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MISFIT247's Photo MISFIT247 SparkPoints: (1,314)
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7/8/14 5:03 A

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Aw thanks. I know what you mean about friends not understanding, mine are always trying to get me to zumba or on the dancefloor and don't seem to understand that "I can't" doesn't mean "I don't want to", it means I actually can't lol. I've found that most EDS groups that are around are very compassionate, it really is such a nice change from people thinking we're lazy or it's all in our heads.
What's everyone's weight loss plan? Mine (this time round) is to do 10mins of medium/light exercises a day for strengthening, after a week or two I'm going to add in some yoga etc, and gradually work the time up to about an hour every couple of days. Also a calorie controlled diet, so rather than denying myself cake (then failing and eating even more of it than I would have in the first place) I'm just controlling how much I eat. I find it less stressful to eat a little bit of naughty stuff rather than try to cut it out all together. I'm also walking for about 5hours a week at 30minutes each time.

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VEG954 Posts: 796
7/7/14 1:28 P

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Love your post!
There is nothing worse than being alone with EDS.
My friends cannot relate to the symptoms I live with daily.
I love this compassionate team!
Would love to see more posts.

MISFIT247's Photo MISFIT247 SparkPoints: (1,314)
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7/7/14 3:35 A

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Yes it's brilliant to have people in the same boat, especially as many non-EDSers don't really understand why/how some things are difficult for us. It's nice to have other people who will know if I miss a day of exercise it's not down to pure laziness. Also it's encouraging to know that if other EDSers can do it then we can too :-)

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VEG954 Posts: 796
7/6/14 3:31 P

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Hi Georgia!

Welcome to SP and our group.
So glad there is a EDS group!
After all, we are special people!

emoticon

MISFIT247's Photo MISFIT247 SparkPoints: (1,314)
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7/6/14 4:32 A

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Hi I'm Georgia. I suffered with knee problems at age 8, back problems at age 15, now at age 24 I have problems with most of my joints, chronic back pain and poor circulation. I've also had the brain fog for as far back as I can remember. I was only diagnosed with EDS last month after my mum was diagnosed last year after being misdiagnosed a thousand times. In a way it's nice to know there's a reason I don't get a "buzz" from exercise and have so many clicks and creaks and pains, it's also nice that if I get stronger and healthier now then I can deal with EDS better when I'm older, the bad side to it is I feel like there's not much point in doing anything else. I mean in the sense that I will probably be disabled in 20 years so I won't be able to work. (Obviously there is a point to working now and I do, but knowing in 20-30years I won't be able to is rather disheartening.) Anyway I'm hoping to get somewhere near 8st (my pre-baby weight) and build some strength in my joints etc, and a group atmosphere gives me a motivation boost which I normally lack in :-)

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EDS_ELLEN's Photo EDS_ELLEN Posts: 89
6/21/14 5:37 P

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Welcome to the group veg954

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VEG954 Posts: 796
6/21/14 4:27 P

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I JUST JOINED THIS GROUP AND SO GLAD TO KNOW i AM NOT ALONE!

EDS_ELLEN's Photo EDS_ELLEN Posts: 89
6/20/14 9:50 A

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Welcome to the group!

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SEVGI1963's Photo SEVGI1963 Posts: 4
6/20/14 9:06 A

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My story is like Jenny's. I found out the reason for a whole 51 years of so many things when my 22 year old daughter was diagnosed with JHS.

Everything clicks. I bump into everything. I'm always cold. I have Hashimoto's and ADHD and OCD and mood swings that I now think may have been misdiagnosed. I hate bright lights and loud noises and am reluctant to go anywhere.

The list is very long. I am so happy to find a place here to meet other people with EDS/JHS :)

It ain't over 'til it's over.


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JSMITH68's Photo JSMITH68 Posts: 46
4/25/14 11:26 P

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Hi I'm Jenny,

I found out I have EDS Hypermobility in January when my oldest daughter was diagnosed. I am 42 years old with arthritic knees, hip problems, shoulder issues, fatigue... you name it. As the genetic counselor was describing attributes it was as if she was reading out of one of my old diaries. I have always enjoyed being active - until my body decides to not play nice. I am recovering from a running injury and have regained all of the weight I lost last year. Now I am coming up on my 1 year spark anniversary right where I started.

