Re: OI question and my thoughts

[Guest guest]

> And just in case you forgot my question after reading totally-unrelated,

> verbose commentary (I nearly forgot what I was asking about too!), how do

> you all deal with EDS-related OI? I am trying to increase water and salt

> intake, but would compression hose be effective at all, or should I try

> medication?

Hi ,

I also had orthostatic intolerance for years. It was related to low blood

pressure. The extra water and salt didn't really make any difference for

me. What DID finally help was caffeine. I had 16 oz of coffee every

morning and eliminated ALL other caffeine throughout the day. The caffeine

would raise my BP just enough to keep me from fainting. The reason I

eliminated other caffeine was to maintain a specific caffeine dose in my

system, no ups and downs. It helped me manage the symptoms for several

years. Now I don't have OI anymore because I am on medication for

hypothyroid which has caused my blood pressure to rise.

As for compression hose, I have heard from folks who use them. They say

they help, but I can't seem to put them on without making big holes in them.

I have given up on all hose because I am too clumsy to get them on.

-Barb

[Guest guest]

thanks. I found a Hobby Lobby about 45 mins from me. I had seen the pen at

Cindy 's house and really liked it

OI question and my thoughts

Hello everyone! A question and a few other thoughts.

I have just been diagnosed with orthostatic intolerance (no definitive

diagnosis on POTS yet). I am wondering if compression hose/stockings/torture

devices or whatever you like to call them are truly effective for EDS

stretchy veins? I don't have any swelling in my feet. I would rather not

take any more medicine if I don't have to. And can you put them on without

your fingers giving out?

Mike Uggen worked on me about a month ago, and I have been feeling sooooooo

much better! I think I have only taken 1 or maybe 2 doses of tramadol since

then and a few ibuprofen, while before he worked on me I was taking those

medicines everyday and they still weren't wiping out much pain. I think I

still have just as many subluxations/weird bone movements, but they don't

hurt much anymore. Thanks so much Mike!

I have been using the PenAgain for almost a month now.

http://www.penagain.com/ I bought the original PenAgain at one Hobby Lobby

store for $5 and the ErgoSoft PenAgain at another Hobby Lobby for $10. There

isn't much difference between the two--the " soft " texture is just a velvety

texture on the pen that feels somewhat like EDS soft skin, hehe. It isn't

squishy at all, which is good because that would encourage me to squeeze it

more tightly. The ErgoSoft also comes with 1 ink refill and 1 PDA stylus,

while the original is packaged alone. I am thinking of buying one more pen

to put the stylus in (it is way too much hassle to swap the ink and stylus

every time I use it.) I am trying to retrain my brain to not squeeze the pen

or to become too Jell-O-like and I think I am getting better at that. I

haven't had any hand cramps/muscle fatigue while using it. I wish I had had

these pens from kindergarten through college!!! If you are in the middle of

the US near a Hobby Lobby store, I strongly recommend going there to buy

one; they are in the pen/pencil aisle in the art section.

Since I mentioned PDAs, I have to say that I would cease to function without

mine. I carry it with me everywhere instead of pieces of paper with

illegible writing that blow out of my purse or get torn. Shopping list,

calendar of doctor's appointments, address book, notes to myself, recipes I

use frequently, etc. My memory is just fried...I am constantly forgetting

conversations, every phone number other than my husband's and my parents',

what I did 5 minutes ago...this is just a life saver. When I go back to

school, I plan to buy a fold-up keyboard to hook up to it and I will type

all my notes (or use stylus to draw diagrams). Much lighter weight and

cheaper and less bulky than any laptop. I have a Dell Axim with Microsoft

Word, so I can synchronize it with MS Outlook (software included with PDA)

and back up/archive the documents using my desktop computer. And when I am

in a doctor's waiting room/exam room for hours at a time, I can play

Solitaire to pass the time!!!!

For all those back-to-school shoppers, I have to recommend PenAgains and

PDAs.

And just in case you forgot my question after reading totally-unrelated,

verbose commentary (I nearly forgot what I was asking about too!), how do

you all deal with EDS-related OI? I am trying to increase water and salt

intake, but would compression hose be effective at all, or should I try

medication?

, HEDS

PS. While I am not a very active poster, I do read all the emails and I pray

for all of you who mention difficulties needing prayer.

To learn more about EDS, visit our website: http://www.ehlersdanlos.ca

[Guest guest]

In a message dated 8/2/04 8:05:27 PM Eastern Daylight Time,

bonnieh4455@... writes:

> Diagnosed with orthostatic intolerance (no definitive

> diagnosis on POTS yet). I am wondering if compression

> hose/stockings/torture

> devices or whatever you like to call them are truly effective for EDS

> stretchy veins? I don't have any swelling in my feet. I would rather not

> take any more medicine if I don't have to. And can you put them on without

I wear them on flights and if I am going to be using these " gams " more then

normal.

They do help a lot, I got mine from Doug. Yes, hubby. When he had his cancer

surgery last year he also was doing a test for them on blood clots and

surgeries....thinking it would help the EDS Community. We also will be printing

this

medical research with Dr. Shapiro's permission as soon as they are finished

with this study. This was part of the agreement that he did this (what a

guy)...well, they are spendy...so I asked them if I could keep them after he was

done and they were most gracious. Since then I have purchased several shorter

versions for under slacks. Good investment.....do it. My opinion......Counts!!

C

[Guest guest]

Re: OI question and my thoughts

When had to wear a compression sock after her foot tumor removal, we

were told to use Playtex Latex rubber gloves to help get them on. If you're

allergic to latex, don't use them!

I believe there is latex in the stockings/hose too so be careful!

[Guest guest]

Re: OI question and my thoughts

When had to wear a compression sock after her foot tumor removal, we

were told to use Playtex Latex rubber gloves to help get them on. If you're

allergic to latex, don't use them!

I believe there is latex in the stockings/hose too so be careful!

[Guest guest]

Thanks for that suggestion! I am allergic to latex, so I am making a note of

that in my list of things to discuss with the doctor. I wonder if EDSers are

more likely to have latex allergies? Mine started out as a banana allergy

(from the time I was very, very young), but only in the last year have I

started reacting to latex. I wheeze now every time people play with latex

balloons around me.

________________________________________________________________________

When had to wear a compression sock after her foot tumor removal,

we were told to use Playtex Latex rubber gloves to help get them on. If

you're allergic to latex, don't use them!

I believe there is latex in the stockings/hose too so be careful!

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