I'm rather new here and to learning about hEDS and connective tissue disorders generally. I would really appreciate anyone reading my story and offering any advice or support.
My joints always hurt growing up and I was in a lot of joint pain all the time (especially my back). However, my mom and family generally always thought I was just a whiney child and I was told "everyone's uncomfortable, you have to learn to deal with it." So, I did.
I tried doing sports and playing normally, working as hard as I could pushing through the pain. I injured my ankle when I was young and it's been repeatedly injured since. When I couldn't push anymore, I got very depressed and I slept quite a lot, a very heavy sleeper too. Impossible to wake up often times. I repeated this cycle over and over and finally as an adult took jobs that required a lot of standing. I injured my ankle again and, of course, doctors assumed I was faking or something... because they couldn't find anything wrong. But the fact still stands: my ankle was swollen horribly, and I couldn't walk properly for a year. My ankle is and has been permanently damaged since childhood and has only gotten worse with repeated injuries.
My mom told me about 4 years ago that I had loose ligaments. Something a nurse had once mentioned off-handedly to her saying "she will either outgrow it or have joint problems". She only told me this after my fiance at the time had said that me spasming when I lie down on my back "as my back rests and settles down", was not in fact mild discomfort, but was severe pain. I've been taking better care of myself and been constantly trying to rewire my brain to not assume that the pain I feel is just "discomfort to push through" and that I'm not simply lazy. I've gotten better generally. My off-days are less common, and I try to remind myself that I'm not lazy for letting myself rest. I cry with relief and anger at the fact that I'd gone so long thinking I was just weak and lazy, and the fact that I can't just do what I want (I have severe diagnosed ADHD btw, so that helps ~sarcasm~). I've learned pain management as well (something I used to avoid like the plague), and it's helped tremendously.
The discrimination doesn't stop there, as I'm sure we've all experienced. My experiences aren't nearly as bad as I think most I've read here, but I'm trying to not put myself down anymore. I want to be able to get a job that won't tell me "oh well, without a doctor's note or diagnosis, we can't give you accommodations" when all I ask for is to be able to sit, and to be able to rest every once in a while and take it a bit easier on my bad days. I'm a hard worker, let me work without working myself to death, please! And I'm tired of seeing doctors who disregard my symptoms and chalk it up to mental problems, or more often my weight (I am overweight now, but my aunt has the same issues and she is skinny and fit as a fiddle!).
We think we have hEDS or at least HSD, as my uncle has some similar joint problems too, though mine seem to be the worst. Oddly enough, however, my mother doesn't have any joint problems whatsoever. I only met my father and his family once, and they seemed fine, but my mother's siblings having the same issues as me makes me believe I definitely get it from her side.
I've read a few people recommend a doctor in Massachusetts (I live in Maine), a geneticist that has diagnosed many with hEDS and the like. I'm scared to just run into another dead end, and worry my symptoms (despite being so difficult for me) aren't severe enough to get a diagnosis, and even at times scared that it's all in my head from a lifetime of invalidation.
Thank you to anyone who has read this LONG post (apologies for the length...), and I would really appreciate any advice or support.
Reply to GothiCat (post author)
Welcome to Inspire’s Ehlers Danlos Syndrome’s website. This is an international place with an active group of people, many of which strive to give the most accurate information on the many forms of EDS. There are over 200 types of connective tissue disorders (CTDS), some genetic and others acquired autoimmune ones. Ehlers Danlos Syndrome is just one of them.
Here is the link for the most recent criteria for the thirteen types of EDS:
The criteria for Hypermobile (hEDS) and Hypermobility Spectrum Disorder (HSD) are undergoing review. In 2017, the criteria for hEDS was narrowed down to help researchers find the gene(s) responsible for the disorder. If a person does not fit the hEDS criteria, a diagnosis of HSD can be given when all other diseases and disorders have been eliminated. Here is a link to the hEDS checklist:
Being hypermobile itself does not necessarily mean a person has any form of Ehlers Danlos Syndrome as it is a symptom of many connective tissue disorders. Some people are just naturally more flexible too.
With EDS, the matrix of the connective tissue itself is incorrectly created through faulty genetic coding which causes the hypermobility. It also causes the tissues to be stressed and damaged by every day living. Bruising is very common.
In the US, it is important to be examined by a geneticist familiar with connective tissue disorders to ensure a correct diagnosis is given. There are other CTDs which are very similar to EDS but are treated in a totally different manner. It is important for these to be ruled out with genetic testing.
There are genetic tests for every type of EDS except for hEDS although research is continuing. Again, the diagnosis of hEDS or HSD is given only after all other disorders have been eliminated.
Go through the hEDS checklist to see if you meet the criteria. Speak with your physician regarding your symptoms and ask for a referral to a geneticist. Then let them decide if it is EDS or something else.
Since there isn’t a cure for any form of EDS, people are treated based on their symptoms. Many of us see specialists such as EDS aware geneticists, gastroenterologists, neurologists, physiatrists, orthopedists, cardiologists… the list goes on and on.
Perhaps your physician will be willing to prescribe physical therapy to help with the pain and fatigue. Many people use over the counter pain medications, muscle rubs such as Biofreeze, Tiger Balm, and Salonpas, along with soaking in an Epsom salt bath. Hot and cold packs help too.
Getting a diagnosis can be a double edged sword though. There are quite a few doctors who refuse to treat people with EDS as they feel unqualified to manage a rare disorder and have the right to deny services. This causes a person to be pushed to other facilities farther away. Some people have even been denied insurance coverage. Others have found their doctors will blame EDS for other new symptoms and not look for other health issues. Nothing is easy with EDS.
By the bye, many people here are willing to answer questions regarding their experiences with EDS although some are more reluctant to put personal medical information on a public thread. This setting allows anyone on the Internet to read it.
This can be edited on your original post by clicking on the ”shared with the public” and selecting the “shared with members” setting.
The default for each new post is the public one so you must choose members only if indeed you wish to do so. There is an option to private message individuals also.
Good luck in your quest.
Hope this information helps,
I am sorry that you have had a hard time. I was considered a clutz and lazy growing up and beyond. I had sprained my left ankle so often that I had to have my ligaments repaired. I was diagnosed in my early fifties. What I don’t understand is why you have not seen an orthopedic surgeon. I have no idea where my hEDS came from. It may have my maternal grandfather. We don’t know a lot about his family history and he passed away when my mom was pregnant with me. Depression comes with the territory I think. Welcome and you will find a lot of kind people here. Just know you are not alone in this.
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