EDS_ELLEN's Photo EDS_ELLEN Posts: 89
2/12/14 1:41 P

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Welcome PEBBLES5410! We are happy to have you join the group and hope you will participate. :)

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EDS_ELLEN's Photo EDS_ELLEN Posts: 89
1/28/14 5:39 P

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Welcome KUKUPIG1! Please join the discussions. We are happy you decided to join. :)

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EDS_ELLEN's Photo EDS_ELLEN Posts: 89
1/28/14 5:37 P

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Welcome GENEVIEVEM49! Please feel free to join in with your own questions and advice. We are happy to have you join us.

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EDS_ELLEN's Photo EDS_ELLEN Posts: 89
1/28/14 5:32 P

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Welcome BRENDABASSOON! Please feel free to join in, ask questions, or offer advice. We are happy to have you join us!

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EDS_ELLEN's Photo EDS_ELLEN Posts: 89
12/13/13 1:52 P

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Welcome WRITING_ZEBRA! Please feel free to join in, ask questions, or offer advice. We are happy to have you join our little group. :)

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EDS_ELLEN's Photo EDS_ELLEN Posts: 89
12/6/13 1:52 P

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Welcome JESSI311! I hope you feel free to post any questions and offer any advice you may have. :)

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EDS_ELLEN's Photo EDS_ELLEN Posts: 89
11/26/13 7:11 P

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Welcome EMMIEGIRL757 and any other new members I may have missed. Glad to have you here. Please feel free to post. We are here to encourage one another as we move towards our weight loss (or weight gain) goals.

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BETH5436's Photo BETH5436 SparkPoints: (5,123)
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7/14/13 12:13 P

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Hi everyone my name is Beth I have had EDS hypermobility as long as I can remember but I also have multiple sclerosis finally got diagnosed with the EDS recently because my joints hurt all the time and have for years now even though I am just 34
I have two beautiful kids and I pray everyday they do not have to deal with the things I have to deal with

Let us endeavor so to live that when we come to die even the undertaker will be sorry. ~~Mark Twain



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ALMYEARTHLYBEST's Photo ALMYEARTHLYBEST SparkPoints: (63,633)
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4/23/13 3:27 P

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Hi emoticon y'all.

I'm Andee. I'm almost 56 years of age, mom to 6 now adult kids, and it's looking like ALL of us have some form of EDS!

We're brand new in this journey and still learning a lot! I'm hoping this team can help me to understand it all a bit better! Docs, as usual, are making me/us crazy!!!

Andee
T-Tapp, Gazelle! Clean eating!
CONSISTENCY is Key!
Tomorrow Is TODAY!
Life can change in an instant!
Don't waste another moment wishing you'd done something, or said something, or learned something -
JUST DO IT NOW!!! :) :) :)


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JAYNESADDICTION SparkPoints: (420)
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4/4/13 4:00 P

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Hi, I'm Jayne, and 38 years old. EDS was ruled in at Christmas. Blood work was inconclusive but I have much of the associated issues. They also told me that I have another rare syndrome that has a lot of the same issues as EDS. My joints are jello. I was on months of drug trials for other conditions before I received my genetic testing results. I keep getting told to lose weight. They put me on Metformin to help but it hasn't done anything. I tried Nutrisystem but it was just too much soy in my diet. This week I cut way back on what I eat and cut out the junky stuff. It's been hard boiled egg whites, turkey lunch meat, soup, Nature Box snacks, unsweetened applesauce, asian pears, bananas, Quaker Medley oatmeal, and tuna. I'm still trying to work in fruits and veggies since I was horribly sick. I may try an elimination diet soon too.

XINGBUG SparkPoints: (62)
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1/30/13 10:13 P

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Hi, my name is Maggie, but XingBug works. :)

I'm 21 years old and I have been diagnosed with hypermobility syndrome. I didn't show any signs of it when I was in high school but after 9 months in the Army, my body pretty much caved in on itself. It's really hard to be in pain all the time and be so limited to what I can do, especially when other people can't SEE my problem and just think I'm being lazy and 'letting myself go.'
I hope to find some folks here that understand how I feel and have figured out how to manage it. I really would like to get in shape and slim down a little more. I went from 185 to 143 after getting on a vegetarian diet, but I'll be honest, that last 15 pounds was me pretty much starving myself for my wedding. Now I'm back to 154... not the direction I wanted to go in. Help!

