Re: So Confused.

April 25, 2002

I don't know if someone has suggested this already, but have you

seen a rheumatologist? They usually specialize in FMS. Shandi

> I am so confused. I have not been diagnosed with CFIDS or FMS but

> have all the sypmtoms and problems of CFS. I just had a sleep

study

> done to test for sleep apnea (I am very overweight) but the

results

> have only confused me more. The doctor told me I have very mild

> sleep apnea. Most people who have apnea stop breathing in the

middle

> of the night and wake up (even though they don't rmember doing it)

up

> to 100's of times a night. They do not get the rest they need,

they

> are sleep deprived and the symptoms are very much like CFS

symptoms.

> (the fatigue part). Well I do not stop breathing when I am

sleeping,

> however my breathing does slow way down. The doctor said that I

am

> only getting 3% of the stage 3 and 4 sleep (the deep restful part

of

> sleep) that I should be getting. He says a CPAP machine (a

machine

> that uses air to block open your airway while you are sleeping so

you

> do not stop breathing) would help me, but that my apnea is not bad

> enough for my insurane (cigna) to cover it. I asked him how I

could

> get better sleep and he said lose weight. Ok, well I don't eat

that

> much and I don't exercise because I am too tired to do much more

then

> go to work, so I am not sure how that is supposed to work. I have

> been looking at information on CFIDS and as I said before I have

many

> of the symptoms; short term memory problems, lack of

concertration

> that is affecting my job, tired all the time, extreme fatigue,

> clumisness, it's like I am all thumbs, or walk into a wall or hit

my

> hand on a door knob as I go by. NO ENERGY. My house is a mess

> because I am too tired to clean it, I never feel like cooking or

> cleaning, or doing my nails anymore. I am lucky to get my laundry

> done. Last year I was having problems with headaches and dizzness

> and finally went to a nuerologist who diagnosed me with migrianes

and

> gave me medication for it which does help. In the last couple of

> years I have been sick constently, in fact it's a running joke at

my

> work that if I start coughing people stay far away from me because

> most likely I will end up with a cold or flu. I have had this

over

> and over. I even had strep in January. I will wake up with a

sore

> throat one day and not feel sick in any other way, and have that

for

> a day or so. I have unexplaiend nausea from time to time. I

don't

> acutally thorw up but just have nasuea. I can sleep 12 or more

hours

> a day and still not feel rested. I wake up feeling tired. I

don't

> have trouble falling asleep now, but last year I would have racing

> thoughts and would lay in bed for hours before going to sleep. I

> have tremendous pain in my neck and shoulders that is almost

> constant. I have muscle relaxers that help a little and a heating

> pad helps some, but it never completlely goes away. I have

developed

> allergies, but I went to a allery doctor and did all the test and

my

> alleries were not bad enough to need shots, she gave me a nasal

> spray. It seems like I have a little of everything, but not

enough

> of any of it to get the treatment most people get. If I thoguht a

> cpap machine would cure my sleep problem I would just buy one

myself,

> no matter the cost, but I truly cant't see it working. It doesn't

> help the quality of your sleep, it helps you if you quit

breathing,

> which I don't. My o2 saturation only falls to 88% when I am

> sleeping. I just don't know what to do at this point. I was

hoping

> some of you with the same problems could give me some advice, does

it

> seems like I could have CFS? I made an appt for next week with my

> regular doctor, to discuss all this with her, but I know that I

have

> talked to her before about my lack of energy and she tells me

> exercise and lose weight, and she said if the apnea test wasn't

the

> problem then she didn't know what else to tell me besides lose

> weight. I am in Phoenix AZ does anyone know of any good doctors

that

> could help me, that take Cigna HMO?

>

> Well, thanks for letting me vent. I just get more and more

> frustrated and tired. LOL now I am going to go take a nap.

