Re: Question to Group

[Guest guest]

Barbara -

I mostly lurk here, but I wanted to put my two cents in about your

daughter's health issues. I've had CFIDS/FM for 12 years, and have had

similar (but not identical) problems: they've been linked to Orthostatic

issues,

which might have some role in the problems that your daughter is having.

I have had two different problems, probably related, which presented

in a similar way: passing out/falling down, losing consciousness for brief

periods of time, having difficulties (with breathing, moving, speaking,

temperature control, heart rate, etc.) immediately after. The labels the

doctors

have given me for these problems are Postural Orthostatic Hypotensive

Syndrome (POTS) or Neurally Mediated Hypotension (NMH). I had the NMH

diagnosis

first, but the doctor I was seeing then hadn't even really heard of it, much

less dealt with it. Later on, with a new doctor (and a new insurance company),

I was able to undergo Tilt Table Testing, which is where the POTS diagnosis

was finally given to me.

Both NMH and POTS have treatments that can be successful for them (mine

is semi-controlled, at best). To the best of my knowledge, they're most

usually diagnosed through Tilt Table Testing - which, basically, is that they

strap you to a table that is then tilted to stimulate a standing position &

measure your heartrate, blood pressure, etc. *and for people who have CFIDS or

either of those issues can be really, really difficult* - & /or wearing a

Halter monitor.

If your daughter hasn't had these tests, or if these conditions haven't

been considered in her case, you might want to mention them to her doctors.

They're autonomic dysfunctions related to CFIDS/ME, in much of the literature

I've seen: You can check

_http://www.ahummingbirdsguide.com/themesymptomlist.htm_

(http://www.ahummingbirdsguide.com/themesymptomlist.htm) ; there's a

little bit more information there. There was also a major study, I think out

of s Hopkins, about 4-6? years ago, about the correlation between CFIDS

and NMH.

I hope that this has been helpful, and, as an adult daughter with CFIDS,

with a mother who does the majority of caring for me, can I just say: Thank

You! For Caring, for doing what you can, for believing in her, especially

when it seems like most everybody else doesn't. It's so wonderful that she has

you.

May both of you be as well as possible, and if you need more info, I'll

see what I can find for you!

Lil

[Guest guest]

Hi Barbara,

Has she ever seen a pulmonary dr before? Her symptoms of blacking

out and losing muscle control, falling, then returning to normal

sounds a lot like narcolepsy/cataplexy. This is what I was dxed

with about 3 years ago. I also have fibromyalgia and CFS, but these

were symptoms not associated with either of them. That's when my

rheumatologist sent me to see a pulmonary dr. They also perform

sleep studies for sleeping disorders. If she hasn't already tried

this type of dr, it may not hurt. Hope that helps a bit!

Much luck,

Cheri

>

> Hello,

>

> I am the carer for my adult daughter who suffers from a mix of ill

> health.

>

> She was diagnosed with CFS/ME about 20 years ago. About the same

> time as the first me symptoms appeared, she also began to

experience

> blackouts. Without warning, she lost consciousness and fell to the

> ground. This episode typically lasts for less than a minute. In

> regaining consciousness, she is very thirsty and often her mouth

and

> hand muscles are in semi-paralysis for about 5 minutes.

[Guest guest]

Barbara,

... " innumerable neurological consultants who insist

that it must be a feature of her psychological

condition. However, her long-term psychiatrist is

insistent that this is not the case. "

What Country do you live in? That has a bearing on

how our illnesses " story " plays out..M.E. certainly

reflects just by name more accurately what here is

referred to as " fatigue " . (grrr)

Unfortunately, my sister-in-law is a

neuropsychologist.....who recently patronizingly

" explained " to me that " of course CFIDS is genuine

ALTHOUGH psychosomatic " ...this individual imparted her

views well to my in-laws..need I say more...well

Barbara I recently read the definition of

psychosomatic and that term applies " only " to those

patients manifesting symptoms WITHOUT medical

explanation.

So her psychiatrist supports her and your own post

clearly identifies valid medical symptoms. I am

sincerely trying to remain objective and not to become

to caustic as to my view of the neurologists your

daughter has so far experienced so will just say there

must be a neurologist with up-to-date knowledge and

medical acumen who could work with your daughter's

psychiatrist to help your daughter experience a higher

and safer quality of life.

In other words if the medical community cannot

identify what is considered a " valid " diagnosis an

individual will be deemed psychosomatic.

Please look at a couple other postings today about

links to current awareness information re CFIDS in the

U.S., the Centers for Disease Control is taking a firm

stand that the illness is not somatic. And that

depression can occur as a secondary factor.

