Re: thoughts on fibro and sleeplessness

[Guest guest]

Thank you. That was really helpful. I have sleep apnea that is not being

treated because the CPAP didn't work for me. I need to try other things now

that there are several alternatives out there. The BiPap might be good or there

is one that has moisture included that might be good. I'm in the process of

exploring the options right now.

Thanks again,

Marti

jeribelle2000 wrote:

Hi all,

Thought if this helps even one person, it is worth the time typing.

For those who cannot get restful sleep, here's what's helped me.

I have numerous health issues, which include the fibro, arthritis,

obstructive sleep apnea, GERD, ad nauseum. I take meds for all of

them. What I have found is that taking any one of my meds or

treatments out of the mix and I don't get restful sleep.

If I try to go without the amitriptylin for the fibro (due to feeling

foggy and having cognitivee memory problems), I waken with

muscle/tendon discomfort. If I ty to get off the tramadol, I have

joint and muscle pain from my arthritis, and my right hip (congenital

bilateral hip displaysia), wakens me with discomfort (sometimes it

wakens me with pain anyhow, as the joint is going south, just like my

now-artificial left hip). If I try to not take the stomach meds for

the GERD, or to cut out the nighttime dosage (due to my very high

prescription copays, and only the H2 blockers do my stomach any

good), my esophagus gets bathed in acid and is irritated and keeps me

up at night. If I don't use my bipap for my obstructive sleep apnea

(I am on bipap rather than just straight cpap, as I have interstitial

lung disease and need lower pressure on exhale), I am wakened every

time I have an event and stop breathing, which is causing low oxygen

and affects my heart and lungs. Also, if I don't take my stomach

medicine for my hiatal hernia/GERD, a bipap/cpap cannot push aside

inflamed tissue to prevent breathing problems. If my levothyroxin

dosage is too low, my body doesn't get the proper signals to breathe

when I sleep, leading to lower oxygen levels. If my levothyroxin

dosage is too high, it can affect my heart and other organs.

What I am saying is that if a certain treatment regimen isn't working

for you, keep pursuing it with your doctor(s) or find a doctor who

will check you, and treat you, for other medical conditions. I've

learned if I'm being undertreated/not treated for any or all my

medical conditions, none of them is effectively treated.

Just my 2 cents worth. And I need to credit this observation to

members of an online support group for people with obstructive sleep

apnea. They helped me, and subsequently my doctors, put together the

pieces of the puzzle.

Wishing all restful sleep,

girlsaylor

---------------------------------

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[Guest guest]

Marti, I'm sorry you've had problems with the CPAP. Have you ever

looked into an Obstructive Sleep Apnea support group? They are the

users and most knowledgeable. Did you have a heated humidifier? It's

pretty standard to prescribe that now along with your PAP machine.

Please feel free to email me if you want the names of the online cpap

support groups that have been helpful. We all just want each other to

be comfortable, have restful sleep, and reclaim our lives!

girlsaylor

> Hi all,

>

> Thought if this helps even one person, it is worth the time typing.

>

> For those who cannot get restful sleep, here's what's helped me.

>

> I have numerous health issues, which include the fibro, arthritis,

> obstructive sleep apnea, GERD, ad nauseum. I take meds for all of

> them. What I have found is that taking any one of my meds or

> treatments out of the mix and I don't get restful sleep.

>

> If I try to go without the amitriptylin for the fibro (due to

feeling

> foggy and having cognitivee memory problems), I waken with

> muscle/tendon discomfort. If I ty to get off the tramadol, I have

> joint and muscle pain from my arthritis, and my right hip

(congenital

> bilateral hip displaysia), wakens me with discomfort (sometimes it

> wakens me with pain anyhow, as the joint is going south, just like

my

> now-artificial left hip). If I try to not take the stomach meds for

> the GERD, or to cut out the nighttime dosage (due to my very high

> prescription copays, and only the H2 blockers do my stomach any

> good), my esophagus gets bathed in acid and is irritated and keeps

me

> up at night. If I don't use my bipap for my obstructive sleep apnea

> (I am on bipap rather than just straight cpap, as I have

interstitial

> lung disease and need lower pressure on exhale), I am wakened every

> time I have an event and stop breathing, which is causing low

oxygen

> and affects my heart and lungs. Also, if I don't take my stomach

> medicine for my hiatal hernia/GERD, a bipap/cpap cannot push aside

> inflamed tissue to prevent breathing problems. If my levothyroxin

> dosage is too low, my body doesn't get the proper signals to

breathe

> when I sleep, leading to lower oxygen levels. If my levothyroxin

> dosage is too high, it can affect my heart and other organs.

>

> What I am saying is that if a certain treatment regimen isn't

working

> for you, keep pursuing it with your doctor(s) or find a doctor who

> will check you, and treat you, for other medical conditions. I've

> learned if I'm being undertreated/not treated for any or all my

> medical conditions, none of them is effectively treated.

