KNEEtalk

The SPECIALIST'S OFFICE => Joint hypermobility disorders => Topic started by: Iona_-Uk on December 15, 2002, 11:15:35 PM

Title: Out of interest....
Post by: Iona_-Uk on December 15, 2002, 11:15:35 PM
How many of us on here suffer with hypermobility or other tissue disorders.

I am one and Shazinoz is another, itwould just be interesting to see how many of us there actually are.

Love Iona x
Title: Re: Out of interest....
Post by: Stacey on December 16, 2002, 01:21:17 AM
Hi Iona

My OS says that I am hypermobile.  It doesnt really cause me any problesm (other than my knee) but i can tell that it is there.
Title: Re: Out of interest....
Post by: SL99 on December 16, 2002, 02:07:52 AM
I'm afriad you can count me on your list too Iona....I have the full blown weird and whacky connective disorder sadly.Currently waiting to find out whether it's Marfan or more likely EDS type VII.

I'd be really interested to know how many others here have similar connective tissue issues (as my Dad call it!) and hypermobility problems as finding this place has been an absolute God send to me. Just having fellow suffers to talk to and realising that no matter how "outside the text book" your docs tell you your problem is...you're not alone in your fight.  :)

Thanks to all and thanks again to M and Kneeguru for this great addition to the site! We weirdies certainly owe you a big thanks!  ;D

Best wishes to everyone and hopes for catching up with you a lot more in the future,

Love......Jo
xx
Title: Re: Out of interest....
Post by: Shazinoz on December 16, 2002, 02:11:56 AM
Thanx M and Knee Guru for this area.

And as Iona said I am a member :).
I have either HMS or HEDS, and have had problems since birth, it just took 30 years to get a diagnosis. Although a PT suggest I was Hypermobile when I 1st injured my knee in 1993 when I was 22.
Title: Re: Out of interest....
Post by: SL99 on December 16, 2002, 12:46:12 PM
Hi M,

It sure is amazing how much "other" things finally fit into place when you find out about the hypermobility or connective tissue stuff isn't it? I mean for all hearing what I have scared the living daylights out of me it also had a feeling of having the final peice to a long and painful puzzle at long last!  :)

Hope you are doing okay and not suffering too much with the painful bits. You mention that you are very bendy - just out of curiousity, how bendy are people here? My original OS kept threatening to send me to the circus when witnessing the unusual array of postions my various bady parts could attain! ::)

Love and hugs,

Jo
Title: Re: Out of interest....
Post by: rhea on December 16, 2002, 06:14:26 PM
You can count me on in!  The suspected culprits at this point are either Marfan's Syndrome or EDS.  My rheumy is reffering me to a geneticist @ Sick Kids Hosp. so hopefully I will finally get a freakin diagnosis.  I know, just having a name doesn't change anything...but it means so much to me!  To finally be able to attribute all of this stuff to a diagnosis will help my sanity as well.  

Lots of (((hugs))) to you gals!

rhea
Title: Re: Out of interest....
Post by: Helen_uk on December 16, 2002, 07:37:13 PM
Hypermobility is just one of the diagnosis I have had so I tend to refer to myself as just duff????
I dislocate and am remarkably supple for my age a young 38.????
H xxx ;)
Title: Re: Out of interest....
Post by: Shazinoz on December 17, 2002, 01:25:08 AM
 I score 5/8 on the carter wilkinson sp?, but I also have  hypermobility of hips, kneecaps, shoulders, wrists, ribs (OWIE), spine, neck, jaw, toes, feet, ankles, everything but elbows and fingers (they are a bit but bot enough for the scores). I have trouble with ALL joints, I have had 5 knee and 2 shoulder surgeries, and havbe damage to a LOT of other joints including my wrists, thumbs, feet, ankles, hips, pelvis, and more, and i can dand have dislocated/subluxed EVERYTHING includin but not limited to my RIB (yes I have about 6 out at the moment and they ahve been out for a week) OUCH, my pelvis (been out permanently since I was 12) I am 31, my shoulder (before the reco mostly but 1 since, while still in an immobiliser DOH!), my wrsits, thumbs, spine, hips, patellas, I think I may have done my KNEE too, and my ankles, feet, and jaw too.
The main problems with the scales like Wilkinson and Beighton is that they only cover a very small sample of joints, there is a very new diagnostic criteria for Hypermobility Syndromes (not just hypermobility) called the Brighton Score and that is found at :
http://www.hypermobility.org/diagnosis.shtml
now for this the beighton score is smae as carter/ wilkinson) and arthralgia is joint pain.
I score on this 2 major criteria and at least 3 minor (you can't count the major criteria in the minor criteria ie. can't use them twice) so according to that I have HMS or BJHS and this is only in the absence of EDS and the like and I am still not sure if I have HMS or HEDS.
Title: Re: Out of interest....
Post by: SL99 on December 17, 2002, 02:35:53 AM
Well according to the link that M gave I score a rather worrying 9/9 on the Carter/Wilkinson scale - great I finally gte top marks for something and it's bad!!  ::)

