SparkPeople Ehlers-Danlos (EDS) and Hypermobility Syndrome Team Messageboard Support for those with EDS and secondary conditions trying to lose weight, exercise, and eat right. SparkPeople Ehlers-Danlos (EDS) and Hypermobility Syndrome Team Messageboard EDS - Hypermobile with Classic crossover Hi there, <BR> <BR> It looks like there hasn't been much activity here, but I though I'd at least introduce myself and see if anyone is still around. <BR> <BR> I was diagnosed a year and a half ago. This has been a hard year trying to get used to what is happening to my body. But, I'm feeling like I need to get back into the game and try and take off some weight to help my joints feel better. Gaining some strength in the process would be great too. <BR> <BR> So, hello and I hope we ca... Fri, 4 Nov 2016 13:04:01 EST Let's get active! And I mean this team in particular. <BR> <BR> Let's answer some questions: <BR> - What kind of exercise are you currently doing? (Everything counts!) <BR> - Are you doing any of the SparkPeople challenges? <BR> - What would you like from this team (except for support)? <BR> <BR> My answers: <BR> - I'm walking as my main source of exercise. Hiking by the nearby lake along the hiking trail there or just walking in the forest right next to my house. I also have a physiotherapy programme I do e... Tue, 2 Aug 2016 05:05:16 EST New to the bunch! Single momma of 3, hailing from Indianapolis. Trying to get back on track to lose weight I gained while I had my youngest. She is about to be three and it is time to shove away all excuses and get the weight off. <BR> <BR> I love to run and use the elliptical. Trying to get back in shape to run 1/2 marathons again. <BR> <BR> Cooking is a passion of mine and I love trying to develop healthy dishes that are pleasing to the palate. Pretty sure avocados can make most dishes better. <BR> Wed, 20 Jul 2016 14:23:32 EST I'm new Hello, I'm new to this group and frankly a bit disappointed to see it's as good as dead. I hope the group will come back to life again, as I think we need all the support we can to get - and keep - moving. <BR> <BR> So, I have been diagnosed with EDS (hypermobility type) a couple of years ago, and never even knew I was hypermobile before. I just thought others were stiff. <BR> <BR> I can hardly walk because of the constant debilitating pain, so I'm in a wheelchair most of the time, but will... Tue, 12 Apr 2016 06:43:08 EST EDS type 3 here Hello everyone. I'm Krystina. I'm excited that I found an EDS group here on sparkpeople. I'm looking to have gastric bypass surgery. I just entered the bariatric program. I'm wondering if anyone else that has EDS 3 had any complications with surgery? I know I'm having a hard time losing the weight that's required lost prior to surgery. I wear double AFO's on my ankles/lower legs. This makes moving my ankle impossible while walking, stairs, etc. Anyone with similar conditions? Tue, 15 Mar 2016 18:04:15 EST Fitbit Hi all I was wondering what you all are doing for exercising? <BR> <BR> I currently own a Fitbit and walk all over the place. I also garden. Well my family calls it Urban Farming. Lol. So I truly support 3 of my Dr's as well as several of my neighbors. It's a passion of mine and something I can do. My garden is raised 2 feet and I'm about to raise it 8 more inches so I don't have to lean over so much. <BR> <BR> I also do PT with a great one. He Listens to me. If I just can't do it ... Tue, 9 Feb 2016 00:36:31 EST Hello! Hello, I'm Jenni and this might not come as a surprise, but I have EDS. <BR> <BR> I first got joint pains in around age 9-10 and it's only spiralled down from there. Just a few days ago (Monday October 26, 2015) I was diagnosed with EDS after 15 years of going to the doctor to, basically, complain about pains. Well, it wasn't so much during the first 8-9 years because I was underage and hence my mother had to take me to the doctor and she simply didn't want to because I was making it up or m... Thu, 29 Oct 2015 13:51:25 EST Have to have surgery Just found out I have to have surgery to stabilize my bladder. <BR> As I get older the EDS is getting more troublesome. Sun, 3 Aug 2014 08:36:37 EST EDS at 24 Hi my name's Georgia. I've recently been diagnosed with EDS at age 24, and told to lose a few pounds (which I wanted to do anyway). But there are so many exercises I can't/shouldn't do it seems like it's going to be impossible. Anyways, as I'm still young my doctor has said that the healthier and stronger I get now the