Exercising with Ehlers-Danlos Syndrome

bumblebreezy91

I have Ehlers-Danlos Syndrome (type three, hypermobility type) accompanied by severe joint & body pain and daily joint subluxations/dislocations. I bruise easily and I don't have the ability to recognize when I'm hyperextending a joint because EDS is genetic so my range of motion is not abnormal to me (which is dangerous because constantly hyperextending my joints ruins them and can put me at a greater risk of subluxations/dislocations). I really push myself to exercise like everyone else because I'm worried about loose skin, becoming "skinny fat," and my ability to reach my goal in a timely manner without the strenuous exercise many other people seem to be doing.

I'm in physical therapy, but I haven't been given much advice about exercise beyond little stretches I can do at home. I try applying the same advice to strengthening machines at the gym, but I'm worried that I may be doing further damage without realizing it. I have a PT appointment this morning where I can bring these concerns up, but I'm wondering if anyone else on the forums has EDS and knows some safer ways to exercise that will help me reap the benefits of exercises that others can do?

Thank you.

ETA: My doctor doesn't seem confident in my ability to workout enough, so he gave me the green light to eat 1200 calories per day to make up for it. The extra weight on my fragile joints is dangerous and he wants it off this year. But I still have the concerns listed in the first paragraph of this post.

amwoidyla

I don't have it but my best friend does. Her EDS is more skin than joints.

She's tried lots of different stuff with working out, but she can't do anything that involves being on her knees, elbows, lower back, because the pressure causes her to bruise. She mostly sticks to low impact stuff like swimming and biking, with some light weight training.

If she were on here I'd recommend you be friends!

WVprankster

Aquatic therapy,perhaps? I don't know how much of a caloric burn may result from it though.

Shellz31

I have EDS also. My mostly affects my hands, feet, elbows and knees. I'm guessing you have more hip/shoulder issues since you talk about dislocations. My knees hurt me the most when exercising. I always bend them too far backwards when I just stand and walk. Also my ankles cause me a lot of trouble if I try doing aerobic activities other than walking that involve a lot of side stepping or anything.

I also suggest low impact. I love swimming, though it's hard to find a pool always. My main activity is simply walking. I just try to keep my knees bent and don't try to power walk or anything. For strength training I do really simple exercises with wrist and ankle weights. I have to do more reps but this way I'm not stressing the joints too much. I can't do dumbbells because they hurt my wrists and I have a hard time gripping them with my hands which are the most flexible part of my body.

Hope that helps. :flowerforyou:

bumblebreezy91

Thank you all for replying!

I am affected in most of the same places as you are, ruiner38. I actually have the least problems with my shoulders. My wrists are my biggest problems, but also my right ankle completely dislocates at the slightest provocation (like going down the stairs) and I can turn my left foot completely the other direction with my toes facing behind me (I can do that with my right ankle too, but it dislocates the ankle so I refuse to do it for doctors anymore). My fingers are so bad, I can't write with pen and paper very often, so typing is great. And I can't use purses because it subluxes my elbow, so I use a backpack. My elbows curve out at 20-degree angles. And my skin is more velvety than stretchy, but I have patches of stretchy skin too.

I have been doing swimming when the pool was open (it will open again on the 16th--it's the campus pool so it follows all of the school's breaks). I always kick my right ankle out, but I'm not at risk for a fall so it's more of an annoyance than it is an actual danger. I try to find strengthening exercises for when the pool is closed, but it's been difficult.

My PT suggested I do as much swimming as I can, too. The campus pool has severely limited hours, which has been a problem for my work schedule but I do my best to make it work.

Shellz31

You must have it worse than me. While my ankles ache and pop often, I haven't had a dislocation (knock on wood). My mother has broken bones in her ankles 4 times! One of the main reasons I want to lose weight and gain strength is to hopefully prevent the same fate. My wrists pop constantly and I can't lift anything slightly heavy, but so far that's it, though it sounds horrible and scares people when they hear it ("oh god, did you just break your wrist"). And I definitely feel you when you talk about your hands. I hate that I can't open a can or bottle of pop and have to ask for help from coworkers all the time. I live alone and just dont buy bottles that I know I can't open. I used to smoke and had to get a certain kind of lighter to be able to light my cigarettes. It's so embarrassing when you borrow someone's lighter, can't light it, and have to try to explain that you need them to light your cig for you :blushing:

My brother's ankles are worse than mine, and I know he got some strength training exercises from his PT that he said helped a lot.

Anyway, it's good to share experiences since there aren't many of us out there! Hope things get easier for you as the weight comes off :happy:

bumblebreezy91

You must have it worse than me. While my ankles ache and pop often, I haven't had a dislocation (knock on wood). My mother has broken bones in her ankles 4 times! One of the main reasons I want to lose weight and gain strength is to hopefully prevent the same fate. My wrists pop constantly and I can't lift anything slightly heavy, but so far that's it, though it sounds horrible and scares people when they hear it ("oh god, did you just break your wrist"). And I definitely feel you when you talk about your hands. I hate that I can't open a can or bottle of pop and have to ask for help from coworkers all the time. I live alone and just dont buy bottles that I know I can't open. I used to smoke and had to get a certain kind of lighter to be able to light my cigarettes. It's so embarrassing when you borrow someone's lighter, can't light it, and have to try to explain that you need them to light your cig for you :blushing:

My brother's ankles are worse than mine, and I know he got some strength training exercises from his PT that he said helped a lot.

Anyway, it's good to share experiences since there aren't many of us out there! Hope things get easier for you as the weight comes off :happy:

When I finally got diagnosed last year, it was a relief. I finally knew why I had so many complaints. I was in the ER and urgent care and in doctor's offices all the time, starting in early middle school when I had to quit volleyball due to wrist/hand/arm pain.