By the way M with note to your comment about the Gorlin sign, I can just about touch my nose but not overly impressively! I odn't know if it's linked though but my tongue is pretty hyper mobile and I can fold, tubeand twist it to many small childrens delight!  ;D

Love.......Jo
xx
Title: Re: Out of interest....
Post by: rhea on December 17, 2002, 04:12:44 AM
Those links were all very interesting! I scored 4/9 on the carter/wilkinson scale, and I score 1 major and 4 minor criteria for the Brighton score.  My diagnosis....my bod's messed up!

Hope everyone's doing all right...

(((hugs)))

rhea
Title: Re: Out of interest....
Post by: Shazinoz on December 17, 2002, 11:56:27 AM
As to the tongue thing; I can't do the tongue to the nose thing; I can do the other stuff just not the tongue to the nose thing.
On another side note: How many out there DON'T get the full or any affect fro local anasthetics ??? This is also a sign of EDS type disorders.
I am 1 (my sibs are the same, they just don't work properly, fully or for long).
Title: Re: Out of interest....
Post by: Shazinoz on December 17, 2002, 01:38:24 PM
I have no problems with other forms of anasthetic ie. General, epidural etc) ONLY Local anasthetics.
The web site about this phenomenon is at:
http://www.atv.ndirect.co.uk/Info%20Sheets/local_anaesthetics.htm

I had always wondered why i was absolutely petrified of dentists and could feel small surgeries and surturing under locals (because they didn't work properly or for very long) when I had stitches in 1999 after a huge fall onto my face splitting my lip and such all the way open, the doc had to keep putting local in throughout the stitching and I could still feel it (my sibs are the same and have been like me told that they are imagining the fact that we can feel it) Nice to know we aren't imagining it.
Title: Re: Out of interest....
Post by: SL99 on December 17, 2002, 01:59:47 PM
I have trouble with local anesthetics too. I had a mole removed about 7 year ago and even though the doc gave my three or four times the normal local I still felt every slice of scalpel!  :o

Most of the docs know my situation now though so they automatcally give me huge doses of whatever local they use.

Fortunately I haven't needed an awful lot of dentistry work, but I can remember that what work I have had done has been quite painful. I didn't realise until now that it's not meant to be...and at least now I know why and can hopefully avoid it!

Another out of curiousity question - do any of you have weird allergies? I've developed all kinds of crazy ones over the past few years, some pretty nasty too. I've also become madly allergic to products I've used for years...including soap and deodorant. Anyone else have similar experiences?

Love.......Jo
xx
Title: Re: Out of interest....
Post by: Shazinoz on December 17, 2002, 03:57:57 PM
I am a definate YES on the allergy front.
I have always been allergic to soap, triclosan(in washes and things) and chlorhexadine (hospital wash). But I am now allergic to an antibiotic, strapping tapes (ALL of them), 2 pain killers (tramadol and oxycodone), all sorts of garden plants and weeds, aerosols, creams, some oils, some essential oils (added to massage oils etc), Tiger balm, deep heat,  and so much more. My partner says I am allergic to the world and air LOL.
Some of my reations have been pretty severe (and I am told if I take them again they may kill me) the antibiotic made my entire face swellup like a huge balloon, I had a huge red, hot, raised,  burn like rash on my face from hairline to neck, it was also itchy and my eyes were swelled shut (I was put on steroids for 3-5 days after to bring the swelling etc down), and after the 2 pain killers I scratched my skin until I bled ALL over, I was extremely tired but I couldn't sleep at all, I couldn't think at all, it scared the life out of me (once I could actually think again).

