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Author Topic: Out of interest....  (Read 17383 times)

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Offline Shazinoz

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Re: Out of interest....
« Reply #30 on: December 20, 2002, 12:25:22 PM »
Rhea,
I don't think I walked late but I believe I NEVER crawled like a "normal" child a sort of did this butt scoot thing where I pulled my body along with 1 bent leg. (I wonder if this is related). I was a VERY clumbsy child (and adult  ::) ). I can't ask now to see if I walked late as Mum was the only one I could ask, and since she passed away, I guess I will never know.

I believe that the walking/crawling thing is becuase we tend to be to flexibe to hold ourselves up and also that Hypermobiles (those that suffer the connective tissue stuff anyway) can suffer from Hypertonia (Low Muscle Tone, be Floppy babies).
These same symptoms can ocur in any children we have (So those of you with kids , think back to what they were like as babies/toddlers were they floppy?, did they crawl late or normally?? did they walk late?? this may indicate if you have passed this onto your children.
Most if not all of these disorders are dominant (ie. your kids have a 50% chance of having it)...

Hope this Helps...  :-/
2 ACL 'reco's', 3 'scopes', Pain, JRA, EDS, RSD, CMP, osetochondral defect & #, synovitis, adhesions, nerve damage, foot drop, MCL damage, tendonitis, fibrosis, ligament damage AGAIN, dislocations +++

Offline wriggley

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Re: Out of interest....
« Reply #31 on: December 21, 2002, 06:20:09 PM »
hi guys

i was just reading about the crawling thing... i didn't crawl either i rolled everywhere.  A question for u guys... i saw a new OS the other day and he said there was NO WAY i was hypermobile just because i used to play lots of sports.  I even told him about multiple dislocations and the hyperextension at knees and elbows etc etc.  So what do u guys think cuz you lot especially Shaz seem to know more about this stuff than the Docs do

Your confused friend  ;D ??? ;D

wriggley
Paraplegic(inc. L5) due to a spinal cord bleed along with previous knee and hypermobility problems

Offline Shazinoz

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Re: Out of interest....
« Reply #32 on: December 22, 2002, 01:54:22 AM »
If you meet the criteria of either beighton or carter and wilkinson ?sp. Then you are classified as Hypermobile, if on the other hand you also have further problems such as Pain, dislocations, "internal" problems, heart, eye and other organs (yes including the reproductive system and Gut), have stretchy skin, skin that tears, is doughy, soft (unusually so), you bruise excessively or  easily, you scar easily or get very wide scars (a a whole host of  other problems) then you are said to have one of the HYPERMOBILITY SYNDROMES (anything from HMS to HEDS and all forms of EDS, Marfans, OI (Osteogenesis Imperfecta ?sp, it affects bones mainlyand results in frequent fractures) and other ones too ).
The beighton and carter et al criteria are basically 1 point for each of these you can do on each side of your body. thumbs to forearms, fingers (little ones) to 90 degress to back of hand, elbows to 10 degrees hyperextension, knees to 10 degrees hyperextension, the ability to put hands flat on the floor with your legs straight and together (this gives you a total of a possible 9, anything over 4 is classified as Hypermobile).
And if you use the Brighotn Score  found at
http://www.hypermobility.org/diagnosis.shtml then you can see if you have one of the Hypermobility Syndromes (this is mainly for HMS, but HMS is the diagnosis given if the more serious disorders are excluded ie EDS and Marfans and OI).
Arthralgia is Joint Pain.
Hope this helps, the problems with a lot of doctors is that they simply don't know enough about this (if they know anything) and we tend to have to educate them on what they can and can't do with our bodies. I am currently educating my PT on what HMS/HEDS is and how he can help me through PT (I have printed a lot of information off of the NET and am to take this to my next appointment in January (the 2nd).

