Finally found out what else is wrong with me

[Amberzak]

hi all.

So as some of you may know I've been being referred to neurologists and all sorts trying to find out what's wrong with me. I now walk with a stick and my mobility issues are getting worse.

Fortunately it's not MS like they originally thought. I have a condition called Ehler Danlos Syndrome, hyper mobility type. I had suspected this for a long time but yesterday I finally got confirmation.

The result: pain killers don't work that well on people like me (I could have told you that). Keep using the stick for support. I need to get supports for my knees and wrists, and something for my foot drop. I'm also being referred to hydrotherapy to build up my core.

The numbness and tingling I feel sometimes in my arms is actually a subluxation of my elbow touching my nerve, and not diabetes related (yay) and my trigenimal neuralgia is cases by my jaw subluxations.

I have to be mindful of the strain I'm putting on my body, and when I have a child (we are currently trying) I'm almost certainly going to need to do a suizarian.

I will get arthritis (and it's already starting to happen in my hands) but it's premature osteoarthritis not rheumatoid arthritis brought on by the extra strain my joints go through daily. (As a kid I used to dislocate my fingers and pop them back in, it seemed a great party trick).

 

[Copepod]

Not good that you've got another problem, but a proper diagnosis sounds like it will lead to helpful treatment - hydrotherapy.
Do you mean you would need a caesarian section to give birth?

 

[stephknits]

Good to hear you have some answers. Hope the hydrotherapy brings some relief.

 

[Ditto]

Quite a few of my online friends have similar conditions. Back in the day we thought it was great to be double jointed, doing the crab and stuff, but now I'm glad I'm stiff as a board! Hypermobility is not good.

 

[Robin]

Sorry to hear this, Amberzak, but glad you've got some answers. Isn't that what @KookyCat has? I don't know if she's around at the moment.

 

[Grannylorraine]

At least you have your diagnosis now.

 

[Pumper_Sue]

Sorry you ended up with EDS at least though you have a diagnoses and can deal with it now you know what it is.
Not knowing is always worse than the condition it's self

Ps having a stick does have it's advantages though as people tend to move out of your way so you can pass by easily 🙂

 

[Amberzak]

@Copepod yes that's what I mean.

@Robin ooh, someone else with it? Would be good to chat.

Yeah, kind of gutted there's no real treatment but relieved as well. They gave me strong pain killers before and it just jumbled my mind

 

[Amberzak]

Sorry you ended up with EDS at least though you have a diagnoses and can deal with it now you know what it is.
Not knowing is always worse than the condition it's self

Ps having a stick does have it's advantages though as people tend to move out of your way so you can pass by easily 🙂

Yes. In London I always get a seat on the underground.

 

[mikeyB]

Some folk with EDS can have fragile blood vessels. Do you bruise easily? The reason I ask is that it can make caesareans a bit tricky, but as your consultants will know of the diagnosis it shouldn't be a problem.

 

[grovesy]

Sorry to hear this, Amberzak, but glad you've got some answers. Isn't that what @KookyCat has? I don't know if she's around at the moment.

Not seen her post in while.

 

[Amberzak]

Some folk with EDS can have fragile blood vessels. Do you bruise easily? The reason I ask is that it can make caesareans a bit tricky, but as your consultants will know of the diagnosis it shouldn't be a problem.

Yes I do bruise easily. And I also bleed easily (I have a large number of bleeds with the canula on the pump and find I need to change the canula far more often). But I also have problems with my hips. When the consultant was testing me, he said pretty much my whole body is hypermobile and so he can totally understand why I'm in chronic pain all over.

And to think, when I was a kid my mum used to just say it was growing pains lol

 

[Lucy Honeychurch]

I'm sorry to hear this, but at least you now have a diagnosis and know what you're dealing with.

 

[AJLang]

Amberzak I am sorry to hear this but I hope that it helps that you now know what you are dealing with.

 

[SerialLurker]

Sorry you ended up with EDS at least though you have a diagnoses and can deal with it now you know what it is.
Not knowing is always worse than the condition it's self

Ps having a stick does have it's advantages though as people tend to move out of your way so you can pass by easily 🙂

And if they don't move, you've got something to whack them with ;-)

Amberzak, I have Joint Hypermobility Syndrome (I don't think they were diagnosing it as EDS 10 years ago, but from what I've read it's the same thing).
I've known I was hypermobile for most of my life, but was only diagnosed after complications with/after my first pregnancy. I'm at work at the moment so can't go into more details now, but I'll try and get back online tonight or over the weekend to give you the benefit of my "wisdom" ;-)
If you've got any specific questions, feel free to PM me or drop them here & I'll see if I can answer them. xx

 

[TheClockworkDodo]

Only just seen this, @Amberzak - sorry to hear about your diagnosis, but at the same time I'm glad you have a diagnosis at last, and also that it's not MS. I have a couple of friends with EDS, and I know it's not the easiest thing to manage, but at the same time they are both succeeding in managing it, so it is possible, especially once you know what is causing the symptoms and are getting help with them. Both of my friends have young children, so that is possible too.

You might be interested in Hannah Ensor's blog - she's the patron of the Hypermobility Syndrome Association and a professional cartoonist - she sells communication cards, stickers, posters, and books of cartoons related to disabilities generally and HMS/EDS in particular. She has a lot of experience managing EDS so there are a lot of good ideas on her blog about how to live with it without letting it take over.

 

[Amberzak]

Thanks Juliet