As any doctor can tell you, the most crucial step toward healing is having the right diagnosis. If the disease is precisely identified, a good resolution is far more likely. Conversely, a bad diagnosis usually means a bad outcome, no matter how skilled the physician. Andrew Weil MD
The Ehlers-Danlos Syndromes (EDS) refer to a collection of genetic disorders which weaken and undermine the normal structure and function of collagen, a protein produced by the body that is an essential component of skin, cartilage, bones, tendons, ligaments, blood and lymphatic vessels and connective tissues. Since these tissues are found all over the body, every organ system can be affected, and therefore the presentation and symptoms of this illness can be extremely varied.
Pain and fatigue, however, are experienced almost universally by patients with EDS. Many of these patients also have mast cell activation and mold toxicity, and thus suffer from the wide array of psychiatric symptoms such as depression, anxiety, phobias, insomnia, attentional issues and brain fog that are associated with these diagnoses. It is therefore very common for EDS patients to seek help from a psychiatrist. Unfortunately, the vast majority of psychiatrists do not recognize this disorder. This is actually not only true for psychiatrists, but for other types of medical professionals as well. Physicians may have a vague memory of learning about EDS years ago in medical school but remember only that it is a genetic disorder with hypermobility.
EDS is actually so very common in my practice, that in the intake paperwork that I send to patients prior to our initial meeting, I also include a checklist of symptoms related to connective tissue abnormalities. It can be an enormous relief when I raise the possibility of this diagnosis as an explanation for the collection of strange and mysterious symptoms which have plagued them. Their symptoms are potentially related to a single cause, namely an abnormality of the connective tissue. These patients often have histories of extensive contact with the medical system over the course of their entire lifetimes, as they have a history of chronic illness. Sometimes they have been told that they have chronic fatigue, or fibromyalgia, both of which are vague wastebasket diagnoses that really are only descriptive, meaning that they are exhausted (chronic fatigue), or that they have pain all over their body. (fibromyalgia).
A Spectrum Disorder
Just as autism is a spectrum disorder, meaning there are some children who are severely afflicted, who are non-verbal and prone to engagement in repetitive self-stimulating behaviors, there are others on the autism spectrum who are only mildly afflicted. These children may simply demonstrate a lack of interest or capacity in interpersonal relationships or have an encyclopedic knowledge of and fascination with a particular subject, for example, trains or the weather.
Clinically, EDS is also a spectrum disorder. Many of the patients I see do not have the full-blown dramatic syndrome with identifiable genetics, but they are still suffering from many of the symptoms that are related to an abnormality of their collagen and connective tissue. They may have extreme hypermobility in some of their joints, such as the capacity to bend their thumb backward and touch their wrist or to touch their hands flat to the floor with their knees straight or hyperextend their elbows. Some may bruise easily, suffer from chronic constipation, dizziness and elevated heart rate when they rise from sitting to standing (postural orthostatic hypotension or POTS), but they are not necessarily constantly dislocating joints and injuring themselves. They also do not have a history of prolapsed or ruptured organs and vessels, nor do they have eye or dental problems. This milder type is technically called Hyper Mobile Spectrum Disorder, rather than Hyper Mobile EDS.
There are thirteen different inherited subtypes of EDS that have been identified. The two known genetic modes of inheritance are autosomal dominant and autosomal recessive. All of the types can have joint hypermobility (joints that move further than normal), subluxations and deformity of joints, frequent injuries, scoliosis, skin hyperelasticity (skin that stretches more than normal), velvety skin, poor wound healing, abnormal scarring, and tissue weakness that can lead to hernias and prolapses of organs, eye disease, gum and dental disease, cardiovascular disease and life-threatening ruptures of vessels and organs. Often there are digestive symptoms such as constipation due to abnormal peristalsis, nausea, vomiting, difficulty swallowing reflux, bloating, and food intolerances. Autonomic instability is a common feature characterized by disturbances in heart rate, blood pressure, and temperature regulation.
The Tragic Consequence of Misdiagnosis
When a patient who is suffering from EDS sees an internist, pediatrician or family practice doctor, they are likely to run many tests and do many laboratory studies, all of which do not show anything treatable. There is indeed an underlying organic cause of the constellation of mysterious symptoms, i.e. the abnormal structure and function of collagen, but since this is not recognized, it cannot be addressed.
