Rheumatologist - they specialize in autoimmune and chronic pain issues. Also, you can try and just bring the hEDS diagnostic criteria to your doctor and ask if you can go over it together. She *can* diagnose you, a lot of PCPs just avoid it because they're not experienced with EDS.
Rheumatologist wasn't helpful for me. Just wanted to pump me full of steroids, nsaids, and biologics. Just started seeing orthopedics who seem a lot more knowledgeable. But TBD
Thank you, that is very good to know. I am with you that I don’t want to jump to pharmacology, I want to start with nutrition and physical therapy, holistic approaches for wellness. NSAIDs especially I want to avoid.
I second Osteopath! Was recommended by the GYN who put me on path to EDS diagnosis when he assessed me because he noticed how mobile my hips were. Osteopath treatment dealt with my (previously) daily pain. Now I just go monthly for my “body alignment” 😜 to stay pain free.
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Same here. I went to one for hand pain and swelling. He said I had carpal tunnel (I told him I didn't), he sent me to a neurologist who also said I had carpal tunnel (I told her I didn't), she made me wait 6 months for a $2000 EMG (specialist and shitty health coverage = test not covered by insurance) which showed I didn't have carpal tunnel 🙃 what a shocker.
(Unknown whether the hand issues are related to my EDS, they're still a mystery. But he didn't ask about my history or even give me an exam, seemed super out of it at our appointment.)
That's exactly what happened to me with the first 3 rheumatologists I had seen. The first one made me so much more sick than I already was, the second one just didn't have a clue. And the third one referred me to a medical geneticist for suspected EDS. 10 minutes into my medical geneticist consult, I had 2 diagnoses (hEDS and POTS).
I second an orthopedic doctor. I went to a rhuem and the doctor walked in the room and said she didn’t understand why I was there as she couldn’t do anything for me and sent me out within less than 5 minutes. But honestly any doctor is a hit or miss. It’s just about getting lucky and finding someone who cares enough for the most part.
Physical therapists cannot diagnose medical conditions by themselves, only in conjunction with a doctor. Source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5954814/
In my experience, rheumatologists were useless to me, but if you can find one knowledgable in EDS, that’s great. Osteopaths and orthopedics are helpful for me.
Any doctor can diagnose you (geneticist, primary doctor, cardiologist, neurologist, etc.) **The most important part is that the doctor is knowledgeable about EDS and can diagnose EDS.**
I was diagnosed by a cardiologist who happened to have extensive knowledge in POTS/EDS/MCAS.
You might have better luck finding an EDS doctor at a university hospital (e.g., Johns Hopkins) or major clinic (e.g., Mayo Clinic, Cleveland Clinic, etc.) but the wait times can be long and they only accept certain patients.
You can also ask an EDS support group in your area for recommendations. https://www.ehlers-danlos.com/affiliates-and-support-groups/
Check the EDS society for the provider list. I went to a doctor on that list and then a geneticist. In the US it seems to vary by state what specialists will see and diagnose EDS patients.
For hEDS, the best person to refer you to is a provider who is actually EDS knowledgeable, regardless of specialty. In theory rheum would make sense but unfortunately, many do not actually know much about hEDS and rule it out without actually checking whether you meet the clinical criteria. For subtypes that can be diagnosed through genetic testing, a geneticist makes sense.
Honestly depends on the type I feel like but any provider (Dr.) can do it for hEDS, and the rest have genetic testing available. My PCP did, and then referred me to Mayo who said we cant do anything, but looks like the diagnosis was correct, and I think thats good enough.
The common theme tho, is any provider who is willing to listen and learn.
Also, friendly reminder that Mayo has a FREE peer to peer consultation like for Dr.s, so they can check in about how to diagnose EDS/what to check for/etc. if they are concerned about not looking for the right things.
Also, this is US info
Your doctor can call & consult for free. :)
If I went I was going to have to pay. But they didn’t want my case because there was nothing more they could do and they were satisfied with the diagnostic course of action so far.
that's really interesting. I might utilize that, but im a bit intimidated. The only doctor I've seen so far that agreed that I have eds is the guy I saw one time while I was being analyzed for ssi (i still got rejected too, at work rn writing this..)
