Ehlers-Danlos Syndrome

Shawnalee0703
Shawnalee0703 Posts: 1,093
edited September 23 in Chit-Chat
ANYONE?
I have EDS ... it only effects my skin and joints, nothing internal but it sure makes toning up a pain in my A**. I was curious if ANYONE on here also has it, or something similar.

It is basically a lack in connective tissues cause skin to be prone to easy cuts and bruises, velvety and stretchy. As well as VERY flexible joints that have high dislocation risk.

Just curious...

Replies

  • BlissgateClare
    BlissgateClare Posts: 19
    Yep...I think I have it too...will know for sure in a few weeks when I go to London to see Professor Grahame...I also have Chiari 1...there is a strong link between the two conditions...did you know?
  • Shawnalee0703
    Shawnalee0703 Posts: 1,093
    Nope.
    My mom has EDS and so I was diagnosed when I was a baby. I have had no major issues with is other than cutting and bruising easily. I also have some joint issues but I function just fine just take caution in dislocation potential situations.

    I am not sure what Chiari is... I may look that up. Glad I am not the only one out here....
    My biggest issue is that it effects my skin tightening back up after weight loss :(
  • Serenity79
    Serenity79 Posts: 81
    Hi, I have hypermobility type EDS. I'm suffering quite a bit at the minute and find it difficult to exercise so I'm trying to lose weight through diet as much as I can. Will friend you guys in a moment :smile:
  • Shawnalee0703
    Shawnalee0703 Posts: 1,093
    What exercise specifically are you having the most issues with? I don't have many exercise issues or at least not anymore...resistance and low impact are a great way to start. Nice to meet you!!!
  • Serenity79
    Serenity79 Posts: 81
    I have ME and Fibromyalgia caused by my HEDS, so I get exhausted really quickly and my joints and really painful at the minute. I'm using a wheelchair most of the time when I'm going out. I'm doing my physio at home and hoping to start back to hydrotherapy soon (just doing it myself in the pool, my official hydro course has finished) but I'm also doing a little bit on Wii Fit, just the balance games and stuff like that for now. Hoping to build on it slowly. It's never going to 'burn the pounds off' but if it can make me a little bit stronger then I'm more than happy with that and doing the weight through diet.
  • Shawnalee0703
    Shawnalee0703 Posts: 1,093
    Wow! I have heard of the different types and didn't realize how lucky I got...if that's possible. It sounds like you have amazing determination and you are right you can do the right loss with diet.... Food is most of it anyway! Keep up the hard work and I hope you start feeling stronger in no time! hey, search for taramaria...she has fibromyalgia and many other things...down 60 pounds I think...very inspirational woman with an autistic son and an amazing drive!!!
  • Serenity79
    Serenity79 Posts: 81
    Thanks, I'll keep a look out for other fibro sufferers :smile:

    True, if I have to have EDS I'll take the hypermobility type over the other types any day!
  • leighclayton
    leighclayton Posts: 21 Member
    Hi! We're already friends on here and I noticed your post. It's such a small world...my sister in law and several of her children have EDS (the hypermobility kind) and it is challenging for them for sure. Her two oldest teenage sons were playing rugby well above their age class but had to give it up, but now they both excel in music, cello and violin. Anyhow just thought I would mention it.
  • Shawnalee0703
    Shawnalee0703 Posts: 1,093
    Small world for sure.
    So I was diagnosed WAY BACK WHEN it was type 2 EDS lol So, I have the hyperbolity as far as I know AND the skin bit too! I have just lived with it and haven't gotten any care for anything or even really been updated in quite some time. I did attend a support meeting with my mom because her EDS effects her more so than myself. SHe has arthritis is both knees and some serious shoulder issues.
    The main reason behind my strength training is to strengthen my joints in hopes to avoid later issues. I do have some pain but only during sudden weather changes and if i over do it (which takes quite a bit actually)
    I have the lifetime goal of maintaining a healthy weight and keeping my joints strong!
    We worry about our kids being able to play contact sports as well, but that will be addressed when we actually have them. My hunny wrestled for 12 years and played many other sports... we will be sure to find something constructive for our kids to do, if they do have EDS.
    My brother does not have it, and I do. So i know there is a chance! ;)
  • leighclayton
    leighclayton Posts: 21 Member
    My sister in law has really learned a lot over the last several years about how important proper diet and exercise is for both her and her children for their general day to day and long term health. She has 5 kids and they are all very active and nothing stops them from doing what they want to do. Now they just have a lot more awareness about any limitations they may face compared to when she was younger and wasn't aware that she had EDS. It now explains her amazing flexibility and dancing abilties when she was younger!
  • 1234lbsgone
    1234lbsgone Posts: 296 Member
    Glad I found this thread!

    I was recently diagnosed with hypermobility. My daughter was as well. We both have had some other health issues that lead us to believe that we have EDS. We are going to see a genetics doctor.

    I have found physical therapy to be my saving grace. It was my second therapist who figured out that hypermobility was causing everything. He gave me a book on EDS and it described my daughter and I to a T! Even the internal problems. So I brought this info back to my physiatrist and her pediatrician. Needless to say, they recommended seeing a geneticist and sticking with PT.