When the patient’s distressing symptoms are not alleviated, and they are not getting any answers or effective treatment, they may become more insistent about something being very wrong, which can lead to a serious conflict between the patient and the clinician. Eventually, the frustrated clinician will often refer them to a psychiatrist or other mental health professional for counseling. They may be given a diagnosis of Conversion Disorder, defined as a psychological condition in which a person has blindness, paralysis, or other neurological symptoms that cannot be explained by medical evaluation. The traditional psychoanalytic understanding of conversion disorder is that it is a physical manifestation of unresolved conflict due to unbearable or unacceptable thoughts or feelings. This is obviously very invalidating and psychologically damaging for the patient and denies the fact that their symptoms are a direct result of an organic problem.
It is even more tragic when the patient is a child, and the parent desperately tries to find an answer or solution to their child’s many medical symptoms by seeking consultation with one doctor after another. This parent eventually runs the risk of being diagnosed with Factitious Disorder, formerly called Munchausen’s Disorder by Proxy. This diagnosis is understood as a form of child abuse, where the needy attention-seeking caretaker (usually the mother) either makes up fictitious symptoms or literally causes real symptoms in order to make it look like the child is sick. Her motivation is thought to be due to the secondary gain, i.e. the perceived external advantages or benefits that may be derived as a result of having symptoms. This is akin to other historically outrageous formulations, such as the former psychoanalytic misunderstanding of autism as being due to having a “refrigerator mother”. The autistic child’s abnormal development was understood as a result of maternal coldness and lack of caring, rather than a poorly understood organic brain disorder, which is due at least in part to a lack of capacity to detoxify an overload of toxins, and has absolutely nothing to do with the quality of parent-child relating.
Not only is this type of misdiagnosis a sin of commission, in that it directly causes psychological damage, but it also results in sins of omission. The symptoms of EDS can be treated supportively with physical interventions if properly diagnosed.
Confusion about Autonomic Dysfunction (Dysautonomia)
Dysautonomia, in particular, is often misdiagnosed as a psychiatric disorder because it can present symptomatically as anxiety, panic, attention deficit disorder, and hypomania. Autonomic dysfunction results from a depletion of energy reserves due to chronic sympathetic nervous system overdrive. These patients often have very poor sleep quality due to chronic pain, which then leads to day time fatigue, exhaustion, and poor stress resilience. This depletion puts them into survival mode and further activates their sympathetic nervous system resulting in a state of chronic fight or flight.
Chronic hyperarousal can create the appearance of a Generalized Anxiety Disorder, or if they have surges of adrenaline due to autonomic dysfunction, they can appear to be having a panic attack. This state of sympathetic hyperarousal can manifest as restlessness or hyperactivity, which can be mistaken for Attention Deficit Hyperactivity Disorder. Sometimes their ability to power through and to continue to function on very little sleep is mistaken for hypomania. Since they are so tired, they often make mistakes, misplace things and have trouble concentrating, and thus look like they are suffering from Attention Deficit Disorder.
Psychiatric diagnoses are generally diagnoses of exclusion, meaning that the condition does not qualify if it is a consequence of an underlying medical problem. If a patient is sleeping poorly due to chronic pain as a result of EDS, and thus they are exhausted and consequently their cognition is impaired, it is inappropriate to diagnose Attention Deficit Disorder. If they did have a good night’s sleep, they would not be forgetful or have trouble concentrating. When they are referred to a psychiatrist, due to the ignorance of the actual underlying medical cause of their condition, they are routinely prescribed psychiatric medication. This can sometimes be helpful, but more often, it will either do nothing or make their symptoms worse. In addition, dysautonomia does respond to appropriate treatment, which consists of efforts to improve sleep quality, control chronic pain, provide adequate salt and fluid intake, avoid hypoglycemia, effectively manage stress, and get adequate rest. Without identifying the underlying cause, appropriate treatment will not be offered.
If EDS is suspected, genetic testing can be done. There is no cure for EDS, but the symptoms can be addressed and appropriately supported. It can be very helpful and relieving for patients to have a framework for understanding their condition. Unfortunately, due to the EDS illiteracy of most medical professionals, a patient suffering from EDS often goes undiagnosed, and therefore appropriate treatment is not offered.
There are many wonderful on-line resources where patients with EDS can learn and exchange information with one another. A great resource is the Ehlers-Danlos Society website, which has a FaceBook group, a Helpline, a YouTube channel, and webinars. It also has a list of practitioners who are EDS literate.