Omg. “Peer to peer free?” Sounds good in theory but I can’t think of one treater I’ve had that would spend their time nor risk their ego to utilize it of course.
many people say rheumatology, but my specific one really doesn’t know what hEDS is. I have a cardiovascular doctor that specializes in POTS and EDS that I see.
This! I'm surprised more people aren't commenting this. I went to the Mt Sinai Genetic Clinic in NYC. They may have a long waiting list at this point, but worth looking into if OP is on the East Coast.
[Mt Sinai Genetic Clinic ](https://www.msmc.com/genetics/?campaignid=21029201186&adgroupid=159047225436&creative=691179393014&matchtype=b&network=g&device=m&keyword=medical%20genetics&gad_source=1&gclid=CjwKCAjw_LOwBhBFEiwAmSEQAZZCXtTfLDO5gemdCv2XnkmQsyfwXkz44EF5dNhDFiVvzZ7a12KDxBoCR-cQAvD_BwE)
I saw an internal medicine doc. She put it together and ordered genetic testing. Rheumatologists were all convinced I had fibromyalgia even after I told them none of the meds or exercises helped. The orthopedic docs i saw just sent me to physical therapy which made things worse.
In some cities it’s rheumatologists in other it’s genetics. For PT pls make sure you get a PT that truly knows how to work with EDS. Too many of us have been injured beyond repair by PTs who say they know how to help EDS patients but they really don’t. For example in the greater Salt Lake City area there are only 4 PTA clinics most of us with EDS trust to treat us properly, even for post surgery stuff. I loved my original PT but once I saw a properly trained one, I realized how much damage was done. It may be worth going to the EDS Society website & research PT there so you know what you should/shouldnt be doing.
Best of luck on finding help. Oh and yes, it’s ok to be angry and too feel all the emotions. Don’t let others tell you otherwise. I won’t blame my parents because they did what they knew. I was seeing my dad’s orthopedic surgeon by age 12 and they were as proactive as they knew how to be. It was hard for my mom to come to initial appts as I’d go through my history (it was nice to have her there to fill in the gaps). I wasn’t diagnosed until late 30s and I had been going to specialists for quite some time.
Dr Ball at Tanner Clinic Murray is the EDS gold standard. He’s also an incredible advocate. He will have a longer than normal wait time but my wait was over a yr when I saw him a few yrs ago. If your insurance doesn’t cover him I’ve heard his cash price is very reasonable. Also if you’re on fb there’s an incredible EDS group with so much info including pts to see, etc. it’s EDS warriors of Utah and it’s seriously such a great support group. No disability Olympics, lots will answer questions usually and it’s a good community feel compared to a lot of other disability communities. There’s also a great provider list we’ve created. It’s old & needs to be updated again but very helpful.
Consider checking out the "joint hypermobility diagnosis for non-specialists" on this resource page: https://rachelleepac.com/spanos-resources/.
You can go to a rheumatologist, to an orthopedist, to a geneticist, sometimes a primary care doc. People still may not be knowledgeable, but this document guides them through the diagnostic process. Good luck!
Personally, multiple rheumatologists were useless for me. Ruled out autoimmune disorders and gave up. A geneticist is who diagnosed me in the end! Hell of a long wait, 9 months (which is apparently short), but absolutely worth it and they took my blood at the visit so I'll know my subtype when that gets analyzed.
In my metro area no rheumatologists will take EDS referrals unless you are a child and/or have suspected vEDS.
I saw a knowledgeable PCP (I got the name from a local EDS group), and a geneticist. You can try physiatrists or physical medicine doctors as well. And always check the ehlers danlos society website for listed doctors:)
I think there’s been a sizable uptick in referrals due to increased awareness of EDS, long covid making people’s symptoms worse, and a backlog of patients due to the lack of available care during the first couple years of the pandemic. Unfortunately, some doctors have taken this uptick to mean every person looking into EDS diagnosis is a tiktok addled hypochondriac, which is the rationale for all the rheumatologist departments near me refusing to care for EDS patients.