>

> Just my 2 cents worth. And I need to credit this observation to

> members of an online support group for people with obstructive

sleep

> apnea. They helped me, and subsequently my doctors, put together

the

> pieces of the puzzle.

>

> Wishing all restful sleep,

>

> girlsaylor

>

>

>

>

>

>

> ---------------------------------

> Looking for last minute shopping deals? Find them fast with Yahoo!

Search.

>

>

[Guest guest]

Girlsaylor:

Are you sure you aren't me???? lolol.....I have (and if I miss a few,

it's okay) - hypothyroidism, asthma, allergies, obstructive sleep

apnea, a hiatal hernia, sometimes indigestion, IBS,

depression/anxiety, and high blood pressure, plus the PCP feels that

I likely have fibro/CFS.......

Darlene

>

> Hi all,

>

> Thought if this helps even one person, it is worth the time typing.

>

> For those who cannot get restful sleep, here's what's helped me.

>

> I have numerous health issues, which include the fibro, arthritis,

> obstructive sleep apnea, GERD, ad nauseum. I take meds for all of

> them. What I have found is that taking any one of my meds or

> treatments out of the mix and I don't get restful sleep.

>

> If I try to go without the amitriptylin for the fibro (due to

feeling

> foggy and having cognitivee memory problems), I waken with

> muscle/tendon discomfort. If I ty to get off the tramadol, I have

> joint and muscle pain from my arthritis, and my right hip

(congenital

> bilateral hip displaysia), wakens me with discomfort (sometimes it

> wakens me with pain anyhow, as the joint is going south, just like

my

> now-artificial left hip). If I try to not take the stomach meds for

> the GERD, or to cut out the nighttime dosage (due to my very high

> prescription copays, and only the H2 blockers do my stomach any

> good), my esophagus gets bathed in acid and is irritated and keeps

me

> up at night. If I don't use my bipap for my obstructive sleep apnea

> (I am on bipap rather than just straight cpap, as I have

interstitial

> lung disease and need lower pressure on exhale), I am wakened every

> time I have an event and stop breathing, which is causing low

oxygen

> and affects my heart and lungs. Also, if I don't take my stomach

> medicine for my hiatal hernia/GERD, a bipap/cpap cannot push aside

> inflamed tissue to prevent breathing problems. If my levothyroxin

> dosage is too low, my body doesn't get the proper signals to

breathe

> when I sleep, leading to lower oxygen levels. If my levothyroxin

> dosage is too high, it can affect my heart and other organs.

>

> What I am saying is that if a certain treatment regimen isn't

working

> for you, keep pursuing it with your doctor(s) or find a doctor who

> will check you, and treat you, for other medical conditions. I've

> learned if I'm being undertreated/not treated for any or all my

> medical conditions, none of them is effectively treated.

>

> Just my 2 cents worth. And I need to credit this observation to

> members of an online support group for people with obstructive

sleep

> apnea. They helped me, and subsequently my doctors, put together

the

> pieces of the puzzle.

>

> Wishing all restful sleep,

>

> girlsaylor

>

[Guest guest]

Lol, Darlene!

I don't have the IBS (at least I don't think I do), but I do have the

diverticulosis. I see alot of people having the hypothyroidism along

with the OSA and either fibro or CFS. Makes me wonder if it isn't a

group of autoimmune conditions, or maybe we're just hyper-sensitive to

some environmental influences...

Oh, and I have the interstitial lung disease, which is a

hypersensitivity pneumonitis, like coal miner's lung or asbestosis. The

docs feel mine was triggered by my body attacking itself in response to

the proteins my pet birds shed (bird breeders' lung). All have the same

end result if not caught early before fibrosis sets in.

In fact, I've been really saddened recently about my lung group. We've

lost four members in about seven weeks to this ugly disease. It's hard

to get so close with people you only know on the internet, and have

them, one by one, pass away from pulmonary fibrosis. Thankfully my

interstitial lung disease has not developed into fibrosis, as of now,

as once it does, it is a death sentence. I just live day to day and try

to not think about it.

girlsaylor

>

> Girlsaylor:

>

> Are you sure you aren't me???? lolol.....I have (and if I miss a few,

> it's okay) - hypothyroidism, asthma, allergies, obstructive sleep

> apnea, a hiatal hernia, sometimes indigestion, IBS,

> depression/anxiety, and high blood pressure, plus the PCP feels that

> I likely have fibro/CFS.......

