Re: My regimin for fibromyalgia - sleeping, RLS, tremors

[Guest guest]

Ya know it is funny you mention this becuase I have a new symptom of neuropathy

in both arms and hands!

We have no new meds but I am on a lot of what you are on as well. My sleep

study, all three of them actually, showed absolutely NO REM sleep at all. I get

Stage 3 but precious little Stage 4.

My regimin for fibromyalgia - sleeping, RLS, tremors

I was put on Lyrica for the nueropathy/nuerapthic pain. I started have spasms

body wide in June. I also had the RLS before with the tremors. I also had some

incontinence which had been fixed a year earlier.

My new Dr. was trying to change my meds and get me off some, due to the volume

of meds I was on. More and more for sleep, breathing, thyroid,

hyperaldosteroinism, low potasium, estrace, ++++. No changes made a difference

in the spasms, in fact they got worse. I was on Klonopin for sleep. Thought the

decrease in dose made them worse. NOpe. Thought the potassium low made it worse,

no.

So I had to do investigatingon my own. The only new med I changed in the last

6 months was the Lyrica. I stopped the lyrica, and dealt with some withrawl

pain.

But the spasms stopped. The tremors stopped, as did the incontinence. My nerve

senses are more alive now and I feel more. I looked up the drug and it can cause

all these things, and my doctors all say that it isn't related. Sometimes they

need to read the info before giving a drug to someone to try to help.

I am also on Mirapex for the RLS which helps. It has been shown to help with

the dopamine levels in the brain in FM. I am not sure at the low dose I am

taking, but I know it helps with the RLS.

AS for sleep, well- I take:

Atarax- allergies

Klonopin

Zanaflex- muscle relaxant

Ambien CR

Melatonin

Zonegran at night for migraine preventative

Still my sleep study showed I NEVER went into stage 3 and 4 stages of sleep,

where you heal and and have deep sleep. Pills can't get you there. No wonder we

are all sick.

Carol

[Guest guest]

My Gosh Carol,

You sound like me! I also had a sleep study done to find out that I

have both obstructive apnea and unobstructive apnea. (I stop breathing

completely for over 10 seconds 30 plus times in 30 min) I cannot get

into the level of sleep where there is repair either and my fatigue

has me bed bound most of the time. I have had a few really good days

last week and I attribute to the meds I'm on. I am not taking any of

the same meds you are but had RLS and jerks prior to going on

anything..so I don't know. Thanks for letting me know I am not alone

there.

I think if we all looked alike from this illness, they might take us

serious but you would think all of our symptoms being mirror image of

each other with few small differences would be enough! I found it

funny how Fibro is still not accepted by alot of Doctors but they

advertise medicine on television to help treat it! If they do believe

in Fibro, then why not the rest of it that seems to go hand in hand

along with it?

God Bless,

> I was put on Lyrica for the nueropathy/nuerapthic pain. I started

have spasms body wide in June. I also had the RLS before with the

tremors. I also had some incontinence which had been fixed a year

earlier.

> My new Dr. was trying to change my meds and get me off some, due

to the volume of meds I was on. More and more for sleep, breathing,

thyroid, hyperaldosteroinism, low potasium, estrace, ++++. No changes

made a difference in the spasms, in fact they got worse. I was on

Klonopin for sleep. Thought the decrease in dose made them worse.

NOpe. Thought the potassium low made it worse, no.

> So I had to do investigatingon my own. The only new med I changed

in the last 6 months was the Lyrica. I stopped the lyrica, and dealt

with some withrawl pain.

> But the spasms stopped. The tremors stopped, as did the

incontinence. My nerve senses are more alive now and I feel more. I

looked up the drug and it can cause all these things, and my doctors

all say that it isn't related. Sometimes they need to read the info

before giving a drug to someone to try to help.

> I am also on Mirapex for the RLS which helps. It has been shown to

help with the dopamine levels in the brain in FM. I am not sure at the

low dose I am taking, but I know it helps with the RLS.

