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Author Topic: Out of interest....  (Read 17435 times)

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Offline Shazinoz

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Re: Out of interest....
« Reply #45 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?
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 #46 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
« Last Edit: January 12, 2003, 03:06:33 PM by SL99 »

SL99

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Re: Out of interest....
« Reply #47 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
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Offline Shazinoz

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Re: Out of interest....
« Reply #48 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.
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 #49 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)
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 #50 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

Offline Shazinoz

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Re: Out of interest....
« Reply #51 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
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 Kathy

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Re: Out of interest....
« Reply #52 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
Many dislocations for seven years.
3 stage patella realignment (Fulkerson TTT + LR + Medial Reefing) 10/18/02

Offline Kathy

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Re: Out of interest....
« Reply #53 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
Many dislocations for seven years.
3 stage patella realignment (Fulkerson TTT + LR + Medial Reefing) 10/18/02

SL99

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Re: Out of interest....
« Reply #54 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

Offline Shazinoz

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Re: Out of interest....
« Reply #55 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.
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 rhea

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Re: Out of interest....
« Reply #56 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
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...

SL99

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Re: Out of interest....
« Reply #57 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

SL99

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Re: Out of interest....
« Reply #58 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

Offline Shazinoz

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Re: Out of interest....
« Reply #59 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.
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 +++