A few notes, experiences, personal somethings...

[Guest guest]

1. The thing I keep forgetting is: " While there may not be a cure, there can

be healing. " Hard to hold on to that.

2. When my first primary care said, yes you have EDS, and, " I'd like to send

you to a psychiatrist, because this can't be easy to deal with " , I agreed. I

had avoided psychiatry for years, but his reasoning seemed sound. What I

discovered was that I have an anxiety problem. Of course I do -- when you can't

rely

on your body to behave the same way twice, anxiety is a natural response.

Does this mean it shouldn't be treated? THAT didn't seem reasonable. After about

a year of trying things out, we settled on my current regimen...and I have to

say it helps. That my shoulders won't stay in place, for example, is a lot

easier to deal with when my brain isn't racing around all the negative

possibilies. Whether or not I'd have the anxiety without the EDS, I don't know,

and I

don't really care. I wasn't told, it's all in my head, or I would have refused

-- I was just offered help. And it is a significant help to keep my

anxieties in check. (We won't even talk about how much it helps to be able to

sleep

through a night without waking up gasping for breath every half hour....)

3. Before I went to Western docs, I had explored many alternative health care

methods. Where I had gone wrong, typically for me, is that I looked at all

the wrong ones - shiatsu and chiropractic, for example, both very invasive,

harder forms of therapy. What I've discovered since Mike's posts (beyond that I

had swallowed Western medicine hook, line and sinker, despite my being on guard)

is that acupressure in the gentler form, with moderate pressure for longer

periods of time, does help me a great deal with the effects of EDS. It doesn't

help keep, say, my hips in place (so far), but it does help with the resulting

aches...

I can't say my pain is any better, as such -- but I can say that my handling

it IS.

4. What I keep learning, and boy I must need this lesson because it keeps

cropping up, is that the gentler ways work. Not just in physical therapy, but in

all types of therapy...and in life...

No real point to any of this. I just needed to " verbalize " it all...

[Guest guest]

In a message dated 1/10/04 12:11:43 PM Eastern Standard Time, MTLamar@...

writes:

<< What I keep learning, and boy I must need this lesson because it keeps

cropping up, is that the gentler ways work. Not just in physical therapy,

but in

all types of therapy...and in life... >>

Fantastic observation Mark!!!! I wish it hadn't taken me so long to figure

it out myself......

Hugs,

Sue

[Guest guest]

> No real point to any of this. I just needed to " verbalize " it all...

Great observations, Mark!!

-Barb

[Guest guest]

Mark -

First, I agree with the other responses - good observations.

I would like to add a couple of things to what you said.

Mark:

> 1. The thing I keep forgetting is: " While there may not be a cure,

there can be healing. "

Mike:

In addition to healing, there is also the issue of coping. Nothing

that I have done or do can in anyway be construed as " a cure. " But

I have been able to come up with things that I have used with my

family that have been effective in dealing with the symptoms, and

without having to resort to meds or physically invasive procedures.

No cure, but I think I have been able to improve the quality of our

day to day lives.

Mark:

> 2. When my first primary care said, yes you have EDS, and, " I'd

like to send you to a psychiatrist, because this can't be easy to

deal with " , I agreed. ... I wasn't told, it's all in my head, or I

would have refused ... I was just offered help. And it is a

significant help to keep my anxieties in check.

Mike:

Your inclination to refuse would have been a correct reaction

because it ISN'T " all in your head. " The truth of the matter is

that " pain " isn't fully understood by the medical profession. There

are numerous definitions of pain and types of pain, and wide

disagreement as to causes and treatments. One of the things on

my " to do list " for the Files section is a write-up on pain.

Mark:

> 3. Where I had gone wrong, typically for me, is that I looked at

all the wrong ones - shiatsu and chiropractic, for example, both

very invasive, harder forms of therapy.

Mike:

Both of the therapies you mentioned can be very effective. I have

been trained in the one (shiatsu) and been the recipient of I could

not tell you how many treatments by the other (chiropractic). You

are " smack on " to my objection to both for EDS. Shiatsu works with

the very same " meridians and points " that I do with acupressure. The

main differences are that traditional shiatsu uses more of a

stretching technique to stimulate the meridians. This stretching,

as you have undoubtedly experienced, can put extra stress on your

joints. With acupressure, I put zero stress on the joints. The

other key difference is that it is far easier to do self-acupressure

than it is to do self-shiatsu. Chiropractic " tends " to use a more

aggressive manipulative technique.

Mark:

>What I've discovered since Mike's posts (beyond that I had

swallowed Western medicine hook, line and sinker, despite my being

on guard) is that acupressure in the gentler form, with moderate

pressure for longer periods of time, does help me a great deal with

the effects of EDS. It doesn't help keep, say, my hips in place (so

far), but it does help with the resulting aches...