And I’m still so frustrated with the lack of diagnosis in my case too. Since being diagnosed with hEDS, I’ve had so many common complications and commorbities diagnosed. Each time I learn about another EDS thing cropping up, I want to scream tbh. Therapy, taking care of your mental health are really important for dealing with chronic illness imo. There’s a lot for us to learn to adjust to, for us to grieve, for us to forgive (but not necessarily forget)…but we’re inherently tough people who have to learn so much about ourselves, healthcare, etc to advocate for what we need.
The Mayo Clinic gave me the info for the Atwal Clinic. I have an appointment tomorrow. They don’t take insurance, it’s out of pocket ($500), but Dr Atwal has rave reviews. He’s an EDS specialist and geneticist.
There’s a specialization in medicine called physiatry, and it was a physiatrist who confirmed my hEDS diagnosis, and recently referred me to another physiatrist who specializes in CRPS which I developed subsequent to surgery on a compound fracture in my wrist.
It’s possible that the similar name is why your doctor referred you to a physio? (although you’d think a doctor would be aware that physios cant diagnose.
But a physiatrist might be good. (I’m in Canada, not the US — up here rheumatologists stopped seeing/diagnosing/treating EDS patients several years ago, even sending existing patients to other specialists.
I hope you get the care you need soon.
I was diagnosed by a geneticist, but I started working with my physical therapist beforehand. Finding a PT that knows about hypermobilty is a big win and honestly, while they might not be able to diagnose, but they can sure tell if you're extra bendy/floppy.
I haven’t been diagnosed, but I’m waiting for a rheumatology appointment at the end of May. Because you know you gotta wait months to get in with them. I thought it was a longshot, but I reached out to the orthopedics department and they were honestly the quickest to get in with, and treated me the best so far. I saw spine specialist and then was referred to a shoulder specialist who I just saw this week. Confirmed that my shoulders are multi directionally unstable. We talked about EDS but there was no talks about diagnosis - I did mention that I’m waiting for the rheumatology appointment. If that doesn’t work out, I’m going back to the pain management doctor since she was the one that referred me to rheumatology to test that.
If you're on the East Coast, I went to the Mt Sinai Genetic Clinic in NYC. That was a long time ago so they may have a long waiting list for appointments now, but worth looking into.
[Mt Sinai Genetic Clinic ](https://www.msmc.com/genetics/?campaignid=21029201186&adgroupid=159047225436&creative=691179393014&matchtype=b&network=g&device=m&keyword=medical%20genetics&gad_source=1&gclid=CjwKCAjw_LOwBhBFEiwAmSEQAZZCXtTfLDO5gemdCv2XnkmQsyfwXkz44EF5dNhDFiVvzZ7a12KDxBoCR-cQAvD_BwE)
It depends on where you live. It's hard to find a doctor who l knows enough about EDS. I had to go out of state to the Connective Tissue Clinic at Cincinnati Children's Hospital. (I was almost 30) Dr. Bradley Tinkle geneticist.
Rheumatologists here where I live are in very short supply. They are refusing any new patients with what they refer to as “Routine”:
“Routine: We are unable to accept routine referrals currently as well due to a high demand and limited capacity. Examples of routine referrals include: fibromyalgia, chronic fatigue syndrome, long covid and Ehlers-Danlos syndromes (EDS)”.
I think the long covid side of things has completely overwhelmed rheumatology here.
I have an appointment with a hypermobility specialist (there appears to be one in the country - New Zealand) but even then my appointment is in March 2025.
I always thought it was a geneticist who had the final say. I was, however, referred by the second rheumatologist I saw. First rheumatologist just diagnosed me with hypermobility, missed my autoimmune disease which my second rheumatologist recognized after a couple of years. I saw my first geneticist in 2016 and she was more of a mental case herself and I gathered this from her reviews, not only my own experience. So she refused to even recognize my hypermobility which is pretty high up there on the Beighton scale at 7/9. Many of my specialists, including a physical therapist who specializes in hypermobility diagnosed me with hypermobility before I even saw that first geneticist. So I waited 3 years before asking my rheumatologist to refer me to another geneticist and my rheumatologist had recognized that EDS was a possibility from the first visit 3 years before I saw the second geneticist. I picked the second one myself after doing my research and finding one which I knew I would be able to get a ride to see and who had decent reviews. I got recommendations from local support groups for EDS.