An excellent new book on the subject is called Disjointed edited by Diana Jovin, which is a collection of chapters on various aspects of EDS written by different authors.
Here is an accessible and informative video that discusses EDS as an under-recognized syndrome.
I wish there were more practitioners in Ontario.
I’m a late diagnosed autistic woman – dx at 43, after 3 years of psychiatric nightmares where they’ve destroyed my ability to be treated for the ADHD I also have, and deny my ASD diagnosis in favour of their “bipolar” label. I’ve been subjected to over 15 different medications to stabilize my mood when it’s neurological, and I’ve been trying to obtain medical care from professionals who actually listen to their patients. I have a lot of the markers for EDS as well but don’t know where to turn anymore since psychiatry has labeled me and cost the trust of my family practitioner. Thank you for your insightful post and hope to find medical professionals near me who are as thorough as you seem to be.
Laura Langille says
Oh my gosh, I am nearly in tears right now. You have just put together all of my thoughts, the boggling bits and pieces, and growing suspicions I’ve had about my 16 year old daughter’s conditions. She is a walking checklist for everything you’ve noted here, and in your post about MCAS. She keeps getting referred to psychiatric/mental/mood disorder therapy and programs and they NEVER help! Ditto for SSRIs and everything else they’ve put her on. They just make it worse.
She has been diagnosed with HSD but not hEDS at this time although her doc says it’s probable. Anxiety, fatigue, brain fog, severe sensory issues, misophonia, joint pain, etc. rule her life and her executive functioning is in the toilet. Her nutritional levels are severely deficient as well (iron, vitamin D, magnesium, B vitamins) which can also produce these symptoms; but with an eating disorder/aversion to medication she is unable to take the supplements she has been prescribed. Now I find out that EDS can also cause malabsorption of nutrients, so it’s possible that even if she was able to take them, her body may not metabolize them correctly.
HSD/EDS and it’s comorbidities are such a complicated picture. Where in the world are we to turn for help when there are so few docs who understand??
Any direction you can provide is beyond appreciated. I’m thinking of reaching out to Mayo Clinic’s EDS program.
Thank you for bringing this topic into the light!
Dr. Tsafrir says
So glad to hear that this post was meaningful to you. Here is a link to the Ehler’s Danlos Society website where they have a list of practitioners who are EDS aware. https://www.ehlers-danlos.com/healthcare-professionals-directory/
There are also Facebook groups where you can interface with other patients and families with EDS. I believe if you do some Googling you will be able to find a number of resources. Many conventional MDs know little to nothing about mast cell activation. They have heard of mastocytosis which is not the same condition.
Laura Langille says
My main concern right now is actually finding a PHP or IOP psych program for her – one that doesn’t push meds, with people that are open-minded enough to look at the big picture with her. She does need treatment for her mood disorders, along with treatment for her HEDS symptoms. Just last week she was rejected from the pediatric pain management rehab program at Mayo (which we had a referral for) because they want her to be more mentally stable before she can attend. It’s a never-ending circle!
Do you know of ANY PHP or IOP clinics you’d recommend? I don’t want to do residential, not with her pain and fatigue issues, and reactions to medications. I’m not willing to put her at the mercy of staff who likely have no clue about her condition.
I have searched and searched and have yet to find ONE place that has good reviews.
Laura Langille says
Unfortunately there are no EDS experts anywhere close to where we live, but we are willing to travel.
Honestly, our biggest obstacle right now is finding (preferably) a PHP for her to address her many mood disorders. A place that can actually take into account the HEDS, etc; and the fact that her disorders likely have multiple causes. We were referred to Mayo Clinic’s Pediatric Pain Management program, but after the two hour intake interview they advised she needed to be better stabilized mentally before she could attend. I feel like we’ve been thrown under the bus AGAIN, and I can not find a single adolescent mental health program (IOP or PHP) that gets good reviews. We’re so desperate for help, and nowhere to turn! Even Mayo does not have an appropriate program for her.
Do you have any suggestions? We’re willing to go wherever we have to at this point, for a GOOD program.
Dr. Tsafrir says
Unfortunately, I do not have knowledge of a psychiatric program that appreciates the intersection of chronic complex medical conditions with psychiatric symptoms. I understand your desperation. I wish I had something to offer.