> AS for sleep, well- I take:

> Atarax- allergies

> Klonopin

> Zanaflex- muscle relaxant

> Ambien CR

> Melatonin

> Zonegran at night for migraine preventative

> Still my sleep study showed I NEVER went into stage 3 and 4 stages

of sleep, where you heal and and have deep sleep. Pills can't get you

there. No wonder we are all sick.

> Carol

>

[Guest guest]

i was on ambien cr and the other meds at the time though at the time of the

sleep study along with singulair. maybe that has something to do with it.

before, i used to have trouble going to sleep, staying asleep and never a

restful sleep. now----all lights and noises, even worse wake me up. that is why

i have to sleep in another room. ;(

pain too. my mattress hurts my osteotoric hip. I have the other one padded so

much, it is not funnny. hubby doesn't tolerate humps in the sides of the

mattress.

i gues they can only live with so much.

Grant-Tolman wrote:

Ya know it is funny you mention this becuase I have a new symptom of

neuropathy in both arms and hands!

We have no new meds but I am on a lot of what you are on as well. My sleep

study, all three of them actually, showed absolutely NO REM sleep at all. I get

Stage 3 but precious little Stage 4.

[Guest guest]

Hi ,

You mentioned ambien cr. I was on 12.5 for a while and it did not help,

except for the first few days, then I constantly woke up with every sound,

like you described. My new doc changed me back to ambien 20 but of course my

ins. has changed & they wont approve it. (as they feel the max is 10mg) I,

too get tremors, more at night-( my poor husband would like a solution too)

(sigh) but sometimes during the day. I'm still in the beginning phase of

trying all the different meds (all over again it seems) I'm just so darn

frustrated.. Are you able to catch more than 5 hours of constant sleep? If

yes, please share how? Very desperate to know what to do. Just sign me

sleep deprived in Arizona.

Peace to you all,

Debbi

[Guest guest]

I actually met someone who had the same symptoms I have(all of them, plus she

was exposed to black mold. ). No one can explain her mirage of organ related

symptoms andI keep asking the drs why is this and that and is it related to this

and that. They find new stuff allthe time, esp this year. whether it is related

to bad management or deteriortaing condtion or lack of restoring sleep, or no

villi to absorb nutrients? i do not know.

I did get a medic alert e-key. It is worht the expnse. you can update it on your

computer and even put your tests results on it. now all i have to do it get the

drs. to not be afraid to open it due to the fat that they do not want their

comouters infected. what aparanoid world!

if anyone wnats to compare notes as to conditions, I can type out as best I

can(my typing isn't the best as you can see) all the conditions, and see what we

have in common. I bet it worth it . I can up load it annonmously if you want

along with my med regime.

carol

[Guest guest]

Carol, you know if we were not so fatigued already....listening to

all that would put us to sleep. It sure sounds like there is alot

of ideas and still so few real facts yet. It's just exhausting!

The mind is a powerful thing too, if someone wants to believe they

were cured from this or that....who knows what they had or even what

part of it worked for them?? The big problem with this being

understood as a disease is because there are some with clinical

depression thus fatigue etc that would benifit greatly from some

more common options. The disease is complex and so is it's remedy.

One doctor said that there are enough variables related to ME/CFIDS

that even if they came up with a " cause/cure " , it would not cure all

because although there are simularities between patients, there is

also major differences that indicate a different condition in the

same family of ammune disfunction. I don't for one min think that

it's as simple as just toxins. Nobody would say toxins are good to

have but please...too much data is still out on this subject. What

do we ever do when we become sick? Go back to basics, feed the body

nutrition, purify where we can etc. Can't hurt but it's premature to

call it a cure. If those with degrees haven't figured it out, how

errogant to say we have? Where are the facts? I think we are all

individually on our own on this one. (for now)

I for one would be interested to see your information posted if that

is what you choose to do. If only to consult with my Doctor about

points of interest or do research as I'm able for myself.

Thanks,

[Guest guest]

the dr office can call the drug compnay for your insurance and do an appeal and

get it approved for a year. they just haven't mentioned it. i used to do it all

the time for our patients. ask them.