    What exercizes or workouts do you find to be the safest, without comprimising quality?
  • Shawnalee0703
    Shawnalee0703 Posts: 1,093
    Glad you found me!
    I find that avoiding running distances on concrete helps my knees and since really working on resistance and strength training my joins are MUCH stronger. I experience less slipping of my shoulders and hips. They still ache at times, but recover quickly for the most part.
    I have never needed physical therapy, but I have not had any serious injuries that required it and I have been working on strength training for a couple years now and I notice a big difference in my joint strength. They feel less likely to dislocate and haven't completely come out in some time. I do at times feel my shoulders at a certain angle feel weakening but I have learned what possitions NOT to put them in, ya know.
    That is really interesting that you just found out. My mom was diagnosed with EDS when she was 2 (she is now 50) and I was diagnosed when I was born. My skin and joints are the most effected and I have had no internal affects. With weight loss, tightening up of my skin has been the biggest pain! I hate my boobs! hahahah
    What internal symptoms of EDS to you guys experience? DO you have hypermobility in ALL of your joints? Do you cut and bruise easily? It's amazing how many different symptoms there are.....
    Again, glad you found the thread! :-D
  • gazz777
    gazz777 Posts: 722
    Hi, was looking through posts on hypermobility ... I am not sure but i may have it. Have lost 60+lbs this year but some exercises becoming difficult.

    Looking to friend anyone who may be able to help.
  • kitkatkmt
    kitkatkmt Posts: 178 Member
    It has been a while since people posted here, but wanted to comment - I have EDS as well, hypermobility type. Would love some friends that know what I'm going through....
  • AteATomata
    AteATomata Posts: 6 Member
    Which book were you given? I'd be interested in finding it. Thanks
  • pudadough
    pudadough Posts: 1,271 Member
    Has anyone here been diagnosed with EDS Vascular? I was researching my father's VAD stroke and inadvertently ran across EDS info. I had never heard of it before. I now have strong suspicions that a few members of my family may have this type (my brother had a very "mysterious" heart attack at 39 and we have other symptoms as well.)

    I want to get a diagnosis on paper, but don't know what type of doctor to see or how to get started. Any info would be great. You can send me a private message if you don't feel like posting here.
  • Elle408
    Elle408 Posts: 500 Member
    I'm still under genetic testing as I have some Marfan markers (namely pectus carinatum) which isn't a general marker of EDS, but as my heart isn't over the threshold for aortic dilation (yet) they're leaning towards EDS - probably hypermobility type. My Dad, although he hasn't been tested, likely has it as he's had several knee/shoulder and ankle dislocations, several hernias and when he had his shoulder pinned in place the scar was a 'cigarette paper' (I think that's what it's called?) scar which is a strong indicator of EDS.

    For me, my joints are quite loose and I'm in a lot of pain with my ankles, shoulders and occasionally knees. I was never that big (in hindsight, at 175lbs, I felt huge) but have quite a lot of loose skin leftover now, my veins are really quite prominent (not enough to be vascular though) and I bruise and scar easily. I feel like I have the body of an old woman! I'm not very hypermobile, I can bend my fingers back and twist my arms in odd angles, but nothing too outrageous! lol

    I think one of the hardest things to deal with, is that no one really knows what EDS is, and as I generally look like a fit and healthy person, no one will take me serious when I mention that I'm in agony with my joints, even my GP isn't sympathetic!

    Pudadough: If you suspect, even a tiny bit that you may have vascular EDS in your family, speak to your GP! Generally, it's apparently very easy to spot, here are some of the markers: (Taken from the ehlosdanlosnetwork.org)

    People with the disorder have thin, fragile skin that bruises easily. Veins are visible beneath the skin, particularly on the chest and abdomen, and hands and feet may have an aged appearance. Unlike people with other forms of Ehlers-Danlos Syndrome, people with the Vascular Type have skin that is soft but not overly stretchy. Facial features are often distinctive, including protruding eyes, a thin nose and lips, sunken cheeks, and a small chin.

    Speak to your GP first and foremost, make sure you mention your family history (this is key to diagnoses) and ask them to do genetic testing. Vascular type is too dangerous to not take seriously, or you may have something else that is causing the heart attacks, always best to find out!
  • Shawnalee0703
    Shawnalee0703 Posts: 1,093
    In addition to the FABULOUS response... once you do get testing started you should also have your heart scanned and your aorta examined. My mom and I have - we think- Type 2 or 1... effecting tissues, joints, skin but not vascular and it is recommended by our our big wig geneticist/ehlers guy. No Joke he is THE GUY.... He is a professor at The University of Washington and teaching many genetics classes as well as genome malformation disease courses and such. He is one of the profs that answers the questions people post on the Ehlers Danlos Foundation website here in the US. He is not a Dr we can see often unfortunately but he IS able to direct us to proper physical therapists and pain therapists if and when needed. My mom and I saw a Rheumatologist yesterday who was VERY informed and very understanding. Although he doesn't normally work with EDS patients he was able to get some things prescribed for my mom and was surprised that a few things had not already been addressed by her GP, PT, Ortho..... or any of those. My mom did just finish up chemo treatment last year and ALL of her EDS concerns were put to the side because of her cancer treatment. She is in remission now and BACK TO her focus on her pain and discussing shoulder reconstruction. She of course is ver nervous about that and is not sure how her joint will heal with EDS< :(