Deborah Lyse Orpin says
My heath history is entirely the same and now at 58 with 6 adult children who ALL are showing many of the same signs and symptoms, we finally had some genetic testing done and found out we all have MTHFR gene mutation and also CBS and COMP gene mutations.We now not only have to try and sort out a low histamine diet and lifestyle but also now I have found out I am highly reactive to anything that has corn or corn by products in it. And lectins also have to be limited, it is so annoying but when we are all super strict it makes a massive difference to all of us.
Dr. Tsafrir says
Having the knowledge is so empowering. So good to hear that you are figuring out the puzzle!
misdxd anxiety disorder. 18 or 19.
bipolar ii 29.
nearly dead 21.5?
29.5 hEDS correct dx and ADHD 26.5 and 35 by me.
nearly dead 30 [post finasteride syndrome], cured that. cured pssd (effexor xr 22, 23 or so).
confirmed by docs.
anyways. good luck all. male. healthy, but going on trt that and dexedrine helps a lot.
medical care nearly killed me. some good docs out there. there’s many in family.
i do me, tho. peace out. good luck, stay strong. MNK.
Your blog post has been making the rounds, and providing sparks of hope to many. Thank you.
Both my children (18-21) have been diagnosed with EDS as well as Small Fiber Neuropathy and Autonomic Neuropathy. Both struggle with anxiety and depression. My daughter has had an awful run of it in the past two years and is also dealing with gastroparesis, POTS/dysautonomia, MCAS and a few other cats and dogs (or zebras). We have learned the hard way that the psychiatric community largely has no concept of how these kinds of illnesses interact with the meds they describe (continual adding of anti-anxiety meds on top of all the medical trauma ultimately made my daughter suicidal). We are lucky to have found a wonderful therapist for my daughter, but I am at a complete loss as to how to find psychiatrists who have such awareness and exposure.
We live in Virginia although my older child is at school in Chicago and my daughter will be starting school in Massachusetts in the fall. I have checked the usual EDS resources with no luck so far. Do you have any recommendations of practices or directories or groups that I might try in my continuing quest to find the right help?
Dr. Tsafrir says
I can imagine that you are tired. It’s so hard. I don’t know of any directories beyond the EDS Society website. There is an organization called ISEAI, the International Society for Environmentally Acquired Illness that has a find a practitioner page. These are clinicians who are mold and Lyme literate, not specifically about EDS, but they are used to thinking outside the conventional box. That would be a place to look.
thanks 🙂 I’ll take a look because I’ll take a look at anything at this point. . .
Zebra Mom says
My teenager has hEDS (confirmed by 3 doctors), dysautonomia (confirmed by Autonomic testing) and chronic GI issues (confirmed by gastric emptying study). They use mobility aids, work hard with a PT and still suffer a great deal of pain. They now work with a tutor at home rather than attending high school. They recently saw a doctor, who noted the possibility of conversion disorder (FND) in her notes, yet said nothing to us about it. The doctor sees a lot of hypermobile ballet dancers in her practice that she often speaks of. When we asked for advice to address debilitating pain, we were met with a complete unwillingness to help, not even a single recommendation. The doctor told my teen that people with EDS can be professional athletes and they need to exercise and build muscle. This was a physiatrist who supposedly treats fellow EDSers.
We left feeling absolutely gutted. Now that my teen’s record mentions the possibility of conversion disorder, I fear they will be disbelieved by doctors in the future. Thank you so much for this article. It means a lot to me!
Dr. Tsafrir says
Such terrible ignorance. It’s awful.I wonder if offering the book “Disjointed” to this doctor would raise his consciousness. I am so sorry to hear what your child is going through, but its unfortunately all too common. I have some patients who manage pain with cannabis and CBD. Also some patients find Low Dose Naltrexone helpful. Such a hard situation for everyone in the family. Sending you all my best.
Cynthia Rumlow says
I’m 56 and never thought twice about being “double jointed”. I have 9 siblings and when I was younger we’d try to one up each other with what we could do with our limbs. My youngest sister’s arms would easily “come out of joint”, I had 2 surgeries for a “lazy eye” and the list goes on.
In 2014 (after many years of teaching fitness and yoga classes) problems with balance, proprioception, keratoconus, joint pain and instability, etc., sent me to many specialists (mostly male). One did tell me I had “functional movement disorder.”
I told him “FMD is simply the most current term for Conversion disorder which was originally hysteria. That was coined by Freud whom we all now know was a misogynist and cured hysteria with a hysterectomy. I’ve had a hysterectomy therefore I’ve been cured of hysteria, Conversion and FMD.”
I never returned to that doctor.