>

> Darlene

>

[Guest guest]

Hi Margaret,

You don't have to be diagnosed with obstructive sleep apnea to join

and read and post on the sleep apnea support groups. Two that I've

gone to are cpap.com and sleepapnea.org. Lots of good information on

both. If your physician wants you to go for a sleep study, you might

benefit from the volumes of information the people on those sites

will be happy to share. They have coached many people through all

manner of stumbling blocks and barriers to obtain and actually be

compliant with their treatment. I've found it's best to know as much

as possible about the various machines and masks available on the

market before even speaking with the physician or going for a sleep

study. I did a ton of research in the process and was armed with the

necessary info to negotiate the durable medical equipment industry.

Believe me, the suppliers of medical equipment aren't interested in

you getting the proper treatment. They are interested in getting the

largest profit they can from the insurance companies. Whether a

person gets a bare bones cpap machine without data capability (so you

can monitor the effectiveness of your therapy), or the fully data

capable machines, there is a single code for billing. Ditto for the

bipap machines, a single code for them. So the DME providers try and

foist the cheapest machines without data capability on the consumer

to increase their bottom line. So it behooves the consumer to educate

himself/herself and go armed with lots of information and questions.

Been there, fought the fight, and won!

If you have fibrosis, you should insist on a bipap machine right from

the start, for the exhale relief. I suspect your physician would

prescribe it most likely anyhow. Makes treatment so much easier. At

the least, a machine with exhale relief for those with lung

conditions seems to be necessary.

Come join us!

girlsaylor

>

> I'm not sure who started this but I would appreciate all the

answers I can get about sleep apnea.

<snip>

[Guest guest]

Hi Margaret,

I've had OSA for 2 yrs now and went from a CPAP machine with the nose

only and chin guard, the nose and mouth and my own version of just

the nose. I am now on a bi-pap machine (lower exhalation #) with a

built-in humidifier (I think its a respironic) and was recently

switched to nasal pillows, which insert into my nostrils at night and

the air goes directly thru the hose into my nose. I have to

premoisten my nose with my nose drops and then neosporin (ick, I

know), but I am truly sleeping much much better. We had to go down on

the # but my pulmonologist thinks there is something else going on

too.

I would suggest you check out those groups. Truthfully, do NOT worry

about wearing something. Think about it as keeping you alive because

that's what those machines do - keep us " non-breathers " from dying in

our sleep - or having a heart attack or a stroke.

Darlene

> >> Hi all,

> >>

> >> Thought if this helps even one person, it is worth the time

typing.

> >>

> >> For those who cannot get restful sleep, here's what's helped me.

> >>

> >> I have numerous health issues, which include the fibro,

arthritis,

> >> obstructive sleep apnea, GERD, ad nauseum. I take meds for all of

> >> them. What I have found is that taking any one of my meds or

> >> treatments out of the mix and I don't get restful sleep.

> >>

> >> If I try to go without the amitriptylin for the fibro (due to

> > feeling

> >> foggy and having cognitivee memory problems), I waken with

> >> muscle/tendon discomfort. If I ty to get off the tramadol, I have

> >> joint and muscle pain from my arthritis, and my right hip

> > (congenital

> >> bilateral hip displaysia), wakens me with discomfort (sometimes

it

> >> wakens me with pain anyhow, as the joint is going south, just

like

> > my

> >> now-artificial left hip). If I try to not take the stomach meds

for

> >> the GERD, or to cut out the nighttime dosage (due to my very high

> >> prescription copays, and only the H2 blockers do my stomach any

> >> good), my esophagus gets bathed in acid and is irritated and

keeps

> > me

> >> up at night. If I don't use my bipap for my obstructive sleep

apnea

> >> (I am on bipap rather than just straight cpap, as I have

> > interstitial

> >> lung disease and need lower pressure on exhale), I am wakened

every

> >> time I have an event and stop breathing, which is causing low

> > oxygen

> >> and affects my heart and lungs. Also, if I don't take my stomach

> >> medicine for my hiatal hernia/GERD, a bipap/cpap cannot push

aside

> >> inflamed tissue to prevent breathing problems. If my levothyroxin

> >> dosage is too low, my body doesn't get the proper signals to

> > breathe

> >> when I sleep, leading to lower oxygen levels. If my levothyroxin

> >> dosage is too high, it can affect my heart and other organs.

> >>

> >> What I am saying is that if a certain treatment regimen isn't

> > working

> >> for you, keep pursuing it with your doctor(s) or find a doctor

who

> >> will check you, and treat you, for other medical conditions. I've

> >> learned if I'm being undertreated/not treated for any or all my

> >> medical conditions, none of them is effectively treated.

> >>

> >> Just my 2 cents worth. And I need to credit this observation to

> >> members of an online support group for people with obstructive

> > sleep

> >> apnea. They helped me, and subsequently my doctors, put together

> > the

> >> pieces of the puzzle.

