Myths Part Three: There’s No Point in Getting a Diagnosis of EDS & Other Diagnosis Myths

[@cosmicheart]

Thank you for this series. I felt absolutely humiliated by a rheumatologist when I was seeking a second opinion, I'll never forget the day, May 24, 2022. She implied that I was lying when explaining my symptoms because I was sighing while talking (I have shortness of breath and was wearing a mask) and had frequent heavy blinking, which I've had since high school, a side effect from an antidepressant that comes and goes to this day, I have no control of it. She told me that even if I did have (h)EDS, "there's no point in a diagnosis, there's not a cure or treatment. It doesn't even cause pain." Of all the doctor appointments I've cried from, this one took the cake. I appreciate you speaking out and advocating for us, when seeking help sometimes we are often made to feel so wrong, hysterical and deceptive. I have nothing to gain going into an office with a list, a constellation of symptoms spanning my entire lifetime. It feels awful to be repeatedly invalidated. Here's to hoping 35 will be the year I finally receive a diagnosis as well, after years of trying to make sense of it all 🥲

[@JeannieDiBonHypermobility]

So sorry to hear of your journey 🙏🏻❤️

[@MJ-gj6mj]

I'm so sorry! My experience with rheumatology was awful as well. He didn't even feel any of my joints, let alone do any specific measurements or tests. I've had sooo many injuries consistent with HSD, it's very frustrating. It prevents me from doing my job, but doesn't qualify for disability as there is no diagnosis. I am injured several times a year, I trip up the stairs, I bump into things, I can do most of the beighton scale.....the ones I can't do is bc I am stiff now. Dr's. in the US don't take this seriously. They only treat symptoms and not the cause. I don't want any pain meds! Using Jeannie's videos has been my only source of support quite honestly.

[@bigbird3970]

52 years to be diagnosed, a lifetime of peculiar symptoms finally made sense, to be believed and validated is priceless 🦓 Thank you Jeannie 😊

[@JeannieDiBonHypermobility]

Thank you. So glad you got answers.

[@mariameenan7848]

Can I ask how you got your diagnosis? My GP's don't seem to be interested even though I have been to them over the years with a myriad of issues and only finally got hypermobility and osteoarthritis diagnosis from a private appointment with a Rheumatologist. I'm so fed up with the pain and not being listened to.

[@rachaelnugent]

The relief, the validation, the ability to finally -after 30 years of being told all of my problems were in my head- to be able to live my life without the nagging concern that I was going to eventually and completely lose my mind.... added to that the ability to properly understand and work on managing my physical issues in way better suited to my body... yes a diagnosis was life changing.

[@JeannieDiBonHypermobility]

So glad to hear you got validation.

[@Spanglefangle]

Dr Hakim diagnosed me at 39. Not ashamed to say I bawled my eyes out. Wanted to give my GPs paper cuts with his letter.

[@JeannieDiBonHypermobility]

Nothing wrong with a good cry & letting out years of frustration.

[@charlottestandage2765]

Thank you so much for doing this series Jeannie. When i was on my diagnostic journey the first rheumatologist said that i was not hypermobile. She actually looked away when i touched my thumbs to my forarm. She also didn't believe me when i told her my twin sister had been diagnosed with hEDS by two doctors (Dr. Mathias and Prof Graham). So i printed out my sister's diagnosis letters and took them to the hypermobility clinic in London where i was diagnosed wuth hEDS (7/9 on beighton). My previous GP however still didn't believe me that i had hEDS and didn't believe that muscle spasms had anything to do with hEDS (i have dystonia in my neck - also recently diagnosed with associated tremors). I changed GP practices and sent him a letter with a reference for him to read about the fact that dystonias are diagnostic of Ehlers Danlos syndrome. He never got back to me, so im assuming he never read it. Its so difficult advocating for yourself as you begin to give up. Thank you again Jeannie, as this series is helping to advocate and educate health professionals so they start to understand. Xxx

[@JeannieDiBonHypermobility]

I’m so sorry you had such a long journey. It shouldn’t have to be such a battle.

[@swesolowskaborowy]

Thank you so much for doing this video, J ❤ I have developed some kind of horrendous medical environment anxiety due to medical professionals telling me I was imagining things. And n the top of the anxiety connected with being in constant pain it’s not a good combination. It is shocking how little is known about this condition and a myriad of symptoms and accompanying diseases which can follow….

[@JeannieDiBonHypermobility]

So sorry to hear this. Shouldn’t be this way for us.

[@MarkChambers-er7dd]

im living the exact same nightmare.....where ever i go (healthcare wise) im immediately judged as a MH patient with no physical issues at all ...jzst labelled as crazy everywhere i turn for support within this tory led NHS🤕❤‍🩹😔

[@sarahlongstaff5101]

My private pay physical therapist treats me as if I have EDS even though at 56, I don’t have a high Beighton score. I have lots of injuries consistent with hypermobility, and my whiplash 4 years ago, I still haven’t recovered from. But here in the US, so much research is driven by searching for genes instead of improving quality of life, doctors will only diagnose severe cases.

[@JeannieDiBonHypermobility]

Sorry to hear this.