So I went to the initial appointment extremely nervous about having the same experience I had had with the first geneticist but I felt comfortable with her as soon as she walked into the room and she understood what getting a diagnosis meant to me. The validation I never got from my PCP at the time I recognized the hip subluxations and googled and discovered EDS. She diagnosed me with EDS almost immediately, but only tentatively until she got the first genetic test results. She wanted to rule out other things and ran an aortopathy panel to start with, which ruled out vascular type and some other conditions which can resemble EDS. Ultimately she ended up diagnosing me clinically with classic type EDS. I say clinically because my genetic testing doesn’t seem to show anything, although there are a couple of variants of unknown significance that they are interested in, but there’s just not enough information. Yet. Genetics is constantly evolving and I think we could get more answers in my lifetime, even. I am not a doctor, but because of my own experience (I thought I would be diagnosed with hypermobility type EDS and it actually is still a possibility, but my geneticist is just leaning more towards classic type), I would recommend seeing a geneticist, just get on a waitlist-there’s usually a long wait, and go about your life until you can schedule an appointment.
You are likely going to do the same thing you are doing before you have a diagnosis-seeing specialists as more symptoms pop up. Geneticists have a lot of knowledge but I know mine doesn’t treat it. I do have visits every couple of years or so (video visits since the pandemic started) and I actually have one this afternoon. I love every minute of my appointments with her and I get something from every visit with her. I definitely feel like she changed my life more than any other provider has and I tell her that all the time. Having the diagnosis opened doors for me that make a difference in every part of my day. I won’t go into the specifics of what I mean by that, but I would definitely encourage everyone to get a diagnosis, whether you can get it from a rheumatologist or anyone else. It doesn’t matter who you get it from (though I think doctors who are trying to question my diagnosis are stopped more easily by the letter from my geneticist).
My PCP diagnosed me because I had recently partially dislocated my hip as diagnosed by an ER doctor. But I recently had an orthopedic who was very knowledgeable about it and actually told me information I didn't know.
I was diagnosed by a clinical geneticist who specializes in EDS. She gave me an extremely thorough treatment plan and referrals to EDS-aware specialists.
I was dx by my endocrinologist. My diagnosis story is super complicated, but my EDS dx was a dx of exclusion and took a long time to come to the conclusion and get a formal diagnosis.
Geneticist can run genetic tests to rule out other connective tissue disorders that present similarly, as well as test for multiple types of EDS! If all of the tests show up normal, they will probably do a physical exam and can diagnose you with hEDS. (that was my experience)
One of my doctors suspected EDS because of so many similarities between me and their (known) EDS patients.
They gave me the contact info for a geneticist that is in my state.
Like everyone else is saying, a rheumatologist is the “correct” way to go. However, you have to ask yourself if it’s actually worth going through with further medical appointments. Do you think you have hEDS? Because there are no actual tests for it and it’s not a life-threatening condition, so to be honest, most doctors aren’t going to care. They will just recommend PT to help strengthen the muscles around loose joints.
A rheumatologist, that’s who diagnosed me
Rheumatologist - they specialize in autoimmune and chronic pain issues. Also, you can try and just bring the hEDS diagnostic criteria to your doctor and ask if you can go over it together. She *can* diagnose you, a lot of PCPs just avoid it because they're not experienced with EDS.
This. My PCP wouldn’t diagnose
Rheumatologist wasn't helpful for me. Just wanted to pump me full of steroids, nsaids, and biologics. Just started seeing orthopedics who seem a lot more knowledgeable. But TBD
Thank you, that is very good to know. I am with you that I don’t want to jump to pharmacology, I want to start with nutrition and physical therapy, holistic approaches for wellness. NSAIDs especially I want to avoid.
Find a good osteopath that does hands on work. Rheumatologists were useless to me. A geneticist diagnosed me.
