Re: Too odd conditions related to CFS

[Guest guest]

Hi,

My finger prints are practically gone and often my finger tips look

like I have be submerged in water for hours, all wrinkly and I also feel

better when laying down.Two of the reasons, I think, are our low blood volume

and

Orthostatic Hypotention. It makes sense that we would feel better lying down.

Another sign they used to mention were the Crescent Red Moons in our throats

on each side just before the pallet, something else we don't hear about

anymore although well documented.

Take care and enjoy being horizontal.

[Guest guest]

The book " Osler's Web " (cerca 1994) mentioned that disappearing finger

prints are common among people with CFS.

Re: Orthostatic Intolerance: some say it, rather than fatigue, is the

hallmark of CFS.

I am in the Carribean now and if I get enough sleep I avoid OI. Heaven help me

if I only

sleep 5 hours though.

- .

[Guest guest]

There is also the NMH, or Neurally Mediated Hypotension, that happens, that

is harder to diagnose as the reaction is often delayed. I’ve had overall low

BP since the big relapse/progression a couple of years ago (as well as the

OI). I managed to get the systolic numbers to stay up (over 100 is great!),

by virtue of starting to smoke a small amount of organic tobacco. This has

made a huge difference!

But I’ve noticed, because I finally got a BP machine and check it myself,

that the more ill I am feeling, the lower the diastolic number is. It goes

below 50! Does anybody else have this issue or understand it? The docs won’t

listen. I wonder if it could be hypovolemia, something else the docs rarely

check for, that is so common in PWME. I already drink lots of water and

upped my salt intake.

Yes, sleep is make it or break it for me too – I need about 9 hrs. – and

meds to achieve this. Enjoy the warm caress of sun and sea! Carribean

hey…how’s things like pollution, water etc.? Sound like paradise…TC, Aylwin

xox

[Guest guest]

I have the same thing & take Florinef. I've taken it for about 10 years & it

does wonders for me...not a cure but I have a life now. There was a study about

this published in Journal of American Medicine about 10 yrs ago. Look for it to

give to your doctors.

blessings,

Paresh

http://home.earthlink.net/~sunmoonyoga/

[Guest guest]

Hi Aylwin,

I have noticed this happening to me, sometimes when I'm standing up

my diastolic BP just bottoms out. The lowest I've been able to

measure is 41. Unfortunately my machine seems to really struggle to

take a reading when this happens, and often gets an error reading

(even the machine can't believe it, lol!!).

What is strangest about this is that I have always had borderline

high blood pressure (inherited from my mum).

In addition I'm pretty sure I have POTS, no Dr has ever tested me,

but my resting heart rate sometimes goes as high as 150, if I'm

standing up. It usually sits around 130 though (standing). Drops down

to 80ish when I'm sitting.

On a completely different note I wanted to quickly mention that I

recently had a really good experience with a (female) neurologist. I

know that both of us have had really bad experiences in the past, but

apparently there are the odd (rare) good ones!!

We'll see if she continues to be good. I think the key point is that

she is a female doctor, sorry to be sexist. I've decided to only see

female doctors from now on, my experince with them has just been

soooooooooo much better.

I just wanted to mention that to give some hope to people that there

are some good doctors out there. Of course the hard part is finding

them.........

take care, ness.

[Guest guest]

Hi Ness, well it’s good to hear I’m not the only one! The only funny thing

is that I don’t get tachy (fast heart beat)…sometimes it pounds a bit if I

get up suddenly or whatever, but I have not been able to get it over 100 for

years now…even pre-relapse, when I had the capacity to try. Weird hey…it’s

like I NEVER get a fever anymore…I think that 3 years @ 104 deg (when I

first got ill) burned out that mechanism altogether in me.

I have not had the positive experience with women docs…I used to teach

medical students for 10 years, and found that it wasn’t about men or women,

just awareness, and a kind of intelligent compassion and investigative

willingness…in fact I’ve had terrible experiences with both male & female

docs…and good with both too…so I don’t worry about that, just if they are a

good doc. But I’m glad you’ve found some good’uns! Aylwin xox

[Guest guest]

Hi Liz, thanks for this…you make it seem kinda funny and less to worry

about. All I know is that when I am feeling the crappiest (weak & woozy

etc.), my diastolic is below 50. Innnteresting hey? I’m assuming this is

from either low blood volume, “flaccid” (read: exhausted) blood vessels, or

cardiac insufficiency of some kind. My systolic BP was very low as well, I

actually (and controversially I’m sure) started smoking about 4 tiny,

organic cigs per day…this has brought my systolic back up into the human

range (lowest measured – by a doc) was 80/46 <sigh>, but done nothing for

that bottom number. Thanks all! Aylwin xox

[Guest guest]

Yes, all one can do sometimes is LAUGH! Aylwin xox

_____

From: CFAlliance [mailto:CFAlliance ] On

Behalf Of diane lindeman

Sent: Thursday, February 21, 2008 7:28 PM

To: CFAlliance

Subject: Re: Too odd conditions related to CFS

enjoyed reading your post-LOL-sorry about your low B.P. I have that too and

it is usually only a problem if I ever want to stand up. It is IMPERATIVE to

keep one's sense of humor with this illness or you can get severely

DEPRESSED . I have used humor for over 30 yrs with CFIDS. Diane

[Guest guest]

The ridges on my finger at the top are almost gone the front of my

finger has some ridge detail though it is not sharp.

I prefer reading in bed where I can support my entire neck & back. I

have cranial instability & slumping chairs do not provide enough support

and eventually cause pain.

Any questions ask, I'm not shy. Take care of you.

Big gentle huggles,

Di in Feasterville-Trevose, PA )

dimntd on AIM, IRC, ICQ & Yahoo! Messenger

mlbbb wrote:

> After seeing Dr. Bell mentioned, I read about his research on the

> Internet. Two things stood out for me. Dr. Bell had noticed:

>

> (1)Many CFS suffers lose their fingerprint ridges. (This means their

> fingerprints could not be taken.)

>

> (2)Many CFS suffers prefer to read in bed vs. sitting in a chair.

>

> I looked at my fingerprint ridges, which I am pretty sure used to be easy to

see, and they were almost invisible.

>