I have some suggestions on the soap and deodorant fronts (for soap you can use sorbolene and glycerine crean or plain sorbolene cream or even pain natural yoghurt) and for deodorant try the Crystal deodoratn you can get from pharmacys (it is made from like a salt crystal thing and comes as a white transparent rock looking thing or a sort of roll on looking crystal (again whie transparent) and you just twist the bottom to allow more crystal out (they also tend to last 1-3 years) and doen't cause any rash etc as there is nothing in it that is artificial) I have been using sorbolene and glycerine bars for about 10+ years now and the crystal deogorant for about 5+ years and no allergy.

Gee our bodys are so weird (I never thought my allergies could be related) I alos suggest to anyone with major allergies or serious allergies to get a medicalert or medical allert jewellery (I had to after the antibiotic reaction) so at leat now I know that even if I am unconscious I wont be given those drugs (my medicalert bracelet also includes my HMS and RSD).

Hope this helps
Title: Re: Out of interest....
Post by: Iona_-Uk on December 17, 2002, 06:22:10 PM
My main problem with the HMS is that my hips keep dislocating, which can be funny, as I didn't put that on the first post (duh!) I've added it here.

Iona
Title: Re: Out of interest....
Post by: SL99 on December 17, 2002, 06:28:15 PM
LoL - it can be hard keeping track of those pesky dislocations of ours can't it!  ;)

Ouchie on the hip Iona - My right hip subluxs and dislocates, usually leaving me in an embarrassed heap on the floor!  ::)

Shaz, thanks for the suggestions will keep them in mind, I've managed to find one brand of soap and deodorant that I can use for the moment but I have a tedency to develop an allergy to them just when I think I'm safe!

Like you say - the joys of having weird bodies!

Love to all,

Jo
xx
Title: Re: Out of interest....
Post by: neil on December 17, 2002, 08:21:22 PM
hi
i too, am hypermobility, but when i needed elbow surgery my os called it hyperextension.  my knee suffers thru it know, i call it buckling in, even with a brace on.
Title: Re: Out of interest....
Post by: SL99 on December 17, 2002, 08:55:10 PM
Hi Neil,

Welcome to the Oddbods club!  ;D

Sorry to hear you are a fellow hypermobile sufferer though.....I suppose this is one exclusive club that we all wish we hadn't been accepted in to! Hope you aren't in too much pain right now and I look forward to chatting with you some more.  :)

Hmmm, you could have a point about the dental work M, maybe if I get brave I could play guinea pig someday!

Oh and you're not going to beleive this but....I'm actually allergic to Simple products! And also hypoallergenic stuff too....well I did warn you I was weird!!  ;)

Love to all,

Jo
xx
Title: Re: Out of interest....
Post by: Iona_-Uk on December 17, 2002, 10:22:08 PM
M

I can't recommend the Simple stuff highly enough, it's the only thing I can use soap wise which doesn't leave me in a rash.

I also used to use Neutogeana, but it's off the market now.

Iona
Title: Re: Out of interest....
Post by: SL99 on December 18, 2002, 01:00:10 AM
I really wish I knew what it was I'm allergic to as it all seems really weird and differs week to week. I can use a product for a few weeks and be fine with it and then suddenly develop a violent and painful reaction to it.

I had been using one particular brand of deodorant since I was about 12 then bang, three years ago my arms kept swelling up and developing cysts when ever I used it - can't touch the stuff without getting a reaction now! Very strange! ???

Do any of you have generally weird skin? Mine is (as you would expect by now!) a little odd as sometimes it's very doughy and velevety as with EDS and yet other's it becomes very tight and shiny and tends to split easily.

Hmmm, I definitely think we should create this exclusive World Wide Weird Body Club guys!! We could all be official OddBods! ;D

Ah ya gotta laugh....

Love......Jo  :)
xx
Title: Re: Out of interest....
Post by: Shazinoz on December 18, 2002, 01:05:25 AM
I like Jo am allergic to simple products (I come out in eczema) that is why I have to stick with plain boring sorbolene and glycerine bars. and the crystal deordorant.
My hips have been funky lately when I have risen from a chair recently my hip clicks loudly and I can't move, until my hip clicks again and then it just HURTS.
Neil,
Hyperextension is just the movement of going to far in the oposite direction to "normal" and Hypermobility can be the cause of this (or trauma). If you have Hypermobility then this is more than likely the cause of the hyperextension. I hyperextend my knees etc.
I too can hyperextend my knee even with a brace oh (DOH!).
I used to use velvet (which is like a pure soap) as a kid but became allergic to that too. I have had my allergy to soap litterally since the day I was born (the baby wash brought me out in eczema from soles of my feet to top of scalp) they even took me and put me into isolation until they worked out I was allergic to the "infacare", my Mum told them not to use it on my sister 15 months later but they did and smae result).
So I have had a lot of experience with tis. I also have tried QV it works well but is SOOOOO expensive it is like $10+ a bar  :o  :o
Pure sorbolene is the next step for me if i do beome allergic to the sorbolene and glycerine bars.

