knees and EDS

January 16, 2004

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!!

January 17, 2004

,

You're right about the using weights and making it hurt more. That nurse is

new and I don't know if she knows much about EDS at all. She was attempting

after the doctor left, to further explain the list of exercises and stuff. They

talk about not doing it if it hurts but it hurts before I start so that doesn't

really work!! I am going to start with isometrics. I am supposed to start

with no weight on the leg lifts and the easiest bands.

I am finishing up PT right now for my shoulder. It's not great better and a

little stronger. I'm still on the red band (the easiest) but it has been over a

year now since mmy rotator cuff surgery! My neck problem was preventing it

from getting stronger. Now that my neck is " fixed " , my shoulder should get

better. My neck is causing referred pain in my shoulder pain . I got an

injection

in that and the pt is working a few more sessions at trying to get it to relax.

I don't feel like it is getting much better.

My trouble is I work on one joint and it injures another joint!! It's a

little like the " Joint of the Month (or year) Club!!!!

I'm so glad you and found someone good. This guy knows EDS but .....

Take care,

January 17, 2004

What !? Is that true everywhere? I have been to many PTs through the years I

know that they are always very very careful in what they say and write. I

figured it was to keep on the doctor's good side and to keep the referrals

coming

to put it bluntly. A necessary reality as bad as it may be.

In a message dated 1/17/04 12:02:06 AM Eastern Standard Time, mike@...

writes:

> 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

January 17, 2004

Thanks, Cindy!

You are so sweet. If they keep going in the direct they are headed, I wiil be

using a cane or wheelchair very very soon. An old mri had mentioned a grade 2

meniscus something anda Bakers cyst but the doc seems to discount that as

some clue.

Hope yours are painfree too!

In a message dated 1/17/04 1:20:46 PM Eastern Standard Time,

cindyh@... writes:

> <From: Mdmssmile@...

> I was told today that the bad knee pain,,,(clip)

> 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!!>

> ~

> ,

> I know what you're saying. I've never been able to do the exercises without

> pain-tho' I tried and tried only to end up far worse off. It didn't matter

> how slow I took it.

> If you find a secret to doing them without making it worse let me know.

> Nothing was seen in my x-rays either back when they started in. But the

ligaments

> and tendons, and cartilage were/are terrible.

> Wish I had some words of knowledge to impart.

> I hope your knees settle down - and you can find out what's going on.

> ~love 'n' hugs~

> CindyH .

January 17, 2004

In a message dated 1/17/04 3:15:32 PM Eastern Standard Time,

jphughes@... writes:

>

> ,

> >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!

>

> That's just ludicrous.

>

> john

Yea, I thought so too. In fact I laughed in her face when she said it but she

held firm!!

January 17, 2004

Robin,

What are you doing up too!!

Thank u for your great comments. You are absolutely right about about

theclosed chain exercises. That is why I was partially confused then about the

band

exercises and leg lifts and stuff.

Sounds like you have a great PT. I have a few good ones too but I just

can't afford to be going right now. I can't use up my limited visits so early in

the year and I can't afford to pay $30 co-pay everytime. I just found out that

mmy benefits ran out towards the beginning of Dec. for last year. It is very

very hard toever be able to figure out when they willrun out. As a consequence,

I owe about 3 visits of 250.00 each and about 3 others at about 175.00 each.

I spend lots of tme in PT!!

January 17, 2004

My neck is causing referred pain in my shoulder pain . I got an

injection in that and the pt is working a few more sessions at

trying to get it to relax.

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

Questions for you. You say your neck is causing referred pain in

the shoulder and that you got an injection for it.

(1) Is it a trigger point?

(2) What kind of injection?

(3) Which specific muscles are you trying to relax?

It certainly sounds like a trigger point. A trigger point is a spot

that, when pressed, refers pain to another part of the body. Trigger

points can occur just about anyplace in the body, but there are

typical referal patterns. Neck to shoulder and neck to back are two

of them. The current " hot ticket " for conventional medicine to treat

trigger points is injection with various solutions, including Botox,

to " freeze " the point. For them, it is quick, easy, and highly

profitable because they can get you out the door faster and get

somebody else in so they can make even more money per hour. And once

the injection wears off (and it will), you will be back so they can

do it again. Do I sound cynical?

However, you can also treat them manually. I have treated dozens of

them in the last couple of years, if not up in the hundreds by now.

It is a very simple technique and one, if you can comfortably reach

the spot, you can do on yourself. Basically, it is nothing more than

direct, sustained, deep pressure using the tip of the thumb or the

tip of a finger.

You press into the spot to the maximum pain level and then simply

maintain that pressure. You can add a circular or frictional

movement to the pressure if you want to, but you don't need to.

After a minute or so, the pain referral will start edging back

toward the point. Then the pain will no longer refer, it will just

be at the trigger point itself. Keep maintaining the same

pressure. Using a scale of 0 - 10, the pain will then start

dropping. Let's say you started at an 8. It will start dropping to

a 7, a 5 a 3 and down to a 0 or a 1. What you are trying to get to

is where it just feels like pressure - no sharp pain as such.

