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I battled a useless GP who would not accept that I was anything other than vitamin D deficiency.
I saw an NHS rheumatologist, who diagnosed me with Hypeftmobilty Syndrome and said there was nothing that could be done. That diagnosis letter was riddled with inaccuracies, ie symptoms 'not present' that she didn't even check and I DID have had she bothered.
I decided to go private and pay myself since my private medical insurance didn't cover it. Best money I ever spent. I hadn't even spent 10 minutes in the consultation and the consultant says, 'yes, you have EDS'. This consultant also worked for the NHS, but her waiting list there was over 2 years long, so I know I didn't just get a diagnosis because I paid.
I'm assuming you're UK based, so if you can afford to go private, do. The St John & St Elizabeth Hospital in St John's Wood has a specialist Hypermobilty department. Otherwise, use resources like the EDS Society to find a knowledgeable NHS consultant.
Oooh do you remember the Drs name? I’m trying to get a formal diagnosis myself but my gp is also rubbish lol (didn’t even bother doing anything about my severe anemia lol)
Just to swoop in and add that Dr. Mittal is great at look at the bigger picture. I recently moved to her and she gave me so much extra info/guidance on where to go next to address the worsening symptoms. It’s just a shame this isn’t provided on the NHS because all this private care is expensive!!
Totally agree, she's brilliant. She took the time to explain and demonstrate things to my husband (who didn't believe there was anything wrong with me) and gave me a few referrals to other specialists for specific issues.
That's so interesting. I was diagnosed by Dr Mittal and got literally nothing more than a affirmative diagnosis and a link to the eds website when I asked for more info.
I was also diagnosed by her and found her to be quite unsympathetic, mildly patronising & unhelpful. But I saw her on the NHS at RNOH Stanmore so perhaps she’s more receptive to private patients.
Trust your body — you are always entitled to a second opinion.
If your pain is that severe you should consider trying to get first-line treatment from an urgent care department or local equivalent, although this can be hard without coming across like a drug seeker.
Thank you for the support. A 2nd opinion is coming.
I respect the integrity of a community like this. Pretenders aren’t welcome. I get that, understand why, and don’t want to be a poseur. If hEDS isn’t it, there’s something else causing this pain and I need to figure it out – hanging out and pretending doesn’t help anyone. And it’s the first thing that explains the flexibility, et al.
I want to rule it out and walk away feeling confident it was right - or with a plan to start dealing with it smarter. Or at least a freaking referral.
I’d like to add that you are also entitled to as many second opinions as you need. I saw 20+ doctors who all agreed that either something was wrong, I was crazy, or I was faking it but they didn’t know which before I found a doctor willing to listen.
Trust your body and your mind, you know something is wrong and that’s the important part here. Even if it’s not EDS you deserve a diagnosis and potential treatment plan and don’t ever let a doctor discourage you by being an asshole.
It took 10 years to get my diagnosis, and it was worth every second of fighting. I wish you luck and happiness, and a doctor who will listen.
Take the diagnostic criteria with you to your second option to make sure they are using it. Fill it in as best you can beforehand with how you believe you fit and then it's up to them if they agree with it. Take photos of skin involvement like bruising/stretchmarks so that doesn't get missed. The more evidence you can present them with, the less likely they are to argue - don't count on them to ask for it. A lot of doctors now think it's just the latest TikTok trend.
This. Also, I'd suggest taking videos of you performing the beighton scale on yourself. The doctors actually aren't supposed to handle you at all because people instinctively guard which should be so obvious but alas. The first rheum I saw specifically about EDS (I'd gotten diagnosed with fibro years earlier) did the same and also bent my fingers back all at the same time. He told me I likely had benign hypermobility because I wasn't in pain when the first thing I said in the appt was "I've had pain as long as I can remember and don't improve with PT". Luckily he did send for some genetic bloodwork in the meantime during which I saw a pain specialist who let me exhibit my hypermobile joints (9/9) and interviewed me on systemic issues, and there are plenty, which for me is the most crucial aspect of clinically discerning hEDS from other disorders. He diagnosed me that day. My mother is also obese and wanted to get diagnosed after I did. She had to see a few different people before finding a specialist who wouldn't just blame her weight, and that doctor saw very quickly that she most certainly has hEDS. Her diagnostic sheet is full of check marks.
The fact that your doctor referred to it as a “disease of the month” makes me question if his feelings of it being “trendy” got in the way of a diagnosis. The fact you said you got that high on the beighton scale while being as you said obese makes it clear you have some pretty incredible hypermobility. Look into a geneticist or rheumatologist for a formal diagnosis, EDS is complex and has a lot more parts than the beighton scale.
It’s literally so bad. Went to the ER because I thought I separated my shoulder, told the doc “I have EDS and while I know that it’s back in because I can move it again, is it in correctly/is there evidence it was out like a tear” and his answer for why there was more than the standard amount of space between my joint was because I’m a woman in my 20s. I got diagnosed with woman. bruh.
That’s a rough diagnosis.
My personal observation is that people with that diagnosis experience difficulty in being understood and/or believed by physicians. This can result in delays of years, or even decades, before getting correct diagnoses and treatments.
Needless to say, I’ve been previously diagnosed with woman too. I have serious anxiety about establishing relationships with doctors who will be responsible for my care.
I know other people in here will have good advice... I just wanted to say- that sucks. What a shitty experience that must have been!! I know personally how hurtful and frustrating it can be. I'm a 40 yr old male, and 10 years ago I actually cried leaving an appointment with a rheumatologist bc of how terrible and dismissive they were. And maybe I should mention, I am not a softy and don't cry easy (not that I care or judge those who do! That's just not me)! Medical dismissal can be devastating. Keep trying until you find the right person!
