18 Conditions People With Ehlers-Danlos Syndrome Were Misdiagnosed With
Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.
Although each of the 13 subtypes of Ehlers-Danlos syndrome has their own unique set of diagnostic criteria, some symptoms of EDS may mimic other illnesses. Symptoms such as chronic pain and fatigue are common among many chronic illnesses, and even those that are more specific to Ehlers-Danlos don’t always get taken as seriously as they should (for instance, those with hypermobile EDS may have had others initially assume they were just “super flexible!”). EDS doesn’t have one “look,” and it isn’t always obvious when a person has the condition.
For that reason, as well as it still not being well recognized, EDS may often be misdiagnosed as another health condition. It can take weeks, months or even years before a patient and doctor are able to put the pieces together and accurately diagnose EDS.
If you are struggling with your health – whether you’re undiagnosed or feel you’ve been misdiagnosed – it can sometimes be helpful to talk with others who have experienced similar symptoms or received the same diagnosis, so that you can ask your doctor questions and have a productive conversation with your medical team. That’s why we asked those in our Mighty community who have been diagnosed with Ehlers-Danlos syndrome if they were initially misdiagnosed with another condition. If any of the following experiences sound familiar, hopefully it can either be helpful to you in your health journey or remind you that you’re not alone.
Here’s what our community shared with us:
- “Misdiagnosed with Lyme disease and Sjogren’s syndrome. I went to a fibromyalgia expert at the suggestion of an infectious disease specialist, and this expert noticed my hypermobility and lax skin. My TMJ, strabismus, rolled ankles, frequent subluxations since childhood, unstable patella and thumbs which hyperextend led him to suspect EDS. He sent me to a genetic counselor who confirmed diagnosis. Finally. After four years and 16 doctors, I got an answer.” – Lauren F.
- “I was misdiagnosed with anorexia, as my EDS causes horrible stomach issues to the point where I’m now being tube fed. I spent 20 days in a mental hospital on two separate occasions. In the end all it took was sending my medical records to a hospital out of state and my doctor when I first met him told me that he was sure I had two things, EDS and POTS [postural orthostatic tachycardia syndrome], both of which tests confirmed.” – Bri M.
- “I was told I had fibromyalgia and arthritis. I pushed for answers because I’m not stiff, I’m flexible. Most people with arthritis lose range of motion. That’s when it was discovered I have EDS.” – Karrie A.
- “I was told I just had scoliosis and some joint issues, and widespread pain. I was 11 when I was diagnosed with really severe scoliosis, and I had other issues that were just diagnosed separately and never put together. Then, at 18, I was diagnosed with Ehlers-Danlos syndrome (hEDS), POTS, MCAS [mast cell activation syndrome], migraines, GP [gastroparesis] and others, all thanks to my inability to take ‘no’ for an answer.” – Saylor A.
- “I was originally diagnosed with anxiety and conversion disorder. It wasn’t until my eighth doctor that I finally got a diagnosis of EDS, mastocytosis, dysautonomia.” – Katherine S.L.
- “I was told I had endometriosis but surgery ruled it out. I was told I was just hypermobile and it was nothing serious. Then they said colon issues which surgery ruled out. Then I was told depression but meds didn’t help. My doctor tested for thyroid issues and vitamin deficiency and it all came back normal. Then I was told early onset arthritis but testing ruled that out. I was told I had mononucleosis three times with false negative tests. After 19 years no one could figure things out. Finally after dislocating a shoulder on an airplane (darn overhead bins!) when I arrived at my destination and visited a family member in the hospital a nurse asked me three questions (are you soft, are you flexible, are you always tired) and offered the words ‘Ehlers-Danlos.’ She wrote it down for me to take home. Googling that night, it all connected. I went to my doctor who read up on EDS, agreed with the diagnosis and sent me to a geneticist for confirmation. Nineteen years from first symptom to diagnosis.” – Sarah H.D.
- “I was diagnosed with anxiety. They said I was so tense that my body was popping my ribs out of place. Seriously.” – Krystal K.
- “I was diagnosed with grief! My husband passed away two years ago which was around the time my symptoms started getting much, much worse. For 18 months I was told it was just a physical manifestation of my grieving even though I kept telling the doctors that this had been happening all my life. It wasn’t until I saw a rheumatologist who didn’t know I was a widow that I was properly diagnosed with hEDS.” – Paula C.
- “I’m too tired to elaborate. In a nutshell: hypochondria, metabolic syndrome, overweight and later on, fibromyalgia. Hypermobility and dislocations got my attention. And I do have secondary fibromyalgia caused by the stress of pregnancy and delivery.” – Irina V.
- “My favorite according to an orthopedist: ‘You dislocate because you have been feeling pain for so long that your body wants to dislocate to feel more pain.’ Seriously?! That’s not even a thing!” – Shay K.
- “My mom and I were told I had chronic migraines, or cluster headaches, or that I ‘felt pain differently’ or, my personal least favorite, that I was simply looking for attention. The reality was all my neurological symptoms were caused by CCI (craniocervical instability) caused by EDS and most of my joint pain and issues weren’t super prevalent because I was not active at all due to those symptoms. Not to mention my pain tolerance was/is pretty high so what I considered normal probably was not.” – Maura G.
- “Growing pains was the most common thing I heard. Even in my late teens and early 20s. It wasn’t even a diagnosis but that’s the answer every doctor kept giving me for my chronic pain.” – Stephanie B.S.
- “Undifferentiated spondyloarthropathy and fibromyalgia. My physical therapist noticed I was really hypermobile and that led me down the path to my EDS diagnosis. In hindsight there were signs of EDS from my earliest memories.” – Kari R.
- “I was misdiagnosed with hip dysphasia at 15. I had a dozen X-rays and two MRIs before they realized that was not the case. After orthopedics wrote me off their specialty, I saw rheumatology, got written off their specialty, then again with neurology and rheumatology a second time before I finally got an appointment with genetics!” – Molly M.C.
- “They thought I had some form of ANA negative lupus in the army. It was only [when] I got out, I learned EDS existed.” – Brittney B.
- “I fell ill at 10 years old and was quickly diagnosed with ME/CFS. I fit the symptoms I guess… but suffered from more severe joint pain, more problems sleeping, horrific period issues, low blood pressure and most of all dislocations and subluxations. It wasn’t until I was 17 when my fatigue issues were mostly gone that they investigated further. Took another year to get a diagnosis of hEDS. I wish I had been diagnosed with hEDS sooner so I could have got better care, physiotherapy and not spent my teenage years wondering why I didn’t even fit in with the CFS community because of my symptoms.” – Mattea S.
- “I was originally diagnosed with Marfan [syndrome]. A lot of us probably were. I was also diagnosed with classic, then hypermobile, then CV [cardiac-valvular] EDS.” – Sondra B.
- “Benign hypermobility syndrome and ‘it’s in your head.’ The minute I heard about Ehlers-Danlos syndrome and Googled the symptoms, I automatically knew I had it and fought for four years to get diagnosed.” – Michelle K.
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