Lurker with some questions

[Guest guest]

I have been lurking around here for a while. I was recently diagnosed with

either HEDS or FHMS (the geneticist said that differentiating between the 2

isn't worthwhile). I am 26 years old, female, mother of 2 cute little

munchkins, wife of 1, & live in Kansas City.

Anyway, my problems started during the first pregnancy--horrid hip pain. All

of the doctors, PTs, etc have assumed that hip pain means butt pain (my only

pain in the butt comes from medical professionals who are clueless). When

the pain strikes it actually could be anywhere in the 360 degrees around the

hip socket. I have had x-rays and MRIs that have shown nothing. An EMG

torture test found that I have evidence of a pinched nerve somewhere, though

the dr never explained exactly what the results were...he just mumbled a

lot...and I don't normally interrogate my torturers--I try to escape as soon

as possible. Anyway, I have decreased sensation starting at or right below

the knee and no ankle reflexes. (Before I never even knew there was such a

thing!)

Recently, I have started to have knee pain and a little back pain, so stuff

appears to be progressing. I also have had longstanding problems with

vertigo (a gazillion tests later they say that my inner ear is completely

normal), increasing problems with lightheadedness, pressure in the chest

(could be asthma/allergies flaring up though), an occasional feeling that my

body isn't making me breathe as much as it should (as if I am holding my

breath but unconsciously and yet I don't start gasping for air.) My blood

pressure used to be 90/70 and my doctor told me to increase my salt/water

intake and it has gone up to 110/90 and I no longer black out if I stand up

rapidly. Does this sound like POTS? With POTS is it normal to feel fine when

walking, but not when standing? I can't stand for very long, but I can walk

for very long periods of time. Also, I feel lightheaded even when sitting

and lying down, though it is hard to distinguish between lightheadedness and

vertigo when it isn't extreme one way or the other. Oh yeah, the

echocardiogram, Holter, EKGs, and event monitor have all not shown anything

abnormal.

And I have a question or 2 for Mike. I can be in horrid pain, and I have

never found a tender spot. I can't figure out how to get started with energy

stuff. The physiatrist poked me and poked me, trying to find fibromyalgia or

something specific, but I am not tender to the touch other than when someone

applies enough pressure to the bone to cause it to move and therefore

pull/push against the ligaments & tendons. I have a MT friend who doesn't do

energy work but is willing to give me referrals to good people, but she

needs to know what modalities would be good for me. I couldn't think of

words to describe what I need. I live in the Kansas City area, which is made

up of about 50 different suburbs/neighborhoods, so I gave up looking at

Upledger in Missouri, and all of the highly trained people in Kansas live

in/near Wichita which is a 4 hour drive, but getting more and more tempting.

Thanks for your wisdom!

Hello everyone and if there are any other lurkers out there in Kansas City,

I would love to chat with you about local stuff.

[Guest guest]

First off, welcome. It's more fun out in the yard playing with

everybody instead of standing in the corner and just watching (or

lurking).

My first question about your hip pain is whether it is in the hip

socket itself or in the area around but outside of the socket?

Also, what is the pain sensation? Tingle? Pins and needles? On

fire? Dull ache? Throbbing? The pain sensation can give a clue as

to the cause - nerve, muscle, etc. I know your torture test

indicated a pinched nerve " somewhere, though the dr never explained

exactly what the results were. " Did they do any kind of nerve

induction test? There are tests they can do to pinpoint location.

Your comment about decreased sensation below the knee and no ankle

relfexes is also suggestive of a nerve problem. I did a quick check

in my Netter's " Atlas of Human Anatomy " for leg and foot nerve

ennervation but didn't find what I was looking for right away so

will look some more tomorrow.

When you say knee pain, can you be more specific? Side, top, in the

joint itself, muscle? Same for the back pain - low back, same side

as the leg pain, etc?

The modality that comes immediately to mind for the vertigo

(especially since your gazillion tests show everything to be normal)

would be cranialsacral therapy. I just checked my level 1 manual.

One of the indications for the " temporal bone wobble " part of the

protocol is " dizziness and vertigo. "

As for the " pressure in the chest, " how is your posture? Do you by

any chance adopt a rolled forward and in position with your upper

body and shoulders? If you do, you are compressing your diaphragm

and reducing thoracic capacity, which in turn puts pressure on the

lungs and reduces your ability to get a full breath. I can think of

several modalities/techniques to address that issue.

Now for the " question or 2 for Mike. "

When you say horrid pain and have never found a tender spot, is it a

localized pain or spread over a wide area? Is it full body? Just on

one side? Yes, these are questions that relate to Fibromyalgia.

How do you get started with energy stuff? You just did - you

asked. Welcome aboard, Apprentice Padewan.

For someone just starting out, my recommendation has been to pick up

a copy of " Acupressure's Potent Points " by Gach. It

costs less than $20 new and can be picked up used through amazon.com

for as low as $10. It is an absolutely excellent starting reference

book. It is the book I used to self-teach myself acupressure two

years ago before I started taking formal classes in it. It is not

all encompassing. It doesn't list all possible points or

conditions. But if I could only have one book on the subject, it

would be the one I would keep. That says a lot when you realize that

I have about two dozen books on just acupuncture or acupressure,

including " The Manual of Acupuncture " by Deadman. Deadman is

considered the " bible " in the field. It is about 675 pages long

(versus 250 for Gach) and costs about $130 instead of $20 - and I

would still choose Gach if I could only have one. It's that good.

It is also the first one I grab for a quick reference myself. I go

to the others if Gach doesn't cover what I need or if I need some

kind of specific multiple point release pattern.

The reason I recommend starting with this is that you can get

results without having to sense energy. There are polarity

techniques I like better than acupressure for some situations, but

they involve " holding for an energetic balance " to get best

results. That is difficult to do if you can't feel the energy yet.

On the other hand, learning to feel the energy isn't difficult or

time consuming once you suspend your disbelief. I consistently have

seen people in classes with zero background or experience start

doing it within a couple of hours. There are people on the list who

have tried it based on nothing more than some of my posts and have

had immediate success. The biggest factors are being able to open

your mind to the reality of it and getting in that calm, meditative

state before doing it.

As for modalities, my basic recommendations for massage/bodywork for

EDS lean toward energetic, less invasive modalities and away from

aggressive ones. Use extreme caution for any range of motion

testing and no deep tissue work for anyone with fragile skin or easy

bruising issues. Steer clear of the aggressive modalities like

Rolfing or those that rely extensively on stretching techniques.

In addition to Upledger, there are a couple of other practitioner

directories I can check for some of the alternative (especially

energetic) modalities if you want me to.

In your case, one of the top ones I would recommend as a starting

point would be cranialsacral. I think it might address more than

just a couple of your issues and it is an extremely gentle

modality. Let me know how I can help further.