Ehlers-Danlos Syndrome

allierose91610

Hi there. I just got diagnosed with Ehlers. I am wondering if anyone out there struggles with this as well. What excercises have you found that you're able to do without causing great pain? What foods should we avoid? Any advice would be great.

Thanks,
Allie

markswife1992

sorry, haven't heard of it but just wanted to say i'm sorry and i wish you well.

VintageFeline

I don't have EDS but am hyper-mobile. I find strength training g to make the biggest impact in managing the imbalances and joint fatigue that can come with it. You'd be best asking for a referral to a physiotherapist to guide you on building slowly and safely depending on the severity of your condition.

I don't know about the diet one, I'm not certain it makes any sort of impact in EDS.

prismor

Hi. I have EDS-HT too. I got diagnosed very late, by which time I had already done a wide range of exercises for decades, many of them harmful to me, prescribed by different docs and PT's.

I would suggest, if possible, start out by consulting a PT who is experienced in EDS. Start slow, take it easy and be mindful of your limits. I did not and do not yet have access to good PTs and have developed a regime of my own over the years after diagnosis.

There are many good blogs that I have found useful to develop my own regime. It also depends on the particular issues that affect you the most - joints (which joints), muscles, soft tissues, autonomic dysfunction etc. All the factors have to be considered to figure out what works for you.

Best wishes.

for_my_tomorrow

Hello! I have EDS Hypermobility. I am sorry to hear you have it too, because I know how complicated it makes life in all aspects. I spent a lot of years pushing my body with constant injuries and didn't understand at the time, I am 32 and now have to have double knee surgery as both of my ACL's rupture from a fall due to weak joints. The one crucial piece of advice I will say to anyone who has any type of EDS is listen to your body and protect it.

I have found that pilates is great, doing modified excercises to strengthen your core. A lot of static excercises that focus soley on strengthening the muscles around the joints to protect them from injury. Definitely no Hiit training or running etc. I have been told my specialist that swimming is good, although I don't enjoy that as an excercise. It took a lot of time for me to get my head around excercising differently as I enjoy high impact training.

As for diet, for me I have found to minimise dairy where I can, seems to help me.

I wish you well

CrazyComicLady

Hi, I was diagnosed with EDS about 3 years ago after years of misdiagnosis and incompetent doctors performing unnecessary surgeries. I was also born with partly fused ankles and I have struggled with my mobility and chronic pain since I was 7, now 28.

I find every type of exercise painful, I do try to get out for a slow short walk everyday, often only making it to the park down the road where I sit on the kiddy swings for a rest ^_^ I also have an exercise bike I try to use, but sometimes that causes my hips to become sore and my ankles to swell if I over do it. Some days I just have to throw in the towel and except that no exercise is happening today, especially if it's really cold and raining, my body is very sensitive to weather changes. Usually my calories burnt ranges from 0 - 350 so not massively high. I'm also guilty of emotional eating as I find living with this condition extremely challenging and frustrating.

I've been reluctant to attempt any kind of weights, as with the state of my wrists and elbows I'm to scared of damaging myself. My doctors at Stanmore London UK hospital did give me exercises to help strengthen my back muscles but all they did was cause editional pain.
Fortunately my family found an amazing private specialist in Toronto Canada who uses laser light therapies which stimulates the body to produce more collagen, it has improved my chronic pain considerably. As a year ago I was house bound and couldn't get out at all. His name is Dr Fred Kahn and the clinic is called meditech. There is one specialist in the U.K. Who uses laser light therapy as well, think his name is Herbert. anyone feel free to message me if you want more details or addresses.

As for diet, lately I've found that higher protein foods help me curve off the hunger a bit, such as Greek yoghurt, beef jerky and tuna. But it's always hard as I struggle to burn off what a eat. I try to stick between 1000 - 1200 cals a day, as anything over 1250 and my weight doesn't shift at all.

Anyone with EDS is welcome to add me as a friend just remind me who you are when you add me, I try to leave comments on people's posts, and am happy to spam you with 'likes' ^_^

danzrlove

Hello I was recently diagnosed as well. The doctor told me to limit gluten and dairy due to the digestive issues. He suggested physical therapy to strengthen the areas that cause issue. I built my own plan by searching stabilizer muscles for each area. I found it helpful then fatigue sidelined me. So far what I've found is that I can do things either by doing a shortened versions or by not going full out like in Zumba. Instead of an hour long workout I do a small amount of reps of strengthening exercises and split my steps throughout the day.

* I welcome friends just mention EDS because you know...brain fog.

ccjlgrider

My 3 year old has a 50/50 chance of having EDS. She is adopted. From what I've read, swimming, elliptical and bicycling are good choices. Running, gymnastics type stuff, and high impact exercise is a no-no. Nothin repetitive either. So, no push ups every day of the week. Vary what you do and what joints you use a lot. That's my understanding. I think the idea of getting a PT involved is a great one.

We won't know about my daughter until she is 5. Until then we let her be the VERY active, climbing, jumping, running toddler that she is. But we will start her in swimming lessons soon and try to steer her that direction. My older two are competitive swimmers anyway, so she wants to do what they do.