WE are a weird lot :D
Title: Re: Out of interest....
Post by: Shazinoz on December 18, 2002, 01:10:14 AM
Oh yeah, on the NO anasthetic for dental work (NO WAY) I have a huge phobia of dentists now and my RSD in my right arm makes my jaw and everthign way to sensitive to go near to do any form of dental work .
I have to admit, i generally stay as far away from dentist as i possibly can, and if dental work is needed I always opt for a general anasthetic now, I refuse to have my RSD affected by having simple fillings etc done. Small filing i am willing to try the new "no drill" dentistry where they use a pain free sandblaster thing, but deep filling especially on the right side (my Right arm has the RSD0 I will always opt for a general (and since I am having a general anyway they can do everything while there.)
I feel like a real cry baby saying this but I have had some SHOCKING experiences as a young child, and even worse since the RSD.
On a side note, be caseful that the dentist doesn't sublux or dislocate your jaw (OH been there done that OUCH).
Title: Re: Out of interest....
Post by: SL99 on December 18, 2002, 01:15:09 AM
but is SOOOOO expensive it is like $10+ a bar    


Oh I can equate with that one Shaz! I've literally spent a fortune trying every type of soap and deoadorant under the sun - I even had one specially shipped in for me at one point but developed an allergy to that too. Like I say I've currently got one type that I can use...but I just pray I don't start reacting to that.

Visiting people can be a nightmare as you don't know what soap they use etc and air sprays/perfumes are the bain of my life often leaving me itching or gasping for breath!

I'm even allergic to wool and certain types of fabric too. Actually, I'm going to stop writing now as I'm getting itchy just thinking about this!! ::)

Love....Jo
xx

Oh by the way, going back to the Brighton scale from previous posts - I score 2 major and different 4 minor criteria.....
Title: Re: Out of interest....
Post by: Shazinoz on December 18, 2002, 11:57:48 AM
M,
Fragile skin can be a symptom of EDS, especially the tearing and fragility and the thin and soft skin too.
I to have breathing problems from perfumes and smoke (I can't walk through the purfume/cosmetics departments of a store without holding ym breath and going as fast as i can, otherwise i feel short of breath, neaseous and just GROSS. I always thought it was becuase I am an allergic asthmatic but Hey who knows.
Title: Re: Out of interest....
Post by: SL99 on December 18, 2002, 02:28:14 PM
Hee-hee - this is all completely fascinating!

The allergy situation is really interesting - I couldn't agree more on the perfume/smoke issue M - a real nightmare anywhere you go somewhere isn't it? And the wool things is tricky too....just glancing off someone wearing the stuff is enough to set off the reaction. I remember once I had to dive into a Boots chemist and have the pharmacist smear my arms with antihistamine cream after brushing against a mohair sweater in a shop! The poor guy's face was a picture when I ran in, presented him with two bright red blistered arms and begged for his help!! Bless him...he was ever so helpful and kind though.... :)

Although were not quite sure exactly what components I'm allergic to in deodorants etc, I'm definitely allergic to the alcohol and propellants. I did try Mum for a while but developed an allergy after about two weeks...I'm currently using the special Sanex roll on which has no alcohol and uses micro talc apparently... (hey, I'm no rocket scientist I just use the stuff!!)  ;D

As for the general skin problems, it really is quite weird the difference in my skin from day to day. Sometimes it's really quite squidgy and doughy and the next it's so tight and shiny it looks like my skin is too small for my body! It gets a real sheen to at well, reflecting the light like my Dad bald patch!!  ;)

It's also very pale and I'm covered in very visible veins, particularly on my legs....which brings me to yet another question! Do any of you suffer from Raynauds or circulation problems to do with you connective tissue disorder/HMS? I've had Raynauds all my life and suffer quite badly with it ( which is great living in the frozen north of England!) I find that stress makes it worse too...anyone else with similar experiences?

