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Re: knees and EDS

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That's a good idea to start with isometric. I think that I have been doing

one type of leg lift (bent one) that I shouldn't have been doing. They gave me

plenty of exercises all of which I think would amplify the pain right now.

Thanks, Cindy.

In a message dated 1/16/04 9:23:58 PM Eastern Standard Time,

c-clark05@... writes:

>

> For some of us this knee pain is just so frustrating. How can the pain be so

> debilitating, and test show nothing wrong? 10 lb weights, Are they

> kidding?Obviously they don't get it.

> Have you tried isometric exercise? Lay down or sit up and tighten the muscle

> with no weight. Like flex/release. This keeps muscle tone and blood flow.

> It's a comfortable place to start. Cindy C.

>

> From: Mdmssmile@...: ceda

> Subject: knees and EDS

>

>

> I was told today that the bad knee pain,,, that is getting worse and

> definately has effected my mobility... is " just from the EDS stuff " . Well,

> that is

> fine but where does that leave me? I can't do the exercises without causing

> more

> pain. So I'm supposed to work up to using a 10lb weight acc. to the nurse!

> I

> told her then I' see her back in several years!!

> :(

>

>

>

>

>

>

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I don't think you should be lifting weights.

My PT is pretty knowledgeable on hypermobility. He has me working on core

strengthening.

I do isometrics. I recently started using a rubber tube for arms and legs.

Just very small, controlled movements. I mean very small movements. Sometimes

I can only move an inch before it starts hurting. And he is constantly asking

me if I'm ok. If I get any pain at all, I'm to stop.

He told me not to lift weights. Too much for the unstable joints.

The objective is to strengthen the muscles, without stressing the joints.

Supposedly, when I get stronger, my muscles will help support my joints. That's

the theory, anyway.

I also do pool therapy. Resistance of the water is 12 times the resistance of

air. And, no stress on the joints.

I just had a conversation with my PT today about why the dr couldn't tell

how to stop her muscle spasms instead of giving her a shot every time. He

explained that doctors think one way, and PT's think another. It seems that if

a doctor can't give you a drug, or do surgery to fix something, they are lost.

That's my theory, at least.

So, your nurse probably doesn't know what she's talking about. I really don't

think you should lift weights. I bet when you do, you can feel the pulling in

the joint. I could. It's not gonna help, and it's just gonna make your knee

pain worse. That's what happened to me, and that's why I'm in such a mess now.

Are you doing PT? If not, I would encourage you to ask your dr for it. And,

find a PT who knows about hypermobility. That's VERY important.

My first PT spent 2 weeks doing ultrasound, and heat, then the next week had me

out in the gym doing the weight machines, treadmill and bicycle. I couldn't do

it. It hurt. It made my pain worse. They made me feel like I was a fool.

Saying there is nothing wrong, so you need to do this - it'll only take a few

weeks to get your strength back. I kept telling them it hurt, but they didn't

listen.

So, I left and never went back.

Now I have a great PT, and everyone there knows about hypermobility now. In

fact, they said that this is the first time they've had 2 hypermobile people at

once - me and . They usually get about 1 a year.

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I just had a conversation with my PT today about why the dr couldn't

tell how to stop her muscle spasms instead of giving her a

shot every time. He explained that doctors think one way, and PT's

think another.

----------------------

It doesn't bother me that doctors " think one way. " I fully

understand and accept that.

What bothers me is that they tend to think that their way is the

only way.

But what REALLY bothers me is that, because of the way the laws are

written governing " standard of care " and " scope of practice, " if

your primary care doctor said " NEEDS to get this shot " to

stop the spasms, and I told you otherwise contrary to his

instructions - all he would need to do is write one letter to the

state licensing board and I would lose my license. It would make no

difference at all that I might be right and he might be wrong. That

is just the way things are.

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Well, that's a shame, but I know what you are saying.

The needle injections that dr wanted to do on are a good example. But,

I'm not gonna let that guy get his hands (or needles) on my daughter! No way!

I'm not gonna tell him - " I know this guy who does energy work. He's a licensed

massage therapist. He can help her better than you can, a lot quicker, and he

won't hurt her! " . He'd probably hit the roof! I wouldn't want to know what

he'd do next. But, I don't think you could get in trouble for touching someone.

lol

It's a shame that more people don't know about what you do. It's a shame more

people don't do what you do.

Who in their right mind would go through with those injections after seeing what

you can do with your hands?

I have a theory that the drug companies are controlling the world. This is

another example.

Nobody knows much about the energy work, because if they did, the drug companies

would loose a lot of business! They are in on it with the doctors. lol -

no, I'm not schizophrenic. I just sound that way sometimes!

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