Ehlers-Danlos Syndrome

Anybody else? It looks like I'm going to be diagnosed with this (hypermobility type). It's characterised by very loose/unstable joints (my major joints all dislocate frequently including both my hips) with chronic pain, GI problems, jaw and teeth problems, hernias, mitral valve (in heart) prolapse, extensive/distinctive scarring, and chronic fatigue. It's genetic, and both my mother and her mother also fit the criteria although less affected than me.

Mostly it doesn't bother me too much although the pain gets old, but I'm worried as to how I will cope with the chronic fatigue when commuting to London from Reading to do uni, especially when on placement

Reply 1

keturah

Original post by scannergirl

Hey I have hyper mobility syndrome but not any of the other symptoms of ehlers danlos, it doesn't effect any other part of my body except my joints. There are different types of ehlers danlos some involving just joints(like my type) and others effecting organs etc. Are you having genetic testing?
I am in constant pain and just feel so tired and fatigued. Do you get joint subluxation and dislocations? My shoulders are particularly bad.
feel free to pm me :smile:

(edited 9 years ago)

Reply 2

scannergirl

Thank you

.
Yeah, I get a lot - it's mostly my hips and my shoulder is bad too. I was sitting on the floor once for some reason in the GP's surgery (!) and she gave me a hand up, and she hoiked my arm right out - her reaction when she realised was one of the funniest things I've seen...

Don’t think I’m getting genetic testing as it looks like I have the hypermobile type, there can be some overlap of features (I have a couple of the vascular type and some more of the classic) but hypermobility fits best and because that’s not a single gene they can’t test for it in the way they can the classic. I do have (or at least did, 11 years ago) a mitral valve prolapse, and I’ve had gastric ulcers which ruptured (that was fun) and a hiatus hernia. I do have a long-term eating disorder too though so that probably doesn’t help, lol.
I can manage the pain okay for the most part, it’s more of an annoyance, I think when you have chronic pain below a certain level you just get used to it? I’m just glad mine’s at the annoying stage, I know some people have chronic severe pain :frown:

. The fatigue is a killer though and I’m really worried on how it will impact on my degree, especially as I’ll be commuting 90min both ways and on placements…
Glad I’m not alone :smile:

Reply 3

CrumpledFudge

Hiya, I have EDS too :smile:

I'm starting uni in September to study occupational therapy. I know there's a possibility it's gonna be too physically demanding for me as some days I find just walking from one room to another exhausting for both my joints & my heart, which beats way too fast when I do anything which involves movement & I get extremely short of breath & feel like I can't breathe haha. But if I don't try, I'll never know! I'm determined to become an occupational therapist so I'm gonna try my best to get through uni & placements!

Reply 4

ChristineE96

Original post by scannergirl

Hi there! I've had it since birth. I get the fatigue, dislocation, scarring, etc too. Its also from my mums side. If youre going to uni I highly recommend applying for disability student allowance.

If you have the diagnosis, you can talk to student support in your uni. They can explain to lecturers etc about the condition and how it can affect you. Some unis even go as far as recording lectures to send home to you on bad days.

Feel free to ask me any questions, I can at leaat try and answer! :smile:

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Reply 5

shoogle

My mum has JHS and I have all the symptoms of EDS. I'm seeing a rheumatologist in 10 days and I'll see where it goes from there. I also have sarcoidosis.

Reply 6

keturah

Do you find your joint symptoms get worse at certain times of the month? There is a link between high levels of progesterone and more lax joints.

Reply 7

ChristineE96

Original post by keturah

Do you find your joint symptoms get worse at certain times of the month? There is a link between high levels of progesterone and more lax joints.

I find I get wirst when the pressure is changing in the air. Its a great predictor of rain

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Reply 8

keturah

Original post by ChristineE96

I find I get wirst when the pressure is changing in the air. Its a great predictor of rain

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I get more dislocations and subluxations at the middle of my cycle due to raised progesterone levels. If you go on birth control make sure it's the combined pill of both oestrogen and progesterone not the progesterone only pill.

Reply 9

llpretoria

Original post by keturah

Couldn't agree more, I have Ehlers Danlos too, and initially went on the progesterone only pill but had to change to the combined pill as it made my joints so unstable.