Anyone on here have EDS??

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becoming_the_best_me
becoming_the_best_me Posts: 66 Member
in Health and Weight Loss
Looking for tips on how to workout without injuring myself with EDS and POTS

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  • staticsplit
    staticsplit Posts: 538 Member
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    I have a very minor form--mostly means I sprain my ankles a lot and have subluxed them a time or two. I also get dizzy if I stand up too quickly. Mostly I just take things easy and check in with my body. I do yoga, and the balancing poses have helped a lot with stability. I sprain my ankles less often now and if I do, they are less intense. I have to make sure I have a lot of water when exercising as I'm prone to fainting if I get dehydrated. Hopefully other people have some more tips! Might be worth seeing if a local gym has a PT who is experienced in clients with EDS/POTS to give additional insight specific to your symptoms?
  • crooked_left_hook
    crooked_left_hook Posts: 364 Member
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    I have hEDS and I’ve suffered through many injuries over the years because of not working out at all and/or not working out correctly when I was exercising. I’m actually scheduled to have surgery on my left hip on Thursday (right hip was last April). The key to working out with EDS is to focus on strengthening the muscle groups that stabilize your joints first, then moving up to harder things. Your best bet it to find an EDS award physical therapist and have them assess your shoulders, hips, knees and core and start you on a strengthening routine. You don’t have to go every week, but once a month is usually a good process for checking progress and getting new exercises. Once you have a solid foundation you can move up to more complicated exercises. I usually do a combo of PT exercises and medium intensity weight lifting on alternate days. Hopefully after this surgery I will be able to lift heavier. Cardio is alway good but you will want to stick to low impact options like elliptical/bike/spinning. Pilates is always a solid option for EDS but I highly advise avoiding yoga. People with EDS should NOT stretch, a lesson I learned too late. When someone with EDS stretches they are actually stretching the ligaments and causing more damage. We WANT our muscles to be tight because they are doing all the work of holding our joints together. This does mean they will ache more than normal. Some light foam rolling and regular massage is okay as long as you don’t bruise super easily. Also, make sure you take 1-2 rest days after 1-2 days of exercise. It takes longer for us to recover. Exercising with EDS is never easy but it’s absolutely necessary. Here is a great article about exercising with EDS that really helped me get on the right track.
    https://medium.com/@chelseyengel/breaking-down-the-barriers-to-exercising-with-eds-and-hypermobility-692081adc462
  • becoming_the_best_me
    becoming_the_best_me Posts: 66 Member
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    staticsplit wrote: »
    I have a very minor form--mostly means I sprain my ankles a lot and have subluxed them a time or two. I also get dizzy if I stand up too quickly. Mostly I just take things easy and check in with my body. I do yoga, and the balancing poses have helped a lot with stability. I sprain my ankles less often now and if I do, they are less intense. I have to make sure I have a lot of water when exercising as I'm prone to fainting if I get dehydrated. Hopefully other people have some more tips! Might be worth seeing if a local gym has a PT who is experienced in clients with EDS/POTS to give additional insight specific to your symptoms?

    I've tried to find one but I haven't found any that know anything about EDS unfortunately
  • becoming_the_best_me
    becoming_the_best_me Posts: 66 Member
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    aes1219 wrote: »
    I do not have EDS, but I do have POTS. Luckily I have found a medication that controls 90% of my symptoms. If you are having a lot of symptoms I would see if there are any other treatment options - I went through several and this treatment was a last ditch effort but works really well for me.

    What treatment if you don't mind me asking? I'm getting IVs/infusions as well as acupuncture and herbs all from my dr but not taking any medication for it.
  • becoming_the_best_me
    becoming_the_best_me Posts: 66 Member
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    crooked_left_hook wrote: »
    I have hEDS and I’ve suffered through many injuries over the years because of not working out at all and/or not working out correctly when I was exercising. I’m actually scheduled to have surgery on my left hip on Thursday (right hip was last April). The key to working out with EDS is to focus on strengthening the muscle groups that stabilize your joints first, then moving up to harder things. Your best bet it to find an EDS award physical therapist and have them assess your shoulders, hips, knees and core and start you on a strengthening routine. You don’t have to go every week, but once a month is usually a good process for checking progress and getting new exercises. Once you have a solid foundation you can move up to more complicated exercises. I usually do a combo of PT exercises and medium intensity weight lifting on alternate days. Hopefully after this surgery I will be able to lift heavier. Cardio is alway good but you will want to stick to low impact options like elliptical/bike/spinning. Pilates is always a solid option for EDS but I highly advise avoiding yoga. People with EDS should NOT stretch, a lesson I learned too late. When someone with EDS stretches they are actually stretching the ligaments and causing more damage. We WANT our muscles to be tight because they are doing all the work of holding our joints together. This does mean they will ache more than normal. Some light foam rolling and regular massage is okay as long as you don’t bruise super easily. Also, make sure you take 1-2 rest days after 1-2 days of exercise. It takes longer for us to recover. Exercising with EDS is never easy but it’s absolutely necessary. Here is a great article about exercising with EDS that really helped me get on the right track.
    https://medium.com/@chelseyengel/breaking-down-the-barriers-to-exercising-with-eds-and-hypermobility-692081adc462

    I tried to get a PT but the only physical therapy place my insurance covers doesn't know anything about EDS and won't treat me. I can't afford to pay for one out of pocket
  • shaumom
    shaumom Posts: 1,003 Member
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    My daughter has POTS, and is being tested for EDS. Honestly, one thing that has made a difference for her, treatment-wise, was getting tested for a mast cell activation disorder (not mastocytosis, but MCAD/MCAS). It's really common to have all three - maybe 1/2 of our support group have EDS, POTS and MCAD altogether. And the symptoms tend to set off each other, so getting help with one tends to help the other, at least a little.

    My kid, for POTS, drinks a LOT of water if she's feeling especially dizzy. Like, a huge glass or two, fast as she can, when she's feeling worse. It often helps.

    Re: EDS and exercise - have you ever looked on youtube and searched for EDS and exercise? I know we've found some POTS specific exercises there before, so perhaps someone has put up EDS ones the last few years as well?
  • becoming_the_best_me
    becoming_the_best_me Posts: 66 Member
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    aes1219 wrote: »
    becoming_the_best_me wrote: »
    aes1219 wrote: »
    I do not have EDS, but I do have POTS. Luckily I have found a medication that controls 90% of my symptoms. If you are having a lot of symptoms I would see if there are any other treatment options - I went through several and this treatment was a last ditch effort but works really well for me.

    What treatment if you don't mind me asking? I'm getting IVs/infusions as well as acupuncture and herbs all from my dr but not taking any medication for it.

    I'm on midodrine, it works by increasing my blood pressure (my normal BP is low and the POTS causes the tachycardia which in turn lowers my BP more). I was passing out 4-5 times a day prior to treatment. I get dizzy occasionally now, but never pass out.

    Oh ok, I've never passed out fortunately just get really dizzy and nauseous from being dizzy and when it's bad the world will spin and everything goes white for a sec but I'm always conscious

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