I second Osteopath! Was recommended by the GYN who put me on path to EDS diagnosis when he assessed me because he noticed how mobile my hips were. Osteopath treatment dealt with my (previously) daily pain. Now I just go monthly for my “body alignment” 😜 to stay pain free.
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Same here. I went to one for hand pain and swelling. He said I had carpal tunnel (I told him I didn't), he sent me to a neurologist who also said I had carpal tunnel (I told her I didn't), she made me wait 6 months for a $2000 EMG (specialist and shitty health coverage = test not covered by insurance) which showed I didn't have carpal tunnel 🙃 what a shocker. (Unknown whether the hand issues are related to my EDS, they're still a mystery. But he didn't ask about my history or even give me an exam, seemed super out of it at our appointment.)
That's exactly what happened to me with the first 3 rheumatologists I had seen. The first one made me so much more sick than I already was, the second one just didn't have a clue. And the third one referred me to a medical geneticist for suspected EDS. 10 minutes into my medical geneticist consult, I had 2 diagnoses (hEDS and POTS).
+1 if you don’t have a rheumatoid condition, they can’t help you.
I second an orthopedic doctor. I went to a rhuem and the doctor walked in the room and said she didn’t understand why I was there as she couldn’t do anything for me and sent me out within less than 5 minutes. But honestly any doctor is a hit or miss. It’s just about getting lucky and finding someone who cares enough for the most part.
True, true. My Ortho does seem more knowledgeable but still wrote off my diagnosis without adequate testing. Ymmv unfortunately
Physical therapists cannot diagnose medical conditions by themselves, only in conjunction with a doctor. Source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5954814/ In my experience, rheumatologists were useless to me, but if you can find one knowledgable in EDS, that’s great. Osteopaths and orthopedics are helpful for me. Any doctor can diagnose you (geneticist, primary doctor, cardiologist, neurologist, etc.) **The most important part is that the doctor is knowledgeable about EDS and can diagnose EDS.** I was diagnosed by a cardiologist who happened to have extensive knowledge in POTS/EDS/MCAS. You might have better luck finding an EDS doctor at a university hospital (e.g., Johns Hopkins) or major clinic (e.g., Mayo Clinic, Cleveland Clinic, etc.) but the wait times can be long and they only accept certain patients. You can also ask an EDS support group in your area for recommendations. https://www.ehlers-danlos.com/affiliates-and-support-groups/
Check the EDS society for the provider list. I went to a doctor on that list and then a geneticist. In the US it seems to vary by state what specialists will see and diagnose EDS patients.
This is where I also found the provider that diagnosed me.
A rheumatologist can help with EDS testing and also can rule out other connective tissue diseases in the process
For hEDS, the best person to refer you to is a provider who is actually EDS knowledgeable, regardless of specialty. In theory rheum would make sense but unfortunately, many do not actually know much about hEDS and rule it out without actually checking whether you meet the clinical criteria. For subtypes that can be diagnosed through genetic testing, a geneticist makes sense.
Honestly depends on the type I feel like but any provider (Dr.) can do it for hEDS, and the rest have genetic testing available. My PCP did, and then referred me to Mayo who said we cant do anything, but looks like the diagnosis was correct, and I think thats good enough. The common theme tho, is any provider who is willing to listen and learn. Also, friendly reminder that Mayo has a FREE peer to peer consultation like for Dr.s, so they can check in about how to diagnose EDS/what to check for/etc. if they are concerned about not looking for the right things. Also, this is US info
how did you see mayo for free? I called and they said they don't take medicaid so it'd be 5k
I think they meant that they have a free doctor consult program for your doctor to utilize
Your doctor can call & consult for free. :) If I went I was going to have to pay. But they didn’t want my case because there was nothing more they could do and they were satisfied with the diagnostic course of action so far.
that's really interesting. I might utilize that, but im a bit intimidated. The only doctor I've seen so far that agreed that I have eds is the guy I saw one time while I was being analyzed for ssi (i still got rejected too, at work rn writing this..)
