Ehlers-Danlos Syndrome (EDS) Community

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Conversations tagged Bones, joints, muscles

EDS Flexibility?

I was recently diagnosed with EDS Hypermobility, however my fingers aren't really flexible as is common in EDS and is commonly used to diagnose. I'm just wondering if anyone else has EDS, but not all of the super flexibility stuff? I mean yeah I'm flexible, but not THAT flexible like a lot of EDS'ers are. Is this common?

Same here, my fingers and wrists are fine but my shoulders are super flexible

Those interested in a Free webinar about EDS and your feet

Dr. Patrick Agnew presents “Foot & Ankle Issues with EDS”

See More at:

http://www.chronicpainpartners.com/dr-patr...

Chronic Fatigue - how do you fight the fatigue?

One of my biggest issues right now with my EDS-4 is the horrible fatigue I have. I can't barely make it through a few hours without needing a nap. Some days I have to take two naps just to make it through the day. As a nursing student, I can't really keep up this napping (I'm on summer break as of now until August).

Do you have chronic fatigue?
If so, how do you cope with it?
Are naps your thing? Or do you guys have any special tricks or methods up your sleeves that seem to help?

Thanks a bunch.
Jamie

Hi! I'm so glad you finally have a diagnosis; the constant not knowing and not being believed is almost worse than the actual pain of EDS.
I'm the same way - I can sleep anywhere and no matter how long I sleep, I don't feel rested. I was only awake for five hours today, yet I'm already back in bed ready to sleep some more.
I try really hard to stay on a schedule with my wake / sleep and It'll be easier this summer, the only problem is that I'm a nursing student working through clinical rotations. My schedule, day to day, is completely different. One day I'll have class at 8am until 3pm, the next day I'll do a clinical rotation from 7 pm until 7 am. It's just very hard to stay on a schedule during the semester.

Besides living on sleeping pills (on top of my other medication), I try not to drink caffeine (except during the semester, otherwise I don't think I could make it through a class). But the thing that seems to help the most is just having a normal routine before bed, regardless of what time it is. I always do about twenty minutes of intense yoga (as intense as I can make it, given the day) in the dark, shower with the lights off and a camomile candle lit, I get out of the shower and begin diffusing essential oils. Then I do about ten minutes of meditation and deep breathing in the dark while my oils diffuse, then climb in to bed. Some nights I'll fall asleep immediately only to be up two hours later and not be able to fall back to sleep. Other nights I'll sleep fine. And still others I'll just lay there all night. I definitely sleep better during the day so I'm hoping once I graduate I'll be able to work as a night shift RN so I can sleep during the days. I'm hoping to just get some more ideas from others on how the handle the constant fatigue because I just can't take a nap during six hours of classes or a twelve hour shift

hi :)
I have some of the same issues you have with EDS. I am also a nursing student and I have struggled with weakness and fatigue too. I am sorry that I don't have an answer on how to fix it though; god knows we both need it haha. I have to take naps often and I feel like an old woman because I can never lift that much. I feel for you when you say your arms are weak and you have trouble keeping up with classmates. We are in the same boat definitely. I truly hate it. What bothers me the most is the fact that no one seems to understand, or even try to. I end up just not telling anyone because they assume I am making up excuses to be lazy. Its hard everyday, but know you aren't alone :) xx

Oh, how terribly bad I needed to read this ❤️ Thank you so much, Hun! It does feel like I'm alone in it a lot. I've tried explaining it to people, especially my classmates and those in my clinical group, thinking - hey we're all nursing students, even if they don't know the disease, they'll be able to empathize and want to know more - and I couldn't have been more wrong. They seem to judge me even harder than non-medical minded people. It hurts my heart so badly so, just like you said, I just stopped telling people, which just leaves me feeling like more of an outcast. I'm so, so sorry you have to go through this as well. We definitely both need some answers on this haha I'll be thinking about you! Thank you so much for your response, again. It means so much to me

rheumatological problems

Fatigue, which limits my activities

I experience join dislocation. In my thumb and right foot I have lost a joint, which makes it "down" a notch, it is much smaller than the toe next to it. My foot is therefore completely unbalanced and even wider than my left foot. Thumb joints that separate and I have small bones of the finger that have separated. I think that an articulation disappeared again .. and my current problem is the ruptured tendon and biceps in my left shoulder, my shoulder that makes me suffer and limit my movements, if anyone can point me to some information for rheumatological complications of EDS.

There are tidbits all over the net, but I couldn't find a definitive source. So sorry you have so much to deal with. Hope you find a decent rheumatologist that can help you.

Rupture tendon and long bicep on right shoulder

So I had a ruptured biceps tendon, but the other tendons are heavily damaged, and all the movements of daily life make me suffer. I am looking for a rhumatologist and a physiotherapist specializing in the disease. If someone can help me...

I am so sorry, what a horrible injury. I hope you can find incredible docs to help you recover.

martacampabadal
moderator

Dr. Jan Dommerholt Webinar on “Physical Therapy for Ehlers-Danlos”

Jan is a recognized expert in the physical therapy diagnosis and treatment of persons with chronic pain syndromes, including EDS. He has lectured at EDNF patient and physician conferences.

See link to recording and slides on the following announcement page:​​
http://www.chronicpainpartners.com/physica...

ankle dislocating 13 times a day on average after falling on it?

I fell and completely dislocated my ankle, with complete bone separation. It loosened the joint massively and the only thing to get my ankle stop is putting it in a cast, how can I explain that to the orthopedic dr. Without sounding pushy? And how can I explain EDS and get him to listen. It'd be very appreciated.