better I'll be able to cope with EDS as I get older. Which does make sense. I'm just so unmotivated, my friends get a buzz when they exercise, but I just get tired. Anyway I ne... Sun, 6 Jul 2014 04:00:13 EST lost weight now skin is really, really wrinkled My skin needs to be ironed! <BR> Anyone other Sparkers with EDS have that problem? Sat, 21 Jun 2014 16:37:32 EST exhaustion Once again, I have hit a wall - physically exhausted, tingling numbness in feet and hands. <BR> Tue, 13 May 2014 18:04:54 EST creaky, cracking joints Does anyone else suffer from your joints cracking unintentionally? For example, if I have been sitting for a long time and stand up my feet will pop, and knees/hips grind and crack as I start walking. <BR> <BR> The worst is after a night where I finally have a long sound sleep. Sun, 27 Apr 2014 19:55:08 EST Hi I found out in January that my daughter and I both have EDS hypermobility. I am so glad there is an EDS group. Fri, 25 Apr 2014 23:18:32 EST Yay an EDS group!! Hi all my name is Tiffani and I'm from California. I'm a mom to two a 12 year old named Zeron and a 10 year old named Tabytha. I was diagnosed with EDS last February. I'm 33 years old and fought for so long trying to figure out what was going on with me. I had the diagnosis of Fibromyalgia and Depression for many years, but I just knew that there was something more going on with me. While doing research on some of the things I have, I came across EDS in my search. After reading about it I imm... Wed, 5 Mar 2014 16:44:11 EST My Story My name is Jessi. I'm 31 and I've lived in central Michigan my entire life. I was diagnosed with EDS Hypermobility when I was 17. I now have a 10 year old daughter who is also hypermobile. I have never been "overweight." Before my pregnancy with my daughter I was one of those girls who could eat anything she wanted, never exercise, and never gain weight. I was also in a lot of pain. After my pregnancy my metabolism changed, and I am no longer one of those girls! After holding on to my... Fri, 6 Dec 2013 00:16:18 EST Struggles keeping weight on? Recently, I have found that I have mast cell issues in addition to my EDS and POTS (postural orthostatic tachycardia syndrome). As is common to people with stomach issues from all these conditions, I am losing more weight than I initially wanted to. It isn't a problem yet, but could become one. I was wondering if anyone else has a problem with too much weight loss. SparkPeople is for people with all types of weight issues, and some EDSers have the opposite weight issue... was wondering if... Tue, 26 Nov 2013 19:09:00 EST Hi all Hi, I'm Susan, (zleakydome) Funny to me, as I found this group the first topic title I run across is "I am sitting on ice packs" hehehe - and I so often I have been perceived as a bit strange for being almost addicted to this habit. Ice is awesome good stuff. Plagued by a lifetime of imbalance and subluxation and various other things which eds (in one type or other) would explain and a family history to match and after 40 years of being told the pain was in my head or it wasn't real becau... Sat, 29 Jun 2013 10:03:57 EST started water aerobics Today was my first time for water aerobics. I enjoyed it and it didn't hurt at all. Any advice on how to get my heart rate up even more? Wed, 8 May 2013 23:50:39 EST Well, I'm sitting on an ice pack... Hi Everyone! I am so excited to see a group with EDS. I was surfing through SparkPeople, frustrated I keep having exercise set-backs. Recently I bent over and partially dislocated my hip - thus the strategically placed ice pack. <BR> <BR> I know that chocolate isn't necessarily the best analgesic, but it sure works! Misery enjoys snacks! <BR> <BR> I am looking for some ideas to keep motivated and moving. <BR> <BR> Thanks! <BR> Chris <BR> Sat, 4 May 2013 11:46:36 EST First time! I was diagnosed with EDS last week and am just beginning to understand what this means to both me and my children (Connor 19 and Jayne 15). I have struggled with my weight my whole life but have always trudged through exercise and strict diets. <BR> <BR> I am joining the wellness center on Monday because they have water classes.... <BR> <BR> I am looking for motivation and help to keep moving and someone who understands that it isn't all in my head. <BR> <BR> I have been through an inc... Sun, 21 Apr 2013 23:39:20 EST Wow - hello! I had no idea I'd find other EDS Zebras here :D *waves* <BR> <BR> I'm 26, from England, and I've been formally diagnosed for about