At a loss
gypsyrose85
Posts: 206 Member
So I was diagnosed with a connective tissue disorder. I was told NOTHING that its stress on my joints. No lifting, no running, no yoga (because it promotes the joints to be even more loose) dr said I can swim however I live in a area where it is to cold to swim over half the year and there are no public indoor pools. I love swimming and is one of the few things that does not cause pain. But there is no where to do it besides the warm months and even then the water is very cold. -_-
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Is that a permanent order to stop all activity that stresses joints? Are there any support groups that you can contact or look into online that might have suggestions about the types of activity that you can pursue?0
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Omg where are you from? There are no YMCA's that you can go to? Do you have a friend with a pool and you can pay monthly to use their pool like a gym.0
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Is that a permanent order to stop all activity that stresses joints? Are there any support groups that you can contact or look into online that might have suggestions about the types of activity that you can pursue?
Yes it is a life long condition. I have a lot of pain in my joints and now found out is because my connective tissue is not right. I am part of a group and they say the same thing
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raquele3394 wrote: »Omg where are you from? There are no YMCA's that you can go to? Do you have a friend with a pool and you can pay monthly to use their pool like a gym.
No YMCA. I live in New Hampshire. The closest YMCA is over 50 miles away. Unfortunately no friends with pools they all swim in the river.
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Can you ride a bike? That shouldn't put too much stress on the joints.1
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bellydance - no impact, fun, and still exercise0
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You don't have a local highschool? Usually they have one and have open to the public hrs. Mine is like a buck or two to use0
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Pilates... There is core work you can do that doesn't stress your joints! Best of luck to you, I hope you find something you can do soon!0
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Walking? Leslie Sansone videos if walking is ok, or get outside!0
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mca90guitar wrote: »You don't have a local highschool? Usually they have one and have open to the public hrs. Mine is like a buck or two to use
Yes we have a high school but around here high schools don't have pools
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Yeah, ours doesn't have a pool. Actually, none of the high schools I've ever been to had pools. There is a community college with a pool that has public hours for reasonable rates, but it is about 30 miles from me. Can you do elliptical?0
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I am in NH also. I swim at a gym, but that can be expensive. There is a financial aid program there though.
Sorry about your diagnosis/restrictions/pain. That is a bummer.0 -
I live in Haverhill MA very close to NH border line!gypsyrose85 wrote: »raquele3394 wrote: »Omg where are you from? There are no YMCA's that you can go to? Do you have a friend with a pool and you can pay monthly to use their pool like a gym.
No YMCA. I live in New Hampshire. The closest YMCA is over 50 miles away. Unfortunately no friends with pools they all swim in the river.
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Cycling tends to strengthen the knees.0
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Pilates and how about indoor stationary bike like Peleton or even recumbent bike0
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cheriej2042 wrote: »Pilates and how about indoor stationary bike like Peleton or even recumbent bike
Bikes hurt my knees and we are not diodes to do anything that increases flexibility
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NorthCascades wrote: »Cycling tends to strengthen the knees.
I have tried biking and ended with extreme pain in my knees. Due to EDS-ht my knees and ankles give out often.
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jenmarrs429 wrote: »I am in NH also. I swim at a gym, but that can be expensive. There is a financial aid program there though.
Sorry about your diagnosis/restrictions/pain. That is a bummer.
No gyms with pools around
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DancingMoosie wrote: »Yeah, ours doesn't have a pool. Actually, none of the high schools I've ever been to had pools. There is a community college with a pool that has public hours for reasonable rates, but it is about 30 miles from me. Can you do elliptical?
I tried and it affected my knees. I had it dislocate Twice.
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DancingMoosie wrote: »Walking? Leslie Sansone videos if walking is ok, or get outside!
I walk as much as I can but if my knees start flaring up I stop.
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tcunbeliever wrote: »bellydance - no impact, fun, and still exercise
However many of the movements encourage flexibility and that is a no no for EDS-ht
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Check hotels in your area as well. A lot have pools that open to publicly for small fees3
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Perhaps consult with a physical therapist?0
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Sorry but what connective tissue disorder do you have? I have EDS type III (hypermobility) and doing no exercise actually made me more at risk of dislocations and other injuries as well as increasing pain levels. By strength training I've strengthened the muscles around the joints making them far more stable and less painful.
Yes we have to be careful when stretching and work with a physical therapist (I also have a personal trainer that understands the condition), but the idea of no exercise that stresses the joints is just crazy.
Let's get this in perspective before I started exercising and strengthening my body I would sublex at least once a month (generally my ankle), couldn't get in and out of the bath on my own or even up off the floor. By making small improvements that add up to big improvements, I can now run a half marathon (not fast or pretty but I can do it), squat with my bodyweight on my back, deadlift 97.5kg, take part in high impact classes such as Insanity and do countless every day activities that I couldn't before. My ankle has only sublexed once in a year and I was only off my feet for a couple of days instead of the weeks I used to be. Yes I am still in pain, it's part of life for us bendies, but I've reduced my painkillers be about three quarters and it doesn't stop me doing anything.
The point is that as out joints are unable to stabilise themselves we need to strengthen the muscles around them to do the work. But we also need to keep those muscles fairly flexible, they tend to be tight because they have been trying to stabilise the joints so we need to use careful stretching.
Oh and unfortunately the pain may get worse before it gets better, I had a few months of very severe shoulder pain when I started, because I was forcing those muscles and joints to do things they weren't used to (something many don't realise is that due to injury and fear of pain we often have a smaller range of motion despite the hypermobility). But now the only pain in my shoulders is DOMS after a good workout.5 -
^^^this is exactly what I was thinking, but didn't say because I am not really familiar with that disorder.1
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Honestly, while I am sympathetic to your medical issues, I have to say that if you want to find a reason not to exercise, you will. And if you really want to find something that works for you, you will as well.
There have been a lot of great suggestions here (like the Leslie Sansone walking videos, low-impact stuff like Pilates, recumbent bikes, ellipticals, bodyweight programs, etc) that I am almost positive you could find a way to adapt to your needs with the help of your doctors and/or physical therapist or similar. But you have to want to, know what I mean?0 -
gypsyrose85 wrote: »tcunbeliever wrote: »bellydance - no impact, fun, and still exercise
However many of the movements encourage flexibility and that is a no no for EDS-ht
I really think you need to see an expert in hypermobility, a physical therapist at the very least. It seems as if you've been given some very poor advice and are using your condition as an excuse for doing nothing. I was doing hill sprints today, does that sound like doing nothing to stress the joints? Of course it doesn't, but it was protecting them far more than sitting on my bum doing nothing. Embrace your flexibility, I can squat lower than 99.999% of people I know thanks to my hypermobility. But I had to work on rebuilding that range of motion.1 -
gypsyrose85 wrote: »tcunbeliever wrote: »bellydance - no impact, fun, and still exercise
However many of the movements encourage flexibility and that is a no no for EDS-ht
I really think you need to see an expert in hypermobility, a physical therapist at the very least. It seems as if you've been given some very poor advice and are using your condition as an excuse for doing nothing. I was doing hill sprints today, does that sound like doing nothing to stress the joints? Of course it doesn't, but it was protecting them far more than sitting on my bum doing nothing. Embrace your flexibility, I can squat lower than 99.999% of people I know thanks to my hypermobility. But I had to work on rebuilding that range of motion.
The real question is, what do you want to do.
Some doctors, even specialists aren't prepared to deal with someone who is otherwise young and healthy and willing to get more healthy and strong.
Since this is a new diagnosis, I understand your willingness to listen to your doctor, but a PT or a support group is probably a good idea.0
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