The best way to find out is you are Hypermobile over (acuried flexibility "from lots of sports" is ask your Mum and dad what you were like as a kid, did you tend to tie yourself in knots and do "party tricks" that most people couldn't seem to do, were you a total Klutz (I was ;D) ie. Clumbsy, Did you used to sit in Odd positions (especially what they call the W possition IE. with your trunk upright, sitting and your feet up beside each side of your bum, so that your legs creat a kind of W where the peak in the middle is your body and the 2 other points are you knees), another give away is that acuired flexibility is lost once you stop doing the movements (ie. a gymnast who had acuired (learnt to be) flexibility generally loses it when they stop (usually within a few years)), where as us Hypermobile just keep on being flexible and freaky ;D
Most of "US" don't ever lose the majority of our flexibility  although some information says that we lose it as we get older, but toher information and accounts I have read say the opposite, that we get more flexible as we get older. Also we are pronel to more joint pain becuase of all of the microtrauma (little tears and sprain) to our bodies that we do at the minimum of daily, you know like when you walk and roll your ankle and others look at you like WOW if I did that I would have broken my leg, and you just keep walking once you right the joint. Even though we may not always feel these we are causing micr trauma to our bodies all day everyday (basically) and as we get older this tends to come back and haunt us.
Also people with Acuired flexibility DON'T dislocate or sublux when they sneeze, cough, roll over in bed, get out of a chair etc etc etc etc  WE DO...

This OS you saw wriggley needs to go back to school and learn the difference between acuired flexibility and genetic hypermobility; we were BORN this way, and yes we may have played a lot of sports when we were young (especially thing that use flexibility to an advantage things like gymnastics, ballet, swimmina dn anything where being flexible is good) and this was becuase we were so natural at them, and we didn't realise why, until our bodies rebelled against us and we started to wonder why we got hurt ALL THE TIME (things like sprains, strains, tendonitis etc etc) and why we could still do those party tricks that GROSS others out (you know the ones i am talking about, the ones you have been doing for as long as you can remember , simply because you CAN).

Hope this helps (Sorry I went on and on and on and on)
But ths is a subject very close to my heart (well very close to my entire body ;D)

« Last Edit: December 22, 2002, 01:58:26 AM by Shazinoz »
2 ACL 'reco's', 3 'scopes', Pain, JRA, EDS, RSD, CMP, osetochondral defect & #, synovitis, adhesions, nerve damage, foot drop, MCL damage, tendonitis, fibrosis, ligament damage AGAIN, dislocations +++

Offline Shazinoz

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Re: Out of interest....
« Reply #33 on: December 22, 2002, 01:10:31 PM »
But I bet that your Hypermobility helped you in your chosen sports M.
I was actually put into ballet and Gymnastics by my GP when I was 4 becuase I was so clumsy and "un co-ordinated" turns out I was just Hypermobile and Hypermobility is made WORSE by these sports DOH!!!
I am 31 and I am getting looser not tighter in joints and boy oh boy do I hurt now  :o :o. Hate to see what I will be like at say 60 or 70  :o :o :o.
I can't do the foot behind the head anymore as my knees protest way to much and my left one is lucky to bend some days. I can do the finger things and the shoulder thing (although the reco'ed shoulder not at present doesn't do to restretch the reco. ;D, and the feet in opposite direction thing I do that all the time LOL
« Last Edit: December 22, 2002, 01:12:22 PM by Shazinoz »
2 ACL 'reco's', 3 'scopes', Pain, JRA, EDS, RSD, CMP, osetochondral defect & #, synovitis, adhesions, nerve damage, foot drop, MCL damage, tendonitis, fibrosis, ligament damage AGAIN, dislocations +++

SL99

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Re: Out of interest....
« Reply #34 on: December 23, 2002, 01:53:26 AM »
Yeah, I can do the afore mentioned too - much to my previous OS's delight! (He'd have kept me as his pet freak if he could have!) I've always been able to put my feet behind my head and as a child I regularly sat in the "lotus position" apparently. I can do the feet in opposite directions thing and I can also rotate my legs so that both of my feet are either pointing completely inwards or outwards such is the ROM in my hips. I can also "fold" my legs and arms up on themsleves too..if you know what I mean?

As for the crawling/walking thing, I apparently walked by the age of one, mainly because I've always been a stubborn and determined little tyke! But I never really crawled properly according to my Mum, and I had a tendancy to do so backwards too!  ::)

Oh before I forget I have yet another question for my fellow oddbods! Do any of you have strange hard kind of pea like lumps under the skin? I'm finding more and more on my arms and legs and they are starting to get a little tender too. Any ideas?