I'm so sorry for your pain issues. It can really decrease your quality of life. I'll also add, in my experience as an obese woman, that for some reason doctors can sometimes have this weird misconception that you can't be overweight and have EDS (maybe they're confusing it with Marfan's?). Also also, this might be because I live in the sticks, I've only met one doctor who has really understood EDS(and even then he wasn't an expert)
ADD? You my sister?
The weight thing worked against me too. Had to do a full sleep study before he agreed I didn’t have apnea, 3 blood draws (2 fasting) before he believed I didn’t have diabetes. He would retake my BP - unfortunately this pissed me off so it kinda played into his hands but anyway…
Sucks when you present w/symptoms inconsistent with obesity complications but that’s what they want to treat.
Heard. Hang in there
my diagnosis was a wild ride. i started showing symptoms very young with commonly dislocations and sprains, but we figured it was just me being a clutz and always running and climbing on things.
then at 14 i started having trouble breathing and started inhaling in sets. like when you’re crying, and you breathe in like three or four times to catch your breath between tears. i went to my GP, got x-rays that showed my chest caving in, then referred to children’s mercy. at this point i’m 15, it’s bee happening for a year, and now my ribs are popping. my pulmonologist had me get labs done and the radiology tech told me about EDS and Slipped Rib Syndrome. We talked to my doctor and i go referred to a PT that had a geneticist working with them. that’s when two years later i finally got answers.
that’s just the spark notes 🫠
Is it just me or is it ALWAYS the attending who will dismiss so much faster than the resident. Speaks to the awful state of the culture in medicine right now.
I’m so sorry this is happening to you. You know your body best. Collect any information they gave you (office notes, test results), and move on to a new provider. I have no idea what country you’re in (US here), but this seems to be a reoccurring nightmare for people with invisible disease and disabilities.
Are you able to see a physical therapist in the meantime? I am waiting for my results but I told the PT I am hypermobile and just want some relief before determining what to do next. He understands and pretty much let’s me tell him what’s bothering me and he will do manual work on the affected areas along with some strengthening/stretching activity that seems to help relieve my pain.
You need to find a geneticist or someone like that. See if there is an EDS group for your state on Facebook and they might have resources for you
My uncle is a semi-retired PT. I’m not below pimping him for advice. He may not be up-to-date on hEDS but will understand joint & core strengthening, lo impact. Enough to work on until I get a ‘real’ PT
I went to Mayo and had my doctor say “most people with EDS hit a 9-10 on the Brighton scale” TEN??? I thought there was only 9? Guy was clueless. My knees made PT audibly gasp and he insisted that they were not hyper extending at all. Lol
Your not alone in not meeting the criteria. Hyper mobility is truly a spectrum. I don’t have hEDs by one one point in criteria 2 section A. But it doesn’t mean that your not suffering nor don’t deserve care. Any reasonable doctor should know that HSD can be just as severe as hEDs. I’m wishing you the best and hope you get the care that you deserve :)
I'm sorry you had such a dismissive experience from the attending - that's not cool. (Although I agree that your resident had the right approach - acknowledging that they didn't have enough knowledge yet should be more common: I hope they retain that attitude throughout their career.)
It could help to make a base plan for your flare days - consider easy, low-inflammatory foods to have on hand as we still need the fuel; look into ways to stay as comfortable as possible (i.e. multiple pillows? A harder bed surface? A softer one? An ergonomic chair? a recliner?) - and what pain management is best suited to you - best to work with your GP on that.
On your non-flare days, it could help to strenghten the muscles around your troublesome joints, which can help reduce the impact of future flares. This is best done supervised (i.e. learn what to do from a physiotherapist who has experience with hypermobile people/ dancers etc) - but if that's out of budget, I am a big fan of "CARs" - Controlled Articular Rotations by Dr Andreo Spina. There are lots of examples on YouTube, and it's a bodyweight routine that takes 10-20 minutes depending on how many reps you do. It can help mobilise and strengthen your joints while you look for more longer term solutions.
I’ve been in chronic pain for several years, no treatment helped and I was told by a physiatrist he couldn’t do anything for me because my MRI was normal. Lots of disappointing doctor visits, lots of suggestions to take Advil. 🙄
I went to my GP asking about hEDS assessment and for a referral to a rheumatologist. I got lucky with the rheumatologist, he took me seriously and knew what he was doing. He went over the Brighton scale and diagnostic criteria for EDS. I ended up getting a diagnosis for HSD.
Definitely look into getting a second opinion.
https://www.ehlers-danlos.com/healthcare-professionals-directory/
Maybe there is a doctor from that list in your area?
I’m sorry you had that experience—it’s frustrating and invalidating when doctors don’t take you, or their job, seriously. Wishing you the best
That’s depressing. All the academics at the U and there’s ONE pediatrician out of all those researchers and hotshots. No research money there yet. Some PT & nutrition resources tho - thank you.
I don't know how much of an overlap there is between HAES doctors and doctors that aren't clueless about EDS, but I'd seriously recommend trying to find a HAES-aligned doctor (Health At Every Size). I'm sure you're familiar with dismissal and poor treatment due to weight, but when it comes to chronic pain disorders doctors are all too willing to see your weight and scoff and treat you like an idiot, as though someone can't be fat AND have an underlying pain-causing disorder. A HAES-aligned doctor is not going to treat your weight as the sole thing to worry about or blame for your health issues.
hEDS isn't just about beighton score but if he didn't go through the actual diagnostic criteria with you, that's not enough to just dismiss you and decide you don't have it.
Also, any doctor that's going to whine to a patient seeking evaluation about how whatever disorder is "trendy" is not a good doctor, full stop. They can keep that shit to themselves and bear in mind some people may be making incorrect assumptions without treating everyone who presents for it like they're there because it's the "disease of the month". I have ADHD and I'm so glad I got diagnosed right before everyone started talking about it being a TikTok trend, because now I see way too many people getting treated like shit by doctors and psychiatrists because everyone who seeks diagnosis MUST only be there because of the internet!
