Re: update and article

[Guest guest]

Thanks for the update and the article, Elaine! I've read several pieces

by Margaret at the National Medical Library site, and I think

she's very interesting, pleasantly offbeat.

Wonderful that you are experiencing some improvement in your

fibromyalgia symptoms due to the CPAP device. Has anyone in your

fibromyalgia group had similar results? Just wondering.

Sounds like you and Ed are finally in your element. Sorry about all of

the upheaval in your life recently, but I'm hoping for calmer, happier

times for you from now on. And don't worry about the STUFF - at least

you don't have to move it again!

[ ] update and article

> Dear Friends,

>

> I found this article EXTREMELY interesting.. especially in light

> of the fact that I have been dx with sleep apnea and have

> been using the CPAP machine since the beginning of December

> and it is relieving some of the fibro systems... still have the

diabetes

> and COPD to deal with.. but it is slightly easier to adjust

> to challenges with one component slightly diminished.

> It would be interesting for each of you to ask your

> " sleeping partner " if you " snore " or seem to " stop breathing "

> during the night and, if so, check into the possibility of being

> tested for sleep apnea.

>

> Haven't been on the computer much lately. Will try to schedule

> more time. My husband took a " forced " early retirement from

> his job in Chicago the third week in January and we decided

> to leave the area and move to Alabama where we had a mobile

> home already set up and ready for us on the property where my

> daughter and son-in-love and (7), Brittany (5), and

> (3) live. Ed brought me down to Alabama mid February

> along with my oxygen and C-Pap equipment and then he and

> went back up to Chicago with the Jeep and rented a

> truck and towbar: packed up the rest of our belongings and

> drove the truck towing the car - while Ed drove the Jeep

> back down here.

>

> My daughter had made me an appointment with an internal

> med specialist, a pulmonary doctor and a diabetes eye specialist

> for March 4. Ed and went with me. What a tiring day!

> The eye doctor set the cataract surgery for my right eye for

> March 14, and the other two doctors did the required tests and

> gave the clearance for surgery. THEN came one week of REST

> (in bed) and the then March 25, saw the internal med again and

> had the left cataract done March 28th (Helps to have a daughter

> who used to be an RN working with the doctor's nurses!!)

>

> So... I can SEE again, however, my STUFF is still not unpacked,

> and the combination of the surgeries, my Medicare getting all

> screwed up (sorry) and the EXTREME tiredness I've been

> experiencing, has been impacting my life, quite severely for

> the past few months. I am starting to see a light at the end

> of the tunnel (especially since I go Friday for my new POST

> Cataract eyeglasses exam!!) AND I just received word on Sat.

> that my Medicare is straightened out. Now I have to call all

> the doctors, surgery center, anesthesia, oxygen company,

> etc and get them to re-file all the claims.. since on COBRA,

> Medicare is considered PRIMARY..

>

> To add to the mix, Ed has been helping add an extension

> to my daughter's house (to the kitchen by removing the

> outside wall to the end of a porch, thereby increasing the

> size of the dining area and the cabinet area by 1/3. He

> has been over there painting, etc. as well as helping me

> with " body maintenance " and cooking, cleaning and

> STUFF. I had the kids over a couple of times, but I

> am just starting to get my strength back, and THEY

> TIRE ME OUT QUICKLY!! Like the curious, active

> children they are, they are into everything - un-packed

> boxes, etc.

>

> Things are getting much better, though.

> Hope to be more involved in the future. Enjoy reading

> all the posts, even though I don't respond very often.

>

> May God continue to provide each of us with a measure of

> STRENGTH, WISDOM and PEACE.

>

> elaine

>

>

> Fibromyalgia

>

> Margaret T. , MD

>

>

> Fibromyalgia is a clinical diagnosis. The disease is characterized by

> musculoskeletal pain and diffuse tender points. Frequently the

patients have

> associated sleep disorder and fatigue. They also have some

organ-specific

> manifestations that are functional in nature. It has actually been

described

> as far back as the 1700's, but really I'd say in the late 70's until

now it

> has become a very prominent diagnosis from a medical standpoint, from

a work

> disability standpoint, and from a medical/legal standpoint because

it's such

> a nebulous area.

