Who Here Has Eds Type I I I (hypermobile Type)

[cardiactec]

Just wondering to those of you who have EDS III, is exercising difficult for you? I took my bike out for some flat surfaced biking three days ago and I have been having intense pain in my legs ever since.......It wasnt that much of a work out, just a very slow and easy bike ride for about 20 minutes.....also, WHILE i was bike riding, my left knee kept "slipping" - usually i tend to wear a knee brace on that knee because I have always had problems with it - and now, having been diagnosed with EDS III a few months back, I wonder if this pain with exercise and my knee slipping with exercise is more an EDS thing.........usually I dont get a whole lot of pain WITHOUT exercising, just sometimes intermittently in my neck, sometimes it feels like i have a hard time holding my neck up cuz it hurts so bad, but that is only like 4 times a week.............

any of you EDSers have a hard time with exercis? I know the pots patient in general has a rough time with exercising, which i definitely did -- but i probably didnt help out the situation much by only having been tapering off beta for 3 days before biking and such.....

[MightyMouse]

Pretty nearly all patients with EDSIII (now referred to officially as HEDS) have problems with exercise. Low impact is the way to go, but even that has it's risks for an EDS person. Personally, pilates style work does best for me--very little body motion--it's all about form. Yoga does well for some too. For aerobic work, I have a stationary recumbent bike with a heart rate monitor.

I wont lie--any type of exercise produces pain for me. My workout planning is just a matter of limiting how much pain I'm going to be in later--smaller, controlled motions = less pain for me. High impact or larger body motion = more pain and risk of dislocation/sprain/subluxation.

My most frequently injured joints: ankles, knees, spine, wrists, toes, hips.

While it's bad for my POTS/NMH, I will admit to a HOT bath after a workout where I'm concerned that I may have overdone it--but only if Teri's home. Otherwise, I use Biofreeze roll on, which helps a little with the pain. I also have a transdermal gel/lotion compounded at a local pharmacy--it's got ibuprofen in it, and I put it on any/all joints that hurt. If you can tolerate NSAIDs they help--but my gut problems make them a bad choice for me.

Some EDS patients need bracing in order to safely workout. You would need to find an occupational therapist or PT who specializes in fitting for such things if that's something you require. Personally, I don't have any braces, other than for post-injury, such as my aircasts (I have L and R ankle, and R wrist). I also have my hard neck brace, which I sometimes use if I'm having neck spasms.

Nina

[mkoven]

there's a lot of good info on ednf.org about exercise with eds. Exercise is a double-edged sword. I do stationary bike, walk short distances, pilates, and pt.

For me the key is SLOW increases-- like a minute every other day. I brace for exercise. I'm maybe more beat up than you, but I started biking for just 5 minutes at first.

Also edsers often get trigger points in their muscles from trying to stabilize loose joints. They usually make things worse--creating pain on their own and pulling joints further out. I do regular trigger point work on my hips and thighs that really helps with knee, hip, and back pain. My kneecaps used to pop , slide, and grind ALL the time, and now barely at all, if I keep on top of trigger points in my lateral thigh and IT band. I use a foam roller or a set of rubber balls in a sock that I rub the muscle over until it releases.

[Maxine]

You should be careful with the knees. Mine are just starting to slip, and even crossing my legs when I sit does it. Wear your brace to help stabilize the joints/ligaments. I have a lot of trouble with exercise, even low impact. My body is just way to weak lately for many reasons, but if I do get any energy or strength, I use that to try to do a little house work/cook something simple for dinner. I don't want my husband to do everything after working a 10 hour day-----he helps so much as it is. Just sitting up too long will make me really sick, and I have to rest flat on my back a lot. There are so many things I can't do anymore to take care of my home because of both the POTS and EDS/spine issues, but I have any good days/or hours I'll be doing what ever I can handle in the house.

I'm just now learning more about EDS. I'm glad I have good EDS specialist. I will be going into PT soon, I really need it.

I was supposed to arrange PT when I went to Cincinnati for my appointment with the orthopedist, but it took everything I had to make that appointment. I have someone here locally who I know will be happy to work with my EDS doc, so I will just go back to him. I can't go into any PT pools, as the water is always too warm for me. Any heat makes me a complete wreck.

Do you have a good PT that is knowledgable about EDS that can show you what type of exercise is safe? Are you under the care of a good EDS expert/geneticist who is willing to communicate with a PT to give them some kind of direction on what type of PT you need.

It's really best to talk with a physician who is very knowledgable about EDS to find out what is best for your individual needs when trying to exercise.

EDNF is a very good website. I have learned a lot joining the support group.

Take care of yourself.

Maxine :0)

[delphicdragon]

I definitely agree that you need to be careful with your knees. Best type of exercise I've found is swimming, especially if the pool is warmish, my joints wind up being less painful. If you have a joint that "pops" I'd wear a brace when exercising. When I used to ski (which I shouldn't have ever done, period...) I have my left knee in a simple brace and the right in two braces as the ACL in that leg is so overstretched that my knee can dislocate in any direction. Also, I wouldn't push it - if something hurts stop and wait for it to heal. I pushed my hip too far and now I have to get steroid shots until they stop working and then it's surgery to stabilize the hip. Also, I've been taught how to properly relocate certain joints by my orthopedist. Sometimes relocating a joint incorrectly can cause severe pain/damage. I've pinched a nerve in between two bones and that is not pleasant.

Bracing, as has been said here, is key, as is low impact exercise. The less pressure on the joints the better. Biking on flat terrain, walking, swimming, yoga are all probably good. Exercising had never been pleasant for me, but I'm finding that long walks help more than they hurt (my uncle's swimming pool is getting a new liner - so no swimming until July 15th )

Sara

[mkoven]

There's a transcript of a presentation given by Terri Olson on ednf-- he's a pt who has worked with a lot of hypermobile eds people-- about how to do pt with us and how not to. I showed it to my pt and it helped to guide my treatment. I also saw him once-- he's in South Bend, Indiana.

The focus is on strength, rather than stretching, slow, controlled movements in a small range of motion. Closed chain exercises are more stabilizing than open chain (meaning, for example, minisquats are better than leg lifts, because having your foot on the ground recruits all the stabilizing muscles.

I don't swim, because I'm less stable under water.