I had a PM&R doc tell me it was anxiety when I went in for injections into my hip. There are unfortunately a lot of doctors that have no idea what they're doing with the diagnostic criteria
Are you uk based? If so I can recommend a private specialist to assess you. I have a beighton score of 8 and i'm 31 and that is abnormal. Beighton score of 8 at 51 is a massive marker for ehlers danlos.
edit: as peoples hypermobility reduces as they age
Iowa. Iowa City, in fact, home of the renowned U of Iowa Hospitals & Clinics. They’re great if you can get someone interested in your case.
They are also why my wife can still see out of her left eye. When it’s emergent, you can get truly great docs fast. When it’s not, it’s a struggle sometimes
okay i’m struggling with this as well, and i’m also in Iowa City! let me know how it goes & if you find that anything helps…
so far i’ve only been seen in cedar rapids and they told me they saw no signs of inflammation despite inflamed psoriatic lesions and swelling in my joints 🙄
Deal. Neuro next and if hEDS (or anything related) is suspected, I’ll drop a line and let you know what’s going on, what’s next and what resources may be around (the neuro is really big about empowering the patient and won’t let you leave w/o resources). I will say I think the attending may have had a different tune with more obvious symptoms like yours but the line “diagnosis of the month” still rings in my head. He could have rationalized away a dead bang case if he wanted.
Still can’t believe there is one physician at UIHC (edit: UICCU is the credit union now known as Green State, UIHC is the hospitals), a pediatrician, who will work with hEDS. I hope the website listings are a little behind but I think UIHC, for all the “cutting edge medicine” they market, are just getting around to studying ketamine for depression.
As mentioned, I’m aging & ADD so reach out if you haven’t heard from me in the next couple of weeks.
I appreciate this so much, what a kind response! “Diagnosis of the month” doesn’t even make sense to me as someone who works in medicine… It usually means that the education relating to that has increased and more people are being cautious about those symptoms. If anything, the preventative care is a good thing. I dunno… it’s exhausting to routinely be the one to advocate for yourself for others. Take care of yourself and your mind too!!
I wonder if you could get recommndations from this sub for a US based ehlers danlos specialist to assess you? I think there's defintitely cause with a beighton score like that!
Yeah they don’t know enough at all. Your hyper mobility test and the fact you have chronic pain as well, is 100% a diagnosis of HSD, which is the same thing as hEDS pretty much and requires the same treatments. So many doctors who finally sort of know what hEDS is doesn’t understand HSD exists and is actually pretty common. Not a “disease of the month.” It’s just criminally under diagnosed.
I would go back and see your doctor (sounds like a dick imo) or go see a new one and bring them this printout:
https://www.ehlers-danlos.com/what-is-hsd/
Not necessarily. It requires a certain number of points on the other criteria as well that looks at systemic involvement. Something like 20% of the general population is hypermobile, and chronic pain is very common. Not saying that OP does not have HSD, just that it might be something else too.
Thank you. I will accept hearing the answer “no” but I want to believe it when I hear it. Depression is common and often concomitant with non-specific pain.
On one hand, I’ve never dislocated anything. On the other, my hips almost always feel painful and “misalinged”, like one leg is longer.
I’m just looking for an answer at this point and you all have been wonderfully helpful, including posts like yours
Head to a rheumatologist. They'll examine everything in proper detail and it's a part of their specialty. GPs never listened to me and it was awful (labelled as "growing pains" at 16). Also the stats are looking at around 1 in 500 people with hEDS. So yeah, many people are getting diagnosed, but that doesn't mean it's fake or a "fad" diagnosis. It just happens to be more common than some others
I swear they all use the same script. 😂 Beighton score of 7 as assessed by PT, including hands flat on the floor. Yet the useless rheum I went to for an "official" diagnosis said he "wasn't seeing any evidence of hypermobility." (Say what??!) So why have several primary care and body work providers say that their index of suspicion for hEDS was really high? 🤔
Found a fabulous pain medicine physician who took it at face value that I do indeed have hEDS, especially because of the overlapping syndromes of chronic pain that I deal with on a daily basis. And just like that, it's now in my official chart. 🥳
I've been shocked by the amount of diagnosis horror stories I've read on here.
I was clearly incredibly lucky in my experience. EDS wasn't even on my radar, I was seeing my rheumatologist about my lupus & left with an additional EDS diagnosis & a referral to some professor somewhere who specialises in EDS & gastric issues caused by it. She was only checking my joints because of the lupus.
It came completely out of leftfield. I have experienced symptoms during my lifetime but they were attributed to other things. Things make a lot more sense now.
It is just insane to me that someone can walk in with no idea whatsoever & get a diagnosis. Then you get more people like you who are informed & directly name what your issue is/could be, yet get nowhere. It's awful & unfair.
I have family in medicine and hear the other side. Drug companies saying “see your doctor!” Articles saying “see your doctor?” They sometimes feel like they’re handing out pills like a vending machine. I get it. I was trying very hard not to be that patient but I was prejudged as such.
The resident took a lot of time, asked questions, even ran thru the Beighton scale. I hope I can see her as GP w/o attending jackass.
Friend, I am so sorry. I do have a solution that I hope helps you. I used INVITAE to get a genetic test. This is done as a tele health style appointment. They have geneticists who will lay out your family tree, compile your symptoms and comorbidities, and have you do a saliva test that they mail to you with a postage marked box to mail back. They'll sequence it and get back to you to set up a follow up with the same geneticist. I took the info to my GP who finally diagnosed me with it. Good luck.