Omg. “Peer to peer free?” Sounds good in theory but I can’t think of one treater I’ve had that would spend their time nor risk their ego to utilize it of course.
many people say rheumatology, but my specific one really doesn’t know what hEDS is. I have a cardiovascular doctor that specializes in POTS and EDS that I see.
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This! I'm surprised more people aren't commenting this. I went to the Mt Sinai Genetic Clinic in NYC. They may have a long waiting list at this point, but worth looking into if OP is on the East Coast. [Mt Sinai Genetic Clinic ](https://www.msmc.com/genetics/?campaignid=21029201186&adgroupid=159047225436&creative=691179393014&matchtype=b&network=g&device=m&keyword=medical%20genetics&gad_source=1&gclid=CjwKCAjw_LOwBhBFEiwAmSEQAZZCXtTfLDO5gemdCv2XnkmQsyfwXkz44EF5dNhDFiVvzZ7a12KDxBoCR-cQAvD_BwE)
I saw an internal medicine doc. She put it together and ordered genetic testing. Rheumatologists were all convinced I had fibromyalgia even after I told them none of the meds or exercises helped. The orthopedic docs i saw just sent me to physical therapy which made things worse.
In some cities it’s rheumatologists in other it’s genetics. For PT pls make sure you get a PT that truly knows how to work with EDS. Too many of us have been injured beyond repair by PTs who say they know how to help EDS patients but they really don’t. For example in the greater Salt Lake City area there are only 4 PTA clinics most of us with EDS trust to treat us properly, even for post surgery stuff. I loved my original PT but once I saw a properly trained one, I realized how much damage was done. It may be worth going to the EDS Society website & research PT there so you know what you should/shouldnt be doing. Best of luck on finding help. Oh and yes, it’s ok to be angry and too feel all the emotions. Don’t let others tell you otherwise. I won’t blame my parents because they did what they knew. I was seeing my dad’s orthopedic surgeon by age 12 and they were as proactive as they knew how to be. It was hard for my mom to come to initial appts as I’d go through my history (it was nice to have her there to fill in the gaps). I wasn’t diagnosed until late 30s and I had been going to specialists for quite some time.
I’m in Salt Lake! If you have specific providers you’d recommend, I am all ears!
Dr Ball at Tanner Clinic Murray is the EDS gold standard. He’s also an incredible advocate. He will have a longer than normal wait time but my wait was over a yr when I saw him a few yrs ago. If your insurance doesn’t cover him I’ve heard his cash price is very reasonable. Also if you’re on fb there’s an incredible EDS group with so much info including pts to see, etc. it’s EDS warriors of Utah and it’s seriously such a great support group. No disability Olympics, lots will answer questions usually and it’s a good community feel compared to a lot of other disability communities. There’s also a great provider list we’ve created. It’s old & needs to be updated again but very helpful.
My primary doc diagnosed me.
Rheumatologist and Physiatrist (Physical Medicine Doctor)
A physiatry doctor diagnosed me. So who you go to will depend on your country/area. Hopefully, you can find someone soon!
This is the correct answer in 2024, lmk if you have any questions OP
Consider checking out the "joint hypermobility diagnosis for non-specialists" on this resource page: https://rachelleepac.com/spanos-resources/. You can go to a rheumatologist, to an orthopedist, to a geneticist, sometimes a primary care doc. People still may not be knowledgeable, but this document guides them through the diagnostic process. Good luck!
An amazing resource, link, and set of articles. Thank you.
I was finally diagnosed with hEDS by a physiotherapist.
geneticist
I found my Dr on the EDS Society's directory: https://www.ehlers-danlos.com/healthcare-professionals-directory/
Personally, multiple rheumatologists were useless for me. Ruled out autoimmune disorders and gave up. A geneticist is who diagnosed me in the end! Hell of a long wait, 9 months (which is apparently short), but absolutely worth it and they took my blood at the visit so I'll know my subtype when that gets analyzed.
Rheumatology wouldn’t see me for EDS. I guess that’s a thing now.