Debbi White wrote: Hi ,

You mentioned ambien cr. I was on 12.5 for a while and it did not help,

except for the first few days, then I constantly woke up with every sound,

like you described. My new doc changed me back to ambien 20 but of course my

ins. has changed & they wont approve it. (as they feel the max is 10mg) I,

too get tremors, more at night-( my poor husband would like a solution too)

(sigh) but sometimes during the day.

[Guest guest]

man, you are a complicated and copmpact writer, !

I wish my thoughts were that clear and able to express the things you just

did. Funny thing is, I used to be so smart and be a nurse since 1977, and I

haven't worked for 15 months. It ish ard to be your own doctor when it comes to

multisystem problems.

I agree depression plays a part, a huge part, esp when one can't really

contribute. But I find the antidepressants only add to the side efffets of the

other meds and make things worse, like the serotonin release syndrome. Too m any

meds that do the same thing can cause seizures or seizure like activity.

Being on 20 meds is bad enough plus nutrients and protein supplements. Thing

is right now I can't take many of the supplements I usually take such as CoQ 10,

Ginkgo, Bromelain(helps with celiac and IBS). PLusI can't take Tylenol, advil,

my osteoporsis meds as the coumadin makes me sick to my stomach and the clot is

not even a tad better after 3 1/2 months. I need to see a vascular dr, resp. dr,

on top of it all. So I have tomake anappt with cleveland clinic. Fingers crossed

, as they do communicate with each other and they get any specialty you need

involved and it is a team effort, it will help.I will keep you posted.

AllI can say is I am still here after 30 years of this and I really dislike

eating the gluten free, no vit. k, hign protein, low carb diet. although, I have

been really bad about the suagr latley. could explainthe joint pains. The rain

hasn't helped.

I willwork on th elist.and send it when it is ready.

take care.

carol

[Guest guest]

and Carol,

I am wondering if either of you are using a C-PAP machine for your sleep

apnea? I can not even imagine not using mine now. When I was sleep

tested, they found that I stopped breathing over 100 times per hour, and

never got any real rest. That explained being a zombie. So I have been

using my C-PAP machine ever since March this year and I can honestly say

that I am doing much better. At the time they tested me, I could hardly

form a sentence or hang on to a thought long enough to say it. Now I am

writing emails on the internet. I still have trouble with my memory, but

that is even better than before. I hope you are getting a C-PAP and will

use it, if you don't already have one.

Best wishes,

Patience

[Guest guest]

and Carol,

I am wondering if either of you are using a C-PAP machine for your sleep

apnea? I can not even imagine not using mine now. When I was sleep

tested, they found that I stopped breathing over 100 times per hour, and

never got any real rest. That explained being a zombie. So I have been

using my C-PAP machine ever since March this year and I can honestly say

that I am doing much better. At the time they tested me, I could hardly

form a sentence or hang on to a thought long enough to say it. Now I am

writing emails on the internet. I still have trouble with my memory, but

that is even better than before. I hope you are getting a C-PAP and will

use it, if you don't already have one.

Best wishes,

Patience

[Guest guest]

Yes I did try the C-Pap but I could not use it and it was picked up in

the same week. In order to use that machine, you cannot sleep on your

back as your jaw drops (even when wearing whole face mask as I tried

that too). Having suffered from degenerative bone disease for

years...there is only one position I can sleep at all and that is on

my back. I was disappointed.

> and Carol,

>

> I am wondering if either of you are using a C-PAP machine for your

sleep

> apnea? I can not even imagine not using mine now. When I was sleep

> tested, they found that I stopped breathing over 100 times per hour,

and

> never got any real rest. That explained being a zombie. So I have been

> using my C-PAP machine ever since March this year and I can honestly

say

> that I am doing much better. At the time they tested me, I could hardly

> form a sentence or hang on to a thought long enough to say it. Now I am

> writing emails on the internet. I still have trouble with my memory,

but

> that is even better than before. I hope you are getting a C-PAP and

will

> use it, if you don't already have one.

