Joint Hypermobility/Ehlers Danlos

Hi Guys. Hoping someone can point me in the right direction.

I successfully used Dr. Sarno's approach to heal from chronic pain following injuries from a car accident and some other odds and ends over the years. I'm sort of a poster child for a TMS in many ways, in terms of my personality and life experiences.

Last year, I started having worsening joint pain and swelling that increased to where it became debilitating. Oddly, my joints would feel very lax, like they were slipping out of place. I have been frequently injuring myself, due to how loose they are. It was eventually diagnosed as joint hypermobility syndrome and may be Hypermobile Ehlers Danlos Syndrome (HEDS), although I would need to see a geneticist for confirmation of the HEDS diagnosis. It's believed to be genetic and related to the body not producing collagen properly, which leads to the ligaments that are supposed to support joints being too loose. I suspect my mother, with whom I have a very troubled relationship, has the same thing and it may run in my family.

That said, it's something I've apparently had my entire life and the sudden worsening of symptoms and pain showed up during a very stressful period. People with this condition are very prone to autonomic dysfunction and anxiety. And, there is something called "Asymptomatic Joint Hypermobility," where people have hypermobile joints and may be prone to injuries, but do not have ongoing pain. Given this and my own person history, part of me suspects TMS.

But, I haven't seen anything about the diagnosis in any TMS books I have or online. And, since it's typically hereditary and I keep having regular acute injuries (hyperextensions, subluxations) as opposed to ongoing pain from an old injury, I really am not sure if it could be TMS or not.

I'd like to see a TMS-informed doctor for some guidance, but the only one in my area I could find is not accepting patients. Do you know of any who do a telehealth consults, particularly ones with a background in orthopedics or sports medicine?

Also, could you point me in the direction of any success stories from people with this condition? When I did a search of the site, I saw some folks who posted questions about it, but no one who posted about treating it as TMS successfully.

Thanks for your help and insight.

 

There is a long-time user on here named Dorado who as I recall had EDS and recovered via TMS methods. See this post

https://www.tmswiki.org/forum/threads/how-i-healed-from-a-myriad-of-symptoms.18723/ (How I healed from a myriad of symptoms)

 

I have a friend who has been diagnosed with HEDS. He knows and applies some of the principles of TMS work. He finds that reducing stress, correlating stress and self-pressure with symptoms, and not focussing on the pain itself has helped remarkably. He has had less pain and more activity in the last couple of years. I hope this little report helps. It confirms that even if there is something "physical" causing pain, these techniques can go a long way to helping.

 

Thank-you both. I appreciate it.

 

Hello,

I am from France (so please excuse the mistakes). I also have EDS and I succefully healed (if I can used that term).

In a nutshell, I was suffering from intense join pain since childhood. At around 28, the situation went so bad that I was suffering all day long. I spent my days in bed, incapable of doing anything else. Even taking a shower was a nightmare. Painkillers didn't do anything for me.

I saw one of the biggest specialist of EDS in Europa. He said that it was clearly EDS and that I have to learn to live with that. But I didn't want to resign myself to live like an old lady at 28. So I made a lot of researches, read many books, etc. And I came to the conclusion that it was link to my emotions. I grew up in a very dysfonctionnal family with a lot of violence. I had to shut down my emotions and be the nice girl.

It took me a lot of time working on my emotions, healing my inner child, working on my perfectionnism and learning to say no to people. It wasn't an easy path. But I am so happy I did it! I am now 37 years old, working, doing a lot of volunteer work, and I have 2 girls. I am pain free since 6 years now. I can say now that having these painfull illness wasn't a curse but a blessing because it helped me to do the work to connect to myself, to learn how to be strong, confident, put clear boudaries and to speak for myself . I am so happy now! I love my life.

 

I would second the advice of everyone above. I love this post by Dorado. For something like EDS, I'm not an expert at seeing patients, but I did see it in tissue diagnosis, rarely. I mean, really rarely. 12 years ago, over a period of say 6 six years, I might have diagnosed TWO cases of it based on tissue pathology at a major academic medical center. Always used to be that EDS was rare, one in a million or something like that before 2020. So how did it suddenly become so common today?? What happened to the genome? You can see where I'm going with this...

Sure, there probably are a few percent of EDS patients who have monogenic EDS with very high penetrance. Technojargon for having a single gene mutation that causes the pathology in almost all people with that mutation, usually presenting in childhood or by adolescence. I hesitate to post this link because it contains at least 1,000 nocebos:

https://caringmedical.com/prolotherapy-news/prolotherapy-ehlers-danlos-syndrome/ (EDS & Hypermobility Disorders)

"Caring medical." It cares about lightening your wallet. Just look at the wheel figure and symptom list halfway down the page. Does that remind you of any other condition we know here?

It could be difficult to achieve absolute medical certainty about EDS because this is one of the newer conditions, exploding in prevalence, where there is an incredible amount of misinformation and corporate interest in treating it with expensive therapies. But if it walks like TMS, talks like TMS, then it is probably...TMS!

 

Yes, this is beautiful. Whatever the diagnosis, Liemma has this figured out.