I never smoked, but my fiance used to buy lighters for our candles that I just couldn't use without burning myself or I couldn't use them at all. I'm talking about those BIC lighters where you have to use your thumb on the dial and then push the button right away. I couldn't do it.

I'm really glad to hear from someone who has it, and from people who know someone with EDS. It's hard to feel alone.

emilyisbonkers

I know someone with this who does wheelchair basketball? could be an idea

peabean26

I have Marfan's syndrome, with a number of the accompanying joint issues. I have protrusio acetabulae, so my hip has chronic arthritis.

I find the best exercise for me is swimming and biking. With biking the extent of my hip flexion is pretty much the same every time I pedal, which helps my hip not 'crunch up' as I call it.

bumblebreezy91

I know someone with this who does wheelchair basketball? could be an idea

I like the creativity of this idea, though my wrists and elbows can't withstand the throwing motion and I can't push my own wheelchair. I'm going to look into it and see if it could be modified for wrist/elbow problems. Since I can't afford a wheelchair but I need one, I am discussing borrowing one from the loan closet in my area until I can save up, so maybe I can find wheelchair-based activities in my area too.

bumblebreezy91

I have Marfan's syndrome, with a number of the accompanying joint issues. I have protrusio acetabulae, so my hip has chronic arthritis.

I find the best exercise for me is swimming and biking. With biking the extent of my hip flexion is pretty much the same every time I pedal, which helps my hip not 'crunch up' as I call it.

I do better with the bikes that have seats like those in a car, or like a regular chair. I can't sit for extended periods of time on regular bikes (or in chairs for that matter) because I get dull aching pain that goes down my legs. I haven't gotten the motivation to get comfortable in the other bikes because I used to ride a "regular" bike as a teenager. Thank you for the inspiration to try this. I will go to the gym and try doing fifteen minutes tonight.

cafeaulait7

You might ask your PT or ortho doc about bracing you can wear while exercising. If you could get something that stops the hyperextension but still allows movement, that would be great.

I have EDS, too, but not that badly! My doc told my parents I wasn't allowed to do anything but swim, but they promptly ignored that advice. It worked out for the most part. I just wish I could find something that could let my kneecaps track normally while still being able to bend my knees. Nothing out there has worked so far. They are escape artists

Kaylee_F93

http://www.myfitnesspal.com/groups/home/20881-rare-diseases-hemophilia-etc

I have Ehlers-Danlos too! Join my Rare diseases group on here!

bicky_roo

Hi
I have EDS hypermobility and some overlaps i suspect
most of my joints sublax (thank God so far no real dislocations) I sublax from jaw down to toes yup the whole lot the only exercise I can tolerate is swimming and I started by going for two lengths and slowly building up sometimes I can only increase by two lengths every 6 weeks but slowly and consistently going for two months (with a little gap from sublaxing shoulder and shoulder blade) I managed to stabalize my joints much more
Just have to be bluntly listening to your body and not worry about what others think of you only getting in and doing two lengths (or maybe thats just my paranoia) so just an idea Movement whatever you manage consistently is good
Hope you find something that works for you
God bless
xoxox

allierose91610

It's nice to feel like I am not alone out there with Ehlers-Danlos. I am at the gym often and I constantly have no idea what to do. I tried a spin class and a tight and tone class and it rendered me almost unable to move for the following three days. I have severe muscle issues in addition to joint issues. The laps at the pool are always taken. Its difficult to lose weight and increase strength. Being healthy is hard with this disease.

Cheesy567

Swimming/ water activities are best for joint protection.

Pilates, yoga focusing on balance, coordination, strengthening rather than flexibility.

Your PT doesn't "get" EDS if they're teaching you stretching exercises, and they may be causing more problems for you. Find a new PT-- ask around with other with EDS in your area, or ask the MDA (Muscular Dystrophy Association) for the names of good neuromuscular PTs in your area. Don't be surprised if they're pediatric specialists-- call them, explain your situation, and ask if they'll see you or can refer you to a good PT for you. (I realize EDS isn't a muscle disease and isn't under the MDA service mission, but *most* PTs skilled in treating muscle diseases will have a better understanding of EDS and the modifications you need).

gemjolsnes

Surprised and pleased to see this when I did a Google search for Ehlers-Danlos workout program. This app is the only thing I've done to successfully loose weight, which is obviously extra detrimental to my/our health. I have a "suggested diagnoses" of hypermobility type - like a lot of you I'm in the less severe camp (constant sprains, but few dislocations). My PT basically did the "well technically I can't diagnose you, but you need to look this up" thing. There are no qualified specialists within 300 miles of my town. . .

I'll admit, I'm pretty freaked. This is something I've only been aware of for 6 months or so, and only started really looking into it seriously in the last 4-6 weeks. Thankfully, I work at a university so I have access to academic journal databases and a really fabulous Inter Library Loan office

I had intended to be a professional dancer, but was diagnosed with fibro at 20, so I became an English teacher instead. Realizing now that my ankles ect just giving up the ghost - ballet was a really bad idea - was probably inevitable. I keep pointing out to dancers that impressive flexability isn't all its cracked up to be Anyway, I'm rambling. Seeing others with this issue successfully loosing weight and exercising is really helpful.

I'm going through the disability mourning process all over again and trying to figure out what I can safely do. I suspect getting back into dance (even carefully) is off the table. How do you guys deal with muscle spasms and tightness if you can't stretch? My hips keep freaking out badly but it seems that when I stretch enough to feel any release I've already stretched too far and am making things worse. I haven't been able to find any advice except don't stretch and see a trigger point specialist (which I was already doing).

I'll definitely follow this thread and join the group mentioned above - this is the first message board I've seen with people giving support and advice rather than talking about identity / embracing their differences.