LoL - now it's me you can't shut up M!  ::)

This has been so great though finding people who I can ask these questions to and discuss the unique problems our conditions present with other people who understand and appreciate them rather than just imagine and patronise. Thank you so much - you really have been a life line and sanity saver to me! ( Who am I kidding - you all know I'm mad as hatter already!!)  ;D

Love to all as ever,

Jo
xx
Title: : Out of interest....
Post by: Shazinoz on December 18, 2002, 02:47:16 PM
Jo,
Count me in on the Raynaud's disease thing I too have had it all my life and was officially disgnosed at 12. My Mum also had Raynauds and a rare form of vasculitis which (not to scare anyone) resulted in her having some of her hand amputated.
I was thought to have Mixed Connecitve Tissue Disorder at 12 also (this I found out when I got copies of my notes last year) and we (my Mum and I ) were Never told of this suspician.
I also have a horrendous family history of autoimmune disorder, mainy Sjogren's Syndrome, SLE (Lupus), Cryoglobulanaemic Vasculitis, and psooibly Scaloderma too.
My skin changes a lot too (I put this down to my eczema, allergies and RSD) but AH HA maybe i is the connective tissue [email protected] strikes again ?? WHo Knows.
WE truly are a freaky bunch.

Another question does anyone suffer from hearing problems such as perforated eardrums (I have done mine about 4 times now, my Mum had permanently ruptured ones as did my materal grandfather, and also tinnitis???)
Title: Re: Out of interest....
Post by: Shazinoz on December 18, 2002, 03:26:44 PM
YEP LOL  ;D :D :)

W do seem to suffer from acute verbal Diahhorea sp? Me especially (I think it is FINALLY realising that you aren't a FREAK OF NATURE and there others out there who actually knows what it is like to live in a non functioning freaky body)

WEll I'll just shut up now before I go into ANOTHER endless diatribe LOL  ;D
Title: Re: Out of interest....
Post by: SL99 on December 18, 2002, 03:44:46 PM
Ha-ha - we do go on a bit don't we!  ;D

As Shaz says though I think it's just the releif of having someone to talk to and with about it all and realising that your not the freak of nature doctors have you beeive and that your not alone either.

M, I have the same trouble with the cold - it takes a holiday to Australia in their summer for me to not look like a snowman! Here in England I'm always white, with a slightly blue/purple tinge apart from the occassional day we call summer here in the north east!  ;)

As for the hearing problems Shaz, yep I've had difficultlies with my hearing since I was born. My tubes don't work properly and I have recurring perforation of the drum as a result of the pressure and fluid build up. I've had T-tubes and unsuccesful grafts before they realsied they couldn't seal the hole because of the pressure and i'm now looking at having permenant tube inserted to aviod the drums blowing every time they heal over.

Oh heck...I've been a slave to the waffling symptom of my condition again haven't i? What can I say officer? I'm a sick girl.... ;)

Love......Jo
xx
Title: Re: Out of interest....
Post by: Helen_uk on December 18, 2002, 09:00:45 PM
I too have circullatory problems and have reactions to alcohol and smoke.
I have had sinus and ear problems reynaulds white fingers and toes in the cold. Very achie joints in the cold or after some food or alcohol.
I too have excema but no probs in the sun in fact I am better in the sun.
I get swolen hands and white blobs on the surface of the skin in quick temperature changes.
of late I have found my disability very limiting and isolating.
Great to have you guys to chat to
H xxx
Title: Re: Out of interest....
Post by: rhea on December 20, 2002, 06:38:27 AM
Wow!  And here I thought I was the only weirdy with the circulatory probs!!!  I am always on the cool side.  My feet, calves, and hands are always ice.  My mom always told me "well that's because you don't wear socks!" etc... but even with socks and warm slippers on my feet still freeze!   Wow, what discoveries we are all making!  

And about the hip thing... My hips do weird things too although I just always dismissed it as another of my *quirks*.  Sometimes, when I am lying down it feels like something slips out of place in my hip, and when I try to sit up I can't!   I physically can't!  I have to make my hip thunk/clunk, and than I can sit up.  I don't know what that is, but now Im kind of wondering if its subluxing there...  Who knows, what crazy bodies we all have!  Who knew that the human body could be so defective in so many ways!  LoL.  