a year, before that I was called a 'medical mystery' and told I had chronic fatigue...! <BR> <BR> It's so hard to lose weight when you can't move around much huh? I guess you guys will understand :) I've only just started on my journey really. <BR> <BR> I also have dysautonomia, idiopathic angioedema/mcas (crazy weird swelling), and a host of other annoying is... Mon, 8 Apr 2013 14:55:52 EST ME! Speechless! (if you knew me, you'd know that's really, really, really rare!!!) <em>198</em> <BR> <BR> A true, proper intro would be a book - literally! <BR> <BR> Recently my 26yo-dd was dx'd with a "non-specific connective tissue disorder" by a geneticist. <BR> Due to an acute issue with one of her shoulders we ended up with an orthopedic surgeon visit. His interpretation of the geneticist's results is that dd has Ehlers Danlos Syndrome, just not sure how to type it because it may actually be more ... Sat, 30 Mar 2013 14:01:35 EST Glad I'm not the only one! I should have figured that there are so many people on Spark that there would be an EhlerDanlos group, and I'm glad there is! <BR> <BR> I'm a homemaker with 3 kids ages 4 and under, and I have EhlerDanlos3, celiac disease, hip dysplasia, and 93lbs to lose, lol! I can see that there isn't much activity on this board, but its nice to know its out there :) Thu, 7 Mar 2013 21:59:48 EST Hi! I'm eds type 3 and need to lose weight, can't believe I found you guys, so nice not to feel on my own with this. <BR> Problem is I get exhausted easily, and when I'm really tired all I want is sweet stuff. I've been diagnosed with hypersomnia which I think has more to do with eds than my neurologist thinks. I ca sleep 20 hours, get up for ten mins and sleep another 20 hours. <BR> I know I have to lose weight and get fit, I just don't know where to start really. Looking forward to getting to... Sat, 9 Feb 2013 17:39:42 EST So Grateful to have found you guys!! Hello! <BR> I have EDS type III with a whole mess of related conditions and issues including hormone and thyroid problems which have significantly effected my ability to loose weight. I once was a professional dancer and then got sick and gained over 100lbs in just three months. I have gained and lost another 80lbs since then. My greatest success was while on a drug called lupron which shuts down all hormones but once I was off the drug it all came back. I am hoping that I can find solutions ... Fri, 11 Jan 2013 14:15:25 EST Alternative to squats I'm hypermobile (hence joining here) and have the worst of my issues with my knees so I can't really do squats, does anyone know a good alternative to them? Thu, 1 Nov 2012 16:53:08 EST Enjoying Small Victories! I'm hoping others with EDS (hypermobility) are able to savor some of the little but heartening victories that come with gaining a healthier lifestyle. I know that I set myself up with an awfully high expectation at first: if you lose weight, all your problems will be solved. Doesn't happen. What seems to be happening for me is that I am gaining mobility, agility, and stamina, all important to pain management and good mental health. <BR> <BR> Of course there are problems caused by weight alo... Fri, 21 Sep 2012 17:21:02 EST I don't know where I belong I have had lifelong problems with my legs. I have tried three times to loose weight and exercise in the past 10 yrs and have stopped due to pain. Not long ago, I read a post from SP about a lady with severe medical issues who lost a ton of weight. I figured that if she could do it, so could I. <BR> <BR> I started this time by riding a stationary bike. I figured it wouldn't be problematic since it was low impact. It has been about 6 weeks and I have hip pain. I had wanted to ask my dr... Fri, 20 Jul 2012 11:47:56 EST What Activities Work for You? We all know that EDS challenges us daily with pain, fatigue, and mobility issues. We also know that exercise is an important factor in controlling weight and improving healthy living. Still, I know that once I've found an activity that I can actually do without exacerbating my chronic condition, I tend to "beat it to death." It's an obsessive/compulsive thing, I'm pretty sure! <BR> <BR> I love my water aerobics, and I've managed to work them into a habit, but with summer coming and travel lo... Fri, 11 May 2012 10:43:05 EST Trip Survival In about two months we fly to Brooklyn and then Chicago to visit family. I am nervously preparing for the agony of airplane travel and 4 flights of stairs to a walk-up old brownstone