If it is a chronic problem. I would then go back in a second time,

pressing even deeper if possible to see if I could get it to refer

again. The reason is that trigger points sometimes occur in layers

and it takes more than one attempt to get it all worked out. By

doing this on a regular basis, it is possible to make trigger points

go away.

My objection to injections is two-fold. The obvious one is that I

don't think they are necessary. I think there is a much easier, far

less invasive way to treat trigger points. The second one is a bit

more serious. I know of some fairly nasty adverse reactions to some

of the injections being used.

If you want to know more about receiving manual trigger point work,

ask either Barb or .

If you can tell me which muscle(s) are involved, I might be able to

send you a specific neck/shoulder acupressure release pattern to

help you get them to relax.

As information, it is very common that trigger points correspond to

acupuncture points. The conventional side of the fence consistently

says there is no correlation at all. However, those of us who do

acupuncture/acupressure and are also familiar with trigger points

have a hard time accepting that there is no correlation when we find

trigger points that are PRECISELY on acupoints. And not just one or

two, but over and over and over again. One of my future goals, if I

ever get the time to do it, is to take Travell and Simons (THE bible

on trigger points) and correlate their work against some really

detailed acupuncture charts.

January 18, 2004

I read through my last evaluation from my PT. He wrote " needs to be very

careful and continue her core strengthening excercises, or she will be in for

serious problems in the future. "

Could he have written this to protect himself?

Could he have written this to keep my dr rxing PT for me? From the way I see

it, he does't need me, cause the place is always busy. ( well, with me there 3

times a week, and there 3 times a week, may he does want me to keep

coming)

I think he is a very good PT, and is just protecting me. But, who knows?

January 18, 2004

> I read through my last evaluation from my PT. He wrote "

needs to be very careful and continue her core strengthening

excercises, or she will be in for serious problems in the future. "

>

> Could he have written this to protect himself? Could he have

written this to keep my dr rxing PT for me?

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

The answer to your question is a combination of things. One has to

do with the standard of care/scope of practice issues discussed on

some of yesterday's posts. The other has to do with insurance.

One of the things that Eisenhower is most remembered for as

President is his speech warning about the dangers to freedom of the

Military-Industrial complex. I am going to rephrase that and say

that I think one of the greatest dangers to our health and well

being is the Insurance-Pharmaceutical-Medical complex.

If you are someone like Warren Buffet or Bill Gates with virtually

unlimited personal wealth at your disposal, you can pick and choose

any form of treatment/care that suits your fancy and cost is not an

issue. Unfortunately, those in that position are rare and I don't

know of anyone on the list who meets that criteria.

For the rest of us, we are largely controlled by what our insurance

will cover, or not cover. Most insurance policies will cover some

forms of alternative treatments, such as massage or physical

therapy, but it is almost universal that getting that coverage

requires first getting a prescription for it. In other words, it has

to be deemed " medically necessary " and not just something you want

to do or try. And the only way you can get a " prescription " is from

a licensed medical doctor.

The forms and papers your PT writes up, your records, are used to

substantiate that what he is doing is in accordance with your

doctor's advice, to treat what your doctor has " diagnosed. " They

are also used to substantiate progress for insurance reimbursement.

Your insurance company has the right to review those records before

paying. And they will in fact do so for any long-term, alternative

treatments. If they do not feel that what is being done is

necessary, they can and will deny the claim. If they feel that what

is being done is excessive, they can and will file a complaint for

insurance fraud.

(I have personal experience on the issue of insurance fraud. A few

years ago, I was involved in an auto accident and was seeing a

chiropractor for it. In typical chiro fashion, he wanted to see me

three times a week for a month, followed by once a week for four

months, tapering down to every other week and finally to once a

month until I died, ran out of insurance coverage, or went broke.

The insurance was paying the bills just fine until they decided that

my chiro was milking the system. At that point, they authorized a

very limited number of remaining treatments and told me that if he

(the chiro) kept processing claims with them past that point they

were going to go after him for insurance fraud. Insurance fraud is

criminal and involves hefty fines and/or jail time. I do not mean

this as an indictment of all chiros, because not all of them act

this way. I have, however, seen a number of different chiros and

osteos over the years. And I have to say that this " treatment

forever " mindset seems to be the norm rather than the exception with

chiros. It seems to be the exception rather than norm for osteos.)

At any rate, the first issue involved here is the substantiation for

on-going treatment and reimbursement. Your PT has to convince your

doctor that further treatment is warranted. If he doesn't, your

doctor won't write prescriptions for on-going treatment. No

prescription equals no medically necessary justification equals no

insurance reimbursement.

The second issue gets back to scope of practice. He has to be very

careful in the language he uses to be sure he doesn't cross the line

and start using terms that by law belong to the doctors. Again,

keep in mind that these records are subject to review by both your

doctor and the insurance company. If there is some form of third

party liability involved, such as an auto accident, these records

are also subject to review by legal staff of the that other third

party. And I can assure you, they will nit-pick them to death.

One of the things we were taught in school as far as keeping our own

records, (health intake forms and SOAP charts) was to always ask

ourselves when doing them " How will this read in a court of law? "

Long answer, but this is why your PT writes things up the way he

does.

January 18, 2004