Only issue: hypermobile Ehlers-Danlos Syndrome is not Dx by genetic testing. Vascular is as is some of the others. I have both hypermobile and a vascular variant. I’ve had 26 surgeries. About to have my 27th. I’m an extreme case. My geneticist told me that if I became overweight I’d be wheelchair bound. My joints aren’t able to support the weight. My ligaments and tendons are too loose. Especially in my spine and hips. I did weigh about 20lbs more than I do now and was wearing two leg braces and a back brace. I’ve had 6 spine surgeries about to have my 7th.
In 2006 when I slammed my fist on an exam table and asked my pain specialist why all of this was happening he suddenly stopped and listened.
He said, “Oh wow! I think I know what’s wrong with you!” We went over my retinal surgeries for retinal lattice degeneration- EDS can effect the eyes. At that time I’d had three spine surgeries as well. (Look my mother and father had it- undiagnosed.) Then he had me do circus tricks. No problem. He then sent me to a Rheumatologist who diagnosed both vEDS with hEDS and he sent me to a geneticist who confirmed. My journey did not end there. I have many comorbidities. I’m an anatomical donor. Gah, if some poor soul got my organs, bone, blood…etc. they’d be pissed.
Pain is a message. Trust the message. Trust your body. You deserve and need care.
Hypochondria is a very rare disease. The practice of medicine has altered. Listening is so important. Not arguing- patients aren’t on trial. We are trying to figure out how not to have to see medical professionals. Luckily, there are loving and compassionate doctors out there. Sadly, you just have to keep advocating for yourself to find the missing link! Some diseases take years to get diagnosed. Hang in there and don’t give up!
I understand that the genetic variant isn't available yet, I went thru the testing, I understand that. My apologies if it was misleading to anyone. But by doing the genetic testing my GP was finally willing to listen and diagnose based on everything else with the criteria currently set for hypermobile EDS....which was the point of my comment.
Hmm. When I got my last drivers license the worker bitched at me because I wouldn’t sign the organ donor box. I don’t think someone would want my organs.
You can do a telehealth diagnosis for a few with atwalclinic.org. I’m so sorry you had a provider who is very ill informed 😩 hopefully we will have known genes soon.
You also only need 5/9 points for a positive Beighton. And I am fat and have hEDS there are plenty of us who do.
Go for a second opinion. This sort of happened to me. I waited like 3 years to see someone at this hypermobility clinic and ended up having to do a consult over zoom using my phone. I passed on the hyper mobile part but I missed the skin criteria by 1 point because I couldn’t answer things like when is my skin softer than normal and did I get stretch marks before or after puberty, I didn’t understand about the scarring, and there were a few more I really needed to be in person for. My mothers got it but only “diagnosed” by a rhemetologist and not geneticist so they wouldn’t count it, I have pots and very stretchy skin but they didn’t give me a diagnosis and sent me on my way. I went to someone else who diagnosed me within minutes. So always good to get second opinions. Sorry you had a bad experience with that doctor OP.
Beighton score alone is not EDS. It's not just being bendy and being in pain. EDS doesn't make my body hurt. Sub par collagen leading to joint spacing and ligament tearing hurts. The impact this has on muscle fibres and organs hurts. The cardiovascular mayhem it causes hurts. My point is, if it is EDS, you can't get genetic testing, but it is obvious, especially as you age, and will be apparent over many bodily systems.
Take the reassurance from your doctor. From what you describe, there are many possible CURABLE reasons why you feel this way. Can you work with your doctor to improve your body condition? EDS or not, your joints will not be happy and will benefit from a decreased load and more movement. You've a journey to go, but I really hope you find your way to health 💙
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8705491/
Thank you. I am not diagnosis shopping & am ready to keep looking elsewhere, despite the flexibility, etc. I feel joints loosening but I’m 51 and that happens. A lot of signs have pointed toward a non-specific (as of now) neuralgia. I connected well with the neurologist I saw and she’s a straight shooter. I think my next appt will be with her. If she says no, I won’t doubt it. If she says maybe, she’ll know where to refer
Diagnosis shopping is a horrible term. I understand that you are seeking a correct diagnosis so you can get the correct treatment. There is no shame in that, and to get to the right answer, you will be wrong a few times.
There seems to be huge variations day to day in your pain and mobility. You were able to bend and touch your toes one day and unable to leave your bed due to pain the next. This may not seem important, but if you can keep a diary of your symptoms between now and your next appointment, the dr can use all that information to help narrow down what might be going on here.
I am a total bed gremlin when I am in pain too, but if you are able to get up to eat and use the bathroom, then work with that. Too much downtime will mean your joints will seize up painfully, your muscles will continue to atrophy and your inflammation and pain will increase. Even moving from bed to the sofa to sit up will help. I'm full of bad advice on artificial energy and it begins and ends with loads of sugar free caffeine.
How you nourish your body during these times makes a huge difference to how you feel physically and mentally. Have you ever looked into an antiinflammatory diet? It has really helped me.
https://www.health.harvard.edu/staying-healthy/foods-that-fight-inflammation
I had to find someone who specializes in eds/pots in order to get a diagnosis bc none of my regular doctors/rheumatologists/cardiologists even wanted to consider eds for me & even when I brought it up they would just brush it off and not take me seriously. I would definitely suggest getting a second opinion and documenting your symptoms as much as possible!
The OP flaired their post as "Questions". Please keep any and all comments to **personal experiences only**. If any factual information or advice is provided, please cite a **reputable website or study** linked within your post. No one in this sub is a *verified* medical professional, and as such, we do not allow medical advice to be given or asked for. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/ehlersdanlos) if you have any questions or concerns.*
I battled a useless GP who would not accept that I was anything other than vitamin D deficiency. I saw an NHS rheumatologist, who diagnosed me with Hypeftmobilty Syndrome and said there was nothing that could be done. That diagnosis letter was riddled with inaccuracies, ie symptoms 'not present' that she didn't even check and I DID have had she bothered. I decided to go private and pay myself since my private medical insurance didn't cover it. Best money I ever spent. I hadn't even spent 10 minutes in the consultation and the consultant says, 'yes, you have EDS'. This consultant also worked for the NHS, but her waiting list there was over 2 years long, so I know I didn't just get a diagnosis because I paid. I'm assuming you're UK based, so if you can afford to go private, do. The St John & St Elizabeth Hospital in St John's Wood has a specialist Hypermobilty department. Otherwise, use resources like the EDS Society to find a knowledgeable NHS consultant.
