unable to fall asleep, unable to sleep, unable to stay asleep...

[Guest guest]

For what it's worth-

My first rheumatologist told me something years back that has stuck

in my mind. When I told him the elavil (generic called amitriptylin)

made me groggy in the morning, and I thought I wanted to go off it,

he told me that sleeplessness and fragmented sleep are a hallmark of

fibro and that antidepressants and sleep aids are how it's treated,

along with pain meds. He seemed to truly understand all the various

effects of ssri's, snri's, ultram (tramadol), the various narcotic as

well as synthetic pain relievers. I think we often get referred to

rheumys by our PCPs because they are supposed to understand the total

picture of all manner of arthritis, fibro, and neuropathies. Sadly,

not all rheumys assimilated their education as well as the one I had

in Savannah, GA. Because he was so good (I had to travel to South

Carolina to see him, as my insurance didn't have but one quack rheumy

on the panel in the Savannah GA area), once he got my meds dialed in,

I asked my PCP to take over my meds maintenance so as to not have to

keep paying the copays and travelling to another state for rheumy

visits, which she gladly took over.

That said, if one's PCP wants to refer one out to a rheumy for fibro,

I'd go and hear him/her out. If that rheumy doesn't seem to 'get it'

as far as fibro is concerned, ask for a referral to another, and

another, til he/she gets your meds right. Then you may be able to

have your PCP just provide maintenance scripts til your condition

warrants reassessment by the rheumy.

It is the physician's job to not only provide you pain relief, but to

help you sleep, when you have fibro. Incidentally, it should be noted

that there is belief in the medical profession that obstructive sleep

apnea and fibromyalgia often go hand in hand. I've seen this

discussed on the cpaptalk.com forum more than once. There are

fibromyalgia discussions cropping up there from time to time. So for

those who are not sleeping, have you ever been tested for obstructive

sleep apnea? Don't be shy - I have fibro, arthritis, and OSA. I slept

like a baby last night, and the night before, and the night before

that, hooked up to my bipap machine. It can work! Just gotta get the

right medical team assembled and the right combination of treatment.

One more condition that interferes with sleep more than we are aware

of is GERD, particularly silent GERD. If a person wakens frequently

at night, GERD could be the culprit. My friends at cpaptalk.com as

well as my pulmy, were on to that with my ineffective OSA treatment

in my early bipap days. Cpap and bipap therapy isn't designed to push

swollen, acid-inflamed tissue aside. So if one is on cpap therapy and

doesn't see results, GERD or silent GERD could be the culprit. I was

trying to reduce my night-time doses of GERD meds as well as

breathing meds, as my drug copays are very high, and it was suggested

(on cpaptalk.com) that I add first one for a week, and then add the

other also for a week, upload my bipap data from my fully data

capable machine, and have the group look at the results. We instantly

saw that I could simply not skip those nighttime doses of meds for my

GERD, nor for my interstitial lung disease. Both were imperative if

bipap therapy was to work. First, the GERD meds neutralized the

acid/blocked the acid production (proton pump inhibitor type meds),

so that I no longer had swollen, acid-inflamed throat tissue. The

Advair for my lungs was required to keep my swollen airways open,

from my lung disease, in order for my bipap therapy to work. Skipping

either or both rendered my bipap therapy useless. So you have to

treat the whole package of diseases if you are to truly obtain

relief!

Bottom line- read fibro pamphlets, join groups if that's how you get

your information, ask questions, ask for referrals, ask for second

opinions, read literature on authentic medical sites such as the Mayo

Clinic website, whatever it takes. If you don't take charge of your

life, nobody is going to do it for you!

girlsaylor

[Guest guest]

Forgot to add- When I had my two sleep studies, both without and with

a bipap machine, it was determined that I never enter sleep stages 3

or 4 - I had 0% both studies. Another problem found in Fibro

patients, that they seem to not enter the deep sleep stages,

therefore, do not receive the restorative sleep.