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11/13/12 7:36 P

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Hi,

So glad this group exists, and that I can interact with others trying to lose/control weight while dealing with the multitude of EDS issues.

I have EDS Type III and go through good years and bad with my health, right now I am coming out of a series of bad years, thus I've regained all the weight I lost last time. I've re-adjusted my diet for a month now and loss 5lbs, but have now plateaued due to limited exercise. Three issues are inhibiting my exercise: lack of motivation due to frustration that "I've already done this once!", pain and health issues inhibiting exercise. Are any of you facing similar obstacles? Any suggestions? Motivation that worked for you?

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JODYSPAM's Photo JODYSPAM Posts: 22
4/26/12 5:47 P

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Welcome, Heather. We're a mixed bag of people who share two common attributes: a rare connective tissue disorder and the desire to live a healthy life! My son (now 30) shares this gene, too, but at least I am armed with enough info to help him understand why he has issues. Not that that ever stopped him from smowboarding, skateboarding, etc, but at least he knew why he hurt like hell after doing those things! :-)





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HEATHEROLESKY's Photo HEATHEROLESKY SparkPoints: (72)
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4/26/12 10:21 A

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Hi im Heather. Im 25 and i was diagnosed in the early months of 2008. Hypermobility is not found anywhere else in my family but my son who is 6 was diagnosed 2 years ago. Hope anyone one who is dealing with this knows that it may be hard but we can do it.

On the way to a healthier me!!!!


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EDS_ELLEN's Photo EDS_ELLEN Posts: 89
2/12/12 9:31 P

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Hi STPHID89 and DONNASUE76. Welcome to the group and to the EDS family. It is a difficult diagnosis to adjust to, but it can also be a relief to finally know what is wrong.

Please introduce yourselves and tell your stories in the introduction forum as well, so we can all get to know you both better.

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DONNASUE76's Photo DONNASUE76 SparkPoints: (10,535)
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1/27/12 7:43 A

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I was diagnosed this past fall, after my niece has had multiple surgeries for problem joints and started gathering information about EDS. Before that, I knew I had joint problems, but that looks normal in my family. I've also invited my sister and niece to join. I'm hoping to find plenty of information about alternatives for exercise and getting fit.

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STPHID89's Photo STPHID89 SparkPoints: (1,719)
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1/21/12 10:58 P

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Hello, I started sparkpeople on the 1st of this year and diagnosed with EDS on the 19th of this month. I am looking forward to getting to know everyone.

Sometimes the smallest things take up the most room in your heart. -Winnie the Pooh


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EDS_ELLEN's Photo EDS_ELLEN Posts: 89
1/3/12 10:11 A

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Welcome to the group SANSIMEONGIRL. We are just getting started trying to form this new group. There was another one on here, but it was deleted by the original owner I think. So we are starting over. Us EDSers have special concerns regarding exercise and diet, so it is nice to have a group on here.

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SANSIMEONGIRL's Photo SANSIMEONGIRL Posts: 139
1/1/12 9:06 P

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Hi, I was just diagnosed last month. Glad to see there's a group here! Looking forward to learning from you all.

"The difference between try and triumph is just a little umph!"
~Marvin Phillips


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EDS_ELLEN's Photo EDS_ELLEN Posts: 89
11/30/11 8:23 P

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hope we can get a few more people soon! :)

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GANADU's Photo GANADU SparkPoints: (175)
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11/26/11 12:24 A

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Thanks for starting this , what a great idea!

Ganadu


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EDS_ELLEN's Photo EDS_ELLEN Posts: 89
11/24/11 10:17 A

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I created this group this Thanksgiving day to invite other people suffering from EDS and related conditions to come together and support each other. Looking forward to having an active group. :)

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lost weight now skin is really, really wrinkled 6/21/2014 7:02:52 PM
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creaky, cracking joints 6/20/2014 9:49:05 AM
Struggles keeping weight on? 11/29/2013 2:08:20 AM
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