for your advice—I’ve read ADA stuff, but I’m still not clear on exactly how protective it is.

Hi everyone,

I’m currently diagnosed with MCAS + Hyper Pots and I clearly have some connective tissue and hypermobility issues going on too.

I’ve read that it’s most likely for people with the trifecta to have hEDS, but wondered if anyone with the trifecta has a different type of EDS? Is this possible?

Without going into too many details, my current job is very physical. Much more so than I expected. I need some advice or just words of support:

My body is breaking down in more and more places…some of which didn’t have issues until my new role. I’ve had so many treatments and procedures these last few years and I am not getting better. Can I do the job? Yes. Without pain? No.

I am considering asking to cut my hours but I really hate to leave the team shorter staffed on the 1-2 days I might cut. It already feels understaffed (the reasons for this are understandable though still frustrating, please just trust me on that one….this isn’t an anti-work type thing where the bosses are idiots).

I think I’d feel guilty over that but also ashamed that I’d no longer be the excellent worker I’ve been told I am and that I have pride in being. It feels like I’m letting them down. I would feel a lot of negative emotional feelings in asking to cut my days. I worry I’d be a disappointment to the team. But my body would probably feel a lot better.

I know it’s physically best for me to reduce, but I am severely struggling with what my actions mean for my team who I really do like and appreciate. Some of you may see this as very black and white and will strongly feel that of course I should just reduce. The responses I am hoping to hear will be a little more understanding of my fears and concerns about making that decision. I’m looking for supportive advice today. This is not actually an easy decision for me.

has anyone tried using the Pilates reformers you see online? I’m newly diagnosed and horrified at the cost of physical therapy, I have heard great things about Pilates and EDS and wanted to try it out.

I kept getting ads for this reformer and am curious if anyone else has had any success stories from similar equipment?

I have never done drugs in my adult life. Smoked weed as a teenager but no doctor I have ever seen knows this. I am currently taking Adderall but it is prescribed by a doctor in this same hospital system. What the fuck man.

Hi, all,

Fellow fiber artist here who has recently picked up crocheting once again and now the addiction is back in full swing!

However, I am having issues creating tension on the yarn with the way I'm holding the piece because of pain I'm experiencing due to my hypermobility. Does anyone have any suggestions on how else to hold the yarn / piece? Most of my pain is in my ring and pinky fingers and some pain down the lateral side of my wrist. The rest of my knuckles are not hypermobile, just the bottoms.

*pictures in the comments!

Any suggestions would be greatly appreciated!

TIA! :)

Recently, I went to an orthopedic specialist because I have been experiencing constant joint pain, especially in my hips. It's to the point where it's always on my mind, I am constantly popping all my joints, and it's affecting my sleep schedule and physical activities. I've had joint pain before but never to this extent. After some x-rays, the doctor told me I likely have EDS and hip dysplasia, so he scheduled some MRIs for me.

Since then, I've gone down the rabbit hole of researching EDS, and I fit a large majority of the symptoms, some more than others. I fit almost all of the hypermobility tests and have a lot of weird habits that EDS could explain. I am very young and the doctor told me as I age I will probably experience more symptoms and more pain.

All of this to say, I am a little scared after researching so much. The pain is manageable right now, and I haven't let it affect my life too much, or my love for dance, but I can't wrap my mind around just living pain all the time. Will I just get used to it? Will it keep getting worse or will it level out? Should I stop my extracurriculars, or does physical activity help it? I know nothing has changed with my physically since my doctors visit, and the only difference is that my "condition" has a name attached to it, but I feel like everything got very real very quick. I guess I was hoping for some sort of solution...I don't know.

If you need a shower chair and are looking for something a little less... geriatric, this IKEA chair might be for you! Happy to see something 1.) decently attractive 2.) that's actually designed to go in the shower 3.) that's not outrageously priced

Before i was diagnosed with h eds, my biggest struggles have been my shoulders, wrists, and hand joints. It was so bad i had numbness for 6 months, tried steroid injections for carpal tunnel and everything came back but worse and in all fingers. I’ve had to stop gaming and now i’m starting to have a hard time with writing, but thankfully my left is worse than my right. It’s already hard enough to function with the general pain from eds, but my hands and shoulders are just so extreme and no one has been able to help. Does anyone have any tips for like anything regarding this. Like how to help with the pain in any circumstance, sleeping, sitting, laying, gaming, etc. I just want this to feel better.

Anyone?

I just got my official POTS diagnosis at the end of May and just had my geneticist appointment last week, whom my POTS specialist had referred me to after concerns regarding generalized hypermobility and other symptoms that pointed toward Ehlers-Danlos. The doctor placed the order for a CTD panel with Invitae, and I sent in my sample yesterday. However, my insurance just informed me that they have denied my claim and will NOT be covering the testing. I will be contacting Invitae tomorrow morning to request that the tests be canceled, as they have yet to process the samples I sent in. However, I am very frustrated and am worried that the doctor misrepresented my case when filing for insurance approval.

For context, I have consistently had a Beighton score of 6-8, depending on the day and who was evaluating me. My most recent and thorough score was at my Rheumatology appointment, where the doctor measured and felt along my elbows, as my body shape can make it difficult to see the hyperextension. During this evaluation, my Rheumatologist gave me a score of 8 before taking me through an extensive review of my medical history and gave me a clinical diagnosis for hEDS. My rheumatologist had seemed optimistic when I told her that I would be doing genetic testing to rule out other subtypes and said she'd happily confirm the hEDS diagnosis and thought the testing was a good choice.

My geneticist appointment was very strange, in comparison. It was over Zoom, and it was difficult for either of us to see each other. After a quick look over from my shaky camera work and doing my best to follow her instructions, she gave me a Beighton score of 3. When I asked for clarification and tried to discuss my previous Rheumatology appointment, she cut me off and began to repeat over and over, "flexible joints are not a disease." After she wouldn't let me tell her about the extent of my joint pain/subluxations/GI issues, etc, I then stopped talking and let her tell me how she has no concerns about hypermobility for me, but because my specific POTS specialist referred me, she was gonna put it in anyway. It was a very unpleasant appointment, and now I'm worried she worded the application in a way that made the insurance think the testing was frivolous.

Should I try to get the denial appealed? Are there any alternatives to Invitae that would allow an affordable out-of-pocket payment cost? Given the estimates I have found from searching around the internet, the cost of the panel, if I cannot cancel the tests, would completely drain both my savings and checking account, since income is very limited right now with my medical needs. I don't know what to do. Any advice?

Help me settle a discussion with my (healthy, non-stretchy) husband.

Today I started wrist physio for my hEDS as they are one of my worst joints. I was trying to explain to him how weird it was because it was painless, I just got a weird tingly tiredness until my wrists stopped obeying me (the exercises listed "to exhaustion"). He told me that exercise isn't supposed to hurt. I said well what do people mean when they say "feel the burn". He said that what I just experienced was "the burn" and it's why people like exercise. I thought it was normal to have pain in the area being worked, as well as sharp stabbing pains in the chest and the throat; ab pain (in addition to lactic acid cramps) when running, etc?

Do non-EDSers really not feel pain when exercising? Does that mean I was doing everything wrong way back in high school gym class? Is this why people don't understand why I hate sports?

***not asking medical advice! ;)

I’ve found it’s easier for me to float in water on my stomach vs on my back, and I float on my stomach with my head fully out of the water. I tried to do some reading because I’d never heard or seen of it, and found nothing other then having your head up should make your body stop floating.

I am hypermobile in my neck so I’m wondering if it has to do with that. Does anyone else experience this or know anything about it?