Jo
xx
« Last Edit: December 23, 2002, 01:54:42 AM by SL99 »

SL99

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Re: Out of interest....
« Reply #35 on: December 24, 2002, 02:16:04 AM »
Thanks M, I did a little reading about the spheriods and they sound pretty much like what I'm finding on my arms and legs now - will mention it next time I see the specialist.

Hee-Hee, could you imagine how freaky all those pictures of our "tricks" would be!! That's a cool idea - a sort of oddbod gallery... ;D

By the way by folding my limbs up I mean I can pull my lower leg back up parallel with my upper leg and rest my foot on my hip....same with the arms, I can fold my wrist rightup under my arm pits...hmm, it is kinda hard to explain...maybe we do need that gallery?!  ;)

Jo
xx

SL99

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Re: Out of interest....
« Reply #36 on: December 24, 2002, 07:06:37 PM »
Quote
Oddbods Gallery would be good - I'll get clicking with my camera after Christmas  ;)


LoL - we are going to get some very funny looks when we go to Boots to pick up our photos!!!  ;)

By the way, what you described sounds identical to the lumps I have - very hard and slightly moveable under the skin. I can actually "grab" them and feel the full circular shape of them. Is that like your Spaniels?

You know when you mentioned about your dog having similar sheriods to the ones I appear to have, I couldn't help but chuckle. You see when my OS first mentioned the surgery I would originally need (deemed not suitable now due to the connective tissue issue) the only references I could find on line to the type of procedure I required was in dogs! Maybe someone's trying to tell me something here? It's not an OS I need...it's a vet!!  ;D

Love and Chrsitmas wishes to all - hope you have good, healthy and painfree one  :)

Jo
xx
« Last Edit: December 24, 2002, 07:11:08 PM by SL99 »

SL99

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Re: Out of interest....
« Reply #37 on: December 24, 2002, 09:21:44 PM »
LoL - I do know a few cute vets ( ;)) but unfortunately my regular horse vet offered to put my down when told of my knee problem!! :o

I'm completly with you on envying Shaz her sunny Chrsitmas! I was fortunate enough to spend Christmas 95 in Australia and it was a wonderful if a little surreal experience. I mean walking through shopping malls in 40 degree heat wearing shorts but listening to White Christmas is a wee bit mind boggling!  ;D

By the way whereabouts in the Uk are you M? I'm "up north" in the frozen  broders of Durham/Yorkshire. Where ever you spend your Christmas and however warm or cold it is I hope it's a good one!

Love......Jo
xx

SL99

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Re: Out of interest....
« Reply #38 on: December 26, 2002, 09:19:14 PM »
Oh my word what a small world it is! I live in Stockton-on-Tees!!  :o

My Dad works in Hartlepool and I have relatives in Redcar and Durham. I also worked/competed in many of the picturesque places you've mentioned during my equestrian career too.

I love Whitby, Northallerton, Ripon etc and my family and I often takes drives out there during what passes for summer up here and enjoying the wonderful scenery and sunsets on the gorgeous Yorkshire Moors and Dales...although I do miss being able to walk around them these days.  :(

Wow, I just can't beleive the amount of coincedences their have been with so many people here on the forum - this takes the biscuit though!  ;D

Hope you all had a great, painfree Christmas!

Jo
xx

SL99

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Re: Out of interest....
« Reply #39 on: December 28, 2002, 01:41:40 AM »
Stockton has changed a fair bit over the past few years, sadly leading to a decline in the fantastic markets you mentioned. New shopping areas and bus depots have been built and the centre has been pedestrianised making it all very modern, but it's lost a lot os it's character and charm in my view.

I actually live just outside of Stockton in a place called Norton and have great views across to the moors and hills. I can just imagine the hassle getting to richmond without a car would present...I'm eternally grateful to my chauffeur on that score ( Read my long suffering father! ;) ) It is gorgeous out that way though and I think the drives out we did over the Dales and Moors just about kept me sane this year as I've become very restricted to the house now, so my weekly trip out to watch the sunset "up top" was a real treat!  ;D

I've included some links so you can see some of the places we mentioned again:
http://www.thenortheast.fsnet.co.uk/Stockton.htm
http://moors.uk.net/
http://www.yorkshire-dales.com/

Hope these bring back some memories!