apartment, but I am spurred on by the ecstasy of seeing our little granddaughter again. I have upped my water aerobics to 4-5 X week rather than 3-4, and I did the near impossible last Sunday: I walked almost two miles. <BR> <BR> Of course, I'm paying for this everyday with incredible joint pain and rather slee... Wed, 25 Apr 2012 20:52:46 EST I'm Excited!!! I’m so excited to find this team! It has been so difficult for me to find any support and I have now found a group that is struggling like myself and trying to lose weight. <BR> <BR> I was diagnosed with Classic to Severe Classic EDS in October 2009. I have a lot of problems with my ankles. My right one was reconstructed in 2004, my left in 2010. Arthritis in my ankles, knees, hips, hands, and back. All of my joints dislocate on command….or whenever they feel it necessary. Lately I have run... Tue, 17 Apr 2012 00:40:16 EST degeneration in spine This past weekend, I slept wrong and ended up with a pinched nerve and severe pain. My neck x-rays showed definite curvature of the spine, and the physician was kind enough to show and explain the degeneration in the bones of the spine. He said I can expect this to happen repeatedly, and to get a c-shaped cervical pillow for sleeping at night. <BR> <BR> I am relatively healthy and active, but starting to slow way down due to joint problems from EDS. I was wondering if some of you have other ... Mon, 26 Mar 2012 13:21:02 EST New to this Hi everyone. I'm 53, and I've only heard of EDS type 3 a couple of years ago. My niece was having surgeries (multiple) on her shoulders to tighten them up. She was diagnosed with EDS type 3, and I started wondering about myself. The more she talked about what her joints do, the more I recognized myself. Her mother, my sister, recommended the Joint Hypermobility Handbook by Dr. Brad Tinkle, and I recognized several things: as a child, I would do the W-sit on the floor, and in a soft chair I wa... Mon, 13 Feb 2012 06:52:51 EST Hi! My name is Dani. This is my second time on SP. I started the last EDS group butsince I've been inactive on SP for quite a while I guess it was deleted. I started a new account because I'm basically starting over, weight loss, taking care of my joints, the whole shebang. I was diagnosed when I was 18. Been having a rough time with my health because I've simply been ignoring that I have problems. The pain from the increased weight on my joints has persuaded me that that's not a good idea. Sun, 12 Feb 2012 15:40:49 EST Hello! I'm a retired teacher, mother of two adult children, grandmother of an adorable little girl, and wife of almost 42 years. I live in Seattle and was finally diagnosed with EDS-hypermobility (formerly type III) in my late forties after several other (typical) diagnoses. I live with all the usual symptoms and have found that a positive attitude goes a long way. :-) Tue, 31 Jan 2012 13:12:13 EST Diagnosed 1-19-12 Hello! I was just diagnosed with EDS. I am 23 and was diagnosed with RA at 17, It wasn't til I went to the Rheumy for the first time on the 19th I learned even though my test was positive I don't have RA. He then started poking me and seeing how far he could stretch or bend me until it hurt ( never hurt). Did a bunch of Xrays and blood work and stuff (spent all day at his office), and then at the end tells me that He is almost 100% I had EDS also know as Hypermobility Syndrome... I pretty mu... Sat, 21 Jan 2012 22:51:53 EST Hello! I don't know if I should technically be a member of this group because I don't have EDS. However, I have been diagnosed with joint hypermobility syndrome and I am currently trying to cope with tendinitis in my hip as well as snapping hip syndrome thanks to my crappy joints :) <BR> <BR> It has been frustrating because I started SP last year and I was doing SO well and lost 32lbs in 4 months before I had to literally stop all physical activity (even walking to and from the bus stop to get to w... Thu, 12 Jan 2012 15:54:16 EST Hello! My name is Melody. I was recently diagnosed with POTS and EDS III. With the diagnosis, I think I'm better equipped to understand how my body does or does not function and come up with a plan that will help me get back on track with my weight and general health. I know I need to lose weight and build muscle to help take strain off of my joints, but with POTS and the pain associated with physical activity, it seems like a vicious circle of impossibility sometimes. I begin work with a physical t... Sat, 7 Jan 2012 12:31:14 EST