Hypermobile Ehlers Danlos Disorder and Employment

[Yeshuasdaughter]

A high percentage of people diagnosed with the genetic disorder Ehlers Danlos are also Autistic.

Do you have Ehlers Danlos? Or maybe someone close to you?

Do you work on your feet? How often do you injure yourself on the job? Have you dislocated a joint? Tore a tendon? Do you twist your ankles quite often? Pull a muscle?

What kinds of injuries do you commonly get?

Have you found a way to do manual work without frequently injuring yourself?

If you had to switch professions because of Ehlers Danlos, what field are you now working in?

Are you considered permanently disabled? Do you receive benefits from your government? How far did the Ehlers Danlos get before you qualified for benefits?

 

[Aneka]

I don't have a diagnosis but I have hypermobility, in some joints it's more pronounced than in others. My shoulders are the worst, I can dislocate them at will.

 

[Aneka]

What is strange is that my lower body is much more stable and I easily gain muscles in my legs. I can't do pushups though or pullups, my humerus will dislocate.

 

[Yeshuasdaughter]

@Aneka That does sound a lot like Ehlers Danlos. I think you may have it.

I do have some pretty significant joint hypermobility, but I am not diagnosed either. My upper body is not super hypermobile. In fact My neck and arms are laughably stiff. But my spine from under my ribs, and then every joint down to my toes, are all super hypermobile. It's nice during yoga, to be naturally very bendy. I probably could ride around in my wheelchair in the lotus position if I wanted to. Also, I've always walked or ran with my feet splayed outward because of hypermobility. I wonder if i would have a diagnosis of Ehlers Danlos, if I were to get checked out.

I am, however, writing on behalf of someone else I know who does have a diagnosis, and is struggling in their current line of work. They have so many physical problems coming up, just from having to repeatedly lift 40 plus pounds over the course of a 8 to 9 hour shift. And getting muscle strain, shin splints, and ankle sprains from all the walking.

I really feel for this person, as they were transferred to this department from another where they did not have any physical limitations to the work.

This person is very strong and super stoic and has high endurance. So when they say they are in pain, it is because they have been injured to the point where most of us would lay in bed for a few days. But this person goes on, pretending like nothing is wrong. But I see the pain in their face as they gasp and wince.

I just wish that this person could get another job or if the employer would understand and transfer them back into their old department. But they were already overstaffed in that dept.

I see this person wearing out their body, for a stupid job. It breaks my heart.

 

[Yeshuasdaughter]

What is strange is that my lower body is much more stable and I easily gain muscles in my legs. I can't do pushups though or pullups, my humerus will dislocate.

Does this limit the types of work you can perform? Have you had to quit a job or go on disability because of it?

 

[ZebraAutismo]

I have ehlers Danlos Syndrone (as well as left side hip dysplasia and Spino cerbellar ataxia). im limited in terms of manual labour . I’ve done swimming teaching and for pain, heat regulation issues and balence I always choose being in in the water for this. In terms of shop work I can’t move heavy box but not really expected as a wheelchair user. I can however push a library trolley which is helpful. Im on highest rate pip and limited work capability’s UC ,

 

[Yeshuasdaughter]

I have ehlers Danlos Syndrone (as well as left side hip dysplasia and Spino cerbellar ataxia). im limited in terms of manual labour . I’ve done swimming teaching and for pain, heat regulation issues and balence I always choose being in in the water for this. In terms of shop work I can’t move heavy box but not really expected as a wheelchair user. I can however push a library trolley which is helpful. Im on highest rate pip and limited work capability’s UC ,

Heat regulation issues? Please tell me more.

 

[Aneka]

I too know someone who is a nurse and developed severe osteoporosis, fractured bones and didn't even notice, been sick for months, yet too stubborn to change their line of work. I have also wondered if they are eligible for a degree of disability- but it's getting harder to get it. I know someone with dwarfism and they were denied the degree of disability they needed for a costumised car and they can't afford it on their own as it's very expensive on top of the costs for driving lessons.

I think I couldn't do any hard labour routinely, but I didn't change a job because of it. I changed a job because it was too loud and busy to endure. (I always have to be creative when asked why I quit, you can't tell that on job interviews)

With thoses issues it's probably like the droplet of water eroding the stone, it's the time that does most damage. Although if you have connective tissue disorders like EDS you will experience the damage years before people unaffected by it will. Some jobs like being a nurse or daycare teacher will also be underestimated but it's a lot of hard labour especially if you lift babies and toddlers on a daily basis or transfer patients.

 

[ra49]

I'm not diagnosed EDS altho the rheumatologist sent me home to read a book and see if I think that's what I am

!?!? Thought that was his job to determine, never went back to that guy

When I was young, it was fun being able to twist into pretzel shapes and upside down backwards like a crab on my fingertips and tiptoes. Could never turn a cartwheel as my shoulders couldn't take the weight, but I could somersault from here to the end of the street continuously!

Now I am a stiff achy old lady in PT again for subluxed right hip twice in 6 weeks and what the heck did I do to my left ankle (doesn't feel like it's mine) and foot (@#$*& OUCH) July 1st and still not improved

My fascia is stiff but my ligaments and tendons are too loose, and with the fibromyalgia making all my soft tissue painful, it is interesting conundrum

I loved yoga 15 years but now I hurt myself just trying to get into the poses, and then stuck once I get there, can't get out without help

There's times for everything in life

 

[Luca]

I’ve mentioned several times on here that my hips dislocate and I can’t ride a bike. I haven’t ridden a bike since I was about 20 years old because I was in so much pain that I couldn’t move and I was crying.

Is this what’s causing that? I was diagnosed with “snapping hip syndrome” but that doesn’t line up with my symptoms at all. I’m not in the medical field obviously but I think it sounds like either Ehlers Danlos or hip dysplasia.

 

[ra49]

Luca, maybe you have shallow hip sockets like me?
Gravity is not my friend - Even stepping down from ladder wrong, they will slip out

My yoga teacher subluxed both at once trying to get me into proper shavasana position

PT that I am having now is trying to strengthen everything around to hold it together better

 

[ZebraAutismo]

Heat regulation issues? Please tell me more.

I can’t regulate my body temperature. I’m either hot to tbe point I’m sweating or blue with cold.

 

[ZebraAutismo]

Luca, maybe you have shallow hip sockets like me?
Gravity is not my friend - Even stepping down from ladder wrong, they will slip out

My yoga teacher subluxed both at once trying to get me into proper shavasana position

PT that I am having now is trying to strengthen everything around to hold it together better

Shallow sockets? Is that hip dysplasia