(((hugs))) to you all!

rhea

ps, One thing I read on an EDS site is that people with connective tissue stuff crawl and walk late.  I asked my Mom about it and she said I was infact a late crawler and walker.  I was (much to my tired parents' delight) a stationary, sitting baby until I was over a year old!  Out of curiousity, were anyone of you folks also late crawlers walkers?  
Title: Re: Out of interest....
Post by: Shazinoz 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...  :-/
Title: Re: Out of interest....
Post by: wriggley 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
Title: Re: Out of interest....
Post by: Shazinoz 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)

Title: Re: Out of interest....
Post by: Shazinoz 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
Title: Re: Out of interest....
Post by: SL99 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
Title: Re: Out of interest....
Post by: SL99 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
Title: Re: Out of interest....
Post by: SL99 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
Title: Re: Out of interest....
Post by: SL99 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
Title: Re: Out of interest....
Post by: SL99 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
Title: Re: Out of interest....
Post by: SL99 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
Title: Re: Out of interest....
Post by: SL99 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
Title: Re: Out of interest....
Post by: SL99 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
Title: Re: Out of interest....
Post by: Liz 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
Title: Re: Out of interest....
Post by: SL99 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
Title: Re: Out of interest....
Post by: Shazinoz 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.
Title: Re: Out of interest....
Post by: Shazinoz on January 12, 2003, 12:37:56 AM
Carpal tunnel and other nerve impingements are inherent in the hypermobile individual as when we subluxe we can actually catch and/or stretch the nerves that run through the area, and if the bone 9even the tiny ones in your wrist or feet) don't go back then you can narrow the place where the nerve should run.
I am having this happen a lot at the moment in my Right Elbow and my Right foot, where it goes pins and needles and sort of numb at the same time (if that makes sense).
Hope this helps.
Look up Hypermobility or EDS (Ehlers Danlos) and Nerve impingements sp?
Title: Re: Out of interest....
Post by: SL99 on January 12, 2003, 03:05:36 PM
Along with having the inevitable loss of feeling from circulation troubles I also lave a lack of sensation in my hands and particularly my feet. It's so bad in my left leg that I can't actually tell what the foot is doing unless I look at it and my physio has told me it resembles a partial paralysis injury.

The specialists think it's a combination of the connective tissue problem and the recurrent dislocations and subluxations damaging the nerves in my leg that is causing it.

Oh on the skin sensitivty issues, my hands have flared up again just this last night. Because of the cold weather they have become really chapped, cracked and sore so I put on some cream I have used for years only to get a violent reaction to it and have my hands burn in front on my eyes! I could harldy beleive it, they were bright red, mad hot and felt like they were in a furnace. And all I used was a very basic vitamin E skin repair cream that I've used many times before without trouble...strange!  :-/

Hope my fellow Odd Bods are all okay.

Love.....Jo
xx
Title: Re: Out of interest....
Post by: SL99 on January 13, 2003, 12:46:50 AM
Hmmm, I'd stick with grey hairs too M!  ;)

My hands have finally settled down a bit now and aren't quite so bright red....I've been wearing gloves to avoid confusing traffic! ;D

Taking this allergy/sensitivity issue to another level, are any of you allergic to certain food types too? I've always had a very severe reaction to white chocolate and more awkwardly unknown types of colourings, articficial or natural in some cases. So I have to be really careful with what I eat as a result and avoid any food or drink with any kind of colourings in them just in case.

I'm also allergic to several over the couter Cold and Flu rememdies or anything that contain ephedrine. The first time I took a decongestant caontaining it I thought I was dying as I had a mild anaphalaxis (sp) reaction. Hence it hot lemon and honey drinks and a packet of Kleenex for me now these days!  ::)

Anybody else have any odd allergies? Be interested to hear about them and convince myself and bemused parents/doctors that I'm not the only weirdo out here!  ;D

Love.....Jo
xx
Title: Re: Out of interest....
Post by: Shazinoz on January 13, 2003, 06:29:49 AM
Yep Jo,
I am a weird allergy sufferer. I am allergic to soap (almost everyone except sorbolene and glycerine), an anti-biotic a few pain killers, aerosols, diet coke, most creams and skin products, some weeds in the yard  ::),
and more I can;t think of at the moment (but I know there are more), oh yeah ALL strapping tapes and bandaids/plasters (except the new bandaid advanced healing ones (so far anyway) any for more than about 12 hrs and I have major weeping/blistering/ itchy rash/eczema.
Title: Re: Out of interest....
Post by: Shazinoz on January 13, 2003, 01:59:54 PM
Good Cheap treatments for Eczema and itchy skin problems that us Odd bods all seem to suffer from.
1. Use oatmeal (rolled oats, porridge oats) in your bath and shower instead of soap and as a soothing bath when ithcy and sore (put about 1/2 cup+ of oats in the bottom of a pair of tights and place in bathc when filling with water, rub your bosy all over with this (it sort of goes white and gluey and this is what helps the itchy and is soothing, or wet it thoroughly in the shower and wash all over with the oats (againt he white gooey stuff).
2. a product called "Old Mans Weed" from health food stores is a cream you rub onto the rach/eczema.
3. Aloe Vera, rub it on and also drink it (the jusice you get this from health food stores) this supposedly also works well for IBS and other problems too.