>

> Robin

April 25, 2002

Definitely see a rheumatologist. CFS sometimes shows up in the

bloodstream as Epstein-Barr virus, FMS doesn't appear in a blood

test, but it's like having arthritis in your muscles and soft

tissue. It comes with debilitating fatigue, even if your blood tests

are normal. It couldn't hurt to see a rheumatologist, they know the

proper tests to do to diagnose FMS. If you feel you have a lot of

the symptoms, it's worth looking at. Definitely speak up about it. I

saw doctors for a year who didn't even mention it, I have a new doc

and a rheumie who take this condition very seriously. Shandi

> > > I am so confused. I have not been diagnosed with CFIDS or FMS

> but

> > > have all the sypmtoms and problems of CFS. I just had a sleep

> > study

> > > done to test for sleep apnea (I am very overweight) but the

> > results

> > > have only confused me more. The doctor told me I have very

mild

> > > sleep apnea. Most people who have apnea stop breathing in the

> > middle

> > > of the night and wake up (even though they don't rmember doing

> it)

> > up

> > > to 100's of times a night. They do not get the rest they

need,

> > they

> > > are sleep deprived and the symptoms are very much like CFS

> > symptoms.

> > > (the fatigue part). Well I do not stop breathing when I am

> > sleeping,

> > > however my breathing does slow way down. The doctor said that

I

> > am

> > > only getting 3% of the stage 3 and 4 sleep (the deep restful

part

> > of

> > > sleep) that I should be getting. He says a CPAP machine (a

> > machine

> > > that uses air to block open your airway while you are sleeping

so

> > you

> > > do not stop breathing) would help me, but that my apnea is not

> bad

> > > enough for my insurane (cigna) to cover it. I asked him how I

> > could

> > > get better sleep and he said lose weight. Ok, well I don't

eat

> > that

> > > much and I don't exercise because I am too tired to do much

more

> > then

> > > go to work, so I am not sure how that is supposed to work. I

> have

> > > been looking at information on CFIDS and as I said before I

have

> > many

> > > of the symptoms; short term memory problems, lack of

> > concertration

> > > that is affecting my job, tired all the time, extreme fatigue,

> > > clumisness, it's like I am all thumbs, or walk into a wall or

hit

> > my

> > > hand on a door knob as I go by. NO ENERGY. My house is a

mess

> > > because I am too tired to clean it, I never feel like cooking

or

> > > cleaning, or doing my nails anymore. I am lucky to get my

> laundry

> > > done. Last year I was having problems with headaches and

> dizzness

> > > and finally went to a nuerologist who diagnosed me with

migrianes

> > and

> > > gave me medication for it which does help. In the last couple

of

> > > years I have been sick constently, in fact it's a running joke

at

> > my

> > > work that if I start coughing people stay far away from me

> because

> > > most likely I will end up with a cold or flu. I have had this

> > over

> > > and over. I even had strep in January. I will wake up with a

> > sore

> > > throat one day and not feel sick in any other way, and have

that

> > for

> > > a day or so. I have unexplaiend nausea from time to time. I

> > don't

> > > acutally thorw up but just have nasuea. I can sleep 12 or

more

> > hours

> > > a day and still not feel rested. I wake up feeling tired. I

> > don't

> > > have trouble falling asleep now, but last year I would have

> racing

> > > thoughts and would lay in bed for hours before going to

sleep. I

> > > have tremendous pain in my neck and shoulders that is almost

> > > constant. I have muscle relaxers that help a little and a

> heating

> > > pad helps some, but it never completlely goes away. I have

> > developed

> > > allergies, but I went to a allery doctor and did all the test

and

> > my

> > > alleries were not bad enough to need shots, she gave me a

nasal

> > > spray. It seems like I have a little of everything, but not

> > enough

> > > of any of it to get the treatment most people get. If I

thoguht

> a

> > > cpap machine would cure my sleep problem I would just buy one

> > myself,

> > > no matter the cost, but I truly cant't see it working. It

> doesn't

> > > help the quality of your sleep, it helps you if you quit

> > breathing,

> > > which I don't. My o2 saturation only falls to 88% when I am

> > > sleeping. I just don't know what to do at this point. I was

> > hoping

> > > some of you with the same problems could give me some advice,

> does

> > it

> > > seems like I could have CFS? I made an appt for next week

with

> my

> > > regular doctor, to discuss all this with her, but I know that

I

> > have

> > > talked to her before about my lack of energy and she tells me

> > > exercise and lose weight, and she said if the apnea test

wasn't

> > the

> > > problem then she didn't know what else to tell me besides lose

> > > weight. I am in Phoenix AZ does anyone know of any good

doctors

> > that

> > > could help me, that take Cigna HMO?

> > >

> > > Well, thanks for letting me vent. I just get more and more

> > > frustrated and tired. LOL now I am going to go take a nap.

> > >

> > > Robin

April 25, 2002