I had a lovely quiet Chrsitmas thanks, spent recovering from asking my poor battered bod to do too much before it! Hope yours was a good one too.  :)

Love.....Jo
xx
« Last Edit: December 28, 2002, 01:43:40 AM by SL99 »

SL99

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Re: Out of interest....
« Reply #40 on: December 29, 2002, 01:58:39 AM »
Hee-Hee, this really is getting freaky! He probably lived next door if this strange coincedence is to run it course! ;)

I'm glad you liked the links M, and that it's brought back memories for you. It's funny you mention Ropner Park as it was a regular haunt of mine as a child. I could often be found "fishing" ( read a small net and plastic bag!) with my Grandad and yes I'm afriad I was also guilty of the fashion statement wellies too!  ::)

Jo
xx

SL99

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Re: Out of interest....
« Reply #41 on: December 29, 2002, 07:32:37 PM »
Haha - don't worry M, I'm now in my late 20's and my fashion sense is still none existent!  ;)

Hope you and all my fellow odd bods are keeping well and I wish you all the best for New Year.  :)

Love....Jo
xx

Offline Liz

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Re: Out of interest....
« Reply #42 on: January 10, 2003, 11:29:43 PM »
This is very fascinating... I am hypermobile and have been all my life, but never thought anything of it.  It was just fun to gross out my friends and family by bending my fingers and extremities all different kinds of ways. Then when I started getting treated for a knee problem, my PT said, "You know part of the problem you have with your knee is due to your hypermobility".. he had me do all the tests (I wish I had taken a picture of him hyperextending my leg, it was disgusting), and I could do all but putting my hands flat on the floor, which he says I SHOULD be able to do.  Funny enough, I am stretching more and now I can curl my first 2 knuckles around the bottom of my shoes and my knee is doing a whole lot better.  I always thought being able to touch my toes was enough, but since I have hypermobility that's actually the WORST I should be doing... I find that really funny.  :)

I also have a horrible skin sensitivity... not sure if it is related but I have to be real careful what I use on my face and body.  I've bought creams and whatnot for my face and broken out into gigantic hives.  A friend of mine bought me some Clinique skin products especially for sensitive skin, thinking that it would work... I ended up with a huge rash and scabs on my face for a week after using it once.  :(   It's interesting other people have similar issues that appear to be related.

Liz

SL99

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Re: Out of interest....
« Reply #43 on: January 11, 2003, 02:29:33 PM »
Hi Liz,

Welcome from another flexible friend!  ;D

Sorry that you need to be here, but I really hope that you fin as much help, comfort and friendship form the board as many of us here have over the recent months. Personally it's been absolutely brilliant to just talk to people with similar problems to my own and like mention discover things about yourself and realise you're not alone in coping with them too.

Good luck with your knee problems, I hope they are soon eased for you and enjoy yourself on the site. It's been a real Godsend to me I know that, even if it's just to have somewhere to find some fellow Oddbods!  ;)

With love....Jo
xx

Offline Shazinoz

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Re: Out of interest....
« Reply #44 on: January 11, 2003, 02:51:31 PM »
Welcome Liz,
From ANOTHER Flexible Oddbod Friend.
I too have super sensitive skin and have had since birth (never realised that this was because of or related to my Hypermobility). There are so many things that can go wrong in a body with the faulty connective tissue/collagen that us Hypermobiles tend to have. (everything from intestines and other internal organs to eyes, ears, heart and skin).
M shows in her pics on the oddbod gallery the hyperelastic skin that is very common and a very good indicator of EDS (ehlers-Danlos Syndrome), one of the hypermobility syndromes (Like OI, Marfans, HMS and more) caused by faulty genes for COnnective tissue/ collagen.
2 ACL 'reco's', 3 'scopes', Pain, JRA, EDS, RSD, CMP, osetochondral defect & #, synovitis, adhesions, nerve damage, foot drop, MCL damage, tendonitis, fibrosis, ligament damage AGAIN, dislocations +++















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