[@mischa1714]

About 4 years ago I was told that I might be heading towards an MS diagnosis, because of the neurological symptoms. This was 3 years before my hEDS diagnosis, and now ALL of my symptoms make sense. 🧠😊

[@JeannieDiBonHypermobility]

Glad you got answers 🙌

[@missheather4487]

Hi jeannie.from age 9 I've been attending gp..told in my 40s it was just old age..eventually went private to see rheumatology, diagnosed right away I was 56 by then..I finally felt validated..did my mental health the world of good and allowed me start on my journey...I've had too many needless procedures on my body and have ptsd around the medical world ,I gaurd myself now..thankyou ,self care is very important to me and now I understand, I don't need normals too.they cant..my diagnosis is my shield ❤

[@JeannieDiBonHypermobility]

So sorry to hear you went through such a difficult journey to get diagnosed.

[@danacato8956]

We really don't have any EDS specialists here in the US. We get seen by rheumatologist specialists only, and EDS is nothing like rheumatoid arthritis.

[@JeannieDiBonHypermobility]

🥲

[@nikkimansell2760]

My GP told me seeking a diagnosis was not going to change anything so was pointless! I was symptomatic from just 5 years old when I had a minor accident but got a green stick fracture on my right arm…! I was 38 when I paid to see a rheumatologist as the NHS refused to see me as ‘EDS is not looked after by them’…! It was so validating to not only be listened to, but also heard by my rheumatologist, who ironically had just finished his shift over the road in the NHS hospital… I am now ticking many boxes for MCAS but as the worst symptoms are GI, I’m getting nowhere as the consultant said not getting anaphylaxis means I can’t possibly have it 🤦🏼‍♀️🤦🏼‍♀️😳

[@JeannieDiBonHypermobility]

So sorry to hear it’s such a struggle

[@julieshenk7640]

Yes, yes, yes,...my story completely.

[@JeannieDiBonHypermobility]

🙏🏻

[@francescabossert604]

What can be done beyond a scan? I had a neck injury two years ago - ligament damage - that still causes me daily pain. It took two months for anyone to take me seriously despite electric shocks and convulsions multiple times a day. One doctor told me I needed to move more : go running he said! I couldn’t even pick up my fork! I know I am hyper mobile, but since nobody ever seems to consider it a “thing” apart from my pilates teacher, no doctor has ever diagnosed it. I dislocated something below my left knee , in the outside, years ago by bending down in stiff riding boots, and I just clicked it back in again and kept going. It is quite painful now, years later. I remember dislocating my shoulder while skiing and just putting it back in when I was a teenager. I have been diagnosed with Lyme disease and an intestinal autoimmune disorder. Ibuprofen destroyed by intestines when I was handed massive doses of it for hip pain, neck pain, knee pain. People think I’m exaggerating, because I don’t look like I’m in bad shape. But I live with pain every day, sometimes more, sometimes less, and have had to stop doing a lot of things that I love. What other pain medication is there? What else can I do?

[@JeannieDiBonHypermobility]

Sorry to hear you are struggling. It would be good to see an EDS specialist. Have you looked on The EDS Society directory - there may be someone based near you.

[@scotjess3]

I was told "no point to get diagnosis because there's nothing we can do, anyway there's no specialist here and you don't want the label"

[@JeannieDiBonHypermobility]

Sorry to hear this.

[@sandywood8437]

I was told by physio and doctors I didn't have hypamobile hips all my life and not they admit they are hypamobile also had both shoulders injured in 2 years I'm assuming they are hypamobile as doctors refuse to listen. I'm afraid iv given up there. Went to private pherapist regarding breath issues it seem I has dysfunctional breathing. So now learning to breath correctly feel totally let down.

[@JeannieDiBonHypermobility]

Hope things are improving for you.

[@DK-cd8og]

I have a question about near infa-red light therapy. From what I've heard, it seems like it would be beneficial for pain relief. Do you know anything about this Jeannie?

[@JeannieDiBonHypermobility]

I haven’t tried myself so can’t give any personal advice. I do know a number of zebras who do find this beneficial though.

[@funzeevanzee]

Thank you.

[@JeannieDiBonHypermobility]

You're welcome!

[@Brandimae222]

Are there certain tests that should be done preliminary on our heart and lungs or other parts of the body? What types of conditions come from this and is any of it preventative? I have trouble taking deep breaths and I used to have heart palpitations. Especially with MCAD. Thank you so much for this content it has been unbelievably helpful and affirmative.

[@JeannieDiBonHypermobility]

Glad it was helpful. Good to ask your medical doctor about having regular tests if you have concerns.

[@Brandimae222]

@@JeannieDiBonHypermobility thank you for your reply and so quickly! Your work has been helpful.🙂

[@cococreates26]

I remember a "specialist" telling me that I wasn't old enough to have EDS 😳🙄🙄🙄

[@JeannieDiBonHypermobility]

Oh dear 😟

[@Psychomech5]

My doc has given me the option of seeing a rheumatologist to get a possible diagnosis of HSD and I came here because I’m not sure whether there’s any point. Peoples’ experiences in the comments are kinda freaking me out though.

[@JeannieDiBonHypermobility]

I hope it goes well if you decide to go.

[@PsychodelicKitten]

My dr literally said there was no point in a diagnosis cuz it won’t help anything. She eventually diagnosed me with heds a couple months ago. It was easier to understand and tell ppl what was going on. Drs before her literally told me they didn’t know what was wrong with me and just gave me more pills. Told me my joints shouldn’t be doing that. No shit dude obv something is wrong or I wouldn’t be in the ER right now 🤦🏻‍♀️ thought I was losing my mind. I went thru so many tests ugh omg is there anything on heds and epilepsy? Epilepsy was the first chronic illness I knew I had. Was diagnosed as an infant

[@JeannieDiBonHypermobility]

Sorry to hear this.