>

> Best wishes,

> Patience

>

[Guest guest]

Yes I did try the C-Pap but I could not use it and it was picked up in

the same week. In order to use that machine, you cannot sleep on your

back as your jaw drops (even when wearing whole face mask as I tried

that too). Having suffered from degenerative bone disease for

years...there is only one position I can sleep at all and that is on

my back. I was disappointed.

> and Carol,

>

> I am wondering if either of you are using a C-PAP machine for your

sleep

> apnea? I can not even imagine not using mine now. When I was sleep

> tested, they found that I stopped breathing over 100 times per hour,

and

> never got any real rest. That explained being a zombie. So I have been

> using my C-PAP machine ever since March this year and I can honestly

say

> that I am doing much better. At the time they tested me, I could hardly

> form a sentence or hang on to a thought long enough to say it. Now I am

> writing emails on the internet. I still have trouble with my memory,

but

> that is even better than before. I hope you are getting a C-PAP and

will

> use it, if you don't already have one.

>

> Best wishes,

> Patience

>

[Guest guest]

i didn't persoannly have sleep apnea, just nasal congestion and snoring at

night. that makes it hard. but i didn't go into stage 3 and 4 levels of sleep.

now i sleep (unfortuanlte;y) in the quest/office/collection room. The light,

noise, movement always wakes me up. Plus I have trouible gling to sleep andhubby

has to go to sleep earlier for him to go to qwork.

Itis not easy. In fact the noise aspect and light aspect is worse.

sleep....the elusive culprit.

but I do sleep longer and better in the office. so if that has to be the way,

okay. does hurt our relationship, but then waking hubby all the imte makes him

mad too.

what a pain.

on the bright side,. my pool exercise at pt are going well. my flexiblility is

majorly increasing and strength increasing quickly. now i need a pool!

[Guest guest]

i didn't persoannly have sleep apnea, just nasal congestion and snoring at

night. that makes it hard. but i didn't go into stage 3 and 4 levels of sleep.

now i sleep (unfortuanlte;y) in the quest/office/collection room. The light,

noise, movement always wakes me up. Plus I have trouible gling to sleep andhubby

has to go to sleep earlier for him to go to qwork.

Itis not easy. In fact the noise aspect and light aspect is worse.

sleep....the elusive culprit.

but I do sleep longer and better in the office. so if that has to be the way,

okay. does hurt our relationship, but then waking hubby all the imte makes him

mad too.

what a pain.

on the bright side,. my pool exercise at pt are going well. my flexiblility is

majorly increasing and strength increasing quickly. now i need a pool!

[Guest guest]

Thankyou Carol,

You arn't different from then, you are just dealing with some

overwhelming problems. We are all on different journeys of this

illness, that much is clear to me as I have read so much from

individuals (some well meaning) that instead of gaining

information...it seems to only get more complicated. Anyone that can

take a simple rememdy to fix their problem...I am sooo happy for them.

Some will claim remedy by their own means while others might call it

a miracle...I hope we can find our way Carol!

God Bless,

[Guest guest]

Thankyou Carol,

You arn't different from then, you are just dealing with some

overwhelming problems. We are all on different journeys of this

illness, that much is clear to me as I have read so much from

individuals (some well meaning) that instead of gaining

information...it seems to only get more complicated. Anyone that can

take a simple rememdy to fix their problem...I am sooo happy for them.

Some will claim remedy by their own means while others might call it

a miracle...I hope we can find our way Carol!

God Bless,

[Guest guest]

Hi Carol,

I can with a prescription, go to the retirement hope close to my home

to use the pool (warmer than normal for us) and hot tub before and

after to help ease tention, tightness or even some levels of atophe

from not being able to move all the time. In my opinion...it's the

very best way to keep some level of excersise going in your life. Try

calling retirement homes close to you?