Mike:

Something else you are going to find as you continue to use it is

that the effects are layered and cumulative, and this is true of any

of the energetic modalities. You will start by using certain points

for a specific problem, such as a headache or constipation. You are

suffering NOW from a symptom so you use the points for immediate

relief. But as you continue to do this over time, you will find

that " incidents " of that problem or symptom decrease both in

frequency and intensity. When I first started doing acupressure on

myself for headaches about 20 months ago, I was getting brutal

tension headaches 2-4 times a week (and sometimes more often than

that). Initially, all I was after was some form of immediate relief

without having to take a dozen Aleve in a two hour period to get it

(that is not an exaggeration - that was the quantity I was typically

taking.) After a few months, I suddenly realized that I wasn't

getting the headaches as often as in the past and when I did get

one, it wasn't as severe. A while later, I suddenly realized that I

hadn't had any at all for literally months.

Mark:

> I can't say my pain is any better, as such -- but I can say that

my handling it IS.

Mike:

We are back to the issue of coping. As you find yourself better able

to deal or cope with the symptoms, your mind-set and attitude

improve, and along with that your quality of life. You change your

perspective from that of a victim to that of a survivor.

Mark:

> 4. What I keep learning, and boy I must need this lesson because

it keeps cropping up, is that the gentler ways work. Not just in

physical therapy, but in all types of therapy...and in life...

Mike:

Amen on that comment. The problem with too many of the more

aggressive, more invasive therapies (whether we are talking about

convential medicine or alternative approaches) is that the solution

and/or side effects sometimes seem worse than the problem they are

trying to fix.

Mark:

> No real point to any of this. I just needed to " verbalize " it

all...

Mike:

I don't agree with your last statement at all. I think there are

REAL points to everything you said - and good ones at that.

[Guest guest]

Mark -

First, I agree with the other responses - good observations.

I would like to add a couple of things to what you said.

Mark:

> 1. The thing I keep forgetting is: " While there may not be a cure,

there can be healing. "

Mike:

In addition to healing, there is also the issue of coping. Nothing

that I have done or do can in anyway be construed as " a cure. " But

I have been able to come up with things that I have used with my

family that have been effective in dealing with the symptoms, and

without having to resort to meds or physically invasive procedures.

No cure, but I think I have been able to improve the quality of our

day to day lives.

Mark:

> 2. When my first primary care said, yes you have EDS, and, " I'd

like to send you to a psychiatrist, because this can't be easy to

deal with " , I agreed. ... I wasn't told, it's all in my head, or I

would have refused ... I was just offered help. And it is a

significant help to keep my anxieties in check.

Mike:

Your inclination to refuse would have been a correct reaction

because it ISN'T " all in your head. " The truth of the matter is

that " pain " isn't fully understood by the medical profession. There

are numerous definitions of pain and types of pain, and wide

disagreement as to causes and treatments. One of the things on

my " to do list " for the Files section is a write-up on pain.

Mark:

> 3. Where I had gone wrong, typically for me, is that I looked at

all the wrong ones - shiatsu and chiropractic, for example, both

very invasive, harder forms of therapy.

Mike:

Both of the therapies you mentioned can be very effective. I have

been trained in the one (shiatsu) and been the recipient of I could

not tell you how many treatments by the other (chiropractic). You

are " smack on " to my objection to both for EDS. Shiatsu works with

the very same " meridians and points " that I do with acupressure. The

main differences are that traditional shiatsu uses more of a

stretching technique to stimulate the meridians. This stretching,

as you have undoubtedly experienced, can put extra stress on your

joints. With acupressure, I put zero stress on the joints. The

other key difference is that it is far easier to do self-acupressure

than it is to do self-shiatsu. Chiropractic " tends " to use a more

aggressive manipulative technique.

Mark:

>What I've discovered since Mike's posts (beyond that I had

swallowed Western medicine hook, line and sinker, despite my being

on guard) is that acupressure in the gentler form, with moderate

pressure for longer periods of time, does help me a great deal with

the effects of EDS. It doesn't help keep, say, my hips in place (so

far), but it does help with the resulting aches...

Mike:

Something else you are going to find as you continue to use it is

that the effects are layered and cumulative, and this is true of any

of the energetic modalities. You will start by using certain points

for a specific problem, such as a headache or constipation. You are

suffering NOW from a symptom so you use the points for immediate

relief. But as you continue to do this over time, you will find

that " incidents " of that problem or symptom decrease both in

frequency and intensity. When I first started doing acupressure on

myself for headaches about 20 months ago, I was getting brutal

tension headaches 2-4 times a week (and sometimes more often than

that). Initially, all I was after was some form of immediate relief

without having to take a dozen Aleve in a two hour period to get it

(that is not an exaggeration - that was the quantity I was typically

taking.) After a few months, I suddenly realized that I wasn't

getting the headaches as often as in the past and when I did get

one, it wasn't as severe. A while later, I suddenly realized that I

hadn't had any at all for literally months.

Mark:

> I can't say my pain is any better, as such -- but I can say that

my handling it IS.