I am glad to hear her psychiatrist (and psychiatrists

are generally M.D.'s who have also been trained in the

field of psychology, sometimes you can find M.D.'s

that have a Masters and a Doctorate in Psychology)

supports her..has her psychiatrist written consultant

letters on her behalf to any of the neurologists that

have been seen?

Years ago I was very fortunate and too naive to know

how fortunate..my M.D. supported me, sent me to an

infectious disease specialist (this was in the late

'90s) a rheumatologist and something else I can't

recall...with requests for those physicians to chime

in on their diagnosis..he did a letter for me to take

to them.

Also something else I learned along the way was if a

medical institution itself does not believe in a

condition that belief tends to filter to most

personnel at said institution. (An ex. would be Mayo

Clinic which as recently as five years ago did not

acknowledge CFIDS as a genuine medical illness) Oddly

enough it is often the well-respected facilities that

are the last to " recognize " conditions as valid.

So don't be shy about shopping about for different

neurologists in different areas to the extent you are

able.

I hope you might find something useful in this post.

My best to you and your daughter.

Marie in IL

[Guest guest]

Hi Barbara

This is a section from the www.cdc.gov/cfs website under

" Treatment " ...has your daughter ever seriously been evaluated for " Orthostatic

Instability " ? Has her diagnosis of CFS/M.E. been taken seriously by the

neurologists she has so far seen?

" Orthostatic Instability

Some patients with CFS may also exhibit symptoms of orthostatic instability, in

particular frequent dizziness and light-headedness. Depending on severity and

clinical judgment, these patients should be referred for evaluation by a

cardiologist or neurologist. Specific treatment for orthostatic instability

should only be initiated following confirmed diagnosis and by clinicians

experienced in evaluating therapeutic results and managing possible

complications.

Treatments for orthostatic problems include volume expansion for CFS patients

who don't have heart or blood vessel disease. If symptoms don't improve with

increased fluid and salt intake, prescription medications and support hose can

be prescribed.

During office visits, provide a place for CFS patients to recline if they have

difficulty staying upright for more than a few minutes at a time. "

Marie in IL(US)

[Guest guest]

If the pain is in your legs/muscles, increase you magnesim levels and see if

that helps. Go to at least 500-600 mg a day.

Janet

cf_alliance wrote:

(Note: Email received by CF-Alliance.)

I have CFIDS and does anyone have suffer from severe pain, nausea, I

have most of the other symtoms, the only things that helps the pain is

strong pain meds which cause so many other problems, I have tried

herbs for the pain but nothing seems to help, people I have spoken

with do not seem to have this type of awful pain and nausea, all the

tests have come back normal, I have tired several holistic avenues but

no one can relieve this pain. I just feel like I am going in circles.

Thank You,

Jeannette

[Guest guest]

Hi Jeannette, mine is speeled with one (N),

My Doctor has given me Phenergan(25mg) for nausea, and it does help

it. It only lasts about 4 hours, but that is fine if it works. Also

have pain, and many other symptoms, but wanted to tell you about that

med.

Take care,

Jeanette

>

> (Note: Email received by CF-Alliance.)

>

> I have CFIDS and does anyone have suffer from severe pain, nausea, I

> have most of the other symtoms, the only things that helps the pain

is

> strong pain meds which cause so many other problems, I have tried

> herbs for the pain but nothing seems to help, people I have spoken

> with do not seem to have this type of awful pain and nausea, all the

> tests have come back normal, I have tired several holistic avenues

but

> no one can relieve this pain. I just feel like I am going in circles.

> Thank You,

> Jeannette

>

[Guest guest]

How about the Attorney General?

[Guest guest]

I suggest getting the book An Alternative Approach to Allergies by

Drs. Theron G. Randolph and Ralph W. Moss., studying it and making

sure those in charge learn what this is about. They need to know.

People don't understand this illness but with the poisoning of our

world these things will soon become very common and actually already

are. Even mental ills may be caused by environmental toxins! This

book is an absolute must for anyone who has to deal with MCS. I am

forever photocopying pages out of it to give away. It's been

published in other languages as well. I got my first copy in German

from the doctor I used to work for. All the little oddities like my

daughter getting sick in the back seat of the car are explained in

detail in this book.

If the judge isn't an environmental specialist, she needs to call a

witness in who is! She's made herself a very foolish-looking person

by her actions and needs to be educated. If you can find it in your

heart to send her a copy of the book, then please do so. It may

help the next person who has this challenge.

Sharon

>

> (Note: The CF-Alliance received this urgent email, requesting

advice.)

>

> My son and I were exposed to chemicals and mold and now have

chronic

> fatigue and chemical sensitivities. We went to one doctor in

southern

> CA

> who didn't believe in our illness, called our medical history

crap,

> and

> turned us into child protective services for some psy. disorder

she

> remembered from medical school.