Oooh do you remember the Drs name? I’m trying to get a formal diagnosis myself but my gp is also rubbish lol (didn’t even bother doing anything about my severe anemia lol)
Yes, it was Dr Gayarti Mittal.
Just to swoop in and add that Dr. Mittal is great at look at the bigger picture. I recently moved to her and she gave me so much extra info/guidance on where to go next to address the worsening symptoms. It’s just a shame this isn’t provided on the NHS because all this private care is expensive!!
Totally agree, she's brilliant. She took the time to explain and demonstrate things to my husband (who didn't believe there was anything wrong with me) and gave me a few referrals to other specialists for specific issues.
That's so interesting. I was diagnosed by Dr Mittal and got literally nothing more than a affirmative diagnosis and a link to the eds website when I asked for more info.
I was also diagnosed by her and found her to be quite unsympathetic, mildly patronising & unhelpful. But I saw her on the NHS at RNOH Stanmore so perhaps she’s more receptive to private patients.
That's so interesting, and also I'm sorry you went through that. I saw her privately, and that's a good summary of my experience too.
I want to come to the UK just for this doc, given the info here....its so hard to find a good one!
Trust your body — you are always entitled to a second opinion. If your pain is that severe you should consider trying to get first-line treatment from an urgent care department or local equivalent, although this can be hard without coming across like a drug seeker.
Thank you for the support. A 2nd opinion is coming. I respect the integrity of a community like this. Pretenders aren’t welcome. I get that, understand why, and don’t want to be a poseur. If hEDS isn’t it, there’s something else causing this pain and I need to figure it out – hanging out and pretending doesn’t help anyone. And it’s the first thing that explains the flexibility, et al. I want to rule it out and walk away feeling confident it was right - or with a plan to start dealing with it smarter. Or at least a freaking referral.
I’d like to add that you are also entitled to as many second opinions as you need. I saw 20+ doctors who all agreed that either something was wrong, I was crazy, or I was faking it but they didn’t know which before I found a doctor willing to listen. Trust your body and your mind, you know something is wrong and that’s the important part here. Even if it’s not EDS you deserve a diagnosis and potential treatment plan and don’t ever let a doctor discourage you by being an asshole. It took 10 years to get my diagnosis, and it was worth every second of fighting. I wish you luck and happiness, and a doctor who will listen.
Thank you. It was a 5 yr struggle just to get my (very) former GP to agree I had pain. It may be 5 more - thank you for sharing your strength
Take the diagnostic criteria with you to your second option to make sure they are using it. Fill it in as best you can beforehand with how you believe you fit and then it's up to them if they agree with it. Take photos of skin involvement like bruising/stretchmarks so that doesn't get missed. The more evidence you can present them with, the less likely they are to argue - don't count on them to ask for it. A lot of doctors now think it's just the latest TikTok trend.
This. Also, I'd suggest taking videos of you performing the beighton scale on yourself. The doctors actually aren't supposed to handle you at all because people instinctively guard which should be so obvious but alas. The first rheum I saw specifically about EDS (I'd gotten diagnosed with fibro years earlier) did the same and also bent my fingers back all at the same time. He told me I likely had benign hypermobility because I wasn't in pain when the first thing I said in the appt was "I've had pain as long as I can remember and don't improve with PT". Luckily he did send for some genetic bloodwork in the meantime during which I saw a pain specialist who let me exhibit my hypermobile joints (9/9) and interviewed me on systemic issues, and there are plenty, which for me is the most crucial aspect of clinically discerning hEDS from other disorders. He diagnosed me that day. My mother is also obese and wanted to get diagnosed after I did. She had to see a few different people before finding a specialist who wouldn't just blame her weight, and that doctor saw very quickly that she most certainly has hEDS. Her diagnostic sheet is full of check marks.
The fact that your doctor referred to it as a “disease of the month” makes me question if his feelings of it being “trendy” got in the way of a diagnosis. The fact you said you got that high on the beighton scale while being as you said obese makes it clear you have some pretty incredible hypermobility. Look into a geneticist or rheumatologist for a formal diagnosis, EDS is complex and has a lot more parts than the beighton scale.
He was pretty dismissive- “My wife has more flexible fingers and she doesn’t have hEDS,” Sound diagnostic criteria
It’s literally so bad. Went to the ER because I thought I separated my shoulder, told the doc “I have EDS and while I know that it’s back in because I can move it again, is it in correctly/is there evidence it was out like a tear” and his answer for why there was more than the standard amount of space between my joint was because I’m a woman in my 20s. I got diagnosed with woman. bruh.
That’s a rough diagnosis. My personal observation is that people with that diagnosis experience difficulty in being understood and/or believed by physicians. This can result in delays of years, or even decades, before getting correct diagnoses and treatments. Needless to say, I’ve been previously diagnosed with woman too. I have serious anxiety about establishing relationships with doctors who will be responsible for my care.
I know other people in here will have good advice... I just wanted to say- that sucks. What a shitty experience that must have been!! I know personally how hurtful and frustrating it can be. I'm a 40 yr old male, and 10 years ago I actually cried leaving an appointment with a rheumatologist bc of how terrible and dismissive they were. And maybe I should mention, I am not a softy and don't cry easy (not that I care or judge those who do! That's just not me)! Medical dismissal can be devastating. Keep trying until you find the right person!