> >>

> >> Wishing all restful sleep,

> >>

> >> girlsaylor

> >>

>

[Guest guest]

http://www.helpguide.org/life/sleep_apnea.htm

I read your post I dont know what the question

is though ? If you have such great sleep you don't

need any treatment for the apnea, you only need

treatment if it's making you sick.

Re: thoughts on fibro and sleeplessness

I'm not sure who started this but I would appreciate all the answers

I can get about sleep apnea. I fall asleep soon after I go to bed at

night, sleep all night and wake up refreshed. During the day, IF I

sit down and close my eyes, I can fall asleep almost immediately but

never fall asleep if I am busy, driving, reaading etc. TV can put me

to sleep fast. I have always been able to fall asleep anytime,

anywhere if I wanted to. My doctor wants me to have a sleep test as

she is convinced I have sleep apnea. It is scheduled for March but I

have to admit I am upset about the prospects of having to wear a mask

on my face that is connected to a machine. Also, I do have lung

fibrosis caused by the drug AMIODORONE a few years back, but the

pulmonologist said it hasn't gotten any worse in 2 years. No better

either. Thanks for any input.

Margaret B

> Marti, I'm sorry you've had problems with the CPAP. Have you ever

> looked into an Obstructive Sleep Apnea support group? They are the

> users and most knowledgeable. Did you have a heated humidifier? It's

> pretty standard to prescribe that now along with your PAP machine.

> Please feel free to email me if you want the names of the online cpap

> support groups that have been helpful. We all just want each other to

> be comfortable, have restful sleep, and reclaim our lives!

>

> girlsaylor

>

>

>> Hi all,

>>

>> Thought if this helps even one person, it is worth the time typing.

>>

>> For those who cannot get restful sleep, here's what's helped me.

>>

>> I have numerous health issues, which include the fibro, arthritis,

>> obstructive sleep apnea, GERD, ad nauseum. I take meds for all of

>> them. What I have found is that taking any one of my meds or

>> treatments out of the mix and I don't get restful sleep.

>>

>> If I try to go without the amitriptylin for the fibro (due to

> feeling

>> foggy and having cognitivee memory problems), I waken with

>> muscle/tendon discomfort. If I ty to get off the tramadol, I have

>> joint and muscle pain from my arthritis, and my right hip

> (congenital

>> bilateral hip displaysia), wakens me with discomfort (sometimes it

>> wakens me with pain anyhow, as the joint is going south, just like

> my

>> now-artificial left hip). If I try to not take the stomach meds for

>> the GERD, or to cut out the nighttime dosage (due to my very high

>> prescription copays, and only the H2 blockers do my stomach any

>> good), my esophagus gets bathed in acid and is irritated and keeps

> me

>> up at night. If I don't use my bipap for my obstructive sleep apnea

>> (I am on bipap rather than just straight cpap, as I have

> interstitial

>> lung disease and need lower pressure on exhale), I am wakened every

>> time I have an event and stop breathing, which is causing low

> oxygen

>> and affects my heart and lungs. Also, if I don't take my stomach

>> medicine for my hiatal hernia/GERD, a bipap/cpap cannot push aside

>> inflamed tissue to prevent breathing problems. If my levothyroxin

>> dosage is too low, my body doesn't get the proper signals to

> breathe

>> when I sleep, leading to lower oxygen levels. If my levothyroxin

>> dosage is too high, it can affect my heart and other organs.

>>

>> What I am saying is that if a certain treatment regimen isn't

> working

>> for you, keep pursuing it with your doctor(s) or find a doctor who

>> will check you, and treat you, for other medical conditions. I've

>> learned if I'm being undertreated/not treated for any or all my

>> medical conditions, none of them is effectively treated.

>>

>> Just my 2 cents worth. And I need to credit this observation to

>> members of an online support group for people with obstructive

> sleep

>> apnea. They helped me, and subsequently my doctors, put together

> the

>> pieces of the puzzle.

>>

>> Wishing all restful sleep,

>>

>> girlsaylor

>>

1. While it is wonderful to share our experiences with everyone on the list as

to what treatments do and don't work for us, pls always check with your dr.

Some treatments are dangerous when given along with other meds as well as to

certain health conditions or just dangerous in general.

2. If you are in a difficult situation (doesn't matter what it is) pls don't be

afraid to ask for help. It is the first step to trying to make that situation

better.

3. To unsubscribe the e-mail is:

Fibromyalgia_Support_Group-unsubscribe

4. Also, it is not uncommon for more than one member to be feeling bad at the

same time when it comes to flares and b/c of that potentially take something

another member says the wrong way. And that includes the things that one member

may find funny (even if it's laughing at fibro itself) even though we who deal

with illness whether one such as fibro or multiple illnesses try to keep a sense

of humor.

5. Pls let's be gentle with each other, and if you are having a bad day pls let

us know so that we can do our best to offer our support.

Have a nice day everyone.