Banner - Hide this banner





Author Topic: Some more Q's to my odd bod buddies  (Read 3829 times)

0 Members and 1 Guest are viewing this topic.

Offline rhea

  • SuperKNEEgeek
  • *****
  • Posts: 804
  • Liked: 0
  • I think I can, I think I can, I think I can.......
    • Budgie Love!
Some more Q's to my odd bod buddies
« on: January 27, 2003, 08:44:10 PM »
Hi Everyone,
Its surprising how much of my body probs. can be attributed to this EDS/marfan's thing.   I have a few weird body quirks I wanted to ask you all if you have too.  Just wondering exactly how much of this can be attributed to my condition.  So here goes...

Brittle bones?
When I was a child I broke both arms and a wrist all on seperate occasions (age 3, age 6, wrist broke @ age 11).  Could this be attributed to faulty connective tissue.  From what I have read, my long limbs can be attributed to my bones not having much resistance from the connective tissues to grow against so instead of being of normal length and strong, they are long, and vulnerable to breaks?  Have any of you had many fractures in childhood?

Skin Discolorations?
My knees, calves, and feet like to change colors, usually in the evening, when I stand up for say 5 minutes( to brush my teeth for example).  The skin turns a reddish/purple color with white splotches (about 0.5 inch to 1 inch in diameter) with purple outlines.  And the other day when I stood up my L foot turned purple!!  Even the toe nails were purple, but as soon as I lay down, 5 minutes later is was a normal skin colour again.  Could this be somehow linked to EDS/marfans/hypermobility?  Has anyone else experienced such things?  

Minor Nose Bleeds
Okay, I really hope I don't gross you all out with this one lol.  For the past three and a half months my left nostril has been having frequent nose bleeds.  I think what happens is that a capillary or little vein or something bursts and then it bleeds (not a huge amount, but enough to require shoving kleenex up my nostril for 5 minutes LoL :D).  Anyone else have similar experiences?

LoL well I guess that is all of my questions!  I really hope I didn't gross anyone out with the last one.  Thanks everyone for any input or hypothesis you have!  I hope you are all doing okay and not having a too terrible pain day.

Big (((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 wriggley

  • Regular Poster
  • ***
  • Posts: 102
  • Liked: 0
  • Bad Spellers of the World Untie!
Re: Some more Q's to my odd bod buddies
« Reply #1 on: January 28, 2003, 01:25:30 AM »
yup i know where your coming from Rhea.

The nose bleed thing and the funny colour body parts.  I had nose bleeds all the time right up until i had just turned 19 when i broke my nose.  That stopped it! lol I dont recommend this solution though

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

Offline Shazinoz

  • SuperKNEEgeek
  • *****
  • Posts: 1029
  • Liked: 0
  • G'Day from Australia
Re: Some more Q's to my odd bod buddies
« Reply #2 on: January 28, 2003, 09:06:34 AM »
Rhea the answer to allof your questions is Yes they can all be attributed to connective tissue problems (amongst other things). If you are a frequent fracture'er then you might want to look up Osteogenesis Imperfecta Tard (type 1) this is a Connective tissue disorder that affects the bones (it is also known as brittle bone disease, but the form you see usually on TV etc is a different form making people very short, and deformed). Fractures can also be common in EDS and Marfans. The Skin discoloratioon can also be a part of it too as our circulation can be affected too becuase our vessels etc are "stretchy etc". I have this too. ANd same with the nose bleed, with EDS, Marfans etc our collagen (all of it) is affected and this can make us prone to nose bleeds and the kile (I too used to get these ALL the time), and still get them on and off, one thing that used to set me off was air that was too dry (i.e. heaters on and too dry to remedy this try leaving a container of water in your room to humidify your room and see if this helps.I wasn't grossed out Rhea, and wait until you need to or want to ask questions about "gastric" and "female" problems, I have had to do this and used to get embarrased asking the (questions about bowel movements and urination and periods etc). You can also ask these anytime, if embarassed then IM me or email me. Good luck and Boy these Odd Bods of ours can cause some pretty weird and funky problems don;t they, and it is SO mice to know that Hey this is part of it too WOW.
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 +++

Helen_uk

  • Guest
Re: Some more Q's to my odd bod buddies
« Reply #3 on: January 28, 2003, 06:28:53 PM »
When I sit with my feet down for a long time my feet go purple my fingers and toes go cold in the cold and I get white blotches on my hands in temp changes they lokk like nettle stings but they aent raised like stings.
They arent painfull but look odd.
I get very swollen fingers sore hips stiff neck painfull elbows horrid knees instable ankles but the blood tests have come back neg for rhumatoid so what the hell is going on.
I know I shall have to make another appointment to see the gp but he just says look helen we know you have multiple probs but you have to accept we may never know why and it is just a cruel kirk of nature.
Great But why???? and what is it????
H xxx ;)

Offline rhea

  • SuperKNEEgeek
  • *****
  • Posts: 804
  • Liked: 0
  • I think I can, I think I can, I think I can.......
    • Budgie Love!
Re: Some more Q's to my odd bod buddies
« Reply #4 on: January 28, 2003, 08:52:07 PM »
Thanks Shaz, M, and Helen for your replies.  I find myself saying more and more often "so THAT's why that happens" ever since I was told I likely have eds/marfans.  It's nice to actually be able to attribute these weird bodily quirks to something!

