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Author Topic: New and hopefiul  (Read 1104 times)

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Offline PiercedPrincess

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New and hopefiul
« on: September 02, 2005, 03:54:31 PM »
Hello everyone. My name is Bia, I am from the US,Pennsylvania more particularly.  I have no idea where to start or how to start so Ill just come out and state it anyways....

I believe, Believe being the key word that I am a subject that suffers from Joint Hypermobility Disorder. Seeing that I have never been properly tested for it and was deemed "Over flexible" by some doctors I am not sure, to further complicate a diagnoses I am not an insured and I have no healthcare plans or insurance. Testing, as I hear is and can be expensive, and with being tested and being identified to having such a disorder-would leave me to be non-applicable for a pre-existing condition if and when I do get medical insurance.

But let me share with you what I deal with on a regular basis:

In the mornings, I have stiffness, however it is usually due to dislocations. They are not painful as I am used to the pain and handle the pain very well Starting with my toes, to ankles, to knees and to hips I can crack and dislocate them and or "pop" them back into "place". 

My left shoulder often dislocates through out the day and I also have what many have called "the floating clavical".  I was also diagnosed with TMJ and have complications with the cartilage with in my mandible. That does not slide forward and or premit my jaw to open fully- however sliding my jaw to the side and opening does premit me to open it all the way with a large popping noise.

My elbows crack when I use my arms at angles and I often feel a "space" like feeling between them as if there was nothing there. Then there are my fingers. My right ring, middle and thumb dislocate to the point you can see it, but it is often remedied by pulling and twisting them back-however my thumb has clicks upon moving all the time.

My wrists crack constantly. I am not sure if that is a common thing, however twisting them and moving them up and down in a flexing motion creates a clicking noise, and usually once or twice during the day if I hyper extend backwards a huge release is felt in a popping noise. On my left hand my thumba and pinky finger both dislocate which is remedied by pulling and twisting again.

My right hip dislocates with slight to full turns as well as sitting and spinning to certain positions. My left hip does not bother me, however if I lift my leg while laying down it pops once in a while.

I have hyper extended my knee 3 times in the past ten years, the last time I dislocated my kneecap to the left of my leg, and stretched my ACL and fractured the patella. All in the action of kicking a ball on the ground. The two times before that were simple actions such as trotting and getting out of the bathtub...which was embaressing to say the  least when I called for help.

Anyone with ANY information from medical and or other from expierance please share your opinions and ideas with me. I got interested in this matter while watching a Discovery program of a family in the UK who ALL had it-I know for a fact my mother has joint disorders as well as her brother and my other sister whom was also diagnosed with spinal arthritis...I fear that if I don't find out soon and of possible treatments to prevent I may loose mobility...

I am a professional typist and at night my fingers ache with pain and dislocations due to typing all day and using my hands as a professional Piercer in the US as well. Picking up the phone has become a chour if I stub my finger now a days!

Please....anything!

Bia.
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Bia-Lynne

Offline Linds

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Re: New and hopefiul
« Reply #1 on: September 02, 2005, 08:47:09 PM »
Hey Bia.. I have  a few friends who are almost just like you.  They hang out on another website called the joints joint run by another young woman who has a mosaic disease of EDS/ Marfans.  You should check it out.

http://thejointsjoint.aimoo.com

I hope you get some help.  While right now... you only have stiffness eventually you will start to have severe instability and damage to the joint surfaces if you aren't careful.
Please check out this site, there are quite a few on there that have similar symptoms to you who will be able to steer you in the correct direction.

YOu can do some looking around. Look up EDS, Marfans Syndrome, Hypermobility Syndrome.

Goodluck and hopefully i'll see you over at the Joints joint some time
Linds
1997 Scope RK
2002 LR RK
2002 Scope and hematoma evac RK
2004 LR LK
May 06 Fall from Horse, partial ACL tear and meniscus injury, Tibial plateau injury
2007 Scope, Plica Excision and Debride LK
2009/2010- Possibly Ankylosing Spondylitis?

Offline PiercedPrincess

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Re: New and hopefiul
« Reply #2 on: September 06, 2005, 02:38:03 PM »
Hey Bia.. I have  a few friends who are almost just like you.  They hang out on another website called the joints joint run by another young woman who has a mosaic disease of EDS/ Marfans.  You should check it out.

http://thejointsjoint.aimoo.com

I hope you get some help.  While right now... you only have stiffness eventually you will start to have severe instability and damage to the joint surfaces if you aren't careful.
Please check out this site, there are quite a few on there that have similar symptoms to you who will be able to steer you in the correct direction.


Well I do have surface damage to the knee to the right knee, plus calcification on the underside of the patella. I was told to have a knee replacement when I was 25, I am now that age...but I fear that if I have one that I will also have more complications further down the line...The last visit to the ER for my shoulder showed signs of possible arthritic buildup...however I am not insured and I do not have the money to go and get proper testing. My shoulder usually dislocates more frequently than that of my knee or hip. However they all  happen more than lol what they should. If I sleep wrong on my shoulder, or sleep on my shoulder, it pulls it out of place. Which I have learned to remedy by holding my arm straight out and while placing my other arm under and around the elbow, pull it towards my chest. Usually that does the trick, however there are those stubborn days when I cant.



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YOu can do some looking around. Look up EDS, Marfans Syndrome, Hypermobility Syndrome
.

I have started to look around and I have looked at a few sites with "hometesting" on it, and there was a point chart that I scored fairly high on. All of the joint tests I could do, but one-bending over and placing my palms on the floor. I could, if I wanted to seriously be up all day and night with backaches.  My lower back has been giving me problems since about 17 years of age-doctor at the time said I had a stretched ciatic ligament (I know that was bad spelling, that was totally phonetic) And up until I had my insurance canceled, I was recieving a V-B injection every 4 months. I opted no type of steroids and or treatment that could have long term effects.  My backpain on a scale of 1-10 on a daily basis is usually between 5-8.  Depending on of course the shoes I wear...I have noticed with out a proper arch, it hurts worse (Which I learned in Massage Therapy why). It usually starts with a burning throbbing feeling in my lower back, then the pain usually travels down the sides of my legs and pelvis. It sucks-like all pain.

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Goodluck and hopefully i'll see you over at the Joints joint some time
Linds

I plan on takin a look! Thanks much
Bia-Lynne