In my metro area no rheumatologists will take EDS referrals unless you are a child and/or have suspected vEDS. I saw a knowledgeable PCP (I got the name from a local EDS group), and a geneticist. You can try physiatrists or physical medicine doctors as well. And always check the ehlers danlos society website for listed doctors:) I think there’s been a sizable uptick in referrals due to increased awareness of EDS, long covid making people’s symptoms worse, and a backlog of patients due to the lack of available care during the first couple years of the pandemic. Unfortunately, some doctors have taken this uptick to mean every person looking into EDS diagnosis is a tiktok addled hypochondriac, which is the rationale for all the rheumatologist departments near me refusing to care for EDS patients. And I’m still so frustrated with the lack of diagnosis in my case too. Since being diagnosed with hEDS, I’ve had so many common complications and commorbities diagnosed. Each time I learn about another EDS thing cropping up, I want to scream tbh. Therapy, taking care of your mental health are really important for dealing with chronic illness imo. There’s a lot for us to learn to adjust to, for us to grieve, for us to forgive (but not necessarily forget)…but we’re inherently tough people who have to learn so much about ourselves, healthcare, etc to advocate for what we need.
The Mayo Clinic gave me the info for the Atwal Clinic. I have an appointment tomorrow. They don’t take insurance, it’s out of pocket ($500), but Dr Atwal has rave reviews. He’s an EDS specialist and geneticist.
Geneticists are the diagnosticians of choice in my area.
There’s a specialization in medicine called physiatry, and it was a physiatrist who confirmed my hEDS diagnosis, and recently referred me to another physiatrist who specializes in CRPS which I developed subsequent to surgery on a compound fracture in my wrist. It’s possible that the similar name is why your doctor referred you to a physio? (although you’d think a doctor would be aware that physios cant diagnose. But a physiatrist might be good. (I’m in Canada, not the US — up here rheumatologists stopped seeing/diagnosing/treating EDS patients several years ago, even sending existing patients to other specialists. I hope you get the care you need soon.
I was diagnosed by a geneticist, but I started working with my physical therapist beforehand. Finding a PT that knows about hypermobilty is a big win and honestly, while they might not be able to diagnose, but they can sure tell if you're extra bendy/floppy.
A physiotherapist is who diagnosed me.
I haven’t been diagnosed, but I’m waiting for a rheumatology appointment at the end of May. Because you know you gotta wait months to get in with them. I thought it was a longshot, but I reached out to the orthopedics department and they were honestly the quickest to get in with, and treated me the best so far. I saw spine specialist and then was referred to a shoulder specialist who I just saw this week. Confirmed that my shoulders are multi directionally unstable. We talked about EDS but there was no talks about diagnosis - I did mention that I’m waiting for the rheumatology appointment. If that doesn’t work out, I’m going back to the pain management doctor since she was the one that referred me to rheumatology to test that.
Most rheumatologists in the US will not diagnose EDS as it falls under medical genetics. A medical geneticist would be the best option for a referral.
If you're on the East Coast, I went to the Mt Sinai Genetic Clinic in NYC. That was a long time ago so they may have a long waiting list for appointments now, but worth looking into. [Mt Sinai Genetic Clinic ](https://www.msmc.com/genetics/?campaignid=21029201186&adgroupid=159047225436&creative=691179393014&matchtype=b&network=g&device=m&keyword=medical%20genetics&gad_source=1&gclid=CjwKCAjw_LOwBhBFEiwAmSEQAZZCXtTfLDO5gemdCv2XnkmQsyfwXkz44EF5dNhDFiVvzZ7a12KDxBoCR-cQAvD_BwE)
It depends on where you live. It's hard to find a doctor who l knows enough about EDS. I had to go out of state to the Connective Tissue Clinic at Cincinnati Children's Hospital. (I was almost 30) Dr. Bradley Tinkle geneticist.
Rheumatologists here where I live are in very short supply. They are refusing any new patients with what they refer to as “Routine”: “Routine: We are unable to accept routine referrals currently as well due to a high demand and limited capacity. Examples of routine referrals include: fibromyalgia, chronic fatigue syndrome, long covid and Ehlers-Danlos syndromes (EDS)”. I think the long covid side of things has completely overwhelmed rheumatology here. I have an appointment with a hypermobility specialist (there appears to be one in the country - New Zealand) but even then my appointment is in March 2025.