Mike:

We are back to the issue of coping. As you find yourself better able

to deal or cope with the symptoms, your mind-set and attitude

improve, and along with that your quality of life. You change your

perspective from that of a victim to that of a survivor.

Mark:

> 4. What I keep learning, and boy I must need this lesson because

it keeps cropping up, is that the gentler ways work. Not just in

physical therapy, but in all types of therapy...and in life...

Mike:

Amen on that comment. The problem with too many of the more

aggressive, more invasive therapies (whether we are talking about

convential medicine or alternative approaches) is that the solution

and/or side effects sometimes seem worse than the problem they are

trying to fix.

Mark:

> No real point to any of this. I just needed to " verbalize " it

all...

Mike:

I don't agree with your last statement at all. I think there are

REAL points to everything you said - and good ones at that.

[Guest guest]

Mark -

First, I agree with the other responses - good observations.

I would like to add a couple of things to what you said.

Mark:

> 1. The thing I keep forgetting is: " While there may not be a cure,

there can be healing. "

Mike:

In addition to healing, there is also the issue of coping. Nothing

that I have done or do can in anyway be construed as " a cure. " But

I have been able to come up with things that I have used with my

family that have been effective in dealing with the symptoms, and

without having to resort to meds or physically invasive procedures.

No cure, but I think I have been able to improve the quality of our

day to day lives.

Mark:

> 2. When my first primary care said, yes you have EDS, and, " I'd

like to send you to a psychiatrist, because this can't be easy to

deal with " , I agreed. ... I wasn't told, it's all in my head, or I

would have refused ... I was just offered help. And it is a

significant help to keep my anxieties in check.

Mike:

Your inclination to refuse would have been a correct reaction

because it ISN'T " all in your head. " The truth of the matter is

that " pain " isn't fully understood by the medical profession. There

are numerous definitions of pain and types of pain, and wide

disagreement as to causes and treatments. One of the things on

my " to do list " for the Files section is a write-up on pain.

Mark:

> 3. Where I had gone wrong, typically for me, is that I looked at

all the wrong ones - shiatsu and chiropractic, for example, both

very invasive, harder forms of therapy.

Mike:

Both of the therapies you mentioned can be very effective. I have

been trained in the one (shiatsu) and been the recipient of I could

not tell you how many treatments by the other (chiropractic). You

are " smack on " to my objection to both for EDS. Shiatsu works with

the very same " meridians and points " that I do with acupressure. The

main differences are that traditional shiatsu uses more of a

stretching technique to stimulate the meridians. This stretching,

as you have undoubtedly experienced, can put extra stress on your

joints. With acupressure, I put zero stress on the joints. The

other key difference is that it is far easier to do self-acupressure

than it is to do self-shiatsu. Chiropractic " tends " to use a more

aggressive manipulative technique.

Mark:

>What I've discovered since Mike's posts (beyond that I had

swallowed Western medicine hook, line and sinker, despite my being

on guard) is that acupressure in the gentler form, with moderate

pressure for longer periods of time, does help me a great deal with

the effects of EDS. It doesn't help keep, say, my hips in place (so

far), but it does help with the resulting aches...

Mike:

Something else you are going to find as you continue to use it is

that the effects are layered and cumulative, and this is true of any

of the energetic modalities. You will start by using certain points

for a specific problem, such as a headache or constipation. You are

suffering NOW from a symptom so you use the points for immediate

relief. But as you continue to do this over time, you will find

that " incidents " of that problem or symptom decrease both in

frequency and intensity. When I first started doing acupressure on

myself for headaches about 20 months ago, I was getting brutal

tension headaches 2-4 times a week (and sometimes more often than

that). Initially, all I was after was some form of immediate relief

without having to take a dozen Aleve in a two hour period to get it

(that is not an exaggeration - that was the quantity I was typically

taking.) After a few months, I suddenly realized that I wasn't

getting the headaches as often as in the past and when I did get

one, it wasn't as severe. A while later, I suddenly realized that I

hadn't had any at all for literally months.

Mark:

> I can't say my pain is any better, as such -- but I can say that

my handling it IS.

Mike:

We are back to the issue of coping. As you find yourself better able

to deal or cope with the symptoms, your mind-set and attitude

improve, and along with that your quality of life. You change your

perspective from that of a victim to that of a survivor.

Mark:

> 4. What I keep learning, and boy I must need this lesson because

it keeps cropping up, is that the gentler ways work. Not just in

physical therapy, but in all types of therapy...and in life...

Mike:

Amen on that comment. The problem with too many of the more

aggressive, more invasive therapies (whether we are talking about

convential medicine or alternative approaches) is that the solution

and/or side effects sometimes seem worse than the problem they are

trying to fix.

Mark:

> No real point to any of this. I just needed to " verbalize " it

all...

Mike:

I don't agree with your last statement at all. I think there are

REAL points to everything you said - and good ones at that.

[Guest guest]

You have experiences some pretty tremendous growth here Mark, your tough

experiences have enabled you to push in another direction and I am pleased

that you are happier with the direction you are travelling!

Jill