Hope these help (I use the oats a lot and have tried the old mans weed (my neices all use this and it clears there eczema up quickly). My neices also take Aloe vera as a drink since early childhood to help with Eczema and more.

At least the Oats are super cheap and work (believe it or not a VET actually told me about this as they (vets use it on dogs etc with eczema and itchy skin)
Title: Re: Out of interest....
Post by: SL99 on January 16, 2003, 10:33:46 PM
Hmmm, I'm getting curious again...too much time on my hands me thinks!  ;)

I was wondering whether anyone else here had a scoliosis at all? I've apparently had a double twist in my spine since birth although it wasn't spotted until I was about 16. It's not a really severe curve, but it does cause back pain and has tilted my rib cage as it progressed which can interfere with my breathing sometimes. And it has probably been part of the overall problem with my leg deformities and misalignments too although it's possibly a chicken and egg situation!  ::)

I know that Scoliosis can be part of the types of connective tissue disorders I'm being investigated for, but was just curious whether it's a common thing with general HMS too.

Thanks for any answers.  :)

Love.....Jo
xx
Title: Re: Out of interest....
Post by: Shazinoz on January 17, 2003, 06:06:57 AM
Jo,
I too have scoliosis. Mine was picked up while being examined by a podiatrist about 10 years ago (roughly). I don't know how severe mine is (never been told) but have been told it could be part and parcel of my pelvic injury when I was 12 or could have been there before that. My pervis is twisted and tilted porward and one side of the pelvic bone sit lower than the other adn slightly under the other side.
Yes scoliosis is or can be aprt and parcel of EDS/Marfans/ OI and HMS etc etc.
Boy we are a freaky lot  ;D
Title: Re: Out of interest....
Post by: Kathy on January 17, 2003, 10:36:17 PM
Well, I didn't even see this was a section on the KneeGEEKs board until the KNEEguru put those pics up under "know each other"... But I guess I fit into your weird group cuz I could do everything with both sides except my elbows stay in place. I never actually knew this was considered a disorder... I just enjoyed (like most of you) grossing out my friends with my freaky joints. We used to have to reach as far past our feet as we could in gym to test our flexiblity and I reached 11 inches - farther than anyone in the whole school (1st through 8th grade). I can also lay on my tummy and touch my elbows with my toes. My hips, especially the right one, will pop and snap literally with every step sometimes. And the left one will sometimes shift in a disgusting way when I put weight on it. I can curl all my toes under my feet so that you can't even tell I have toes... Wish I could send pictures, but I don't have a digi-camera yet.

As far as skin allergies - YES! Many a Chirstmas gift of scented lotions have been returned cuz I just break out in a rash all over my body. Oddly, I'm not allergic to Victoria's Secret vanilla lotion that comes in the tubes. So that's pretty much all I use.

I have a slight bit of scoliosis according to my GP. It's caused me quite a lot of pain, but is very minor, I suppose.

I also have a few "pea-shaped" lumps. In fact, when I asked my doctor about them, that's exactly what she called them. They are on my lower back, right where your hip connects. I like for my husband to massage them as the seem to be right on some sore spots.

Well, I'm glad I'm not the only one out here with all these strange problems!
Kathy
Title: Re: Out of interest....
Post by: Kathy on January 17, 2003, 10:52:51 PM
I forgot, I also have really bad circulation and hypothyroidism. (low) So I'm always cold. My hubby says he doesn't know how I can be colder than my environment!;)
Kathy
Title: Re: Out of interest....
Post by: SL99 on January 18, 2003, 02:08:02 AM
Hi Kathy,

Welcome to the Odd Bods club! ;D

It's been a real eye opener finding out how many people have hypermobility issues and connective tissue problems. It's been especially interesting finding that other people have similar complications such as the allergies, circulation trouble even doen to the spheriods. It's not until you start talking to people with the same conditions that you learn about what's normal within your abnormal parameters I suppose.