>

> Fibromyalgia was eventually used over the older term, fibrositis

because

> there really is no evidence of an inflammatory component. The

triggering

> event is some sort of disruption of sleep which leads to poor rest at

night,

> so you have non-restorative sleep which leads to fatigue, and also

> presumably the muscles also need to relax. If they don't, there is

muscle

> pain and that leads to lack of activity. Patients become

de-conditioned and

> poor conditions maybe further begets pain and the pain then, as a sort

of

> positive feedback cycle, disrupts the sleep. Whatever causes it, you

get

> this vicious cycle of muscle pain, fatigue and sleep disorder. People

have

> tried to look at various neurohormonal chemicals, such as insulin-like

> growth factor 1 was hot for awhile, substance P in the cerebral spinal

> fluid, serotonin is probably the thing that people latch onto most

because

> we use drugs that affect CNS serotonin metabolism and they seem to

help. So

> maybe there is something in that. Also there may be a predisposition.

No

> genetic component has been found yet but I always wonder, do the

patients

> have some sort of premorbid personality that maybe makes it more

likely for

> them to develop fibromyalgia? Unfortunately, every patient I ever

asked

> says, " Oh, before I got sick I was fine, energetic, working hard. " And

often

> they are but I haven't found anything very distinctive in just my

cursory

> evaluation of patients.

>

> I still believe that something that disrupts the sleep can then lead

to the

> symptoms of fibromyalgia. This was taken from the original studies by

> Moldofsky and this is normal non-REM sleep, or stage IV delta sleep.

It's

> the real deep sleep when you are almost comatose. I mean someone could

kind

> of come in and remove a digit and you wouldn't know. You can see it

has

> these slow delta waves, rather large. This is fibromyalgia sleep

pattern.

> This is what this gentleman found and you can see that there is the

delta

> sleep, which is these larger waves, but you can see how it looks very

choppy

> because there's what they call alpha intrusion. There's an alpha

pattern

> superimposed on the delta pattern. The alpha pattern is what happens

when

> you are awake. Presumably your brain is a little more active. If you

take a

> healthy person and then give them some stimulus, try to wake them up,

you

> can see what happens. You have the normal delta pattern and the all of

a

> sudden you have this alpha intrusion. This is the fibromyalgia patient

> without any stimulus. It's almost like they are not really sleeping.

Again,

> this has not been able to be confirmed in further studies by other

groups,

> whether it was how it was done or the patient selection, is not really

> clear. I think if you think of fibromyalgia with this diagram in mind

it

> might help you a little bit when you see the patients. It's not going

to get

> you out of the office any quicker, believe me. Sometimes I see these

> patients and I think, " I could be having my spleen removed with a warm

spoon

> instead of . " These patients are very trying. I'll see three or four

new

> fibromyalgia patients in a day, I come home and by 7 o'clock I'm in

bed. I'

> ve had it. And I usually stay up until 12 or 1 o'clock reading, doing

work,

> watching the football game - which is usually about when it ends - so

these

> patients really do wear you down. It's almost like they are doing it

on

> purpose.

>

> But you can see that the central item is the stage IV sleep anomaly

which

> most often, in my experience, you can't find an identifiable cause but

> sometimes there are things that cause it. Someone who has muscle or

joint

> pain, someone who has had some physical trauma. Emotional trauma

obviously

> can cause it. Sleep apnea. But these aren't the things that I usually

see in

> my practice. In general practice you may see these things sometimes. I

> remember a case - it was one of my fellows' patients - who had some

upper

> airway obstruction, snored a lot and had some sleep apnea and he had

> secondary fibromyalgia. When he went to the sleep center they gave him

this

> C-Pak at night and his fibromyalgia, over a period of a few weeks,

cleared.

> So occasionally if you can find an underlying cause you may be able to

treat

> the patient specifically

>

>

>

>

http://www.medical-library.org/journals/secure/rheumatology_81100/fibrom

yalg

> ia_syndrome.htm

>

>

>

>