Blue Badge

Trialia

ash4becks wrote: »

thankyou hunny alot of people just dont get how much this affects me thankgod you do and your the same age as me :T:A

theres not a massive difference between hms and eds, tbh i think its more eds with how bad it is

Several of the experts on connective tissue disorders say that there is no difference between HEDS and HMS: that the only real variation is severity. You can find people who are hypermobile who don't dislocate their joints, have no pain at all and are just stretchy - then at the other end of the scale you have people like me, with chronic daily pain and dislocations so frequent we need mobility aids (I walk with a cane, and use a mobility scooter when I go shopping as I can't stay on my feet for very long). I'm on morphine.

I know you're not quite at my stage, at least yet, but I do wish people would listen to the difference between hypermobility and hypermobility syndrome - you don't get labelled with the syndrome unless it causes you problems, and there is no effective treatment for it!

cherub1965

i had never heard of hypermobility until i came on here,sounds awful.will google and have a read up on it.that sounds awful tralia,

ash4becks

cherub1965 wrote: »

i had never heard of hypermobility until i came on here,sounds awful.will google and have a read up on it.that sounds awful tralia,

http://www.hypermobility.org/painandhms.php

the word syndrom must be in the search btw or just means double jointed

Trialia

cherub1965 wrote: »

i had never heard of hypermobility until i came on here,sounds awful.will google and have a read up on it.that sounds awful tralia,

It's not much fun, that's for sure. HEDS/HMS is the reason I have fibromyalgia at all - it's secondary, triggered by all the dislocations.

About half the time I can't wash my hair because lifting my arms for that long makes my shoulders come out. I live in a ground-floor flat because my ankles and hips dislocate - I've sustained 6 concussions in the past 15 years from falling downstairs, and fallen even more times than that. I wind up in A&E on an average of three or four times a year, usually for relocations I can't do to myself - like my jaw and, last time, both my shoulders within a few hours of each other. I was in a double sling for a week after that one.

"Hypermobility Ehlers-Danlos syndrome" may also give you enough as a search term. They're more or less the same thing. I have it in my family; my father has it, but his is somewhat mitigated by rheumatoid arthritis - a double-edged sword in that it actually helps his joints not to dislocate. People with this condition usually wind up with secondary early-onset osteoporosis or osteoarthritis, and sometimes, like me, fibromyalgia syndrome.

A lot of people just see "hypermobility" in "hypermobility syndrome" and assume we're double-jointed and it's actually a good thing. Not so much...

ETA: Also, there's nothing they can really do to stop the larger joints coming out. All they can do for us at present is pain medication - and that only goes so far.

serenity79

I also have fibro secondary to my HEDS, and my Dad has early onset osteo-arthritis in his neck (since his early 30s) which we now realise has been caused by this as well.

I know what you mean about the frequent visits to A&E, I feel like they should set aside a private room for me there. I dislocated my left shoulder a few months ago just by turning over in bed - every time someone saw me in my sling they'd be all "OMG, what have you done?" thinking I'd have some elaborate tale for them. "Ummm.... I was in bed and I rolled over to answer the phone" isn't as exciting as they hoped.

SingleSue

Trialia wrote: »

Eventually she will, though, and so will I. It's what happens with hypermobility syndrome and EDS when you have it badly. Wear and tear lands you with joint damage - my father has early-onset osteoporosis and arthritis from it.

I'm already there....diagnosed with spinal arthritis over 10 years ago at age 30 (doctor wouldn't check until I hit 30), hand arthritis nearly 20 years ago plus many other parts of my body in the intervening years and the list is getting longer by the day.

Edit - I have finally given in and now have a stick as a walking aid. Wrist splints have been worn for the last 3 years.

SingleSue

serenity79 wrote: »

I also have fibro secondary to my HEDS, and my Dad has early onset osteo-arthritis in his neck (since his early 30s) which we now realise has been caused by this as well.

I know what you mean about the frequent visits to A&E, I feel like they should set aside a private room for me there. I dislocated my left shoulder a few months ago just by turning over in bed - every time someone saw me in my sling they'd be all "OMG, what have you done?" thinking I'd have some elaborate tale for them. "Ummm.... I was in bed and I rolled over to answer the phone" isn't as exciting as they hoped.

It's a running joke at our local cottage hospital...they know me by sight and usually ask "Ok, which one of you is it this time?" :rotfl:

jennie-jack

i also have heds and it sucks. im 28 and the proud owner of sticks and braces for knees, ankles wrists. it has caused me to fall almost daily for the last year. i tore my cruciate ligaments dislocated my knee. i need a bath chair just to bath and even then cant wash hair. i got a blue badge just in time to have to give up shopping. i can park outside one shop and go in and out but anything that actually requires walking around i just cant do. i panic when i am out that i am going to fall as it is so embarrassing and people seemed to think you are drunk but if i was old and fell im sure people would help and not snigger.

i am having a hard time with meds and pain at the moment and have struggled to get around, even getting out of bed then requires an hours rest. i had to have a medical to get my dla but when the atos doctor came out to see me i was given hrm and mrc.

ash im not saying you dont struggle or anything but if the blue badge is on the hms side i think you might struggle if it is just a flare up as they always make sure it will last 6 months. people have trouble getting dla full stop for hms because it is often seen as double jointed when it isnt.

serenity79

I get HRM and MRC as well, I also had a Doctor come out to do a medical. When she was asking me about falls and how many I had, I replied probably at least 3 or 4, if not more. 'A week?' 'Oh, I mean a day ' I mumbled, embarrassed! (I can't stay on my blummin' feet!) She made a kind of :eek: face at that! But I was only being honest! Then she went to get me to stand up for the next part of the examination and I started to pass out on her _pale_ so she quickly got me back down again and said 'I don't think we'll bother doing that bit'

I think it helped that she was able to see me in person and see how HEDS and everything along with it affects me.

I have a cane and crutches (which I bought myself), a wheelchair, wrist splints, (supplied) soft knee, ankle and wrist supports for daytime use (bought myself) and some other stuff supplied by the occupational therapist like a bathroom stool etc.

jennie-jack

thats was how my medical went lol. he stood me up and i went a funny colour so he sat me back down really fast and skipped the stairs and walking bit.

i had aspirated the day before so couldnt breath to talk to him, i did tell him that my asthma wasnt usually that bad but the heds is getting worse swallowing wise so i now aspirate often. its crap.

i get my sticks from the hospital so crap colours but i need the filsher(sp) handles or i fall off them.