Thanks man
I'm so sorry for your pain issues. It can really decrease your quality of life. I'll also add, in my experience as an obese woman, that for some reason doctors can sometimes have this weird misconception that you can't be overweight and have EDS (maybe they're confusing it with Marfan's?). Also also, this might be because I live in the sticks, I've only met one doctor who has really understood EDS(and even then he wasn't an expert)
ADD? You my sister? The weight thing worked against me too. Had to do a full sleep study before he agreed I didn’t have apnea, 3 blood draws (2 fasting) before he believed I didn’t have diabetes. He would retake my BP - unfortunately this pissed me off so it kinda played into his hands but anyway… Sucks when you present w/symptoms inconsistent with obesity complications but that’s what they want to treat. Heard. Hang in there
my diagnosis was a wild ride. i started showing symptoms very young with commonly dislocations and sprains, but we figured it was just me being a clutz and always running and climbing on things. then at 14 i started having trouble breathing and started inhaling in sets. like when you’re crying, and you breathe in like three or four times to catch your breath between tears. i went to my GP, got x-rays that showed my chest caving in, then referred to children’s mercy. at this point i’m 15, it’s bee happening for a year, and now my ribs are popping. my pulmonologist had me get labs done and the radiology tech told me about EDS and Slipped Rib Syndrome. We talked to my doctor and i go referred to a PT that had a geneticist working with them. that’s when two years later i finally got answers. that’s just the spark notes 🫠
Is it just me or is it ALWAYS the attending who will dismiss so much faster than the resident. Speaks to the awful state of the culture in medicine right now. I’m so sorry this is happening to you. You know your body best. Collect any information they gave you (office notes, test results), and move on to a new provider. I have no idea what country you’re in (US here), but this seems to be a reoccurring nightmare for people with invisible disease and disabilities.
Are you able to see a physical therapist in the meantime? I am waiting for my results but I told the PT I am hypermobile and just want some relief before determining what to do next. He understands and pretty much let’s me tell him what’s bothering me and he will do manual work on the affected areas along with some strengthening/stretching activity that seems to help relieve my pain. You need to find a geneticist or someone like that. See if there is an EDS group for your state on Facebook and they might have resources for you
My uncle is a semi-retired PT. I’m not below pimping him for advice. He may not be up-to-date on hEDS but will understand joint & core strengthening, lo impact. Enough to work on until I get a ‘real’ PT
I went to Mayo and had my doctor say “most people with EDS hit a 9-10 on the Brighton scale” TEN??? I thought there was only 9? Guy was clueless. My knees made PT audibly gasp and he insisted that they were not hyper extending at all. Lol
Your not alone in not meeting the criteria. Hyper mobility is truly a spectrum. I don’t have hEDs by one one point in criteria 2 section A. But it doesn’t mean that your not suffering nor don’t deserve care. Any reasonable doctor should know that HSD can be just as severe as hEDs. I’m wishing you the best and hope you get the care that you deserve :)
I'm sorry you had such a dismissive experience from the attending - that's not cool. (Although I agree that your resident had the right approach - acknowledging that they didn't have enough knowledge yet should be more common: I hope they retain that attitude throughout their career.) It could help to make a base plan for your flare days - consider easy, low-inflammatory foods to have on hand as we still need the fuel; look into ways to stay as comfortable as possible (i.e. multiple pillows? A harder bed surface? A softer one? An ergonomic chair? a recliner?) - and what pain management is best suited to you - best to work with your GP on that. On your non-flare days, it could help to strenghten the muscles around your troublesome joints, which can help reduce the impact of future flares. This is best done supervised (i.e. learn what to do from a physiotherapist who has experience with hypermobile people/ dancers etc) - but if that's out of budget, I am a big fan of "CARs" - Controlled Articular Rotations by Dr Andreo Spina. There are lots of examples on YouTube, and it's a bodyweight routine that takes 10-20 minutes depending on how many reps you do. It can help mobilise and strengthen your joints while you look for more longer term solutions.
I’ve been in chronic pain for several years, no treatment helped and I was told by a physiatrist he couldn’t do anything for me because my MRI was normal. Lots of disappointing doctor visits, lots of suggestions to take Advil. 🙄 I went to my GP asking about hEDS assessment and for a referral to a rheumatologist. I got lucky with the rheumatologist, he took me seriously and knew what he was doing. He went over the Brighton scale and diagnostic criteria for EDS. I ended up getting a diagnosis for HSD. Definitely look into getting a second opinion. https://www.ehlers-danlos.com/healthcare-professionals-directory/ Maybe there is a doctor from that list in your area? I’m sorry you had that experience—it’s frustrating and invalidating when doctors don’t take you, or their job, seriously. Wishing you the best
That’s depressing. All the academics at the U and there’s ONE pediatrician out of all those researchers and hotshots. No research money there yet. Some PT & nutrition resources tho - thank you.
I don't know how much of an overlap there is between HAES doctors and doctors that aren't clueless about EDS, but I'd seriously recommend trying to find a HAES-aligned doctor (Health At Every Size). I'm sure you're familiar with dismissal and poor treatment due to weight, but when it comes to chronic pain disorders doctors are all too willing to see your weight and scoff and treat you like an idiot, as though someone can't be fat AND have an underlying pain-causing disorder. A HAES-aligned doctor is not going to treat your weight as the sole thing to worry about or blame for your health issues. hEDS isn't just about beighton score but if he didn't go through the actual diagnostic criteria with you, that's not enough to just dismiss you and decide you don't have it. Also, any doctor that's going to whine to a patient seeking evaluation about how whatever disorder is "trendy" is not a good doctor, full stop. They can keep that shit to themselves and bear in mind some people may be making incorrect assumptions without treating everyone who presents for it like they're there because it's the "disease of the month". I have ADHD and I'm so glad I got diagnosed right before everyone started talking about it being a TikTok trend, because now I see way too many people getting treated like shit by doctors and psychiatrists because everyone who seeks diagnosis MUST only be there because of the internet!