Question Carol (knowing your a nurse..) you say no apnea but you

snore. Doesn't that snoreing inhibit proper oxgenation that you would

normally get if not snoring? I agree again with you as is my

situation also that I can wake up after sleeping (depending on what

you consider " sleeping " to be) and get a drink to fall asleep with it

in my hand! Sleeping anywhere without notice or control is a very

easy thing to do. When I did my sleep study they told me that I was

the sleepiest person they have EVER tested! I had to sleep/nap not

just overnight but also additional 6 times throughout the next day.

They had to have someone with me to keep me awake and still wasn't

able to do that.

That Cpap would keep me awake solid as long as I wore it. (might be

viewed as a possible solution!) but I chose to send it back and glad I

did....I got billed for the whole month and given my poopy

insurance...I was in debt for months paying that off!

Like you Carol, I don't enjoy talking about the details of my illness

or life in open forum ...there are some ready to jump in and tell you

what to do with your life even if it is miss information and their

opinion. I however would be happy to email back and forth privately

with you, if you wish. I think we have alot in common.

God Bless Carol,

/Dutchie

[Guest guest]

Hi Carol,

I can with a prescription, go to the retirement hope close to my home

to use the pool (warmer than normal for us) and hot tub before and

after to help ease tention, tightness or even some levels of atophe

from not being able to move all the time. In my opinion...it's the

very best way to keep some level of excersise going in your life. Try

calling retirement homes close to you?

Question Carol (knowing your a nurse..) you say no apnea but you

snore. Doesn't that snoreing inhibit proper oxgenation that you would

normally get if not snoring? I agree again with you as is my

situation also that I can wake up after sleeping (depending on what

you consider " sleeping " to be) and get a drink to fall asleep with it

in my hand! Sleeping anywhere without notice or control is a very

easy thing to do. When I did my sleep study they told me that I was

the sleepiest person they have EVER tested! I had to sleep/nap not

just overnight but also additional 6 times throughout the next day.

They had to have someone with me to keep me awake and still wasn't

able to do that.

That Cpap would keep me awake solid as long as I wore it. (might be

viewed as a possible solution!) but I chose to send it back and glad I

did....I got billed for the whole month and given my poopy

insurance...I was in debt for months paying that off!

Like you Carol, I don't enjoy talking about the details of my illness

or life in open forum ...there are some ready to jump in and tell you

what to do with your life even if it is miss information and their

opinion. I however would be happy to email back and forth privately

with you, if you wish. I think we have alot in common.

God Bless Carol,

/Dutchie

[Guest guest]

,

I sleep mostly on my left side, but I also sleep on my back. I somehow

manage to keep my mouth shut. I have been thinking about getting a chin

strap to encourage me to keep my mouth shut, just in case I am having

problems that I just do not know about. They have a lot of different

'nasals' and masks, but it doesn't work for everyone. Sorry about that.

Maybe you can talk again with the representative that got you the

machine in the first place and something else can be done so you can

sleep on your back and still have it help you. I know I'd most likely be

dead by now if I hadn't gotten this help. Hope you find something to help.

Patience

wrote:

> Yes I did try the C-Pap but I could not use it and it was picked up in

> the same week. In order to use that machine, you cannot sleep on your

> back as your jaw drops (even when wearing whole face mask as I tried

> that too). Having suffered from degenerative bone disease for

> years...there is only one position I can sleep at all and that is on

> my back. I was disappointed.

>

>

>

> > and Carol,

> >

> > I am wondering if either of you are using a C-PAP machine for your

> sleep

> > apnea? I can not even imagine not using mine now. When I was sleep

> > tested, they found that I stopped breathing over 100 times per hour,

> and

> > never got any real rest. That explained being a zombie. So I have been

> > using my C-PAP machine ever since March this year and I can honestly

> say

> > that I am doing much better. At the time they tested me, I could hardly

> > form a sentence or hang on to a thought long enough to say it. Now I am

> > writing emails on the internet. I still have trouble with my memory,

> but

> > that is even better than before. I hope you are getting a C-PAP and

> will

> > use it, if you don't already have one.

> >

> > Best wishes,

> > Patience

> >

>

>