Shaz-Thanks for the offer!  Luckily everything in those departments seem to be functioning well aside from the occasional kidney or stomach pain.  But I will def. take you up on  your offer if I need to!  And yes, I did check out the brittle bones disease but it didn't seem to fit that well.  Thanks for the suggestion though!

And now that I think about it, my nose bleeds have started ever since we've had to close up the house and blast the heat so that is probably the reason!  I just didn't consider it before because for 16 winters before I've never had any nose bleeds.  

Thanks so much my odd bod buddies for your replies.  Jeez, these bodies of ours sure put us through the mill.  I hope you are all having some okay, less pain, days.  

big ((((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

  • SuperKNEEgeek
  • *****
  • Posts: 1029
  • Liked: 0
  • G'Day from Australia
Re: Some more Q's to my odd bod buddies
« Reply #5 on: January 29, 2003, 02:59:11 AM »
Helen,
Have you heard of or been diagnosed with Raynauds (phenomenon or disease). Ths is where the hands and feet go white etc when cold (this is common in Connective tissue disorders , and runs in my family, I was diagnosed at 12).
I also get the purple feet when the hand (wonder if that is a circulation thing too).
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

  • Guest
Re: Some more Q's to my odd bod buddies
« Reply #6 on: January 31, 2003, 05:43:46 PM »
I was diagnosed with Raynauds about 15 years ago now, but only recently due to the connective tissue issues ebing picked up on found out that it was part and parcel of it.

My hands and feet ( and facial features too) go through a delightful array of colours from orange to purple when I get even slightly cold and in stressful conditions too. In really cold condition ( such as feeding the squirrels in Hyde park yesterday!) I lose all sensation in my hands and feet which takes a long time to return. In some areas I have permenant lack of feeling, but it's undecided whether this is due to circulation or nerve damage complication or a combo of both.

I also find that the cold sets of my tremors to...it got rather embarrassing yesterday as the poor squirrels were getting hurled off my violently flapping legs!  ::)

You know it really is freaky to find out how many "other" things you've suffered with over the years are all linked to the underlying cause in the long run. I have several complication of EDS/Marfans that I had no idea were even linked to it until about 3 months ago. Thank to all the people here who have been a big help in putting several of the peices of my jigsaw together.  :)

With love and hopes that you bendy body's are behaving........Jo
xxx

SL99

  • Guest
Re: Some more Q's to my odd bod buddies
« Reply #7 on: February 01, 2003, 01:50:10 AM »
LoL - I used to get forced into playing hockey too...I made the mistake of being good at the darned game! I used to play winger and I made a fearsome site with stick held aloft, maroon hockey skirt held round my skinny little waist with extra saftey pins and bright orange or purple legs....it's not a bit of wonder our team were unbeaten - I simply scared the opposition into yeilding!  ;)