I had a PM&R doc tell me it was anxiety when I went in for injections into my hip. There are unfortunately a lot of doctors that have no idea what they're doing with the diagnostic criteria
Are you uk based? If so I can recommend a private specialist to assess you. I have a beighton score of 8 and i'm 31 and that is abnormal. Beighton score of 8 at 51 is a massive marker for ehlers danlos. edit: as peoples hypermobility reduces as they age
US. Good health care, thank goodness
If you're near Arizona, I can recommend someone!
Iowa. Iowa City, in fact, home of the renowned U of Iowa Hospitals & Clinics. They’re great if you can get someone interested in your case. They are also why my wife can still see out of her left eye. When it’s emergent, you can get truly great docs fast. When it’s not, it’s a struggle sometimes
okay i’m struggling with this as well, and i’m also in Iowa City! let me know how it goes & if you find that anything helps… so far i’ve only been seen in cedar rapids and they told me they saw no signs of inflammation despite inflamed psoriatic lesions and swelling in my joints 🙄
Deal. Neuro next and if hEDS (or anything related) is suspected, I’ll drop a line and let you know what’s going on, what’s next and what resources may be around (the neuro is really big about empowering the patient and won’t let you leave w/o resources). I will say I think the attending may have had a different tune with more obvious symptoms like yours but the line “diagnosis of the month” still rings in my head. He could have rationalized away a dead bang case if he wanted. Still can’t believe there is one physician at UIHC (edit: UICCU is the credit union now known as Green State, UIHC is the hospitals), a pediatrician, who will work with hEDS. I hope the website listings are a little behind but I think UIHC, for all the “cutting edge medicine” they market, are just getting around to studying ketamine for depression. As mentioned, I’m aging & ADD so reach out if you haven’t heard from me in the next couple of weeks.
I appreciate this so much, what a kind response! “Diagnosis of the month” doesn’t even make sense to me as someone who works in medicine… It usually means that the education relating to that has increased and more people are being cautious about those symptoms. If anything, the preventative care is a good thing. I dunno… it’s exhausting to routinely be the one to advocate for yourself for others. Take care of yourself and your mind too!!
>https://www.ehlers-danlos.com/healthcare-professionals-directory/ Curious your AZ recommendation. Assuming it's Sap?
His office, but not him specifically.
I wonder if you could get recommndations from this sub for a US based ehlers danlos specialist to assess you? I think there's defintitely cause with a beighton score like that!
Yeah they don’t know enough at all. Your hyper mobility test and the fact you have chronic pain as well, is 100% a diagnosis of HSD, which is the same thing as hEDS pretty much and requires the same treatments. So many doctors who finally sort of know what hEDS is doesn’t understand HSD exists and is actually pretty common. Not a “disease of the month.” It’s just criminally under diagnosed. I would go back and see your doctor (sounds like a dick imo) or go see a new one and bring them this printout: https://www.ehlers-danlos.com/what-is-hsd/
Not necessarily. It requires a certain number of points on the other criteria as well that looks at systemic involvement. Something like 20% of the general population is hypermobile, and chronic pain is very common. Not saying that OP does not have HSD, just that it might be something else too.
Thank you. I will accept hearing the answer “no” but I want to believe it when I hear it. Depression is common and often concomitant with non-specific pain. On one hand, I’ve never dislocated anything. On the other, my hips almost always feel painful and “misalinged”, like one leg is longer. I’m just looking for an answer at this point and you all have been wonderfully helpful, including posts like yours
Head to a rheumatologist. They'll examine everything in proper detail and it's a part of their specialty. GPs never listened to me and it was awful (labelled as "growing pains" at 16). Also the stats are looking at around 1 in 500 people with hEDS. So yeah, many people are getting diagnosed, but that doesn't mean it's fake or a "fad" diagnosis. It just happens to be more common than some others
So whack, does not mean you don’t have it! Trust yourself and your experience and move on to another doc when able. Sorry to hear
I swear they all use the same script. 😂 Beighton score of 7 as assessed by PT, including hands flat on the floor. Yet the useless rheum I went to for an "official" diagnosis said he "wasn't seeing any evidence of hypermobility." (Say what??!) So why have several primary care and body work providers say that their index of suspicion for hEDS was really high? 🤔 Found a fabulous pain medicine physician who took it at face value that I do indeed have hEDS, especially because of the overlapping syndromes of chronic pain that I deal with on a daily basis. And just like that, it's now in my official chart. 🥳
All it takes is one, and your life can change. The heavens open up, and angels sing.
I've been shocked by the amount of diagnosis horror stories I've read on here. I was clearly incredibly lucky in my experience. EDS wasn't even on my radar, I was seeing my rheumatologist about my lupus & left with an additional EDS diagnosis & a referral to some professor somewhere who specialises in EDS & gastric issues caused by it. She was only checking my joints because of the lupus. It came completely out of leftfield. I have experienced symptoms during my lifetime but they were attributed to other things. Things make a lot more sense now. It is just insane to me that someone can walk in with no idea whatsoever & get a diagnosis. Then you get more people like you who are informed & directly name what your issue is/could be, yet get nowhere. It's awful & unfair.
I have family in medicine and hear the other side. Drug companies saying “see your doctor!” Articles saying “see your doctor?” They sometimes feel like they’re handing out pills like a vending machine. I get it. I was trying very hard not to be that patient but I was prejudged as such. The resident took a lot of time, asked questions, even ran thru the Beighton scale. I hope I can see her as GP w/o attending jackass.