It was a niece who was dx’ed with hyper mobility and told me the Beighton Score (hands flat on the floor, elbows if I’ve stretched).
I went to my P.T. with this info and she and I researched this and lo and behold the questions that have been confounding many family members had an answer!
Even though there is no cure, having a name to give it has made an incredible difference.
Funny story: my son was still in med school and stood at our kitchen island with his hands on the edge, arms bowed (he had Nursemaid’s Elbow and Ankles as a child) and he told me he didn’t have hyper mobility. I told him to look at his arms and he said “oh, everyone’s arms do that!”
Medical schools haven’t caught up.
Thanks for your article. Preach from the mountain tops, too many doctors are still clueless.
Cynthia Rumlow says
I v should have pre edited: when I said “the list goes on “ I meant within my family. Each sibling has a history of health issues, mostly what I think of as nuisance issues, individually they are just a nuisance but as we’ve all aged they’ve become a little more.
Dr. Tsafrir says
Thank you for taking the time to write and generously share your thoughts and experience. A version of this post was published in Psychology Today, which I am glad of, because it has a wide readership and therefore it is a good vehicle to spread the word, but they unilaterally edited and cut the post and left out the information about the association with EDS and MCAS and mold. Many symptoms associated with EDS result from those co-occurring conditions, and those are conditions for which there are treatments,
Cynthia Rumlow says
I want to ask my doctor about MCAS but when I’ve been tested for allergies I test not allergic to mold. I am allergic to most plant life and animal fibers.
Is there another test for allergy/sensitivity to mold?
I’ve found a doctor who works with me and H-EDS.
Thank you again
Dr. Tsafrir says
Mold toxicity is different than mold allergy. It is tested by looking for mycotoxins in the urine. The lab that I use in my practice is called RealTime.
Shannon Thiessen says
I came across your article about EDS in Psychology Today via a link posted in an EDS support group on Facebook. I cannot begin to express how encouraging it was to see such an overlooked condition like EDS be featured in a prominent, mainstream outlet. You did a fantastic job explaining the basics of Ehlers-Danlos while still addressing its scope. That’s not a line many are able to walk when trying to give a synopsis of this complex condition. Mostly I want to thank you. Your article was the single most validating thing I have ever read about EDS. I’m a 28 year old woman and I’ve been struggling with chronic illness since I was 16. In hindsight, there were plenty of signs throughout my entire childhood as well, but it didn’t start drastically altering and impeding a normal life until 16. For so many years I struggled with the dichotomy of having symptoms of anxiety, ADD and mild hypomania to include mood swings, hot temper, and intrusive thoughts, among many other things, yet somehow knowing these manifestations didn’t align with ME, my mind, my personality, my soul. For lack of a better term, it was a real mind screw to have these symptoms that are categorized as psychiatric problems, but feeling there was actually something else going on that I couldn’t articulate.
During a time in everyone’s life when they’re struggling to come into their own, figure out who they are, who they “should” be, who they want to be, and a phase of adolescence/young adulthood when many try on bits and pieces of personalities, I was dealing with those factors along with feeling confused and distraught that sometimes my behavior and moods didn’t feel like me. I often worried I had some fundamental character or personality flaw. It was clear to me I was either struggling in ways other people weren’t, or I was just really bad at handling it. That also didn’t align with how logical and level headed I was in other ways compared to my peers. I knew I wasn’t the kind of person that cracked under common life stressors and traumas. There wasn’t a “reason” for me to be anxious or depressed, which only led to more anxiety about why I experienced what I did. Now, reading other EDS patients talk about their mental and emotional symptoms, I’m thankful I never sought psychiatric help or voiced these things to a mental health professional. I’ve seen people say they were diagnosed as bipolar and given a cocktail of anti-psychotics, antidepressants, etc. that ironically led to actual psychiatric problems. I likely would have been given some erroneous diagnosis as well.
