I am terribly frustrated at being unable to effectively work out, and am hoping to get some solid advice as most physiotherapists and trainers don't seem to be well equipped to cope with my limitations.

I used to be very active - dance, hiking, some weight training, swimming, biking, stair climber, elliptical, yoga. Joint pain and tendon ripping issues due to fragile collagen have forced this down to practically nothing but light cardio and yoga - even worse, I no longer have access to a pool and won't for some months.

Right now the worst issue is IT band pain in the left glute and outer knee area. It regularly keeps me awake at night.

Currently my exercise regimen is 20min of moderate recumbent bike every other day or two in the AM followed by icing the knee (and ankle, which I broke a few years ago on the elliptical and has been extra achey ever since - and yes, I know it shouldn't be possible; the ED in conjunction with anemia and vitamin D deficiency via GI problems turned my bones to peanut brittle). I follow that up with 50min of gentle yoga every other day or two in the PM, often followed with heat applied to the glute. Foam roller doesn't seem to help much with the IT band pain, tho deep tissue massage gives some relief in the glute.

I wish I could do weight training, but whenever I do anything I get bruises where the tendons attach - like near the collarbones when I do flys, or over the elbows when doing curls or extensions, even with light weight and low reps. I have to be careful not to pull too hard when I swim or use a kickboard or I basically get tennis elbow.

My goal is currently to lose a boatload of weight I've gained over the last 18mo of being effectively immobilized (when the IT band issues got really bad, I was basically bedridden with pain on opiates for six months).

My diet is a pretty healthy Mediterranean type. Usually a yoghurt + strawberry + stevia smoothie or feta + spinach salad for breakfast, greek salad or chicken + veggie stir fry for lunch, carrots or a small handful of raw cashews or cheese + crackers for snacks, and something light for dinner to help keep the GERD in check like a poached egg with sprouts and mushrooms wrapped in a small whole wheat tortilla.

While this doesn't exhaustively cover everything I've tried, I'd very much appreciate any advice or approaches you might be able to suggest!

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    I'm going to suggest that you see a professional physician or physical therapist. Even with the information you provide, even the best intended tips can overlook something, and end up doing more harm than good. I know this is a cheap comment, but any online forum is not a substitute for professional assistance.
    – Alec
    Jan 7, 2015 at 7:59
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    Thanks Aleksander, but as I mentioned right off the bat in the first paragraph I haven't had much luck with such - hence my posting here, to get broader exposure.
    – Logos
    Jan 7, 2015 at 14:38
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    @Logos - I can understand that frustration, but you need a trained professional that can see you, not a bunch of monkeys on the internet throwing spaghetti at the wall. As Aleksander notes, there is a real possibility that someone would give well meaning advice that would leave you worse off than you are now.
    – JohnP
    Jan 8, 2015 at 14:50
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    Thanks again JohnP, but I am neither ignorant nor stupid and wouldn't be trying any suggestions without researching them myself and discussing them first with my doctor. The whole point here is just to crowdsource suggestions, not fling myself gaily into whatever happened to catch my eye. So I appreciate the concern, but not the paternalistic attitude.
    – Logos
    Jan 8, 2015 at 19:09
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    EDS sounds awful; you have my Internet-sympathy. The weight-training exercises that you've mentioned sound like isolated movements. Consider trying compound movements such as the squat, press, and deadlift. Others with EDS have done so with some success. Nov 10, 2016 at 17:15

2 Answers 2


@Logos - as far as any exercise recommendations from the internet without an assessment giving recommendations is quite simply reckless.

There cardiovascular effects that need to be fully understood.

  1. I would NOT take advice from a person trainer (no offense if any is a trainer). This is a condition very, very few will know enough about to give you safe recommendations.
  2. Most Physical Therapists have likely not treated this before. Therefore I wouldn't randomly pick a therapist as you'll likely know more about the condition than them.
  3. An Orthopedic Specialist is likely your best bet. However it's highly likely they also have not treated the condition before.

My Best Advice:
I would suggest getting a recommendation from someone with ED who has had success with a provider. You can find places to do so using the links below. An experienced physical therapist or orthopedic specialist that is familiar your condition would be your best option.

I wish you the best of luck I'm sorry if my recommendations are not what you want to hear but I can understand how frustrating it must be not being able to find a helpful healthcare specialist.

Helpful Links https://www.ehlers-danlos.com/patient-support/

Related Forums https://www.ehlers-danlos.com/message-boards/

  • Thanks Mike! I've accessed those resources before, they're easy to find with Google, I was just hoping to find something from SE as in my experience on other SEs the quality of advice is usually fairly high and the signal to noise ratio is better.
    – Logos
    Nov 19, 2017 at 3:17

There are some advices you can get from thins community, but that is far not enough. Work with physical therapist(s), doctors, but that also can be not enough. I mean - that is not temporal state, you are in. It is not a broken leg - where you go to hospital, they do what ever is needed, and after some time you are back on track. You need to understand what works for you, learn as much as possible about the problem. So all the professionals you are talking with are great source of knowledge, but there are more of that sources. Validate them against each other, as well as with your experience.

From my point of view. If you wish to loose weight - diet is most important. Exercises can help, but they are not mandatory.

There are other things you can do to take care about your joints. Stationary biking - go slow with higher resistance. Usually, better controlled motion, gives less pain. For walking, and a specially running, please be sure that you are putting whole foot. Usually people starts with heel. That is highly supported by shoes, but knees, and hips takes more load with each step. When you put whole foot, then your muscles like quadriceps takes part of that load.

You mentioned swimming. It is well known for being good for joints.

Not sure if all that is still true with EDS... Anyway - that is what I mean by learning. Read, exchange information, but start with professionals. That will make your path less risky. Fingers crossed! :)

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    @MichaelZaborowski Fully agree with this advice - this is an extremely rare condition so the large majority of medical professionals will have never seen it. As stated above I'd highly recommend getting advice or a referral from someone else with the condition as I believe that would be your best source.
    – Mike-DHSc
    Jan 18, 2018 at 1:56
  • @Mike-DHSc I see tendency that if someone mentions pain, then post is closed, and the person is sent back to professional support. I think that doctor is great option, since test is done in real. But as you stated, rare cases are problem for everyone. Also we are here to provide information. Great reference tips - do you think it would be beneficial to have the same from other countries? Jan 18, 2018 at 10:05

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