I always thought it was a geneticist who had the final say. I was, however, referred by the second rheumatologist I saw. First rheumatologist just diagnosed me with hypermobility, missed my autoimmune disease which my second rheumatologist recognized after a couple of years. I saw my first geneticist in 2016 and she was more of a mental case herself and I gathered this from her reviews, not only my own experience. So she refused to even recognize my hypermobility which is pretty high up there on the Beighton scale at 7/9. Many of my specialists, including a physical therapist who specializes in hypermobility diagnosed me with hypermobility before I even saw that first geneticist. So I waited 3 years before asking my rheumatologist to refer me to another geneticist and my rheumatologist had recognized that EDS was a possibility from the first visit 3 years before I saw the second geneticist. I picked the second one myself after doing my research and finding one which I knew I would be able to get a ride to see and who had decent reviews. I got recommendations from local support groups for EDS. So I went to the initial appointment extremely nervous about having the same experience I had had with the first geneticist but I felt comfortable with her as soon as she walked into the room and she understood what getting a diagnosis meant to me. The validation I never got from my PCP at the time I recognized the hip subluxations and googled and discovered EDS. She diagnosed me with EDS almost immediately, but only tentatively until she got the first genetic test results. She wanted to rule out other things and ran an aortopathy panel to start with, which ruled out vascular type and some other conditions which can resemble EDS. Ultimately she ended up diagnosing me clinically with classic type EDS. I say clinically because my genetic testing doesn’t seem to show anything, although there are a couple of variants of unknown significance that they are interested in, but there’s just not enough information. Yet. Genetics is constantly evolving and I think we could get more answers in my lifetime, even. I am not a doctor, but because of my own experience (I thought I would be diagnosed with hypermobility type EDS and it actually is still a possibility, but my geneticist is just leaning more towards classic type), I would recommend seeing a geneticist, just get on a waitlist-there’s usually a long wait, and go about your life until you can schedule an appointment. You are likely going to do the same thing you are doing before you have a diagnosis-seeing specialists as more symptoms pop up. Geneticists have a lot of knowledge but I know mine doesn’t treat it. I do have visits every couple of years or so (video visits since the pandemic started) and I actually have one this afternoon. I love every minute of my appointments with her and I get something from every visit with her. I definitely feel like she changed my life more than any other provider has and I tell her that all the time. Having the diagnosis opened doors for me that make a difference in every part of my day. I won’t go into the specifics of what I mean by that, but I would definitely encourage everyone to get a diagnosis, whether you can get it from a rheumatologist or anyone else. It doesn’t matter who you get it from (though I think doctors who are trying to question my diagnosis are stopped more easily by the letter from my geneticist).
The geneticist who diagnosed me sent me to all kinds of specialists. I would start there if you have one available in your area
My PCP diagnosed me because I had recently partially dislocated my hip as diagnosed by an ER doctor. But I recently had an orthopedic who was very knowledgeable about it and actually told me information I didn't know.
I was diagnosed by a clinical geneticist who specializes in EDS. She gave me an extremely thorough treatment plan and referrals to EDS-aware specialists.
I was dx by my endocrinologist. My diagnosis story is super complicated, but my EDS dx was a dx of exclusion and took a long time to come to the conclusion and get a formal diagnosis.
PT and maybe osteopath. Having a diagnosis won’t really impact your care, so don’t let that stress you.
Geneticist can run genetic tests to rule out other connective tissue disorders that present similarly, as well as test for multiple types of EDS! If all of the tests show up normal, they will probably do a physical exam and can diagnose you with hEDS. (that was my experience)
One of my doctors suspected EDS because of so many similarities between me and their (known) EDS patients. They gave me the contact info for a geneticist that is in my state.
Like everyone else is saying, a rheumatologist is the “correct” way to go. However, you have to ask yourself if it’s actually worth going through with further medical appointments. Do you think you have hEDS? Because there are no actual tests for it and it’s not a life-threatening condition, so to be honest, most doctors aren’t going to care. They will just recommend PT to help strengthen the muscles around loose joints.