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Author Topic: Out of interest....  (Read 17425 times)

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Iona_-Uk

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Out of interest....
« 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

Stacey

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Re: Out of interest....
« Reply #1 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.

SL99

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Re: Out of interest....
« Reply #2 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

Offline Shazinoz

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Re: Out of interest....
« Reply #3 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.
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 #4 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
« Last Edit: December 16, 2002, 01:14:16 PM by SL99 »

Offline rhea

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Re: Out of interest....
« Reply #5 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
7 yrs of knee troubles (maltracking, maybe plica).  
Finally found wonderful OS(#4)!
Diagnostic scope+biopsy schduled for sept 23,2003  
HMS/EDS III
Chronic joint pain,subluxations,microtraumas...

Helen_uk

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Re: Out of interest....
« Reply #6 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 ;)

Offline Shazinoz

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Re: Out of interest....
« Reply #7 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.
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 #8 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

Offline rhea

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Re: Out of interest....
« Reply #9 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
7 yrs of knee troubles (maltracking, maybe plica).  
Finally found wonderful OS(#4)!
Diagnostic scope+biopsy schduled for sept 23,2003  
HMS/EDS III
Chronic joint pain,subluxations,microtraumas...

Offline Shazinoz

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Re: Out of interest....
« Reply #10 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).
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 #11 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.
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 #12 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
« Last Edit: December 17, 2002, 02:01:04 PM by SL99 »

Offline Shazinoz

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Re: Out of interest....
« Reply #13 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
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 +++

Iona_-Uk

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Re: Out of interest....
« Reply #14 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















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