LoL - it sounds like you've had a lot of fun grossing out friends with some of those manouvres you mentioned! I'm hoping to get a digital camera soon so I can join in the freaky fun on the gallery. It's a great idea though and gives us a chance to show the kind of things we have to live with and adapt to - and of course to continue our childhood trend of grossing people out!  ;D

Take care Kathy and once again welcome to our freaksome corner of the forum. Hope you find it both useful and of course fun! I look forward to catching up with you on here in the future.  :)

Love.....Jo
xx
Title: Re: Out of interest....
Post by: Shazinoz on January 18, 2003, 01:01:38 PM
Kathy,
Welcome to the Odd Bods a place for us flexible freaky friends to get together and support each other. I am also guilty of the freaking friends etc out and still can  ;D I have a lot of problems now with Joint pain (arthralgia), subluxations and dislocations, allergies, Raynauds and OH so much more.
WE hypermobiles seem more prone to knee and other joint injuries and other stuff too.
You can be hypermobile without having a disorder, you are said to have a Hypermobility Syndrome when you have Hypermobility + Symptoms be it pain, stretchy/ doughy or soft skin, IBS, and Oh so much more. HMS and the other disorders such as EDS, OI and Marfans and all thought (well EDS, Marfan and OI are all Connective Tissue/ Collagen disorders and HMS is thought to be one, possibly a milder form of HEDS or even HEDS) to be Connective Tissue/ Collagen disorders.
Anyway Welcome and enjoy being able to share ANYTHING knee or otherwise with those who truly understand.
Title: Re: Out of interest....
Post by: rhea on January 18, 2003, 04:59:56 PM
You can count me in on the scoliosis.  Mine is mild (under 25 degrees) but definitly noticeable when I bend over, or if you look at my back when I am in a bathing suit.  We found out about mine two years ago when I had a three phase bone scan.

And hey, the circulation thing!  I am always frigid!  My skin on my arms and legs is always cold to the touch and my feet and hands are ice, even when wearing gloves and socks.  Yet another odd bod trait I guess lol.

Take care everyone

rhea
Title: Re: Out of interest....
Post by: SL99 on January 20, 2003, 08:55:53 PM
Wow thanks for sharing that one M as it does answer another part of the puzzle. My jaw is forever clicking and clunking and I make a heck of a racket when I'm eating!  ::)

It's absolutely amazing all the little gems of information you can find that suddenly slot together to form a bigger picture isn't it?

One more little curio for you....does anyone else get attacks of neuralgia? I get it quite a lot and currently have it the trigeminal region. Making the left of my face veyr tingly and painfully numb, sort of like electrical stimulus. Just wondered if it was something other Odd Bods experienced at all?  :-/

Love.....Jo
xx
Title: Re: Out of interest....
Post by: SL99 on January 25, 2003, 02:38:55 AM
Oops..guess I shouldn't have started talking about jaw problems - mine dislocated again tonight! One minute I'm sucking a sweet, the next cluck I'm stuck with my mouth wide open like I'm trying to catch flies!  ::)

It was really painful this time though and I had to get my Mum to phelp put it back in as I couldn't manage to just click it back like I normally do. Still quite sore now, and I think I'll be avoiding solid food for a few days!

Anyone else suffer with TMJ dislocations? I have to confess that I'm starting to worry about my impending thumb op now with the aneasthetic etc.  :-/

Oh well...here's to soup through a straw...

Love......Jo
xx
Title: Re: Out of interest....
Post by: Shazinoz on January 25, 2003, 07:22:41 AM
count me in on the TMJ dislocations. OUCH I have had to take alium before to get my jaw back in.
Title: Re: Out of interest....
Post by: SL99 on January 26, 2003, 04:05:56 AM
That's really interesting about the different types of hypermobility M...I'm really glad that you don't have the dislocations, as they are something I wouldn't wish on an enemy!  :P

The jaws a lot easier today thanks - I can actually move it which is a start! Still on the sloppy food for a few days yet though I think - glad the tooth abscess has cleared up and hope you are enjoying all that proper solid food again, as I have developed ulcers inside from the force needed to "shove" the TMJ back in to place.  :-/

By the way I've just asked my local library to try and locate a copy of Hypermobility of the Joints for me - so fingers crossed they can find one.  :)

Love....Jo
xx