Dysautonomia was the missing piece of my puzzle, and I didn’t learn that word until 8 months ago when I was diagnosed with EDS and POTS. Prior to my diagnosis, I learned through my own research that my mental and emotional symptoms were largely physiological in nature. I had struggled with severe digestive problems for years and learned about the gut-brain connection. Upon my diagnosis of Endometriosis at 25, I became aware of the hormonal component of my symptoms. I knew I had an overactive sympathetic nervous system as well, but had never seen concise information about all the implications of that. At 27 I experienced a few “panic attacks”, realized I had actually had them in years prior, and thought it was bizarre that there was absolutely zero emotional component to it. When I was finally diagnosed with Ehlers-Danlos shortly before I turned 28, so many things from my past and present fell into place. It was vindicating to stop questioning myself so much and to finally have a name and science backing up my life experiences. I had always been hard on myself for not accomplishing more or doing certain things differently. Now, seeing provable medical explanations in black and white of what’s been happening in my body my whole life is very freeing. I’m now able to put my symptoms into perspective and separate them from who I am as a person. Your article has been a big stepping stone for me in that process. I wish more medical professionals could put it as concisely and accurately as you have, but I’m grateful that you did, and I’m hopeful that more information like this will be brought to light in mainstream sources in the coming years. My journey has been a long and winding path, so thank you for contributing to my peace of mind and bringing hope.
Dr. Tsafrir says
So moving, Sharon. I imagine that many will identify with your journey. Thanks for taking the time to describe your experience so thoughtfully.
Thank you so much for writing this blog. It is being shared all around social media amongst EDS communities. It is so important to raise awareness within psychiatry specifically because that’s where most patients end up, and then since psychiatric diagnoses are descriptive the patients never get the help they truly need.
Dr. Tsafrir says
I am so glad that it is being shared. Thanks for letting me know. Hopefully consciousness about this will be raised, sooner rather than later. The situation is so unfortunate on so many levels. It’s got to change.
I can touch my hands flat to the floor without bending my knees, but I’m short, does that still count? Does it count if I stretched all my life and practiced stretching daily growing up (for instance, in gymnastics).
What do you think about collagen supplements for people who suspect they ~might~ be on this spectrum, would those be detrimental or beneficial?
Dr. Tsafrir says
I never heard of collagen supplementation being of benefit. I recommend that you check out the website of the EDS Society website that I linked to in the blog. They have many wonderful resources including a Facebook page where you can interact with others suffering from Hyper mobile Syndrome.
Two family members Mother and daughter have almost every symptom but tested negative on full connective tissue genetic testing. One hyper mobile the other not but the one not has almost every symptom listed. Drs. have no idea what it is.
History of lyme is only thing that could explain some of the symptoms away.
Genetic Specialist MD sure it was EDS charging obscene prices for testing and no help or referral after tests negative.
Dr. Tsafrir says
I am puzzled by the doctors saying that they have no idea what it is. There are many patients who have HDS, Hypermobile Spectrum Disorder, which is the same as EDS but without the genetic findings. The treatment is symptomatic, whether or not there is a genetic marker. So for example, if a person is hypermobile, then PT can be helpful. Efforts should be made to control chronic pain and to support the cardiovascular system if that is an issue. There is no cure for this condition. The treatment is supportive.
Was unaware of this. Very good to now know. However, how can it be possible for both test negative?
Isn’t genetics 100%?
Genetic Drs in both cases dismissed the diagnosis altogether since full panel connective tissue genetic testing was negative. Originally was recommended to do to rule out the vascular type.
This was done by an EDS genetic specialist. Guess psoriatic arthritis needs to be re-examined as well.
Thank you for sharing this article!
Dr. Tsafrir says
There are 13 identified subtypes with genetic markers and one type with no identifiable gene. It sounds like that is the kind that you are suffering with. Psoriatic arthritis is an auto immune condition. I always do testing for urine mycotoxins in cases of auto immune illness.
Urine Mycotoxins as in mold exposure? If so it makes perfect sense.
Dr. Tsafrir says
Also, what is causing this. I thought this was a rare condition?
Dr. Tsafrir says
I don’t know how to define rare. I see a great deal of it in my practice. It is due to a defect of the collagen but I don’t know why a person has that abnormality.
Thank you! I just got diagnosed with this a few months ago, after my psychologist suggested that this may be my underlying issue. While I can’t fix anything it’s a relief to know why I have all these seemingly random symptoms.
Dr. Tsafrir says
That is an unusually savvy psychologist you have! I am very happy to hear that. It’s a relief to have a framework for understanding.
Sue Wang says
Thanks so much for this! I know a family with EDS – will forward this post. It will be validating, at the very least. 🙏
Dr. Tsafrir says
That is great, Sue. One of the biggest problems with this condition is not just the misery of all the many physical symptoms, but how invalidating the conventional medical system is of their experience. It adds insult to injury. It makes me happy to think of you forwarding this to them and them feeling understood.