Girlsaylor

>

> For what it's worth-

>

> My first rheumatologist told me something years back that has stuck

> in my mind. When I told him the elavil (generic called

amitriptylin)

> made me groggy in the morning, and I thought I wanted to go off it,

> he told me that sleeplessness and fragmented sleep are a hallmark

of

> fibro and that antidepressants and sleep aids are how it's treated,

> along with pain meds. He seemed to truly understand all the various

> effects of ssri's, snri's, ultram (tramadol), the various narcotic

as

> well as synthetic pain relievers. I think we often get referred to

> rheumys by our PCPs because they are supposed to understand the

total

> picture of all manner of arthritis, fibro, and neuropathies. Sadly,

> not all rheumys assimilated their education as well as the one I

had

> in Savannah, GA. Because he was so good (I had to travel to South

> Carolina to see him, as my insurance didn't have but one quack

rheumy

> on the panel in the Savannah GA area), once he got my meds dialed

in,

> I asked my PCP to take over my meds maintenance so as to not have

to

> keep paying the copays and travelling to another state for rheumy

> visits, which she gladly took over.

>

> That said, if one's PCP wants to refer one out to a rheumy for

fibro,

> I'd go and hear him/her out. If that rheumy doesn't seem to 'get

it'

> as far as fibro is concerned, ask for a referral to another, and

> another, til he/she gets your meds right. Then you may be able to

> have your PCP just provide maintenance scripts til your condition

> warrants reassessment by the rheumy.

>

> It is the physician's job to not only provide you pain relief, but

to

> help you sleep, when you have fibro. Incidentally, it should be

noted

> that there is belief in the medical profession that obstructive

sleep

> apnea and fibromyalgia often go hand in hand. I've seen this

> discussed on the cpaptalk.com forum more than once. There are

> fibromyalgia discussions cropping up there from time to time. So

for

> those who are not sleeping, have you ever been tested for

obstructive

> sleep apnea? Don't be shy - I have fibro, arthritis, and OSA. I

slept

> like a baby last night, and the night before, and the night before

> that, hooked up to my bipap machine. It can work! Just gotta get

the

> right medical team assembled and the right combination of treatment.

>

> One more condition that interferes with sleep more than we are

aware

> of is GERD, particularly silent GERD. If a person wakens frequently

> at night, GERD could be the culprit. My friends at cpaptalk.com as

> well as my pulmy, were on to that with my ineffective OSA treatment

> in my early bipap days. Cpap and bipap therapy isn't designed to

push

> swollen, acid-inflamed tissue aside. So if one is on cpap therapy

and

> doesn't see results, GERD or silent GERD could be the culprit. I

was

> trying to reduce my night-time doses of GERD meds as well as

> breathing meds, as my drug copays are very high, and it was

suggested

> (on cpaptalk.com) that I add first one for a week, and then add the

> other also for a week, upload my bipap data from my fully data

> capable machine, and have the group look at the results. We

instantly

> saw that I could simply not skip those nighttime doses of meds for

my

> GERD, nor for my interstitial lung disease. Both were imperative if

> bipap therapy was to work. First, the GERD meds neutralized the

> acid/blocked the acid production (proton pump inhibitor type meds),

> so that I no longer had swollen, acid-inflamed throat tissue. The

> Advair for my lungs was required to keep my swollen airways open,

> from my lung disease, in order for my bipap therapy to work.

Skipping

> either or both rendered my bipap therapy useless. So you have to

> treat the whole package of diseases if you are to truly obtain

> relief!

>

> Bottom line- read fibro pamphlets, join groups if that's how you

get

> your information, ask questions, ask for referrals, ask for second

> opinions, read literature on authentic medical sites such as the

Mayo

> Clinic website, whatever it takes. If you don't take charge of your

> life, nobody is going to do it for you!

>

> girlsaylor

>