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Author Topic: Out of interest....  (Read 17384 times)

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SL99

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Re: Out of interest....
« Reply #15 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

Offline neil

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Re: Out of interest....
« Reply #16 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.
9-13-02 - present, 4 surgeries to right knee. quad severed, piece of femoral condyle cut off, shaving of patella. had cartilage implant 9-22-03, fluid drain, cultures & manipulation10-21-03

SL99

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Re: Out of interest....
« Reply #17 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

Iona_-Uk

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Re: Out of interest....
« Reply #18 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

SL99

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Re: Out of interest....
« Reply #19 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

Offline Shazinoz

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Re: Out of interest....
« Reply #20 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
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 #21 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).
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 #22 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.....

Offline Shazinoz

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Re: Out of interest....
« Reply #23 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.
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 #24 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

Offline Shazinoz

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: Out of interest....
« Reply #25 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???)
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 #26 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
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 #27 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
« Last Edit: December 18, 2002, 03:47:22 PM by SL99 »

Helen_uk

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Re: Out of interest....
« Reply #28 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

Offline rhea

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Re: Out of interest....
« Reply #29 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?  
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...















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