Jo
xx

Offline Shazinoz

  • SuperKNEEgeek
  • *****
  • Posts: 1029
  • Liked: 0
  • G'Day from Australia
Re: Some more Q's to my odd bod buddies
« Reply #8 on: February 01, 2003, 03:03:26 AM »
Hey I too played Hockey as a kid.
As to the circulation problems and Raynauds. Please Please make sure your GP or your Primary Docotr keeps an eye on it (I am on Adalat, a calcium channel blocker to increase the criculation to my hands and feet (mainly due to my RSD, but helps the raynauds too). About 2 yrs ago I watched my Mum in AGONY with her Raynauds (This was vefore she died of the cancer, last Mothers Day) as she go a RARE complication, she suffered from a form of Dry gangrene, where the tips of her fingers died and went this gross black and were excruciatingly painful (She had a permanent infusion pump placed into her belly, that kept a steady dose of morphine and Ketamine flowing through her system, she had to have protective hand splints made up while the doctors "waited" to see where the die back would finish, at one stage there her doctors thought they were going to have to amputate both her hands at the wrist  :o :o :o, but she ended up (and the docotrs can't work this one out AT ALL) somehow saving her hands (eeven though all the special tests she had a few weeks earlier showed that her hands were basically dead from the wrists up, she ened up only having the tips (well to the 1st or so knuckle) amputated on 2 finger, She also was having major problems with her legs too and they started to die off too and they (the doctors) thought they were going to have to amputate both of her legs at the knees  :o :o :o. She ended up again confounding the doctors by somehow making the circulation return to them too (although she was left with permanent nerve damage resulting in a loss of feeling and reduced motor control). Now like I said this is a VER RARE complication, but after seeing my Mum go though it , boy it is worth taking every possible precaution to prevent that. It turns out my Mum's Raynauds was further complicated by another "disorder/ disease" known as Cryoglobulanaemic Vasculitis sp? which also can cause the die back and stuff and is precipitated by Cold, as far as I know this too is rare. We very nearly lost Mum due to this but the doctors in the hospital were so great that we got to have her around for a further about 2 years or so.
So please even though this is an extremely rare complication, just make sure your doctors DO keep a check onit (and wera gloves and thick sox in winter (I have to, and also tend to have to immerse my hands and feet in hot water when the raynauds gets bad to "bring my fingers back from the painful while they go).
I don't want to scare anyone and this complication is very very rare, but AHHHH it is so scary. and Like I said I have found that the medication I am on to increase the blood flow to my extremities for the RSd has the added bonus of doing so for my Raynauds (I guess I will wait until winter and see how much better I am this coming winter). I am told by my GP that becuase my extremeties do have poor blood flow due to my RSD that I will have to double my Adalat in Winter and also wear gloves pretty mcuha ll the time as my hands (right one is the culprit) are no longer allowed to get cold.
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 +++

Helen_uk

  • Guest
Re: Some more Q's to my odd bod buddies
« Reply #9 on: February 01, 2003, 12:11:03 PM »
I saw aguy a few years ago who said I had reynaulds my toes and fingers go white inthe cold and at times my feet go completely purple especially if I am stood for a while or sat for long periods of time.
However the diagnosis was never followed up as I was going through a very bad time with my joint disclocations and was in and out of hospital alot with that the issue got somewhat burried but this winter it has been particulary bad and I have lost alot of feeling in my feet when I have been out in the cold.
I will monnitor it in the mean time but thanks for the advice
H xxx ;)

SL99

  • Guest
Re: Some more Q's to my odd bod buddies
« Reply #10 on: February 02, 2003, 02:40:47 AM »
LoL - yep that would have been me but for the good old safety pins! They kept many a school and gym skirt in place over the years. Infact I still have my last regular school skirt I wore as a 16 year old and not only can I still gte inot it - it still needs the saftey pin to hold it up!! ::)

Hee-hee, I can equqate to the going out in several layers situation too as I always look like an abominable snowman whenever i have to brave the "out there"! LoL - it's just as well our friends and families can recognise us from our blue tinged noses!  ;)

As for the Raynauds thanks for the warning Shaz, I've alwyas been really aware of the risks and dangers of complicatiosn and have never taken this somewhat underestimated little complication for granted. I was put on vasodilators a few years ago when it got really bad and I started getting sores and cold ulcers on my fingers, but sadly I had a bad reactio to them due to my erratic blood pressure and blood clotting problems. So these days I just have to take really great care when it's cold and hope that I win the lotto so I can emmigrate to warmer climes!!  ;D

Stay warm and safe ( or Shaz's situation cold and safe!) my fellow Odd Bod's.

Love.....Jo
xx

Offline Shazinoz

  • SuperKNEEgeek
  • *****
  • Posts: 1029
  • Liked: 0
  • G'Day from Australia
Re: Some more Q's to my odd bod buddies
« Reply #11 on: February 02, 2003, 04:13:55 PM »
Jo, have you tried calcium channel blockers for the Raynauds (that is what I am on now to increase blood flow to my extremities becuase of both my Raynauds and my RSD) the one I am on is Called Adalat (it is "Nifedipine". I was on it twice daily at 1st but I got really bad swelling in my legs, so my GP cut it back to once a day (I am on 20mg), but I have to go back up to twice a day once the weather starts to cool down, to prevent and further damage to my extremities (my bone can of my wrist when they were looking for the scaphoid fracture i didn't have showed VERY dimnished blood flow to my right hand and my GP freaked and put me on this med then and there as he says nothing will heal and the cold could cause all sorts of nasties. So I am on yet another med. in my daily cocktail of about (8 -12+ tablets a day).
Just a thought.
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

  • Guest
Re: Some more Q's to my odd bod buddies
« Reply #12 on: February 02, 2003, 04:50:44 PM »
Thanks Shaz, it was actually Nifedipine that I reacted to I'm afriad. All the vasodilator drugs they try me with just send my blood pressure crazy and make be bruise and bleed...  which leaves me pretty much stuffed. :-/

M, If Trinny and Suzannah can find me something sexy in thermal I'm game too!!  ;)

Love.....Jo
xx