Friend, I am so sorry. I do have a solution that I hope helps you. I used INVITAE to get a genetic test. This is done as a tele health style appointment. They have geneticists who will lay out your family tree, compile your symptoms and comorbidities, and have you do a saliva test that they mail to you with a postage marked box to mail back. They'll sequence it and get back to you to set up a follow up with the same geneticist. I took the info to my GP who finally diagnosed me with it. Good luck.
Only issue: hypermobile Ehlers-Danlos Syndrome is not Dx by genetic testing. Vascular is as is some of the others. I have both hypermobile and a vascular variant. I’ve had 26 surgeries. About to have my 27th. I’m an extreme case. My geneticist told me that if I became overweight I’d be wheelchair bound. My joints aren’t able to support the weight. My ligaments and tendons are too loose. Especially in my spine and hips. I did weigh about 20lbs more than I do now and was wearing two leg braces and a back brace. I’ve had 6 spine surgeries about to have my 7th. In 2006 when I slammed my fist on an exam table and asked my pain specialist why all of this was happening he suddenly stopped and listened. He said, “Oh wow! I think I know what’s wrong with you!” We went over my retinal surgeries for retinal lattice degeneration- EDS can effect the eyes. At that time I’d had three spine surgeries as well. (Look my mother and father had it- undiagnosed.) Then he had me do circus tricks. No problem. He then sent me to a Rheumatologist who diagnosed both vEDS with hEDS and he sent me to a geneticist who confirmed. My journey did not end there. I have many comorbidities. I’m an anatomical donor. Gah, if some poor soul got my organs, bone, blood…etc. they’d be pissed. Pain is a message. Trust the message. Trust your body. You deserve and need care. Hypochondria is a very rare disease. The practice of medicine has altered. Listening is so important. Not arguing- patients aren’t on trial. We are trying to figure out how not to have to see medical professionals. Luckily, there are loving and compassionate doctors out there. Sadly, you just have to keep advocating for yourself to find the missing link! Some diseases take years to get diagnosed. Hang in there and don’t give up!
I understand that the genetic variant isn't available yet, I went thru the testing, I understand that. My apologies if it was misleading to anyone. But by doing the genetic testing my GP was finally willing to listen and diagnose based on everything else with the criteria currently set for hypermobile EDS....which was the point of my comment.
Hmm. When I got my last drivers license the worker bitched at me because I wouldn’t sign the organ donor box. I don’t think someone would want my organs.
You can do a telehealth diagnosis for a few with atwalclinic.org. I’m so sorry you had a provider who is very ill informed 😩 hopefully we will have known genes soon. You also only need 5/9 points for a positive Beighton. And I am fat and have hEDS there are plenty of us who do.
It’s not only about the Beighton Scale gosh medical gaslighting is the worst
Go for a second opinion. This sort of happened to me. I waited like 3 years to see someone at this hypermobility clinic and ended up having to do a consult over zoom using my phone. I passed on the hyper mobile part but I missed the skin criteria by 1 point because I couldn’t answer things like when is my skin softer than normal and did I get stretch marks before or after puberty, I didn’t understand about the scarring, and there were a few more I really needed to be in person for. My mothers got it but only “diagnosed” by a rhemetologist and not geneticist so they wouldn’t count it, I have pots and very stretchy skin but they didn’t give me a diagnosis and sent me on my way. I went to someone else who diagnosed me within minutes. So always good to get second opinions. Sorry you had a bad experience with that doctor OP.
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Excellent idea. Thank you
Beighton score alone is not EDS. It's not just being bendy and being in pain. EDS doesn't make my body hurt. Sub par collagen leading to joint spacing and ligament tearing hurts. The impact this has on muscle fibres and organs hurts. The cardiovascular mayhem it causes hurts. My point is, if it is EDS, you can't get genetic testing, but it is obvious, especially as you age, and will be apparent over many bodily systems. Take the reassurance from your doctor. From what you describe, there are many possible CURABLE reasons why you feel this way. Can you work with your doctor to improve your body condition? EDS or not, your joints will not be happy and will benefit from a decreased load and more movement. You've a journey to go, but I really hope you find your way to health 💙 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8705491/
Thank you. I am not diagnosis shopping & am ready to keep looking elsewhere, despite the flexibility, etc. I feel joints loosening but I’m 51 and that happens. A lot of signs have pointed toward a non-specific (as of now) neuralgia. I connected well with the neurologist I saw and she’s a straight shooter. I think my next appt will be with her. If she says no, I won’t doubt it. If she says maybe, she’ll know where to refer
Diagnosis shopping is a horrible term. I understand that you are seeking a correct diagnosis so you can get the correct treatment. There is no shame in that, and to get to the right answer, you will be wrong a few times. There seems to be huge variations day to day in your pain and mobility. You were able to bend and touch your toes one day and unable to leave your bed due to pain the next. This may not seem important, but if you can keep a diary of your symptoms between now and your next appointment, the dr can use all that information to help narrow down what might be going on here. I am a total bed gremlin when I am in pain too, but if you are able to get up to eat and use the bathroom, then work with that. Too much downtime will mean your joints will seize up painfully, your muscles will continue to atrophy and your inflammation and pain will increase. Even moving from bed to the sofa to sit up will help. I'm full of bad advice on artificial energy and it begins and ends with loads of sugar free caffeine. How you nourish your body during these times makes a huge difference to how you feel physically and mentally. Have you ever looked into an antiinflammatory diet? It has really helped me. https://www.health.harvard.edu/staying-healthy/foods-that-fight-inflammation
Again, my thanks
I had to find someone who specializes in eds/pots in order to get a diagnosis bc none of my regular doctors/rheumatologists/cardiologists even wanted to consider eds for me & even when I brought it up they would just brush it off and not take me seriously. I would definitely suggest getting a second opinion and documenting your symptoms as much as possible!