    As for me.... I have lots of loose skin as well... I look like I have had twins but have yet to start my family. lol The biggest thing I have found for my joints and pain is to strengthen them as much as possible. Continuous resistance training has been HUGE. The Rheumatologist agreed that eating clean and strengthening my joints are the best thing I can do to slow the degenerative process down. No cure... to solution... and too many that don't understand. But we are lucky to have the network we have found here. Just hope to have a GP that will understand it as well.
  • Elle408
    Elle408 Posts: 500 Member
    As for me.... I have lots of loose skin as well... I look like I have had twins but have yet to start my family. lol The biggest thing I have found for my joints and pain is to strengthen them as much as possible. Continuous resistance training has been HUGE. The Rheumatologist agreed that eating clean and strengthening my joints are the best thing I can do to slow the degenerative process down. No cure... to solution... and too many that don't understand. But we are lucky to have the network we have found here. Just hope to have a GP that will understand it as well.

    That's what I'm hoping to find, a decent network of people to help me manage the syndrome! Although I love the NHS and have found them brilliant generally, they're really not great at referring you to the correct specialists. It's taken me two years to have my GP even consider that there's something else going on! I'm moving soon though and am going to try again with a different GP, I'd love a confirmed diagnosis, instead of just 'yes, CTD - but could be Marfans or EDS..) one could have devastating consequences and the other less so, it'd be nice to not worry if a bout of palpitations is a sign my aorta is tearing!

    I was speaking to a colleague who is a podiatrist and she said that if I go to one of the universities with a podiatry clinic (there's only 8 in the UK) they'd be all over me as they rarely get to see EDS and would tailor make orthotics that would help to reduce injuries and stresses on my joints and it would cost me very little, so I plan to do that soon! Quite excited too as I've had to give up running/biking due to the recurrent injuries (and also exercise allergy, but that's managed now so not really a factor.)
  • Shawnalee0703
    Shawnalee0703 Posts: 1,093
    I went to a new patient appt to check out a new doc..... She is a family practitioner so she would work with me, be my OB, guide me through each pregnancy, deliver my baby AND be the Dr for my kids so I figured I would give her a shot! Well she is a winner! She is a fresh and new Dr... who is familiar with EDS in some basic detail but she has two other patients with it as well and knows the geneticist at the University who she would have referred me too if I didn't already know him. She said I am on track with strength training and eating very well. She said she supports me in my efforts and we will cross the bridge of referrals and addaptations when we get there. She is very open to alternative medicine and will do appropriate referrals when needed to avoid too many pills. Very supportive of preventative treatments and a very optimistic Dr. I was pleased thus far! Luckily I don't have any serious struggles right now, but I feel like i found a Dr who will understand when thing do arise.

    I think this area has a strong network of people who are familiar because of the the geneticist professor at University of WA who specializes in mutant gene genetics and such!

    I hope you get the info you need!
  • insearchofbees
    insearchofbees Posts: 28
    I also have EDS hypermobility type.
  • rachthemidwife
    rachthemidwife Posts: 7 Member
    Hi. I am 51 and have EDS hypermobility type. I'm a UK lass and the top guy is based at UCLH (University College of London Hospital). HIs name is Professor Rodney Graham and I asked my GP for a referral. He also saw my elderly mother (able to put her feet behind her head at 78!!) I need to manage my weight to help avoid mitral valve prolapse (my mum popped her mitral valve and needed open heart surgery) and to protect my ageing joints. Biggest challenge to losing weight? Unable to lift weights. I swim as this is the only type of resistance training that my joints can cope with and I still injure myself pretty regularly. Also, as is so common with EDS, I don't handle blood sugar changes very well. I have moved over to following IPOARM philosophy and it is so much better for me. My blood sugar is more stable and I exercise when I am able. Is anyone else with EDS following IPOARM without doing the whole "lifting heavy" milarkey?
  • abegraft
    abegraft Posts: 1
    I can't believe I found this! I need to get my fitness pal back on my phone and stick with it! I have Hypermobility type and so does my father. He is 54 and I am 24. I am also 5'6 and weigh around 175lb. I have had 9 surgeries to correct my looseness from EDS and then 1 because of a umbilical hernia removal. My first surgery was 10 years ago. I never really had a weight problem in high school between surgeries, but after HS I have gained so much weight. When I graduated I weighed 130lb. I have had 1 surgery a year since then and I cannot lose the weight or when I start to I need to get another surgery and it kills me. I need to lose the weight to make it easier on my joints.

    I have no idea where to start when it comes to diet cause I also get chronic migraines and I need to avoid certain things that people would include in a "diet". I am pretty okay when it comes to exercise but it doesnt seem to be enough.

    any suggestions at all would be so wonderful! I would be more appreciative than I can ever put into words!
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